ARTHRITIS: our oF TE MazE VOLUME IV, PART 1: PUBLIC HEARINGS National Commission on Arthritis and Related Musculoskeletal Diseases REPORT TO THE CONGRESS OF THE UNITED STATES April, 1976 U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE iG 17 157; Public Health Service National Institutes of Health LSS. D. Wed National Commission on Arthritis and Related Musculoskeletal Diseases l/h. V HQ Report to the Congress of the United States Volume IV, Part 1: Public Hearings April, 1976 DHEW Publication No. 76-1153 U.S. Department of Health, Education, and Welfare Public Health Service National Institutes of Health COMMISSION MEMBERS Ephraim P. Engleman, M.D., Chairman School of Medicine University of California San Francisco, California Verna Patton Anthrop, B.S., P.H.N. Sacaton, Arizona K. Frank Austen, M.D. Robert B. Brigham Hospital Boston, Massachusetts bl 31672 Rosalind Russell Brisson Beverly Hills, California William F. Donaldson, M.D. University of Pittsburgh Pittsburgh, Pennsylvania William R. Felts, M.D. George Washington University Washington, D.C. Vivian Floyd Lewis, Ph.D. Wilberforce, Ohio Doris Melich Salt Lake City, Utah Howard F. Polley, M.D. Mayo Medical School Rochester, Minnesota Gordon C. Sharp, M.D. University of Missouri Columbia, Missouri Marlin N. Shields, R.P.T. Latter Day Saints Hospital Salt Lake City, Utah Ex-Officio: John D. Chase, M.D. Chief Medical Director Veterans Administration Washington, D.C. Ta N= : CE James R. Cowan Assistant Secretary of Defense Department of Defense Washington, D.C. William Gay, D.V.M. Associate Director National Institute of Allergy and Infectious Diseases Bethesda, Maryland Howard Jenerick, Ph.D. Special Assistant to the Director National Institute of General Medical Sciences Bethesda, Maryland Ronald LaMont-Havers, M.D. Deputy Director National Institutes of Health Bethesda, Maryland G. Donald Whedon, M.D. Director, National Institute of Arthritis, Metabolism & Digestive Diseases Bethesda, Maryland Alternate: Lt. Col. Oliver J. Lawless, MC, USA Chief, Rheumatology Science Walter Reed Army Medical Center Washington, D.C. Neil Otchin, M.D. Program Chief for Metabolic and Renal Diseases Veterans Administration Washington, D.C. William H. Batchelor, M.D., Executive Secretary Special Assistant to the Director National Institute of Arthritis, Metabolism & Digestive Diseases Bethesda, Maryland SUMMARY / VV, ARTHRITIS COMMISSION PUBLIC HEARINGS: AN OVERVIEW The National Commission on Arthritis “took to the road” on September 9, 1975, in Tucson, Arizona. At that time it had been decided to hold eight public hearings around the country but the first response seemed so gratifying and the information derived from the witnesses seemed so useful that it was decided to hold hearings instead in a period of four months. A late hearing emphasizing children with arthritis was scheduled in April, 1976. The cities for the hearings were selected somewhat at random. Geographic spread was important, of course. Preference was given also to middle size cities. Hindsight is always easy. Now that the Commission has travelled to the four corners of the U.S., one may ask why it did not choose Los Angeles, or Cincinnati, or San Francisco, or New York, or Chicago, or Washington instead of Harrisburg, San Diego and Houston. But when all is said and done, the hearing sites the Commission did go to produced an accurate picture of what it means to have arthritis in America today. The lengthy sessions, the sandwich lunches grabbed between the end of the hearing and the rush to the airport, the long wait for the planes, the hassle of getting through the luggage check, lost pieces of luggage, bumpy rides, late-check-ins into hotels, midnight dinners, all knitted the Commission members into a tight group. The feeling that developed was very much like what is generated between jurors involved in a long trial. By the end of the odyssey, the Commissioners could spot each others’ luggage on the conveyor belt, order food and drinks for one another, and, more important, help those who labored under a physical handicap. Though they came from different walks of life, the Commissioners got to like each other very much. Breakfast, for instance, was a communal affair even though each Com- missioner could have had room service. The Commission consisted of 17 members, eleven with power to vote, plus six employees of the NIH. The Chairman, Dr. Ephraim P. Engleman, Clinical Professor of Medicine and Head, Rheumatic Disease Group, University of California Medical Center, San Francisco presided with both charm and authority. He never lost his cool even when witnesses thumped fists, proposed obvious “quack” cures, said doctors do not want to cure arthritis because it would entail a great loss, or let their three-minute testimony ramble on forever. Most witnesses were pleasant, and grateful for the opportunity to tell their stories of neglect, poverty, loneliness, suffering and, most of all, despair. Witnesses generally fell into several well-defined categories: patients suffering from one or another of the 80-odd forms of arthritis, parents of children with arthritis, public figures responding to the pleas of their arthritic constituents, physicians, and associated medical personnel. The sheer volume of the testimony presented in this book illustrates the despon- dency of those afflicted by arthritis. Several questions came across more often than others. Why are there so few doctors to take care of patients with arthritis? Why does it take most of us years to find a doctor who knows some- thing about arthritis? Why is arthritis not taught at all medical schools? Why is arthritis considered a minor disease? Why are there not better drugs for arthritis? What about the high cost of medication? We need transportation to get to the doctor. Why, if we can go to the moon, can we not cure arthritis? In addition to these general questions, each hearing had its own flavor and its own problems. Tucson, Arizona Tucson was the first city visited by the Commission and the entire series of hearings almost started with a catastrophe. The evening before the hearing, several members of the Commission, and some supporting staff went to a Mexican restaurant. 1-vi They arrived late and it took some pleading for the restaurant to consent to serve food. By the time an excellent meal was over, the restaurant was deserted and the front door locked. When the group opened the door to leave, it was faced by a tall man wearing a red and black ski-mask, brandishing a gun. He looked as if he had dressed up for Halloween, but he said: “Get back in, this is for real.” Then he asked for the owner. The Commissioners retreated. Some hid under tables, some stood behind pillars, some lay on the concrete floor. Mrs. Doris Melich, an arthritis victim from Utah and one of the four public members of the Commission, stuffed her cash and her jewelry in her brassiere. Fortunately the bandit did not suspect that the diners might be loaded with cash. He contented himself with emptying the cash register—and departed with a total sum of $10, which goes to show that this crime did not pay. The hold-up contributed to the general nervousness of the Commission before this first hearing. What would they be like? Fortunately for everybody's morale, Tucson put on a model show. The local chapter of The Arthritis Foundation had made arrangements for patients in wheelchairs to come to the hearings. Patients and their friends and relatives came from all over Arizona, a state that because of its very warm and dry climate is a natural haven for arthritis victims. Long before the scheduled starting time, the hall was filled with people hobbling about on crutches and canes and maneuvering their wheelchairs into position. But in Tucson, as elsewhere, neither spectators nor witnesses consisted only of those the public believes to be typical arthritis patients. In addition to “grandma with arthritis” there were children, young people, farmers, and executives. Tucson was also a testing ground for the way subsequent hearings were to be arranged and run. The Commissioners were seated at two elevated rows of long tables at the head of the hall. Witnesses sat at a smaller table facing the Commission. Dr. Engleman usually had four witnesses come up at a time. Each witness had three minutes for testimony. Then the Commissioners had three minutes for questions, responses and cross-examination. In this manner 30 to 40 witnesses could appear at each hearing. In spite of good discipline on everybody's part, hearings often ran beyond the allotted time. 1-vii Even the Arizona climate cannot “cure” arthritis. As a matter of fact, Commissioner Verna Anthrop, a member of the Pima Indian tribe and a resident of Sacaton, Arizona, has been suffering from such a severe case of rheumatoid arthritis that she had to give up her career as a public health nurse. Another American Indian woman, Judith Blackfeather, testified in Tucson and provided evidence that both rheumatoid and osteoarthritis are particularly common among the Pima Indians. “Prevalence studies by NIH reveal that approximately 7% of Pima females and 5% of Pima males are afflicted with rheumatoid arthritis while another 4% of the males have x-ray evidence of ankylosing spondylitis” (this is much higher than the national incidence), she reported. “Even more striking is the prevalence of osteoarthritis. In spite of this frequency of arthritis among Indians, allocation of Public Health funds has given this chronic disease a very low priority.” Testimony in Tucson was given by a man who had moved to Tucson in order to seek relief for his daughter who suffers from juvenile rheumatoid arthritis. His child, puffed up by the side effects of corticosteroids, sat by in a wheelchair. Testimony submitted indicated that in spite of the fact that arthritis is a particularly grave health problem in Arizona, Tucson lacks a sufficient number of qualified rheumatologists. Many services are provided however, by The Arthritis Foundation’s Tucson Chapter. But, until two years ago when some money was provided by the Regional Medical Programs, little specialized arthritis care could be provided to Arizona’s large Indian population whose prevalence of all forms of arthritis exceeds 50% . Tucson was the only hearing site at which Commissioner Rosalind Russell Partici- pated. Miss Russell, who herself suffers from an extremely severe case of rheumatoid arthritis, responded to a man who demonstrated how he functioned in spite of severe disease: “When one is afflicted with the disease, a decision has to be made: either you are going to be a better person or less of a person. It obviously made you a better person.” Commenting on the work of the Commission, she said, “What really happens from here on is up to those of us who suffer from this terrible disease, and the parents of young children who are so sadly stricken.” Miss Russell added, “Each one of you is making a dif- ference by your visible support. But you must do much more by continuing to be dissatis- fied with things as they are, and by making known this dissatisfaction to those in government who can do something about it.” The audience responded with an ovation. One Tucson witness extolled the help provided by her dog fetching and picking up things and suggested that money be allocated for dog training. This was greeted with some 1-viii amusement and Miss Russell explained how one could pick up things just as easily with long-handled wooden pincers. “Yes,” responded the witness, “but pincers can’t keep you company.” Miss Russell was obviously ill during the Tucson hearing. The day after she returned home to Beverly Hills she was hospitalized for a period of three months, and the Com- mission had to proceed without her. San Diego, California In sunny San Diego, things were different than in Tucson. The city and nearby La Jolla make up one of America’s strong scientific communities. Testimony was heard from physicians working at the Scripps Clinic and Research Foundation of La Jolla and The University of California at San Diego. The Salk Institute also carries out major arthritis research. Since this was the only California hearing, there were witnesses from as far North as San Francisco, from Orange County — Claire Trevor, the actress — and even from as far away as Nevada. Two women who recently had undergone total hip implantation surgery travelled by bus all the way from Las Vegas. It soon appeared from the testimony that arthritis care is inadequate even in a place as well off as southern California. Dr. Nathan Zvaifler, of the University of California, at San Diego, pointed out that there are approximately 5 to 10 thousand people afflicted with rheumatoid arthritis in San Diego County. In spite of the large scientific community in the area, there is approximately one arthritis specialist for each 1,000 patients with rheumatoid arthritis. In view of the excellent scientific institutions in the area, Dr. Zvaifler suggested that San Diego could become a model site for training physicians in rheumatic disease. He felt confident that these physicians would remain and practice in the community. Particularly moving was the testimony of an attractive young woman, who said, “If you are a woman and have rheumatoid arthritis, you probably decide against having children because you would be unable to take care of them.” The Commission was heartened by Dr. Karen Koster King of the Children’s Hospital of Los Angeles, who submitted testimony on behalf of the American Academy of 1-ix Pediatrics, an organization which in the past apparently had not paid too much attention to the problem of juvenile rheumatoid arthritis. Dr. King’s statement read in part: “It has become apparent over the last 15 years that the scope of the problem of childhood arthritis is far greater than anyone had imagined. The rheumatic diseases affect a large, though unknown number of children under 16 years of age and result in significant disability, morbidity and mortality. It has been estimated for example that more children are currently crippled by juvenile rheumatoid arthritis than the total that were crippled by poliomyelitis in any ten of the pre-vaccine epidemic years. “The number of children affected by juvenile rheumatoid arthritis in any one year exceeds the number of children affected by all forms of cancer. “JRA is not the only crippling form of arthritis occurring in the early years. An equal number of children are affected by other forms of rheumatic disease often with devastating results...” Dr. King went on to explain that 25-30 percent of these children are crippled permanently, some unable to care for themselves, that 10 percent or more suffer visual impairment, and that a certain number become blind. The problem of caring for these children is acute. There is at present only one pediatric rheumatologist per 15,000 children afflicted with arthritis. (The Academy of Pediatrics estimates that there is a total of only 33 trained pediatric rheumatologists in the U.S.) The Academy favors training more such specialists as well as allied health personnel at newly founded regional pediatric arthritis centers. Harrisburg, Pennsylvania In October, the Commission travelled the East Coast. Harrisburg, Pennsylvania was the first stop. Testimony was expected from all of Pennsylvania, Washington, D.C., Maryland and Delaware. The roster of witnesses was impressive. For instance, it included three past presidents of the American Rheumatism Association, and the current president (Drs. John L. Decker, Joseph L. Hollander, Lawrence Shulman and Gerald P. Rodnan). Their ideas on how arthritis care in America could be improved was most valuable. It became quickly apparent that arthritis care in and around Harrisburg was far from perfect. As a matter of fact, the Commission was asked by Marx Leopold why they bothered to come to Harrisburg since the town is deficient in providing proper arthritis care to its citizens and, moreover, the new medical school in Hershey, Pennsylvania, is one among the one-quarter of American medical schools that still do not have a full-time rheumatologist on its staff. The coming of the Commission to Harrisburg did, however, have an immediate, useful effect. It prompted Governor Milton J. Shapp to appoint a Task Force on Arthritis in Pennsylvania. Boston, Massachusetts Boston was next. The climate of arthritis care in Boston was expected to be dif- ferent. Boston, after all, was one of the early strongholds of rheumatology in the U.S. and the tradition persists. Testimony indicated that four medical schools have strong depart- ments of rheumatology and patients who were cared for at the university-based arthritis centers seemed well satisfied. It was apparent, however, that even in Boston it took a long time for an arthritis patient to connect with a competent doctor. (Furthermore, as was pointed out by witness Dr. Edgar S. Cathcart, the city of Boston has only one acute care hospital, The Boston City Hospital, to take care of arthritis victims.) Because of the special interest of several of the centers in the Boston area, there was extensive testimony by patients suffering from systemic lupus erythematosus and from juvenile rheumatoid arthritis. Testimony in Boston also was submitted from Maine, Vermont, New Hampshire, Rhode Island and New York. Except in New York and Boston, rheumatologists in New England are few and far between. Progress, however, has been made in outlying areas, much of it sparked by funds provided by the Regional Medical Program. Dr. Charles Christian, president-elect of the American Rheumatism Association and Physician-in-Chief of the Hospital for Special Surgery in New York, came to Boston to present testimony. Like other witnesses, he stated that arthritis patients suffer both from a critical shortage of physicians and a deficiency in the knowledge of the cause and course of diseases like rheumatoid arthritis and systemic lupus erythematosus. “We are not,” Dr. Christian said, “at the position we were in the 1950’s with respect to poliomyelitis, where a systematic application of available knowledge will see the control of arthritis. We desperately need new information.” Dr. Christian favors the channeling of available funds into unified programs. Whether they are called “centers” or “program projects,” or something else is not important. “I believe there is a very important symbiosis between those who provide patient care and others in clinical and basic research.” Dr. Christian also expressed extreme concern about the “scarcity, the approaching. extinction, of Federal funds for research, training and clinical Fellowships. ...It is an impending disaster. It is a signal to young physicians that there is no future in clinical research. Without correction of Federal policy regarding training, we will be sealing off the talent that is needed for real progress.” 1-xi Denver, Colorado A special hearing was held in Denver, Colorado, for forty years the professional home of Dr. Charley Smyth who, in the words of his students and colleagues, “put arthritis on the map between Chicago and California.” The record crowd (600) alone was a tribute to his endeavors. But witnesses were not only from Denver or even the rest of Colorado. People came from as far east as Kansas, as far west as Utah and as far north as Wyoming and Montana. Only six of the Commissioners managed to get to Denver; some were absent because they were attending meetings of the Commission’s five work groups engaged in preparing position papers for use by the Commission. Among the many interesting contributions made by witnesses in Denver was that of Joe Eleanor Elliott, past president of the American Nurses Association, who stated that arthritis as a disease never had the popularity accorded to mental illness during the Kennedy years, or heart disease during the Johnson administration, or cancer during the Nixon reign. “Arthritis has continued over these years to be a major crippling disease and morbidity creating illness... It is overdue for the attention and concern now to be addressed through Public Law 93-640, the National Arthritis Act of 1974.” Dr. Mack L. Clayton, a Board Certified orthopedic surgeon, 80 percent of whose practice is devoted to arthritic surgery, underlined the fact that “rehabilitative surgery has been the greatest advance in the treatment of the crippled arthritic in the last fifteen years and is the most rapidly expanding field in orthopedic surgery...” Yet “there are relatively few positions (about 15) in the country for orthopedic surgeons to receive additional training in arthritis surgery emphasizing the team approach.” Dr. Clayton pointed out that since it will be a number of years before a “cure” is found, training in rheumatology for orthopedic surgeons must be vastly expanded. Another orthopedic surgeon, Dr. John D. Leidhold, spoke of the problem of sports injuries. Since 1969 he has been team physician for the Denver Broncos. Dr. Leidhold is also President of the National Football League Physicians Society and a member of the American Orthopedic Society for Sports Medicine. The problem of “arthritis following traumatic injury is major. Football injuries alone account for between 200,000 to 4 million injuries annually. Though many of these are minor, there were between 30,000 and 45,000 football knee operations in 1966. At present, many of these patients will develop traumatic arthritis and research is urgently needed to develop better methods of treatment as well as to educate the lay public, coaches and others in the teaching profession to the fact that early recognition of sports injuries and proper early care has the best chance to prevent traumatic arthritis.” 1-xii Milwaukee, Wisconsin After a respite of less than two weeks the Commission gathered in Milwaukee to begin the November Schedule. This hearing was designed to receive input from the Chicago area, Minnesota, Michigan, all of Wisconsin, Nebraska, and even the Dakotas. This hearing was chaired by Dr. Donaldson, since Dr. Engleman was unable to attend because of illness in his family. The meeting was opened by the Hon. Martin J. Schreiber, Lieutenant Governor of Wisconsin. He pointed out that in Wisconsin, as in many other states, health care resources are stretched far too thinly, especially when it involves specialized and sophisticated health care disciplines. Lt. Governor Schreiber was particularly concerned about the lack of a cohesive system for medical treatment and rehabilitation. “At present,” he said, “there is a tendency toward fragmentation of efforts as they deal with people. The result is too often that separate agencies work on similar problems, without coordinating their efforts. We are constantly striving to reduce this fragmentation, but it remains with us nonetheless. “The care, treatment and rehabilitation of arthritic patients is a prime example of this problem. Rheumatology remains an emerging field. The existing structures and programs were developed without the benefit of the lessons it now can provide. “The Commission would be advised to consider the necessity for funding consortia of agencies and services which... would pull together the myriad of public and private... resources in the area of rheumatic diseases.” The devastating effect arthritis has on industry was stressed in this heavily industrialized area of the country. Warner J. Schaefer, president of the Milwaukee County Labor Council AFL-CIO, pointed out that Wisconsin’s share of “the loss (economic cost of rheumatic disease) is $75 million each year... most of which comes out of the pockets of working people... We must collectively insist that ...arthritis get a high priority.” He also felt that organized labor in Wisconsin “stands ready to be part” of the plan. Mr. Ray Hulce, a Vice President of Ford Motor Company, had even more impressive national figures: 14 million days lost at work because of arthritis, $4.7 billion lost in wages and, $995 million lost in Federal, state and local income tax revenues. In Wisconsin, as elsewhere, it was the patients and their relatives who were most moving. Richard C. Edwards, a 33-year old social worker, the son of a woman crippled throughout her entire life with rheumatoid arthritis, underscored the fact that few people know about arthritis. But even more than that, “People are made of feelings, social roles, relationships and resources in addition to bones, tissues and organs. 1-xiii “My mother’s disease was diagnosed and managed in our home town at one of the world’s most famous medical centers. At no time in my growing up years did anyone reach out and be sensitive to what it was like for me having a mother crippled and deformed with arthritis. No one ever explained to me the nature of the disease. No one cared or inquired about my feelings, how I was coping or what the disease meant in my life. This was a gross, painful and unnecessary neglect of the human element, something which we must not tolerate. “In summary, I would encourage those of you charged with the responsibility of recommending funding priorities for the National Arthritis Act to include money sufficient to properly educate the American public and to provide qualified personnel sensitive to the psychosocial needs of persons afflicted by the disease arthritis.” Mrs. May Ann Lorentz came with her child, a victim of rheumatoid arthritis, and many representatives of the 60 member parent group that she had organized. There was Mr. Sam Geller, of Fargo, North Dakota, whose wife has suffered from rheumatoid arthritis for 29 out of the 31 years of their marriage. “Need I tell you of the pain-racked days and nights? The sleepless nights... the mental anxiety? ...the miles travelled seeking relief, help, solutions, or of the thousands of dollars expended for treat- ments, therapy, surgery ...in an effort to relieve the pain? “Gentlemen, I plead for your help! A nation that has the knowhow to place men in outer space ...that can construct a seven billion dollar antimissile base in my home state ...already reported obsolete ...can surely fund and support a program to help those so sorely afflicted with the crippling disease known as arthritis.” St. Louis, Missouri The St. Louis hearing was held the next day in a large auditorium belonging to St. Louis University. A big, modern mural depicted a visit John F. Kennedy made to the Pope in Rome during his short term in office. Television and radio had announced the meeting and there was a fair crowd. Many of those who came pleaded for help and complained about the care they had received, or were willing to share the news of a “miracle cure” with anyone willing to listen. Dr. Engleman was back in the chair. Witnesses had come from the neighboring midwestern states of Indiana, Nebraska and Illinois. Governor Christopher S. Bond of Missouri welcomed the Commission and underlined the necessity to establish a network of comprehensive centers across the State to take care of the 450,000 men, women and children in Missouri who have arthritis serious enough to require medical care. 1-xiv Children again were heavily represented. One ex-juvenile patient — now 25 and still suffering from arthritis — recalled her struggle with the disease from the time she was ten. Donna Holsten considered herself lucky because her family had adequate insurance. “The emotional support provided by physicians and health workers was to me and my family very helpful. Their encouragement enabled me to attend college and obtain a Master’s degree. Some arthritis sufferers are not that lucky.” Donna became a health educator and now asks the Commission to support educa- tional programs for arthritis, training programs for allied health professionals in rheuma- tology, and direct or indirect financial support for arthritis sufferers earmarked for medical and/or vocational training expenses. Dr. Bevra H. Hahn, of Washington University School of Medicine, also stressed education. “Education must be directed to the three P's — physician, paramedical personnel and patients. For all these groups, current education efforts are sadly deficient.” She illustrated the physician problem by detailing her own experience at Washington University. Future arthritis doctors are trained in post-doctoral programs. Currently there are four such fellows at Washington University. Two positions are filled each year, and last year there were 11 qualified applicants for the positions. In 1976-1977 Washington University will permanently lose one fellowship salary (previously provided through a bequest given to the Eastern Missouri Chapter of The Arthritis Foundation) and the following year the University will lose one more fellowship salary (previously provided by the Federal government). The remaining two salaries are paid for through clinical funds, and no funds will be available to train individuals for basic research in the rheumatic diseases. “Thus, in the midst of a knowledge explosion in rheumatology,” she testified, “we have an ever decreasing ability to finance training of physicians to deliver care, to teach and to pursue basic research in these diseases.” Dr. Hahn urged the Commission to 1) obtain funds to train future arthritis specialists; 2) establish rheumatic disease centers; and 3) establish an arthritis information center. Discontent at lack of funding was voiced not only by physicians. S. William Whitson, Ph.D., a young anatomist doing basic research into the ultrastructure of bone and cartilage was trained with NIH money. “For these generous opportunities 1 felt an obligation to contribute to this research area... And yet, my grant is approved but not funded. “It should be of concern to this Commission that money for research for the National Institute of Arthritis, Metabolism and Digestive Diseases, has not kept pace with other Institutes. Literally hundreds of qualified investigators, whom NIH has paid millions to train, are not able to receive funds to pursue their research ideas. 1-xv “Young scientists like myself know we can contribute, but we are rapidly becoming frustrated at continual rejection... Ladies and gentlemen, the maximum progress in research against arthritis cannot be realized if fresh ideas and new approaches go untried and untested. Protect your investment... even the projected $50 million over three years is not adequate... We have been searching for the answers to the puzzles of arthritis with limited success for a long while... Increase funding for our senior investigators, but do not forget the future senior investigators. | actively solicit your help...” Little Rock, Arkansas The Commission then had a business meeting, a hurried dinner and a late flight to Little Rock, Arkansas. The number of Commissioners had shrunk to seven. In Little Rock, the tired travellers were met by local officials of The Arthritis Foundation, who loaded them into various vehicles for a short ride to the Holiday Inn, where a convention of young blind people was in progress. The auditorium at the Holiday Inn was small as compared to the large halls in which the hearings were held in Milwaukee and St. Louis, but attendance was great. From the large cities, the Commission had come to the rural South. Testimony was heard from Arkansas, Texas, and Tennessee. The magnitude of the arthritis problem was acknowledged by both Governor David Pryor and former Governor, now Senator, Dale Bumpers. Governor Pryor complimented the Commission for inviting the average citizens to help formulate the arthritis plan. “This is the kind of citizen participation that all forms of government need in 1975. “In looking at the needs of Arkansas, the Congress will find that we have 1,500 rheumatoid arthritics... Although arthritis recognizes no age limit or barrier, the elderly citizens of Arkansas are particularly affected and stand to gain immediate relief from Federal programs. We are basically a rural state... and more than 77% of our elderly population lives in rural areas, while 65% of all licensed physicians reside in eight urban counties.” Arkansas as well as the surrounding states are particularly hampered by a shortage of specialists. The lack of arthritis specialists — not only for adults but also for children — was dramatically illustrated by Robert Dunkley and his 5-year old daughter Mary, who has had JRA since the age of two and a half. Mary developed the disease while her father was in the Army in Arkansas. She received excellent treatment from Dr. Aram Hanissian, at LeBonheur Children’s Hospital in Memphis. But in New Orleans, where the family returned after the father was discharged from the Army, there was no pediatric rheumatologist. As Mr. Dunkley said, “We found that many pediatricians and adult rheumatologists were reluctant to treat children with JRA.” Relocation to Memphis seemed the only solution. 1-xvi Dr. Aram S. Hanissian confirmed these facts. Doctors trained both in pediatrics and in arthritis are at present a rarity. According to Dr. Hanissian, there are far too few such specialists in America today to take care of a quarter million patients! Dr. Eleanor Lipsmayer, of the University of Arkansas School for Medical Sciences, testified that there is a total of five rheumatologists in the entire state. “It is impossible for them to see all patients with complications. There is, at present, no physician in the state with training in the treatment of juvenile arthritis.” Dr. David King Fletcher of Tyler, Texas also underscored the tremendous lack of trained physicians. “I am a 40-year-old physician, specialist in the treatment of arthritis... living in an east Texas town of 60,000 which has a medical service area of one million extending into Arkansas and Louisiana. After eight years in private practice in which I have examined and talked with over 6,000 patients with arthritic problems, it has become glaringly apparent that the main obstacle to proper treatment is not... lack of drugs... nor lack of research but is a lack of a physician in or near the patient's own community sufficiently trained in clinical rheumatology to have enough confidence in himself to employ the medicines and proper treatment.” Dr. Fletcher feels that those few rheumatologists that emerge from specialized training are lab oriented. Furthermore they have too narrow a training and fail to become true clinical rheumatologists. He suggested to the Commission that rheumatology programs in medical schools should establish clinical fellowships that will train physicians with the desire and capability of going into the smaller communities and directing the primary care that these patients need. Dr. Fletcher also suggested that medical students and residents should have part of their training outside a medical school in a practicing physician’s office. As elsewhere during the hearings, the desirability of having centers for the treatment of arthritis victims was discussed. In this case, Dr. Carmault B. Jackson, Jr., of San Antonio, Texas, representing the American Society of Internal Medicine, voiced some concern about the National Data Bank which is proposed as becoming part of the National Arthritis Plan. Dr. Jackson pointed out that such data banks, as well as involvement of third parties in health care delivery, may pose a problem as to the confidentiality of medical records. He urged the Commission to: “recommend that any data base system be research oriented, that variable approaches be attempted, and that all such efforts be critically evaluated regarding usefulness compared with cost.” St. Petersburg, Florida The Commissioners arrived, refreshed, in St. Petersburg on Sunday, December 7th. On Monday at 9 a.m. sharp, as usual, the Commissioners took their seats behind two long felt topped tables, and the first witnesses were ready to testify. 1-xvii Governor Reubin Askew pointed out that arthritis is one of the most common and debilitating diseases in Florida, and felt that high priority should be given to discover ways of preventing the disease or at least diagnosing it early. Gordon R. Engbretson, Ph.D., the state director of the Florida Arthritis Regional Medical Program, submitted a report on the 59 national projects supported by the RMP, for which Federal support will cease about June 30, 1976. As a matter of record, 72,000 patients received direct services during a 15 month period. Community involvement was most gratifying and according to Dr. Engbretson it “seems crucial that this community- wide approach be a central part” of the proposed new legislation. Testimony on behalf of the National Retired Teachers Association and the American Association of Retired Persons (NRTA/AARP) was submitted by Clifford Turnesa, president of the Northeast St. Petersburg Chapter. He pointed out that 80 per- cent of persons over 65 have some degree of arthritis. Many of these patients have totally erroneous beliefs about their disease. The use of so-called “cure-alls” for arthritis is enormous. “Some persons use substances of a potentially injurious nature in their guests to rid themselves of pain. Even more serious is the additional delay in seeking proper medical attention... . Arthritis is not an inevitable consequence of old age... . Until this attitude is eradicated... it is likely that many new cases will continue to go untreated by competent medical practitioners.” Mr. Turnesa also urged the development of less costly out-patient care facilities, together with a much needed specialized transportation network. He also pointed out that research into osteoarthritis, the most common form of the disease, is even more neglected than research into other forms of arthritis. Misinformed patients seemed to have their day in court in Florida. Three different and mutually exclusive cures were presented by three different patients. The despair of the audience was apparent from the fact that many arthritis sufferers took out their pencils and wrote down details of the proffered “miracle cures.” Dr. W.J. Blechman of North Miami Beach also spoke about the thriving health quack trade that robs arthritis victims of nearly $500 million yearly. Patients dominated the Florida hearing. The testimony of two patients, Ms. Marie C. Johnson suffering from a form of arthritis called scleroderma, and Ms. Carole F. Cox who suffers from psoriatric arthritis, brought tears to all those who listened. In addition to the suffering these conditions entail, the patients gave details as to the crippling economic effects of unremitting chronic disease. Florida’s two medical schools were represented. Both Dr. Jacques Caldwell of Gainesville, Florida and Dr. David S. Howell of the University of Miami, talked about the lack of adequately trained doctors for the treatment of patients suffering from arthritis. 1-xwviii Dr. Caldwell beseeched the Commission to recommend that generous funding for training and research be allocated on a truly national basis — “that funds be allocated to every medical school that has made a commitment to an arthritis research and educational program.” Dr. Howell pointed out the “bad effects of the discontinuation of the NIH training grants for the University of Miami/Jackson Memorial Hospital/Veterans Administration Hospital complex that serves the entire South Florida area.” Atlanta, Georgia Atlanta was the next stop on the December itinerary. There the Commission was joined by Mrs. Frances Mahoney, well known to health advocacy groups, who had agreed to become a special public consultant to the Commission. The Atlanta hearing was held at the Center for Disease Control, an attractive modern building located on the outskirts of Emory University. However, the building was difficult to reach, the day was cold and rainy, and parking was a major problem. This made for a thin crowd. However, the quality of testimony submitted from Georgia, Virginia, West Virginia, Washington, D.C., Alabama and the Carolinas madeup for the lack of an audience. Physician testimony again emphasized the need for more trained physicians. Dr. John A. Goldman of Emory University confirmed that close to one third of the medical schools in the United States offer no training in rheumatology. “Here in Atlanta,” he said, “we have only two Fellows in training for rheumatologic diseases, in contrast to 31 Fellows in cardiology training and 5 Fellows in cancer training.” He went on to point out that many physicians are unfamiliar with the rarer forms of arthritis such as systemic lupus erythematosus. The latter affects 10,000 victims in Georgia alone. Dr. C.H. Wilson, Jr., also from Emory, felt that the problem of “too few rheumatologists,” their poor distribution and the fact that “the research into the cause and cure of rheumatic diseases is threatened with stagnation due to shrinking support” would be best solved by strengthening the existing Arthritis Clinical Research Centers and con- “tinuing the work started by the Regional Medical Programs. Industry also had its say in Atlanta. Dr. Joseph H. Dimon Ill, a physician in private practice in Atlanta, pleaded “that a major emphasis of any legislation proposed be directed towards osteoarthritis, the non-inflammatory form of joint disease...” (Many rheumatolo- gists feel that research into the cause, prevention and cure of osteoarthritis, which primarily affects older persons, is even more neglected than research into other forms of arthritis.) Anne Murphy, Chief of Nurses of Burlington Industries, reported on the pioneering arthritis program carried out by her employer. “As an Occupational Health Nurse,” she testified, “I have over the years recognized and seen the devastation that arthritis can cause to the employees of our country... Arthritis ranks second only to heart disease as a cause of 1-xix disability, absenteeism and financial loss. To date there has been no concentrated program in the United States to help alleviate this situation.” She went on to explain the pilot program at Burlington which provides the facilities, personnel and training programs aimed at improving available arthritis care from diagnosed to back-to-work programs for employees. The program includes professional training for each industrial nurse of six selected pilot plants. In addition to actual medical care, employees learn “that something can be done (about their arthritis), that there are places to go for treatment... rather than hide their disease and permit it to continue until it gets into the crippling stage.” Ms. Murphy said that the Burlington program would have been impossible to carry out without the help of the local Arthritis Foundation Chapter, the Arthritis Clinical Research Centers of the state of North Carolina and the funds provided by the Regional Medical Programs. (Each nurse receives 70 hours of instructional training, is provided with a small library and has easy access to local medical facilities.) Like others, Ms. Murphy pleaded for the continued funding of the resources Burlington Industries calls on for its pioneering “Arthritis in Industry” project. The patients, as usual, had the greatest impact: Mrs. Nancy Cohen, a victim of systemic lupus erythematosus, started out by asking whether people had heard of leukemia, cystic fibrosis, multiple sclerosis or muscular dystrophy. Then she pointed out that “everybody would recognize these names but that few people were familiar with systemic lupus erythematosus, which is more prevalent than any of these diseases mentioned and is still the most neglected.” She went on to describe the high price of medication for lupus, the dreadful effect of some of the drugs used to date and the severe psychological problems faced by the lupus patient. A happy note was added by Mrs. Vera Earnest, Georgia's 1974 Handicapped Women of the Year. Mrs. Earnest has had rheumatoid arthritis for 40 years. When she retired from her teaching job she was declared 15 percent mobile. Mrs. Earnest told the Commission how she used her 15 percent “to make the last 35 years a delight to me and many people — the children I have helped and the watercolors that | do.” She had brought one of her paintings with her and gave it as a gift to the Commis- sion. Then cheerfully she went on describing how she paints and lives with her disease. “I paint by tying the paint brush on my hand with a rubber band. With the aid of all kinds of little gadgets on lights, doors, the water faucet, the refrigerator, the oven, I manage to function. My house is all fixed up. But most important is the understanding and love of family and friends.” 1-xx There was one thing more than anything else that disturbed Mrs. Earnest. She was not able to button and unbutton, zip and unzip her clothes. “I just go around looking like the Halloween witch,” she said, “If | could just button and unbutton!” Dr. Engleman asked, as he had on so many previous occasions, if only one thing could be accomplished through the National Arthritis Act, what Mrs. Earnest would choose. “I just don’t know,” she answered, “because each person is an individual and each person is different, and so their needs are so varied. | don’t know anybody that’s as helpless as | am or that is as crippled. I have no suggestions except, if you could give me a finger to scratch with because all the medicines | take make me itch.” Houston, Texas The Commissioners assembled for the next to last hearing in Houston, Texas on December 10, 1975. By the end of that hearing they had listened to 330 witnesses, and had received over seven hundred additional pieces of written testimony. The record also showed that 1,500 people — arthritis patients, parents, physicians, allied health personnel and community officials had attended the hearings thus far. Television, radio and newspaper coverage had been excellent everywhere. The volume of information generated at the hearings, as well as by the six work groups, was so enormous that it was decided that the Commission had to spend the next three to four months to develop a meaningful plan with which to combat arthritis in America. The Houston hearing was held in the impressive new Stouffers Hotel. All witnesses heard that morning came from Texas itself, which is not surprising in view of the size of the state. Representatives Barbara Jordan and Bob Eckardt welcomed the Commission. Ms. Jordan’s primary concern was research. She endorsed the goals set out in the 1972 Arthritis Foundation Report on the Future of Arthritis Research, and pledged her support to obtain the necessary funds, pointing out that “to do any less would be to compromise the Congressionally sanctioned goals.” The Hon. Bob Eckhardt stated that the need for education is among the most pressing concerns in the field of arthritis research and treatment. “I believe,” he continued, “that if the public were aware of the devastating effects of arthritis on people of all ages, they would be moved to urge their state and Federal representatives to act in improving conditions for the victims of the disease. 1-xxi “One woman afflicted with arthritis once said, ‘no one dies of arthritis, but oh how they sometimes wish they would.” Perhaps this statement best explains why the arthritis sufferer is the most exploited of all disease victims in the country.” The cause of arthritis victims was also effectively championed by Chick Matthews, an attorney on the faculty of South Texas College of Law. Mr. Matthews related how his girl friend, “who at 22 had won the Fred Astaire National Ballroom Dancing Championship, now two years later is crippled with rheumatoid arthritis.” He made several discoveries. The first one was that arthritis can cripple healthy, young people. “The second thing I learned about rheumatoid arthritis is how ill-equipped physicians are to detect the disease. June visited at least three doctors before her case was properly diagnosed...” The third discovery was that, “Even when properly diagnosed, neither physicians... nor their personnel... are prepared to explain anything about the disease... June was never led to believe that a treatment program would be available, if not to cure the disease, to keep it under control.” In their despair, June and her friend heard about Dr. Wyburn-Mason in London (a British physician who received much publicity because of an alleged cure he had tried on about 12 patients and whose license to practice has been temporarily suspended by his British colleagues) and now June is following Dr. Wyburn-Mason’s as yet unproven therapy. As her friend said with much conviction, “He promised us that she would be able to dance again.” Because Houston is the home of Dr. Earl Brewer, one of the leading pediatric rheumatologists in America, children suffering from various forms of the disease were particularly evident. Dr. Brewer, himself, testified “for all of America’s 20 million arthritics, but especially for the young victims. “The needs of children with arthritis have been ignored, not because the commu- nity is against children, but because no one has been for them. Adequate drugs for children with juvenile arthritis have not been studied in a systematic way by the drug companies, NIH or the FDA,” he said. Several of Dr. Brewer's patients spoke on their own behalf. No member of the commission or of the audience remained indifferent to Misty Matthews, a perfectly normal looking 11 year old, who started out by telling of a gold swimming medal she won last summer. And yet, Misty had systemic lupus erythematosus, a disease still more serious in children than in adults. “I have lupus,” Misty said as simply as if she were telling someone that she likes chocolate ice cream. “This is a disease related to arthritis. It makes me sick sometimes and | 1-xxii have headaches, stomachaches and stiff legs and my fingers hurt especially in the morning.” The mother of a “child” older than Misty also brought tears to most of those who listened. Mrs. Brumfield started thus: “I have heard it said that when a woman has three children, the first one scares her, the second one, she has learned, can sleep just as well with his feet dirty, but the third is her love. Buck is my third child. I would not say that [ love him more... but he was more lovable. | watched (my children)... grow tall and straight and healthy to adults; marry and have children of their own. “Buck was always the ‘outdoor’ type. He loved camping, hiking, swimming... water skiing. He worked on his daddy’s farm long hard hours... and is still paying dues to his union. “Last October (1974) Buck began to notice stiffness in his knees... pain and swelling quickly spread to every joint in his body... Do you know what it is like to watch one of your children go from 160 to 80 pounds, his body jerk and writhe with pain, his joints become gnarled and twisted? Like you, I liked to think that these things happen only to other people, not to you...” “We are an upper middle class family, paying our way as we go, trying not to be a drag on society. Although Buck is now receiving complete disability through Social Security, it is barely enough for minimum housing and food needs. His medical expenses have been borne by his family... We are not complaining, but I shudder to think how much a disease like this costs the citizens of the United States... It is reasonable to think that if money were set aside for research... that it would save all of us money in the long run... not to mention the relief of suffering. “We live in Beaumont (315,000 inhabitants), but still we have no rheumatologist nor arthritis clinic nor any special facilities to treat arthritis...” Mrs. Brumfield concluded by saying that she hoped that the hearings would lead to more “intensive research” and provide funds for rheumatology fellowships so that cities “like ours will have someday their own arthritis treatment center.” The witnesses in Houston, thus once more underlined the problems the Commis- sioners had listened to everywhere they went: The need for more and better doctors, facilities in which to deliver adequate care at all levels of the disease, increased funds for research into the causes of this baffling disease, and patient education so that people will be understanding of those suffering from arthritis, and arthritis victims will be able to cope with their disease. 1-xxiii Seattle, Washington A special, last hearing was held in Seattle on April 12, 1976. Mr. Stewart C. Cato, President of the Washington Chapter of The Arthritis Foundation, brought greetings from Senator Warren G. Magnuson. The Senator assured the Commission of his “firm commitment to arthritis research programs.” Senator Magnuson’s statement also spoke on children with rheumatic disease, stating that he “felt for some time that this area needed much more attention that it is presently receiving.” The Senator’s point about children was especially appropriate to Seattle whose University has one of only six specialized centers in the U.S. for the care of children with arthritis. As a matter of fact, it was excellence of the care provided there, which was responsible for the fact that the commission had scheduled this special hearing. The expertise became rapidly apparent as Dr. Engleman called on the witnesses. Dr. Jane Schaller, Director of the Children’s Arthritis Clinic of the University of Washington and Children’s Hospital, reaffirmed the magnitude of arthritis in childhood: “Much of my time is spent in caring for children afflicted with juvenile rheumatoid arthritis which is one of the most common chronic diseases of children in the United States today. About a quarter of a million American childre:: are estimated to have juvenile rheumatoid arthritis — more children than have leukemia and other childhood malig- nancies, and two to three times the number of children with diabetes. “Juvenile rheumatoid arthritis can produce crippling, blindness, growth retardation and psycho-social disability. In rare cases it can also be fatal. Although affected children can and do benefit greatly from early diagnosis and appropriate therapy and follow-up, there are very few medical specialists sufficiently expert in the recognition and management of this disease to whom these children and their parents can turn.” Dr. Schaller, one of the nation’s top experts in juvenile rheumatoid arthritis, went on to describe the different forms of the disease. “Those (children) who are damaged by the disease, live on as disabled human beings,” she said. “We have learned in recent years that the prognosis for children with rheumatoid arthritis is much better than was previously supposed. With adequate care during periods of active disease, at least 75 percent of affected children will eventually get well with no serious disability. Nonetheless, the disease may be long lasting, is extremely unpredictable in the individual patient, and may certainly be discouraging and painful for patient and family alike. 1-xxiv “Of pressing concern is that 20-25 percent of the 250,000 children with JRA — some 50-60,000 children — are affected with a severe progressive form of the disease which does not remit, is incompletely controlled by our best medical therapy, and results in severe deformity.” Dr. Schaller then discussed the need for more trained specialists in pediatric rheumatology. “A recent survey of known arthritis centers uncovered only 30 pediatric rheuma- tologists in the United States and no more than ten hospitals which might be defined as ‘centers’ for the care of children with rheumatic diseases, and 30 children’s arthritis clinics seeing more than 16 patients a month in a regular fashion. Only about 10 medical schools were found to be staffed with rheumatologists equipped to teach pediatric rheumatology to medical students or to physicians in training. Large areas of the United States are at the present time without any physicians or facilities specializing in the care of children with rheumatic diseases. Many children with rheumatic diseases in the United States are thus cared for by physicians who have had generally little education about pediatric rheumatology. “I suggest to the members of this Committee that it would be appropriate to count juvenile rheumatoid arthritis among this nation’s serious medical problems, along with rheumatoid arthritis in adults which affects five million Americans, degenerative joint disease and gout which together affect 13 million adults, and other rheumatic diseases such as systemic lupus erythematosus which also plague a significant number of our citizens... “We would like very much to be of more help to our patients, children and adults alike. We feel that their cause is a worthy one, and we feel that our government must remain ever mindful that the quality of life of its citizens is a very important matter indeed. We are grateful to this Committee for its past support, and we hope that you understand how vital these matters are for our patients and for our society. | would like now to introduce some of our patients who will tell their own stories.” Mr. Leonard Barrett took up Dr. Schaller’s invitation. He was accompanied by his six-year-old son Sean who sat in a wheelchair. “Our son Sean was born a healthy and happy baby and developed normally until the age of two and a half years,” Mr. Barrett said. “At that point, Sean developed a very persistent, high fever which was accompanied by a rash. Our family physician was perplexed, as were we, as to the nature of the problem. After a period of approximately three weeks, Sean started complaining of stiffness and soreness of various joints. At that point, our physician referred us for consultation with Dr. Jane Schaller of the Arthritis Clinic at the University of Washington. Unfortunately, Dr. Schaller confirmed the suspi- cions of our family doctor, and we were advised that Sean had become a victim of juvenile rheumatoid arthritis. 1-xxv Mr. Barrett then described the sequence of events that unfolded before them as Sean’s case was further diagnosed and treatment started. “In spite of all this, my wife and I have worked to maintain Sean’s spirits to the point that he, like you and I, can wake up each morning and look forward to the new day. Gentlemen, we ask for your assistance in providing funds which can be used to develop a cure for juvenile rheumatoid arthritis, so that perhaps other children and their parents will not have to experience the same heartache as we.” Though the Seattle hearing was geared to children, other patients with arthritis also had their say. Mr. Melvin R. Sampson, a member of the Tribal Council of the Yakima Tribe, testified that his people probably have the world’s largest prevalence rate of rheumatoid arthritis (3.4 percent of all young adult females as compared to 1.4 percent world average). Mr. Sampson was calling attention to the fact that in spite of this high prevalence of the disease, his tribe had limited access to the recognized treatment regimen for rheumatoid arthritis. “Because of the magnitude of our particular problem, we request that special funding be provided to develop a comprehensive health plan to augment our present health delivery system. Equally important is that funds would be available for implementation. “Some of the elements of the plan could be: (1) Establishment of a Physical Therapy Unit on our reservation. (2) Additional expansion of Home Health Care Program with a focus on debil- itating disease. (3) A psychological component that would work with individuals and families to assist them in coping with their illness. (4) Contracting for additional physician specialty time for evaluations and follow-up. (5) Supplementation of Indian Health Service Contract budget to eliminate the wait for recommended treatments.” At each of the hearing sites selected by the Commission, there were always a couple of patients whose plight was particularly great because they bore incredible suffering with unusual bravery. 1-xxvi In Seattle this patient was Mrs. Barbara A. Ridgeway. “l have had rheumatoid arthritis since I was ten years old. Like a lot of youngsters growing up with this disease, | did not understand the nature of it or how to cope. It is hard for any child to understand pain, why he has to use crutches, or stay in bed and can’t run like the other kids. But with the optimism of youth he looks forward to the day he gets well. “It is the adult with arthritis that soon discovers the continuous shattering effect this disease has not only on himself, but on those he loves. “In personal terms, a year after my marriage | became bedridden due to arthritic damage to my left hip. Because of constant pain and further joint disintegration a cup arthroplasty was performed. | was in the hospital six weeks, three of them spent in traction. “In 1970 the right hip became the disease’s target. Again, surgery was necessary. This time the relatively new procedure, the total hip, with its plastic prothesis was inserted. Total length of hospital stay — three weeks. “Since then I have been in the hospital three times. Once for a bleeding ulcer. A by-product of two of the prevailing methods of treating arthritis at this time, aspirin and steroids. “The other hospital stays involved major surgery on both knees to scrape destroyed cartilage. Called knee synovectomies, they are temporary measures, at best, to check the onslaught of damage. These operations occurred last summer and since that time [ have experienced increasing difficulty in my left ankle. The orthopedic doctor has indicated more surgery will be necessary soon, as that joint is almost completely gone. “The arthritis has not just relegated itself to the lower extremities. Other joints affected are my fingers, elbows, spine and shoulders. “Because of this disease we have had horrendous medical bills. The pain and limiting effects has also led me to be a less than active wife and mother to our three year old son which has, in turn, severly strained our family life. “Now, that has been the effect of arthritis on my life so far. | am now only 34 years old but frankly it scares me to think about the future and further disintegration of the joints. “And I would suggest to this panel that my case history and feelings of foreboding are not unique, if things continue as they are at present. However, if more money was spent in the areas of research and treatment of arthritis, people such as myself could look forward to a happier future and become active, functioning members of society. 1-xxvii “In conclusion, | would like to say that heretofore not much has been done for arthritis. Maybe, because it isn’t a romantic disease like cancer or heart trouble. “No, arthritis doesn’t usually kill people, it only cripples their lives.” The witnesses in Seattle, the last town on the long road taken by the Arthritis Com- mission, thus once more underlined the problems the Commissioners had listened to everywhere they went. The need for more and better doctors, facilities in which to deliver adequate care at all levels of the disease, increased funds for research into the causes of this baffling disease, public education so that people will be understanding of those suffering from arthritis, and patient education so that arthritis victims will be better able to cope with their disease. 1-xxviii ABOUT THE INDEX To assist readers in locating witness statements contained in Volume IV, the following indexes --- in addition to the individual table of contents of each hearing --- have been prepared. Volume IV is comprised of four parts; the indexes relate to the text in all four parts which can be located as follows: INDEX ENTRY » 1-175 Part # Page #, within Part. Three separate indexes have been developed. ® Alphabetical Index — which lists the last names, in alphabetical order, of all persons who testified before the Commission or whose submitted statement was received by the Commission in time for inclusion for the record. ® Geographical Index — which provides a listing according to the witnesses by City and State. eo Topical Index — which provides the page number of witness statements according to selected major topical categories. (NOTE: Major headings such as state and topical category are listed in bold face type.) ALPHABETICAL INDEX Abrams, Juanita S. Abruzzo, John L., M.D. Adams, Viola Adult Day Care Center Aldrich, Janet Almada, Rita Aloe, General Robert Anamosa, Kathleenn A., L.P.T. Anderson, David W., M.D. Anderson, Steven, M.D. Ansley, Merle C., C.R.N.A. Arakawa, Fuki, R.N. Arbeitman, Ester Armstead, Ann Armstrong, Elizabeth Armstrong, Janice Armstrong, Michael & Schlosstein, Lee, M.D. Arsneau, Mrs. Raymond Ashar, Kenneth Asmus, Harry Attarian, Peter, Ph.d. Austad, William R., M.D. Ayers, Mary L. Aylward, Dee, L.P.T. Bachman, Leonard, M.D. Bailey, Mildred L. Baker, Carol Rallangee, James M. Bankhurst, Arthur, M.D. Barber, Esther Bardenheier, Kimberly Ann Bardenheier, Virginia Barkley, Elizabeth, R.N., L.P.T. Barlow, Delores, R.N. Barnett, Harry J., L.P.T. Barnhart, Dorothy Barrett, Leonard Bartelt, Mrs. David Bartlein, Beverly Bason, Lona Bates, Carol Baumgartner Bautch, Judith C. Bayles, Theodore, M.D. Beakley, Robert Becker, Marjorie, M.D. Belanger, Mary Bell, Thomas G. 1-xxxi 83-153 2-132 3-380 4-315 2-206 1-100 4-297 4-359 1-279 2-355 3-498 1-252 4-110 4-218 3-222 4-366 1-307 1-142 1-273 2-344 1=32 3-153 4-397 3-281 2-65 1-100 3-399 2-33 1-68 1-284 3-270 3-269 4-290 3-498 4-391 3-378 1-238 3-121 3-185 1-142 3-222 3-396 3-154 2-239 3-343 4-173 3-380 2-345 Alphabetical Index Benson, Warren 1-45 Berg, Mrs. Eugene 3-223 Berg, Myrtle M., R.P.T. 3-185 Berkowitz, Sidney M.D. 4-85 Bernhard, Gerson C., M.D. 3-23 Berry, Arminta 3-500 Bethel, Rose 3-223 Bissett, Lois 4-323 Bjarnson, David 3-86 Black Feather, Judith A., R.N. 1-42 Bland, Mrs. Jerry L. 4-322 Blank, Lois 3-186 Blechman, W.J., M.D. 4-46 Blesoff, Mrs. Benjamin 2-238 Blodgett, William 2-251 Boland, Robert R. 4-353 Bond, Christopher S., Gov. 3-307 Book, Inga M. 2-134 Borg, Ruth 3-103 Borman, Corinne 2-214 Bosshard, Mina I. 3-186 Boudreau, Joseph W. 2-228 Bowker, John H., M.D. 3-500 Bowman, Gertrude H. 3-122 Boyer, John T., M.D. 1-55 Boynton, Mrs. Ardis 3-223 Bradford, Barbara 4-88 Bradley, Alice 1-306 Braqggs, Gloria 4-217 Brandt, Adeline H. 3-122 Brazel, James A. 1-125 Breaux, Mrs. James L. 4-317 Bredenbeck, Dorothy 4-124 Breitzman, Janet A. 3-169 Brest, Lewis 1-34 Brewer, Earl J., M.D. 4-401 Brewer, Earl J, M.D. 4-239 Brewer, Jeanne E. 3-394 Bridgeford, Paul, M.D. 4-12 Brodaczynski, Joseph F. 3-104 Brofman, Teresa, R.N. 2-342 Bronk, Marjorie, R.N. 4-345 Brook, Mrs. H. 4-367 Brookins, Bessie 3-224 Brotz, Mrs. Wilbur A. 3-103 Brown, James H. 3-342 Brown, Mrs. Arthur 3-123 Brown, Mrs. L. M. 1-143 Brown, Richard E. 4-368 Brown, Sidney A. 3-501 1-xxxii Brown, Thomas and Clark, Harold Brownell, John E. Bruckmann, Mrs. Ludwig Brumfield, Doris Brunke, Adeline N. Brunson, Eliza S. Buck, Gary, Ph.d. Budlong, John Buerreman, Eliza M. Buggs, Kathryn Bulin, Ann Bump, Boardman Bumpers, Dale, Senator Burk, Nancy T. Burke, Mrs. R.G. Burnett, Joshua B., M.D. Burnside, John W. Burt, Marquerite L. Bush, Lucille E. Robinson Byall, Nellie Calabro, John J., M.D. Caldwell, Jacques M.D. Callaghan, Walter Callan, Phylis Canales, Eva Cape, James F. Caplinger, Elizabeth Caplinger, Kelsey J., M.D. Carey, Judith J. Carey, Margaret Carley, David, Ph.d. Caroline, Sally S. Carter, Sue, L.P.T. Cash, Clarence Cassada, Shirley I. Castellucci, Mae Jones Caterino, Mrs. John V. Cathcart , Edgar, M.D. Cathcart, Robert H. Cato, Stewart C. Cecil, Cheryl Chadwick, David, M.D. Chaplin, David M., M.D. Chavez, Cricelda Chernov, Mimi Chew, Virginia Christian, Charles, M.D. 1-xxxiii Alphabetical Index 4-207 2-134 1-109 4-270 3-124 4-211 1-13 1-303 3-409 3-396 3-187 2+222 3-423 1-212 3-170 2-207 2-115 4-387 3-224 1-100 2-198 4-37 2-195 3-228 1-101 3-154 3-483 3-420 3-474 3-308 3-27 2-235 2-124 3-479 1-136 4-318 2-245 2-204 2-294 1-234 4-352 1-217 1-249 4-318 3-187 1-185 2-210 Alphabetical Index Clardy, BE. R., M.D. 3-526 Clark, Donald E. 1-174 Clark, Edna D. 1-101 Clark, Glenn, M.D. 3-471 Clark, Vivian 3-228 Clayton, Mack L., M.D. 2-301 Cleere, Roy L., M.D. 2-378 Clochesy, John M. 3-229 Clouthier, Fred W. 1-143 Coffman, Mrs. Lorene 1-218 Cohen, Nancy 4-166 Cohen, Nancy 4-218 Cole, Mrs. James 3-105 Collins, Lorraine 3-193 Colona, Anna 3-403 Combs, Guy S. 4-300 Condry Louie 4-352 Conley, Mary Alice 1-111 Connally, Ivy D. 4-110 Connett, Karen, 0.T. 1-211 Conrad, Paul, L.P.T. 2-126 Convery, F. Richard, M.D. 1-163 Cook, Marty 4-327 Cook, Mrs. Helen 2-209 Coover, Maxine M. 1-181 Cornwell, Susan J. 3-218 Corwin, Mary Ellen 3-502 Costello, Madalon 2-14 Counts, Grace 3-350 Couric, John M. 4-204 Cox, Amelia 3-406 Cox, Carole F. 4-59 Coyle, Sandra J. 2-263 Crain, Darrell C., M.D. 4-193 Crawford, Pauline L. 4-111 Cready, Joyce 2-122 Crouch, Emma Lee 4-342 Cudhie, Bernice W. 1-297 Cullinan, Anna, State Representative 1-118 Cummings, Norman A., M.D. 3-381 Cunningham, Laura C. 1-101 Cutler, Norma, M.S.W 2-384 Czech, Paul C. 3-170 D'Attilio, Doris 1-125 Daehn, Emma 3-339 Daniels, John 4-160 Daviduke, Eve Mae 1-89 Davies, Loree, and Hanson, Erica 3-196 Davis, Argus W. 3-397 1-xxxiv Davis, Ernestine Davis, H. Scott Davis, JoAnne Davisson, Garnet Dawson, Willis R., Jr. Deauchamp, Lydia Decker, Emmitt B. Decker, John, M.D. Dega, F.J., M.D. DeAndrade, Robin, M.D. DeBenedetti, Clifford, M.D. DeBenedictis, Marcia DeBord, Viola, R.N. DeSisto, Denise DeYoung, John C. Dikble, Paul L. Dicker, Frances R. Diden, Mary Elizabeth Dillaplain, Cindy Dilworth, Grace, R.N. Dimon, Joseph H. III, M.D. ~Docter, Jack, M.D. Doggett, Lloyd Donovan, William H., M.D. Donsen, Charles P. Dooley, Raymond N. Doolittle, Carol Doolittle, Debby, R.P.T. Dorner, Robert W., Ph.D. Dorsey, George P. Dorsey, Mary E. Dousis, Marjorie Doyle, Marilyn, M.P.H. Draine, Katherine Dry, Victoria Dulan, Elva J. R.N. Dunkley, Robert Dupuis, Mrs. Newton, J. Duxbury, Henry W. and Rosa L. Dye, Agnes Dye, Phyillis Dykey, Charles E. Earnest, Vera Easley, Ed Eckhardt, Rep. Bob Edwards, Richard C. Ehnert, Mrs. Ray BE. Ehrlich, George, M.D. 1-xxxv Alphabetical Index 4-362 3-383 1-36 4-124 4-386 3-125 4-354 2-74 1-306 4-144 1-29 3-171 4-364 2-234 3-125 4-367 4-79 3-504 4-320 4-401 4-147 1-243 4-372 1-245 2-13 1-126 1-172 2-377 3-320 1-303 1-126 1-111 4-178 4-115 3-326 2-280" 3-449 1-112 3-166 3-398 4-82 3-219 4-153 4-255 4-256 3-70 1-119 2-88 Alphabetical Index Eichenaner, John 1-103 Eisberg, Joe, R.Ph. 3-360 Elder, Nina 3-399 Elgohary, Kirilous 4-246 Ellen, Vera H. 3-126 Elliott, Jo Eleanor R.N. 2-311 Ellsworth, Dorothy 1-86 Emery, Frank E., M.D. 4-377 Engebretson, Gordon, Ph.D. 4-15 Engroff, Norma L. 4-363 Enneking, WeFeop M.D. 4-116 Ennion, Charlotte 3-126 Ennis, Ruby Nelson 3-229 Epstein, Wallace, M.D. 1-192 Ergovich, Joseph 3-348 Esquibel, Regina 1-250 Eurich, Mrs. 3-232 Evans, Betsy 1-134 Evans, Betsy 1-137 Evans, John T. 1-112 Evans, Lloyd R. M.D. 2-380 Ewald, Frederick, M.D. 2-175 Eyring, Edward J., M.D. & Campbell, W.B. 4-186 Fair, Corinne 1-41 Fair, Corinne 1-135 Fairclough, James H., Jr. 2-244 Falter, Ruth O. 3-126 Fannin, Ernest 4-399 Farley, Pam 4-310 Fassbender, Mrs. W. 3-105 Ferguson, John L., M.D. 3-351 Ferrell, Keith 4-267 Ferstl, Lorraine 3-105 Finch, William C. 3-516 Fincher, Milton T. Jr. 3-532 Fink, Chester W., M.D. 4-350 Fischer, Patricia 1-215 Fiser, Robert H., Jr., M.D. 3-533 Fletcher, David King, M.D. 3-455 Fletcher, Wellington 3-106 Floyd, Don 3-423 Foley, Eloise G. 3-233 Forbes, Cynde 3-194 Fordyce, Wilbert E., M.D. 1-311 Forsting, Marvel F. 3-379 Forsyth, Ethel 3-234 Frank, Lydia F. 3-194 1-xxxvi Fraser, Mrs. R. Frazer, Mary Lou Frederick, Richard R. Fredley, Terrie Friend, Henry C. Frye, Freda Frymark, Patricia J. Fuller, Jean F. Furlong, John and Mary Gale, Stanley B. Gall, Eric P., M.D. Gandel, Rev. Paul Garces, Mrs. P.F. Garcher, Frank S. Gares, Jennie O. Garot, Lil Garrett, Deidre S. Garry, Cynthia Garza, Mrs. Alfred Gaunt, William, M.D. Gellan, James Geller, Sam Gettleman, Fred W. Gibbon, Irene Gilbert, Virginia Gillespie, Alberta Ginther, James E. Gizelback, Nadea Glauser, Felix, M.D. Glenn, Art Gloe, Darlene Godfrey, Robert, M.D. Goebel, Louis Goehrs, Homer, M.D. Goetzel, Edward J. Goldman, Allan L., M.D. Goldman, John A., M.D. Golob, Laverne Gomez, Henry G. Gonzales, Lola C. Goodrich, B. Gordon, Marjorie Gore, Donald R. Gotshall, Germaine, R.D. Gottleib, Norman L., M.D. Graetz, Susan Graham, David T. Graham, June, L.P.T. and Maynard, Judy 1-xxxvii Alphabetical Index 1-143 3-127 4-327 4-320 3-171 3-505 3-106 3-214 2-229 4-51 1-119 1-96 3-107 1-103 4-329 3-234 4-67 «57 4-245 3-285 2-387 3-62 3-127 3-195 1-103 3-408 3-167 4-383 2-38 2-388 3-273 2+»327 1-183 4-292 2-267 3-44 4-196 3-128 4-332 4-390 3-108 2-180 3-47 2-120 4-117 2-117 3-88 4-271 Alphabetical Index Granberry, W. Malcolm, M.D. 4-321 Granick, Risa, L.P.T. 2-122 Gray, Mrs. J.A. 4-151 Graziano, Victoria 3-83 Greenleaf, Lee 1-188 Griffin, Elizabeth 1-83 Grinstead, Colette 4-330 Grisar, Carl 3-109 Grisar, Mary 3-219 Grissom, Lee 1-170 Grossman, Burton J., M.D. 3-154 Grubbe, Arlette 3-91 Gruen, Hanna 2-120 Hann, Bevra, M.D. 3-284 Halek, Mike 1-136 Hall, Arthur P., M.D. 2-241 Halloran, John K 4-397 Hamachek, Mrs. Frank 3-196 Hammer, Nona 2-270 Hanissian, Aram, M.D. 3-450 Hanni, Arlene 3-235 Hansen, Mrs. Arthur H. 3-129 Hanson, Virgil, M.D. 1-220 Hanson, Virgil, M.D. 1-261 Hardin, Ruth 1-312 Harloff, Helen L. 3-197 Harris, Michael N., M.D. 3-538 Harris, William, M.D. 2-222 Hartman, Ann 3-155 Hastings, Elizabeth 1-113 Hatfield, Marit, L.P.T. 4-274 Haugen, Clarion W. 3-235 Haugen, Mabel 3-236 Haugen, Marilyn 3-198 Hawkins, Julie Re. 4-392 Hawkins, Laura Lee, R.N. 4-360 Hayden, Paul W. 3-171 Hayes, Beatrice A. 3-110 Hayes, Jim 3-379 Hayes, Sandra 3-403 Haymond, Joanne M. 4-29 Hazel, Helen 3-506 Healey, Louis A., M.D. 1-272 Heckendorn, Ray 3-402 Heiss, Marie 3-98 Heitler, Emmett H. 2-352 1-xxxviii Helm, Don Hemment, Marguerite, R.N. Hempel, Karl H., M.D. Henehan, Sister Mary Henley, Bernice C. Henry, Nancy V. Herd, Kenneth, M.D. Herring, Marjorie Herzog, Kathleen Hess, Evelyn Hesser, Celeste Hesser, Wayne M. Hester, Janice B. Hicks, James C. Hill, Alta B. Hill, Carole Hill, Donald, M.D. Hinojosa, Consuelo G. Hinson, James Hirschberg, Ruth Hoard, Mary Grace Hoepfner, Mrs. Fred Hoffman, John C. Hollander, Ellen C. Hollander, Joseph L., M.D. Holley, Howard, M.D. Hollis, Stella M. Hollister, J. Roger, M.D. Holmberg, James Holmes, Bessie, R.N. Holsten, Donna, M.S.P.H. Honea, Ross Hood, Pat Hooten, Barbara, L.P.T. Hopp, Harley Hough, Jean Hough, Robert E. House, Charles House, Mrs. Frank Howell, David S., M.D. Huck, Vera Hudson, Bernice Huetel, Mrs. E.A. Hughes, Anne S. Hughy, Georgia Hulbert, Bernard, M.D. Hulce, Ray Humes, Lily Humphreys, Beverly Hunt, John 1-xxxix Alphabetical Index 3-236 3-172 4-347 3-408 3-405 4-336 3-216 1-94 3-506 3-129 3-319 3-354 4-220 4-385 3-401 3-339 1-50 4-393 4-11 2-113 3-198 4-349 3-390 4-373 2-8 4-179 4-364 2-353 1-16 1-76 3=327 3-540 3-507 4-361 3-130 1-143 3-199 3-100 3-237 4-39 1-113 3-508 3-237 1-104 1-210 3-385 3-56 1-126 1-294 1-66 Alphabetical Index Hunter, Dwight L. 3-454 Hutcheson, Fred A., M.D. 3-529 Hutchins, John 3-59 Imperato, Pat 4-56 Irvin, Ervine 4-401 Isakson, Mrs. Kenneth 3-131 Iscoe, Ira 4-370 Ishams, Barbara G. 3-379 Jackson, Carmault, B., M.D. 3-434 Jackson, May, M.S.E., O.T.R. 3-459 Jacok, Leslie 3-111 Jacobs, Ruth R.N. 4-90 Jacobson, Richard H. 3-84 Jagger, Margaret 3-131 Jakubowski, Althea 3-199 James, Elizabeth E. 3-508 Jensen, Francine, M.D. 4-375 Jessop, Joseph E. 1-175 Jette, Alan M. 3-65 Johnson, Marie C. 4-27 Johnson, Mrs. L.M. 3-110 Johnston, Marlin W. 4-331 Jolley, Mrs. 1-240 Jones, Lawrence A. 4-362 Jordan, Rep. Barbara 4-258 Jorgenson, Eleanor C., R.P.T. 3-200 Kaberg, Frances M. 3-388 Kaeselau, Mr. and Mrs. Jean L. 2-247 Kalish, Bernice 3-111 Kanarowski, John 3-201 Kaplan, Herbert, M.D. 2-334 Kaplan, Stephen R., M.D. 2-201 Kappelman, Mae 3-201 Kaul, Robert E. 1-23 Keaveny, Mary L. 1-144 Keller, Mrs. Robert 4-337 Kelly, Joseph F., Jr. 3-267 Keltner, Bill 3-517 Kemper, James W. 4-325 Kennedy, Mrs. Joseph M. 1-38 Kennedy, Paula W. 4-372 Kerr, Jarvis J. 2-187 Kessler, Hazel F. 3-112 Ketscher, Lottie Ruth 3-534 1-xl Kevill, Hazel Keys, Ann, L.P.T. Kiernat, Jean M., O.T.R. King, Barbara King, Bessie King, Bettie King, Karen Koster, M.D. Kinnamouth, Eura Kirchenberg, Mrs. Erwin Kirkpatrick, Billie, R.N. Klamer, Lorraine Klapstein, Mrs. Donald F. Klasky, Elinor C. Klein, Martha Gray Kline, John Kline, John L. Kloppmann, Vera A. Knoblock, Dianne Koett, Lizabeth Burns Konak, Sue Kothbauer, Joan Kowalski, Mrs. C. Krane, Stephen, M.D. Kratchmer, Dale E. Krause, Richard, M.D. Kring, Carol Kruse, Audrey J. Kryzenske, Frank Kuehn, George Kuhlman, Robert E., M.D. Kuhn, Margaret E. Kulchinsky, Aaron Kunkel, George, M.D. Kunze, Winifred Kuolt, Lorraine H. La Prath Laatsh, Mrs. L.C. Labrie, Catherine Ladd, Ernest F., Jr. Laurie, Gini Lavertu, Elizabeth Lazo, Cecelia S. Lee, Edith Leffert, Ann Leffert, Robert, M.D. Lehmann, Justus F., M.D. Leichardt, Hal 1-xli Alphabetical Index 3-132 4-334 3-156 4-55 1-144 1-122 1-178 3-509 3-113 3-510 3-202 3-132 2-264 3-157 4-156 4-215 3-173 1-104 4-389 4-373 3-238 3-114 2-169 1-138 4-31 3-204 3-173 3-168 2-148 3-290 2-135 4-100 2-11 3-214 3-216 1-308 3-132 4-58 4-221 3-315 2-167 4-395 1<105 3-387 2-269 1-280 3-384 Alphabetical Index Leidholt, John D., M.D. 2-337 Leithead, Norma 4-111 Lemke, Janet 3-77 Leonard, Jencey 4-222 Leopold, Jane, M.D. 3-293 Leopold, Marx S. 2-21 Leslie, David 1-144 Leung, Paul 1-123 Levin, Harry 2-378 Levin, Owen 3-59 Lewis, Arden I. 4-338 Liang, George C., M.D. 3-68 Lidsky, Martin D., M.D. 4-346 Lightfoot, Georgia L. 3-390 Lind, Rev Ronald He. 3-316 Linder, August J. 3-133 Link, John H. 3-173 Lipsmeyer, Eleanor, M.D. 3-426 Lister, Jack 1-184 Lockie, George, M.D. 1-216 Lohr, Adeline 3-133 Long, Clarence Edsel 1-94 Long, Frieda H. 1-114 Long, Robert S., M.D. 2-362 Longoria, Linda, P.T. 4-359 Lopez, Basillio 3-168 Lord, Michal Anne 4-398 Lorentz, Mary Ann 3-73 Lovdahl, John 3-92 Love, Rebecca K. 2-270 Lowe, Betty, M.D. 3-534 Luebbe, Mrs. C.E. 4-112 Luecke, H. E. 3-115 Lupu, Marian 1-145 Lynch, Richard J. 2-250 Madland, L. F., Ph.d. 3-134 Magiolo, Venera R., R.N. 4-360 Maier, Karl, Jr. 3-115 Malawista, Stephen, M.D. 2-216 Mangels, Ralph 4-386 Mankowski, Mr. and Mrs. Leon 2-232 Mannik, Mart, M.D. 1-290 Manning, Donna J. 3-116 Marcks, Fern 3-239 Mardon, Lillian K, et al. 1-151 Marnell, John W. 1-127 Martin, Billie 1-78 Martin, Jerome L. 2-122 1-xlii Martin, John L. Martinez, Rosalie Mashuda, Marcella Masi, A. Te., M.D. Mason, Cecile Masters, Virginia J. Mathews, J.C. Mathews, Misty Mathews, Mrs. Don Matthews, Carla Matthias, Mrs. Donald Mattiole, Mrs. Angelo Mattushek, Irma Matyi, Elmer Mauldin, Norma E. Maxwell, Roberta Mayes, Vancy M. McAlpin, Bertha, R.N. McCann, Eithne, M.D. McCann, Virginia H., R.N. McCarty, Daniel J. McCarty, Dorothy McClure, N.D., III McCoy, John M., M.D., P.C. McDuffie, Frederick C., M.D. McEwen, Currier McGillis, Joanne S. McKeone, James F. McNamara, James J., Ph.D. Meider, Elsie Meier, Walter R. Meikle, Irene Meloy, Mrs. Johnny, et al. Melvin, John L., M.D. Members of an Arthritis Class Mengel, Mary Merrill, Joseph, M.D. Messner, Ronald, M.D. Mest, Debbie Mikus, Anita Militellc, Rose Millar, Donald, M.D. Miller, Alma Rose Miller, Mrs. Clifford Miller, Mrs. T. Kenneth Mills, James P. Mills, John A., M.D. Millspaugh, Cora L. Minchen, Sara Minor, Mrs. W.P. Mollinger, L.P.T. 1-xliii Alphabetical Index 1-145 1-115 3-134 3-518 1-209 4-223 4-302 4-246 4-338 1-285 3-239 3-174 3-134 3-323 4-379 1-127 4-345 3-315 2-251 2-203 3-39 4-315 4-212 4-198 3-50 2-192 2-281 4-717 2-347 3-135 3«135 3-206 4-358 3-30 3«253 3-174 4-348 1-67 3-270 3-377 1-147 4-133 3-239 3-158 4-113 4-192 2-240 4-113 3-352 3-206 2-125 Alphabetical Index 1-xliv Mongan, Edward, M.D. 1-197 Montgomery, Betty Cranston 3-510 Montgomery, Jim 1-185 Moon, Christine Cooper 3-395 Moore, Edward E. 3-400 Moore, Nancy S. 4-117 Moritz, Mary 3-206 Morrell, Iva 3-240 Morrill, Kent W. 1-288 Morris, Alan D. 3-386 Morris, Dennis, R.P.T. 3-461 Mozar, Harold N., M.D. 1-202 Moze, Frank James 3-207 Muench, Robert 3-322 Muldoon, Frances 2-264 Muldoon, Mary F. 2-264 Muldoon, Thomas P. 2-264 Mullarky, Mrs. H. 3-207 Murphy, Anne, R.N. 4-169 Murphy, H. Carol 3-136 Murphy, Lynne Marie 2-197 Murphy, Mayor Lewis 1-12 Murphy, Mrs. Charlene 2-196 Myers, Allan, M.D. 2-70 Myers, Robert C. 4-383 Nayes, Mrs. Harold 3-117 Neal, Garaldine 2-287 Neckerman, George M. 3-137 Neiswender, Heidi, R.D. 2-58 ' Nelser, Adrienne 3-118 Nelson, Alfred C., Ph.D. 2-350 Nelson, Carl, M.D. 3-493 Nelson, Debbie 4-335 Nelson, Hazel 3-352 Nelson, Lorraine 3-207 Nelson, Mrs. Emil G. 1-127 Nelson, Mrs. Wendel 3-175 Nelson, Porter 2-374 Nelzel, Florence 3-137 Nero, Doris 3-176 Nesby, Mrs. P.H. 4-343 Nesby, Mrs. P.H. 4-371 Nesby, Pat 4-314 Neuman, C.E. 3-240 Newman, Ted 3-462 Nicholson, Janice 2-17 Niemann, Carol 3-241 Niles, Mrs. Richard D. 3-241 Northington, Carolyn, R.N. 4-396 Norton, Walter L., M.D. Nottinhamger, Dorothy Novak, Sharon Nuhn, Shirley N. O'Brien, Mrs. J.E. O'Connor, Dennis M. O'Donnell, Ruth Oodend'hal, Nancy Oglesby, Thelma A. Ohlsen, Minna Oliver, David B., Ph.D. Olson, Tonda L. Oltarzewski, Beulah orf, Norbert W. and Mary C. Orphanidys, Helen K. Orscheln, Don W. Osbourne, Jean owens, Virginia J. Paar, Karen Pachman, Lauren M Pankratz, Margaret Panush, Richard S. M.D. Parsons, James, M.D. Partenheimer, Mrs. K. Partridge, Raymond, M.D. Patzer, Esther K. Paulson, Richard Ss. Pauly, Mrs. Frances Pelt, Cora V. Pennington, Harriet R. Perkins, Aline R. Perlman, Eugene Persellin, Robert H., M.D. Pershing, Robert H. Person, Donald A. Person, Herman D., R.P.T. Petersdorf, Robert G., M.D. Peterson, Douglas Petrovich, Mildred Pfeiffer, Mildred, M.D. Pfluger, Suzie, L.P.T. Philbrick, Mrs. Ivan A. Philbrick,Mrs. I.A. Phillips, T. J., M.D. Pigg, Janis Smith Piotrowski, Mrs. Edward Pirnique, Allan S., M.D. 1-xlv Alphabetical Index 2-369 3-529 1-74 3-242 1-148 3-305 1-128 3-392 3-511 3-208 4-384 2-227 3-138 3-385 4-328 3-294 2-388 3-512 3-138 3-48 3-176 4-86 1-52 1-128 2-212 3-139 2-381 1-139 3-243 4-212 3-304 3-341 4-262 2-378 4-339 3-387 1-299 3-208 1-148 2-24 4-361 1-107 1-106 1-305 3-95 3-243 3-530 Alphabetical Index Platt, Kenneth, M.D. 2-331 Plimpton, Katharine 2-146 Podgorski, Sophia M., R.N. 2-13 Pogue, Virginia 4-387 Pohl, Evelyn 3-208 Poiley, Jeffrey E. M.D. 4-114 Pokorny, Edward J. 3-118 Poole, H.M. 2-357 Pos, Edward E. 3-140 Potschaider, Lois 3-158 Pratho, Theresa 4-395 Presswood, Becky, O.T.R. 4-373 Price, Nenon 2-289 Pryor, David, Governor 3-424 Pryor, Edith M. 4-314 Puckett, Allan 1-129 Pugh, Robert E. 4-368 Putnam, Evelyn R. 1-88 Puza, Emil A. 3-140 Pyle, Frances 4-400 Quigley, T. Richard 2-243 Radomski, Sylvia 3-140 Rahming, Mary A. 1-129 Rains, Blanche 1-308 Ramm, Pat, O.T.R. and Perry, Peggy Ww. 4-334 Ransom, Annette M. 4-326 Rather, Mary 3-141 Rau, Mrs. William C. 4-388 Raudwer, John and Edith 3-141 Raven, Mrs. Henry 3-118 Ray, David B., Jr. 3-462 Rayment, Geraldine 4-82 Raymer, Clare 3-244 Reaves, Ms. Alamo 1-71 Reed, Rowland 1-224 Reed, Walter S., Jr. 2-236 Reiten, Mrs. Ruber A. 3-141 Rennie, Christine D. 4-123 Reticker, Jane 4-115 Reuter, Peter 4-105 Reynolds, Michael, M.D. 1-199 Ricca, Louis, M.D. 4-9 Richards, Mrs. Edward T. 2-266 Richardson, Robert We. 2-79 Richmond, June 1-80 1-xlvi Ricks, Philip A. Ricks, Robert E. Ridgeway, Barbara Riggs, Gail E. Ringo, Walter Ritter, Mrs. Kenneth Roberge, Mrs. Donald Roberts, Betty S. Roberts, Robert J. Robertson, Judy, L.P.T. Robinson, Dwight R. Robinson, Ron Rocco, Barbara Rockabrand, Betty F. Rodnan, Gerald Roebuck, Ben E. Rogahn, Florence Romanowski, Arnold P. Rosenke, Mrs. Earl Ross, Bernard A. Ross, Harriet B. Ross, S. William, M.D. Roth, Sanford, H., M.D. Rothfield, Naomi, M.D. Rothstein, Barbara Royster, Jeanne Rubenstein, Herbert M., M.D. Rubenstein, Herbert M., M.D. Rubin, Lawrence M., D.P.M. Ruddy, Shaun, M.D. Rudi, Milton H. Rudkin, Mrs. Gordon Rueppel, Eunice A. Ruffalo, Mrs. Frank D. Runholm, Eugene A. Runyon, Robert V. Ryall, Mrs. E.V. Ryan, Michael Ryno, L.K. Ryseff, Mrs. Joanne Sabo, Louis A. Sack, Kenneth C., M.D. Saddler, Mrs. Owen L. Sage, Mrs. John F. Saldana, Alice Sales, Louis M., M.D. Salmon, J. Warren Sampson, Melvin 1-xlvii Alphabetical Index 4-400 4-396 1-277 1-27, 3-514 3-182 3-251 4-280 4-319 4-328 2-237 3-535 4-253 3-119 2-59 3-477 3-244 2-236 3-143 3-266 2-247 3-521 1-149 2-219 2-261 4-213 3-160 3-161 3-32 4-188 3-353 3-143 3-120 3-145 3-162 2-356 3-162 3-268 4-392 1-292 1-48 4-316 2-381 3-245 4-369 4-118 2-43 1-268 Alphabetical Index Sanders, Louis, M.D. 3-432 Sandson, John, M.D. 2-182 Sapp, John P. 4-322 Saris, Jeanette 4-24 Sarlls, Wilbur 1-25 Satterfield, John V., M.D. 3-522 satterfield, W. W. 3-495 Sauer, Reverend W.P. 3-221 Sauer, W.P. 3-246 Scales, Zilphen 4-319 Scales, Zilphia E. 4-361 Scarbrough, Christia F. 4-96 Schaller, Jane, M.D. 1-236 Scharr, Adela R. 3-345 Schenewerk, Carla, O.T.R. 3-334 Scheuring, Mrs. Joseph 1-130 Schindel, Almira 1-131 Schleich, Barbara 2-281 Schlevensk, James 3-183 Schlorff, Velma 4-177 Schmid, Frank R., M.D. 3-81 Schmidt, Claudia 4-225 Schmidt, Sylvia E. 3-209 Schmit, Audrey 3-146 Schott, Donna 3-147 Schott, Richard 2-186 Schreiber, Martin J., Lt. Governor 3-21 Schwartz, Walter O. 3-146 Schwartzenbach, John R., M.D. 4-385 Schweiker, Sen. Richard S. 2-131 Scott, Mrs. Lee 1-63 Seamans, Carol 3-210 Sears, Ethel E. 3-399 Seelhorst, F. Elaine 3-34 Seide, Capt. Susan 4-382 Sell, Mrs. Eugene 3-147 Sells, Robert K. 3-522 Selzer, John W. 3-147 Sessums, John V., M.D. 4-400 Sether, Mariana 2-385 Seward, Jan, L.P.T. 4-365 Seylor, Lou 4-353 Shade, Evelyn 3-248 Shaefer, Werner 3-61 Sharp, John T., M.D. 4-355 Shimondle, Ruth 1-253 Shindel, William H., M.D. 3-457 Shinnerer, William and Virginia 1-115 Shriner, Grace A. 1-313 Shulman, Lawrence, M.D. 2-39 Shultz, R. T., M.D. 3-363 1-xlviii Shur, Peter H., M.D. Simkin, Peter A., M.D. Singleton, Lt. Col. Charles M. Singleton, Mrs. J.C. Sisk, Charles, M.D. Sisneroz, Anita Skeith, Maurice D., M.D. Slepian, Ronald P. Smiley, Donald, M.D. Smith, Basil A. Smith, David Wayne Smith, Gayle Green, O.T.R. Smith, Kenneth Smith, Lovetta, R.N. Smith, Morris B. Smith, Relda Smith, Verle H. Smoote, Aurora S. Snell, Jeanne Snyder, Martin, M.D. Solberg, Dorothy F. Solem, Louise Spangenberg, Ed Sparling, Nancy, R.N. Speen, Bernice R. Spinney, Viola Spiro, Joanna H., and Hayden, Mary Claire Spriggs, John T., M.D. Sproge, Alice Squires, James C. St. Aubin, Wilfred Stahl, Beatrice M. Standorf, Claudia Stark, Lewis Stark, Mary Rita Stechmesser, H. Stegman, Olivia Steigerwald, James C., M.D. Stenger, John G. Steverwald, Viola, R. N. Stillman, J. Sydney, M.D. Strande, Robert Strawbridge, Karen Strawser, Norman Stroup, Clair Stuart, Mrs. Amparo Stude, Norma Stuntz, Cekra Y. Sturdevant, Roger Sudbrink, Arlinda Summer, Mrs. Howard L. Sunde, Mrs. Jack 1-xlix Alphabetical Index 2-265 1-275 4-376 4-365 3-310 1-108 1-289 4-214 4-259 3-541 1-20 1-287 3-378 4-282 1=132 3-515 3-148 4-381 3-348 1-116 3-217 2-128 3-148 1-251 2-225 3-248 3-210 1-58 1-87 1-296 3-64 3-120 3-72 3-184 3-162 3-249 2=113 2-315 3-211 3-163 2-149 3-249 2-288 2-23 1-133 1-133 3-148 4-344 3-271 3-250 3-178 3-218 Alphabetical Index Sundstrom, Walter R., M.D. 3-78 Susko, Delores 1-115 Sussman, Sam 4-102 Suttle, Cecil J. 4-354 Sweeney, Mrs. Lester 3-250 Sweeney, Patricia and Thomas 2-246 swenson, Gloria 3-148 Tajeda Robert A. 4-333 Talbott, John H., M.D. 4-119 Tally, Pat, M.S.W. 4-243 Taylor, Helen 3-524 Testerman, Elsie Marie 1-139 The Hondo Neighborhood staff 4-318 Thielmann, Dorothy 3-179 Thomas, Esther 3-401 Thompson, Mrs. Howell 3-531 Thorson, Mrs. Raymond 3-121 Tierney, Barbara, R.N. 4-344 Tighe, Cordelia J. 1-304 Tinsley, Austin R. 3-355 Tisinger, Mary J. 4-398 Tivanovak, John J. 3-212 Toone, Elam, M.D. 4-208 Torinus, Jack B. 3-163 Tourtellotte, Charles D., M.D. 2-43 Townes, Alexander S., M.D. 3-485 Trachluh, Maria 3-121 Traster, Mrs. Floyd 3-349 Treacy, William 3-97 Trevor, Claire 1-191 Trulock, Frances ; 1-134 Trythall, Mrs. D. 3-149 Tull, Robert 3-332 Tunnell, B. Travis, Ph.D. 3-490 Turner, Robert, M.D. 4-210 Turnesa, Clifford 4-48 Tyson, Eraday 3-537 Udall, Rep. Morris K. 1-123 Underwood, Carl P. 3-251 Utt, Richard D. 1-117 Uttadino, Joan 4-355 Valencia, Rosemary 1-108 Van Rossum, Marie 3-221 Vardack, Maxine 2-261 Vasquez, Rosario 4-396 1-1 Vaughan, John, M.D. Vietmeier, Raymond H. Vig, Rosalyn J., R.N. Viozzi, Francies J., M.D. Vitullo, Orlando vVodde, Russell Vogt, Howard D. Voigt, Christine Volz, Robert, M.D. Vosicky, Mrs. C. Voy, Ruth V. Wabick, Mrs. C. Walker, Joyce M. Wallace, Lois Waller, Gordon, M.D. Walters, Richard Ward, Harold Ward, Harry, M.D. Ward, John R. M.D. Warner, Mrs. W.C. Warner, Roger J. Wathen, Nitak Watson, Marcine Weathers, Allison Weaver, Frank, M.D. Weaver, Jo Webb, Mrs. Gerline. Wedgwood, -Ralph J., M.D. Weiss, Paul Weiss, Sandy Welch, K. S. Welch, Kathleen S. Welch, Louis Welch, Richard B., M.D. Wells, John H., M.D. Wesley, Sister Suzanne West, Charles E. White, JoAnne, R.N. White, Robert M., II Whiting, Laura Whiting, Patricia S. Whitson, S. William, Ph.D. Wick, Arthur Ge. Wickert, Mrs. W. Wiegand, Annette J. Wiegard, Annette J. wild, James H. Lt. Col. Wilda, Mrs. Ray Williams, Ida M. Alphabetical Index 1-165 3-344 3-179 2-111 2-230 4-125 4-94 3-180 1-54 3-149 3-150 1-109 1-304 3-525 3-281 2-385 3-359 2-297 2-291 1-124 3-442 4-307 3-350 1-213 u-26U 1-214 4-358 1-259 1-246 3-212 3-152 3-151 4-394 1-224 3-297 3-335 1-309 2-102 3-362 2-388 4-340 3-317 3-152 3-218 3-213 3-214 4-345 1-116 3-397 Alphabetical Index williams, Minnie R. 4-358 Williams, Minnie R. 4-401 Williams, Norman, Mrs. 3-515 Willkens, Robert F., M.D. 1-267 Wilske, Kenneth R., M.D. 1-285 Wilson, Colin H., M.D. 4-143 Wilson, Congressman Bob 1-172 Wilson, Eunice 2-239 Wilson, Mayor Peter 1-168 Wilson, Robert J. 3-181 Wilson, T.E. III, M.D. 3-466 Wingate, Edith A. 1-124 Winger, Barbara 2-109 Winn, Audrey C. 4-369 Winters, Henry E. 4-121 Wiss, Mrs. Bernard 3-401 Wolf, Virginia, R.N. 4-363 Woods, Bill 1-140 Worby, Evelyn S. 3-251 Wright, Alpha Blair 1-109 Wright, Willie Mae 4-391 Wruck, Chris 3-181 Wynn, Doris 3-401 Wynne-Roberts, C. Rosales 3-299 Yoder, Anna F., R.N. 2-248 Yost, William A., Jr. 3-164 Young, Paul, M.D. 4-201 Zahorik, Janet 3-42 Zeiders, Robert, M.D. 3-298 Zeltwanger, Mrs. Richard 3-383 Ziolkowski, Pearl 3-252 Zolorski, Eleanor 3-182 Zuckner, Jack, M.D. 3-275 Zuege, Robert C. 3-152 Zuniga, Magdalena 4-360 Zvaifler, Nathan, M.D. 1-161 1-lii TOPICAL INDEX Centers Bartlein, Beverly Bjarnson, David Boland, Robert R. Bond, Christopher S., Gov. Calabro, John J., M.D. Cathcart , Edgar, M.D. Cecil, Cheryl Clark, Glenn, M.D. Condry Louie Conrad, Paul, L.P.T. Coover, Maxine M. Crain, Darrell C., M.D. Cullinan, Anna, State Representative Decker, Emmitt B. Decker, John, M.D. Dunkley, Robert Duxbury, Henry W. and Rosa L. Ehnert, Mrs. Ray B. Ehrlich, George, M.D. Eisberg, Joe, R.Ph. Ewald, Frederick, M.D. Fincher, Milton T. Jr. Fiser, Robert H., Jr., M.D. Gall, Eric P., M.D. Gaunt, William, M.D. Ginther, James E. Glauser, Felix, M.D. Gottleib, Norman L., M.D. Grissom, Lee Hanissian, Aram, M.D. Hanson, Virgil, M.D. Heitler, Emmett H. Howell, David S., M.D. Hutchins, John Jackson, Carmault, B., M.D. Kaplan, Herbert, M.D. Ketscher, Lottie Ruth King, Bettie Kryzenske, Frank Leung, Paul Levin, Owen Lopez, Basillio Lowe, Betty, M.D. Malawista, Stephen, M.D. McCoy, John M., M.D., P.C. McEwen, Currier Meloy, Mrs. Johnny, et al. 1-liii Topical Index Mills, James P. 4-192 Nelson, Carl, M.D. 3-493 Novak, Sharon 1-74 O'Connor, Dennis M. 3-305 Paulson, Richard S. 2-381 Rodnan, Gerald 2-59 Saddler, Mrs. Owen L. 2-381 Sales, Louis M., M.D. 4-118 Schleich, Barbara 2-281 Seylor, Lou 4-353 Sharp, John T., M.D. 4-355 Shindel, William H., M.D. 3-457 Shulman, Lawrence, M.D. 2-39 Shultz, R. T., M.D. 3-363 Smiley, Donald, M.D. 4-259 Suttle, Cecil J. 4-354 Talbott, John H., M.D. 4-119 Townes, Alexander S., M.D. 3-485 Turner, Robert, M.D. 4-210 Udall, Rep. Morris K. 1-123 Uttadino, Joan 4-355 Warner, Mrs. W.C. 1-124 Wedgwood, Ralph J., M.D. 1-259 White, Robert M., II 3-362 Wilson, Mayor Peter 1-168 Wingate, Edith A. 1-124 Winters, Henry E. 4-121 Wynne-Roberts, C. Rosales 3-299 Community Programs and Outreach Sether, Mariana 2-385 Walters, Richard 2-385 Funding Adams, Viola 3-380 Anamosa, Kathleenn A., L.P.T. 4-359 Armstrong, Janice 4-366 Barnhart, Dorothy 3-378 Belanger, Mary 3-380 Black Feather, Judith A., R.N. 1-42 Bradley, Alice 1-306 Brazel, James A. 1-125 Breitzman, Janet A. 3-169 Brook, Mrs. H. 4-367 Brown, Richard E. 4-368 Brumfield, Doris 4-270 1-liv Brunson, Eliza S. Burke, Mrs. R.G. Caterino, Mrs. John V. Costello, Madalon Cummings, Norman A., M.D. Czech, Paul C. D*Attilio, Doris Davis, Ernestine Davis, H. Scott Dega, F.J., M.D. DeBenedictis, Marcia DeBord, Viola, R.N. Dibble, Paul L. Dimon, Joseph H. III, M.D. Docter, Jack, M.D. Doggett, Lloyd Dooley, Raymond N. Dorsey, Mary E. Engroff, Norma L. Farley, Pam Forsting, Marvel F. Friend, Henry C. Gandel, Rev. Paul Goldman, John A., M.D. Hawkins, Laura Lee, R.N. Hayden, Paul W. Hayes, Jim Hemment, Marguerite, R.N. Hollander, Ellen C. Hollis, Stella M. Holmberg, James Holmes, Bessie, R.N. Hooten, Barbara, L.P.T. Hulbert, Bernard, M.D. Humes, Lily Iscoe, Ira Ishams, Barbara G. Jones, Lawrence A. Jordan, Rep. Barbara Kaeselau, Mr. and Mrs. Jean L. Kelly, Joseph F., Jr. Kennedy, Mrs. Joseph M. Kennedy, Paula W. Kloppmann, Vera A. Konak, Sue Kruse, Audrey J. Laurie, Gini Leichardt, Hal Leopold, Marx S. Lind, Rev Ronald H. Link, John H. 1-lv Topical Index 4-211 3-170 2-245 2-14 3-381 3-170 1-125 4-362 3-383 1-306 3-171 4-364 4-367 4-147 1-243 4-372 1-126 1-126 4-363 4-310 3-379 3-171 1-96 4-196 4-360 3-171 3-379 3-172 4-373 4-364 1-16 1-76 4-361 3-385 1-126 4-370 3-379 4-362 4-258 2-247 3-267 1-38 4-372 3-173 4-373 3-173 3-315 3-384 2-21 3-316 3-173 Topical Index Longoria, Linda, P.T. 4-359 Magiolo, Venera R., Re.N. 4-360 Marnell, John W. 1-127 Mattiole, Mrs. Angelo 3-174 Maxwell, Roberta 1-127 McClure, N.D., III 4-212 Mengel, Mary 3-174 Mikus, Anita 3-377 Nelson, Mrs. Emil G. 1-127 Nelson, Mrs. Wendel 3-175 Nero, Doris 3-176 Nesby, Mrs. P.H. 4-371 O'Donnell, Ruth 1-128 Orscheln, Don W. 3-294 Pankratz, Margaret 3-176 Partenheimer, Mrs. K. 1-128 Pennington, Harriet R. 4-212 Pfluger, Suzie, L.P.T. 4-361 Presswood, Becky, O.T.R. 4-373 Puckett, Allan 1-129 Pugh, Robert E. 4-368 Rahming, Mary A. 1-129 Reynolds, Michael, M.D. 1-199 Robinson, Ron 3-535 Ross, Harriet B. 2-247 Royster, Jeanne 4-213 Ruddy, Shaun, M.D. 4-188 Ryan, Michael 3-268 Saldana, Alice 4-369 Sampson, Melvin 1-268 Satterfield, W. W. 3-495 Scales, Zilphia E. 4-361 Scheuring, Mrs. Joseph 1-130 Schindel, Almira 1-131 Schreiber, Martin J., Lt. Governor 3-21 Seward, Jan, L.P.T. 4-365 Shriner, Grace A. 1-313 Singleton, Mrs. J.C. 4-365 Slepian, Ronald P. 4-214 Smith, Kenneth 3-378 Smith, Morris B. 1-132 Solem, Louise 2-128 Strawser, Norman 2-23 Stroup, Clair 1-133 Stuart, Mrs. Amparo 1-133 Summer, Mrs. Howard L. 3-178 Sweeney, Patricia and Thomas 2-246 Thielmann, Dorothy 3-179 Trevor, Claire 1-191 Trulock, Frances 1-134 1-lvi Topical Index Tull, Robert 3-332 Tyson, Eraday 3-537 Vig, Rosalyn J., R.N. 3-179 Voigt, Christine 3-180 Ward, Harry, M.D. 2-297 Warner, Roger J. 3-442 Webb, Mrs. Gerline 4-358 Wesley, Sister Suzanne 3-335 Whitson, S. William, Ph.D. 3-317 Williams, Minnie R. 4-358 Wilson, Colin H., M.D. 4-143 Wilson, Robert J. 3-181 Winn, Audrey C. 4-369 Wolf, Virginia, R.N. 4-363 Wruck, Chris 3-181 Zeltwanger, Mrs. Richard 3-383 Zolorski, Eleanor 3-182 Zuniga, Magdalena 4-360 Zvaifler, Nathan, M.D. 1-161 General Abruzzo, John L., M.D. 2-132 Aldrich, Janet 2-206 Anderson, David W., M.D. 1-279 Armstead, Ann 4-218 Armstrong, Elizabeth 3-222 Arsneau, Mrs. Raymond 1-142 Bachman, Leonard, M.D. 2-65 Baker, Carol 3-399 Ballangee, James M. 2-33 Bason, Lona 1-142 Bates, Carol 3-222 Baumgartner 3-396 Becker, Marjorie, M.D. 4-173 Berg, Mrs. Eugene 3-223 Bethel, Rose 3-223 Book, Inga M. 2-134 Borman, Corinne 2-214 Boynton, Mrs. Arxdis 3-223 Bredenbeck, Dorothy 4-124 Brewer, Earl J., M.D. 4-401 Brookins, Bessie 3-224 Brown, Mrs. L. M. 1-143 Brownell, John E. 2-134 Buerreman, Eliza M. 3-409 Buggs, Kathryn 3-396 Bumpers, Dale, Senator 3-423 Bush, Lucille E. Robinson 3-224 Callan, Phylis 3-228 1-lvii Topical Index Carey, Margaret 3-308 Cato, Stewart C. 1-234 Clark, Vivian 3-228 Clochesy, John M. 3-229 Clouthier, Fred W. 1-143 Coffman, Mrs. Lorene 1-218 Cohen, Nancy 4-218 Colona, Anna 3-403 Cox, Amelia 3-406 Coyle, Sandra J. 2-263 Davis, Argus W. 3-397 Davisson, Garnet 4-124 Dilworth, Grace, R.N. 4-401 Dry, Victoria 3-326 Dye, Agnes 3-398 Earnest, Vera 4-153 Elder, Nina 3-399 Ennis, Ruby Nelson 3-229 Eurich, Mrs. 3-232 Fannin, Ernest 4-399 Floyd, Don 3-423 Foley, Eloise G. 3-233 Forsyth, Ethel 3-234 Fraser, Mrs. R. 1-143 Garot, Lil 3-234 Gellan, James 2-387 Geller, Sam 3-62 Gillespie, Alberta 3-408 Glenn, Art 2-388 Goebel, Louis 1-183 Goetzel, Edward J. 2-267 Goldman, Allan L., M.D. 3-44 Gordon, Marjorie 2-180 Graetz, Susan 2-171 Graham, David T. 3-88 Gray, Mrs. J.A. 4-151 Graziano, Victoria 3-83 Grubbe, Arlette 3-91 Hanni, Arlene 3-235 Haugen, Clarion W. 3-235 Haugen, Mabel 3-236 Hayes, Sandra 3-403 Heckendorn, Ray 3-402 Heiss, Marie 3-98 Helm, Don 3-236 Henehan, Sister Mary 3-408 Henley, Bernice C. 3-405 Hesser, Celeste 3-319 Hester, Janice Be. 4-220 Hill, Alta B. 3-401 Hinson, James 4-11 1-lviii Honea, ROss Hough, Jean House, Mrs. Frank Huetel, Mrs. E.A. Irvin, Ervine Jacobson, Richard H. Kaplan, Stephen R., M.D. Keaveny, Mary L. King, Bessie Klasky, Elinor C. Kothbauer, Joan Kuhn, Margaret E. Kunkel, George, M.D. Ladd, Ernest F., Jr. Lavertu, Elizabeth Leffert, Robert, M.D. Leonard, Jencey Leslie, David Liang, George C., M.D. Lockie, George, M.D. Long, Clarence Edsel Lorentz, Mary Ann Lovdahl, John Lupu, Marian Marcks, Fern Mardon, Lillian K, et al. Martin, John L. Masters, Virginia J. Matthias, Mrs. Donald McAlpin, Bertha, R.N. McKeone, James F. Members of an Arthritis Class Militello, Rose Miller, Alma Rose Moon, Christine Cooper Moore, Edward E. Morrell, Iva Muldoon, Frances Muldoon, Mary F. Muldoon, Thomas P. Murphy, Mayor Lewis Myers, Allan, M.D. Neuman, C.E. Niemann, Carol Niles, Mrs. Richard D. Nuhn, Shirley N. O'Brien, Mrs. J.E. Oxf, Norbert W. and Mary C. Osbourne, Jean Pelt, Cora V. Petrovich, Mildred 1-lvix Topical Index 3-540 1-143 3-237 3-237 4-401 3-84 2-201 1-144 1-144 2-264 3-238 2-135 2-11 4-221 2-161 2-269 4-222 1-144 3-68 1-216 1-94 3-73 3-92 1-145 3-239 1-151 1-145 4-223 3-239 3-315 4-717 3-253 1-147 3-239 3-395 3-400 3-240 2-264 2-264 2-264 1-12 2-70 3-240 3-241 3-241 3-242 1-148 3-395 2-388 3-243 1-148 Topical Index Piotrowski, Mrs. Edward 3-243 Platt, Kenneth, M.D. 2-331 Pryor, David, Governor 3-424 Pyle, Frances 4-400 Rains, Blanche 1-308 Raymer, Clare 3-244 Richards, Mrs. Edward T. 2-266 Ridgeway, Barbara 1-277 Roberge, Mrs. Donald 3-251 Rogahn, Florence 3-244 Roth, Sanford, He, M.D. 1-149 Rothstein, Barbara 2-261 Sage, Mrs. John F. 3-245 Sauer, W.P. 3-246 Schmid, Frank Re, M.D. 3-81 Schmidt, Claudia 4-225 Schweiker, Sen. Richard Ss. 2-131 Sears, Ethel E. 3-399 Sessums, John V., M.D. 4-400 Shade, Evelyn 3-248 Shaefer, Werner 3-61 Shur, Peter H., M.D. 2-265 Skeith, Maurice D., M.D. 1-289 Smith, Basil A. 3-541 Spinney, Viola 3-248 St. Aubin, Wilfred 3-64 Stechmesser, H. 3-249 Strande, Robert 3-249 Sudbrink, Arlinda 3-250 Sundstrom, Walter R., M.D. 3-78 Sweeney, Mrs. Lester 3-250 Thomas, Esther 3-401 Underwood, Carl P. 3-251 Vardack, Maxine 2-261 Viozzi, Francies J., M.D. 2-111 Vodde, Russell 4-125 Weaver, Frank, M.D. 4-264 West, Charles E. 1-309 White, JoAnne, R.N. 2-102 Whiting, Laura 2-388 Williams, Ida M. 3-397 Williams, Minnie R. 4-401 Wilson, Congressman Bob 1-172 Wiss, Mrs. Bernard 3-401 Worby, Evelyn S. 3-251 Wynn, Doris 3-401 Zahorik, Janet 3-42 Ziolkowski, Pearl 3-252 Zucknex, Jack, M.D. 3-275 1-Ix Topical Index Modes of Treatment Barnett, Harry J., L.P.T. 4-391 Brewer, Jeanne E. 3-394 Gonzales, Lola C. 4-390 Hawkins, Julie R. 4-392 Hoffman, John C. 3-390 Kaberg, Frances M. 3-388 Koett, Lizabeth Burns 4-389 Lightfoot, Georgia L. 3-390 Pogue, Virginia 4-387 Rau, Mrs. William C. 4-388 Wright, Willie Mae 4-391 Patient Care Adult Day Care Center 4-315 Almada, Rita 1-100 Ansley, Merle C., C.R.N.A. 3-498 Arakawa, Fuki, R.N. 1-252 Arbeitman, Ester 4-110 Ashar, Kenneth 1-273 Asmus, Harry 2-344 Atitarian, Peter, Ph.d. 1-32 Aylward, Dee, L.P.T. 3-291 Bailey, Mildred L. 1-100 Bardenheier, Kimberly Ann 3-270 Bardenheier, Virginia 3-269 Barlow, Delores, R.N. 3-498 Barrett, Leonard 1-238 Beakley, Robert 3-343 Bell, Thomas G. 2-345 Berkowitz, Sidney M.D. 4-85 Berry, Arminta 3-500 Bissett, Lois 4-323 Bland, Mrs. Jerry L. 4-322 Borg, Ruth 3-103 Boudreau, Joseph W. 2-228 Bowker, John H., M.D. 3-500 Breaux, Mrs. James L. 4-317 Brewer, Earl J, M.D. 4-239 Bridgeford, Paul, M.D. 4-12 Brodaczynski, Joseph F. 3-104 Brofman, Teresa, R.N. 2-342 Brotz, Mrs. Wilbur A. 3-103 Brown, ‘James H. 3-342 Brown, Sidney A. 3-501 Budlong, John 1-303 1-Ixi Topical Index Bump, Boardman 2-222 Burk, Nancy T. 1-212 Burnett, Joshua B., M.D. 2-207 Byall, Nellie 1-100 Canales, Eva 1-101 Caplinger, Elizabeth 3-483 Caplinger, Kelsey J., M.D. 3-420 Carey, Judith J. 3-474 Caroline, Sally S. 2-235 Cash, Clarence 3-479 Castellucci, Mae Jones 4-318 Cathcart, Robert H. 2-294 Chadwick, David, M.D. 1-217 Chaplin, David M., M.D. 1-249 Chavez, Cricelda 4-318 Clark, Edna D. 1-101 Cole, Mrs. James 3«105 Connally, Ivy D. 4-110 Cook, Marty 4-327 Corwin, Mary Ellen 3-502 Couric, John M. 4-204 Crawford, Pauline L. 4-111 Cudhie, Bernice We. 1-297 Cunningham, Laura C. 1-101 Daehn, Emma 3-339 Daniels, John 4-160 Daviduke, Eve Mae 1-89 Davis, JoAnne 1-36 DeSisto, Denise 2-234 Diden, Mary Elizabeth 3-504 Dillaplain, Cindy 4-320 Donovan, William H., M.D. 1-245 Doolittle, Carol 1-172 Doolittle, Dekby, R.P.T. 2-371 Dorsey, George P. 1-303 Doyle, Marilyn, M.P.H. 4-178 Dye, Phyillis 4-82 Easley, Ed 4-255 Eichenaner, John 1-103 Elgohary, Kirilous 4-246 Ellsworth, Dorothy 1-86 Engebretson, Gordon, Ph.D. 4-15 Ergovich, Joseph 3-348 Esquibel, Regina 1-250 Fassbender, Mrs. We. 3-105 Ferstl, Lorraine 3-105 Fletcher, Wellington 3-106 Frederick, Richard Re. 4-327 Fredley, Terrie 4-320 Frye, Freda 3-505 Frymark, Patricia J. 3-106 1-Ixii Furlong, John and Mary Gale, Stanley B. Garces, Mrs. P.F. Garcher, Frank S. Gares, Jennie O. Garrett, Deidre S. Garry, Cynthia Garza, Mrs. Alfred Gilbert, Virginia Gomez, Henry G. Goodrich, B. Gotshall, Germaine, R.D. Granberry, W. Malcolm, M.D. Griffin, Elizabeth Grinstead, Colette Grisar, Carl Hanson, Virgil, M.D. Hatfield, Marit, L.P.T. Hayes, Beatrice A. Haymond, Joanne M. Hazel, Helen Herring, Marjorie Herzog, Kathleen Hill, Carole Holley, Howard, M.D. Hollister, J. Roger, M.D. Hood, Pat Hudson, Bernice Hughes, Anne S. Hughy, Georgia Imperato, Pat Jackson, May, M.S.E., O.T.R. Jacok, Leslie James, Elizabeth E. Jette, Alan M. Johnson, Marie C. Johnson, Mrs. L.M. Johnston, Marlin W. Jolley, Mrs. Kalish, Bernice Kaul, Robert E. Kemper, James W. Kessler, Hazel F. Keys, Ann, L.P.T. King, Barbara King, Karen Koster, M.D. Kinnamouth, Eura Kirchenberg, Mrs. Erwin Kirkpatrick, Billie, R.N. Knoblock, Dianne Kowalski, Mrs. C. 1-Ixiii Topical Index 2-229 4-51 3-107 1-103 4-329 4-67 2-57 4-245 1-103 4-332 3-108 2-120 4-321 1-83 4-330 3-109 1-220 4-274 3-110 4-29 3-506 1-94 3-506 3-339 4-179 2-353 3-507 3-508 1-104 1-210 4-56 3-459 3-111 3-508 3-65 4-27 3-110 4-331 1-240 3-111 1-23 4-325 3-112 4-334 4-55 1-178 3-509 3-113 3-510 1-104 3-114 Topical Index Krane, Stephen, M.D. 2-169 Kulchinsky, Aaron 4-100 Lee, Edith 1-105 Leidholt, John D., M.D. 2-337 Leithead, Norma 4-111 Lister, Jack 1-184 Luebbe, Mrs. C.E. 4-112 Luecke, H. E. 3-115 Maier, Karl, Jr. 3-115 Mankowski, Mr. and Mrs. Leon 2-232 Mannik, Mart, M.D. 1-290 Manning, Donna J. 3-116 Mason, Cecile 1-209 Mathews, J.C. 4-302 Mathews, Misty 4-246 Matthews, Carla 1-285 McCarty, Dorothy 4-315 McGillis, Joanne S. 2-281 Melvin, John IL., M.D. 3-30 Millar, Donald, M.D. 4-133 Miller, Mrs. T. Kenneth 4-113 Millspaugh, Cora L. 4-113 Mongan, Edward, M.D. 1-197 Montgomery, Betty Cranston 3-510 Morrill, Kent W. 1-288 Nayes, Mrs. Harold 3-117 Neiswender, Heidi, R.D. 2-58 Nelser, Adrienne 3-118 Nelson, Alfred C., Ph.D. 2-350 Nelson, Debbie 4-335 Nesby, Pat 4-314 Newman, Ted 3-462 Oglesby, Thelma A. 3-511 Olson, Tonda I. 2-227 Orphanidys, Helen K. 4-328 owens, Virginia J. 3-512 Pachman, Lauren M 3-48 Parsons, James, M.D. 1-52 Perlman, Eugene 3-341 Philbrick, Mrs. Ivan A. 1-107 Philbrick,Mrs. I.A. 1-106 Podgorski, Sophia M., R.N. 2-13 Poiley, Jeffrey E. M.D. 4-114 Pokorny, Edward J. 3-118 Price, Nenon 2-289 Pryor, Edith M. 4-314 Putnam, Evelyn R. 1-88 Ramm, Pat, O0.T.R. and Perry, Peggy W. 4-334 Ransom, Annette M. 4-326 Raven, Mrs. Henry 3-118 Ray, David B., Jr. 3-462 1-Ixiv Rayment, Geraldine Reed, Rowland Reed, Walter S., Jr. Reticker, Jane Reuter, Peter Ringo, Walter Roberts, Betty S. Roberts, Robert J. Robertson, Judy, L.P.T. Rocco, Barbara Rockabrand, Betty F. Roebuck, Ben E. Romanowski, Arnold P. Rubin, Lawrence M., D.P.M. Rueppel, Eunice A. Sabo, Louis A. Sack, Kenneth C., M.D. Sapp, John P. Sarlls, Wilbur Scales, Zilphen Scarbrough, Christia F. Schaller, Jane, M.D. Scharr, Adela R. Schott, Richard Scott, Mrs. Lee Sisneroz, Anita Smith, Relda Snell, Jeanne Sparling, Nancy, R.N. Speen, Bernice R. Sproge, Alice Stahl, Beatrice M. Stillman, J. Sydney, M.D. Strawbridge, Karen Sussman, Sam ‘Tajeda Robert A. Tally, Pat, M.S.W. The Hondo Neighborhood staff Thorson, Mrs. Raymond Trachluh, Maria Traster, Mrs. Floyd Valencia, Rosemary Vietmeier, Raymond He. vitullo, Orlando Vogt, Howard D. Volz, Robert, M.D. Wabick, Mrs. C. Walker, Joyce M. Wathen, Nitak Watson, Marcine 1-Ixv Topical Index 4-82 1-224 2-236 4-115 4-105 3-514 4-280 4-319 4-328 4-253 3-119 3-477 2-236 3-32 3-120 1-48 4-316 4-322 1-25 4-319 4-96 1-236 3-345 2-186 1-63 1-108 3-515 3-348 1-251 2-225 1-87 3-120 2-149 2-288 4-102 4-333 4-243 4-318 3-121 3-121 3-349 1-108 3-344 2-230 4-94 1-54 1-109 1-304 4-307 3-350 Topical Index Weiss, Paul 1-246 Welch, Richard B., M.D. 1-224 Wells, John He, M.D. 3-297 Williams, Norman, Mrs. 3-515 Winger, Barbara 2-109 Wright, Alpha Blair 1-109 Young, Paul, M.D. 4-201 Professional Training Abrams, Juanita S. 3-153 Aloe, General Robert 4-297 Anderson, Steven, M.D. 2-355 Austad, William R., M.D. 3-153 Barkley, Elizabeth, R.N., L.P.T. 4-290 Bautch, Judith C. 3-154 Bayles, Theodore, M.D. 2-239 Bernhard, Gerson C., M.D. 3-23 Boyer, John T., M.D. 1-55 Bradford, Barbara 4-88 Burnside, John W. 2-115 Caldwell, Jacques M.D. 4-37 Cape, James F. 3-154 Carley, David, Ph.d. 3-27 Carter, Sue, L.P.7T. 2-124 Christian, Charles, M.D. 2-210 Clardy, E. K., M.D. 3-526 Cleere, Roy L., M.D. 2-378 Connett, Karen, O.T. 1-211 Cook, Mrs. Helen 2-209 Cready, Joyce 2-122 Eisenbeis, Carl, M.D. 2-97 Evans, Lloyd R. M.D. 2-380 Eyring, Edward J., M.D. & Campbell, W.B. 4-186 Fairclough, James H., Jr. 2-244 Fink, Chester W., M.D. 4-350 Fletcher, David King, M.D. 3-455 Godfrey, Robert, M.D. 2-327 Goehrs, Homer, M.D. 4-292 ‘Gore, Donald R. 3-47 Graham, June, L.P.T. and Maynard, Judy 4-277 Granick, Risa, L.P.T. 2-122 Greenleaf, Lee 1-188 Grossman, Burton J., M.D. 3-154 Gruen, Hanna 2-120 Hahn, Bevra, M.D. 3-284 Hall, Arthur P., M.D. 2-241 Hardin, Ruth 1-312 Hartman, Ann 3-155 Herd, Kenneth, M.D. 3-276 Humphreys, Beverly 1-294 1-Ixvi Hunter, Dwight I. Hutcheson, Fred A., M.D. Kiernat, Jean M., O.T.R. Klein, Martha Gray Kuehn, George Lipsmeyer, Eleanor, M.D. Martin, Billie Martin, Jerome L. McCarty, Daniel J. Messner, Ronald, M.D. Miller, Mrs. Clifford Mills, John A., M.D. Mollinger, L.P.T. Morris, Dennis, R.P.T. Murphy, Lynne Marie Murphy, Mrs. Charlene Nottinhamper, Dorothy Persellin, Robert H., M.D. Petexrsdorf, Robert G., M.D. Phillips, T. J., M.D. Pirnique, Allan S., M.D. Plimpton, Katharine Potschaider, Lois Quigley, T. Richard Ricca, Louis, M.D. Ross, Bernard A. Rubenstein, Herkert M., M.D. Rubenstein, Herbert M., M.D. Runholm, Eugene A. Ryall, Mrs. E.V. Sanders, Louis, M.D. Sandson, John, M.D. Schlorff, Velma Sisk, Charles, M.D. Snyder, Martin, M.D. Stark, Mary Rita Steigerwald, James C., M.D. Steverwald, Viola, R. N. Thompson, Mrs. Howell Tinsley, Austin R. Toone, Elam, M.D. Torinus, Jack B. Treacy, William Utt, Richard LC. Ward, Harold Wilson, Eunice Wilson, T.E. III, M.D. Yost, William A., Jr. Zeiders, Robert, M.D. 1-Ixvii Topical Index 3-454 3-529 3-156 3-157 2-148 3-426 1-78 2-122 3+39 1-67 3-158 2-240 2-125 3-461 2-197 2«196 3-529 4-262 1-299 1-305 3-530 2-146 3-158 2-243 3-266 3-160 3-161 3-162 3-162 3-432 2~182 4-177 3-310 1-116 3-162 2-315 3-163 3-531 3-355 4-208 3-163 3-97 1-117 3-359 2-239 3-466 3-164 3-298 Topical Index Program Management Coordination Blodgett, William 2-251 Brest, Lewis 1-34 Buck, Gary, Ph.d. 1-13 Convery, F. Richard, M.D. 1-163 Emery, Frank E., M.D. 4-377 Ferrell, Keith 4-267 Harris, Michael N., M.D. 3-538 Hill, Donald, M.D. 1-50 Hirschberg, Ruth 2-173 Hulce, Ray 3-56 Hunt, John 1-66 Jensen, Francine, M.D. 4-375 Kerr, Jarvis J. 2-187 Kline, John L. 4-215 Lynch, Richard J. 2-250 Matyi, Elmer 3-323 McCann, Eithne, M.D. 2-251 McCann, Virginia H., R.N. 2-203 Mozar, Harold N., M.D. 1-202 Murphy, Anne, R.N. 4-169 Nicholson, Janice 2-17 Partridge, Raymond, M.D. 2-212 Pfeiffer, Mildred, M.D. 2-24 Richardson, Robert W. 2-79 Ritter, Mrs. Kenneth 3-182 Salmon, J. Warren 2-43 Schenewerk, Carla, O.T.R. 3-334 Schlevensk, James 3-183 Singleton, Lt. Col. Charles M. 4-376 Smith, Lovetta, R.N. 4-282 Spriggs, John T., M.D. 1-58 Stark, lewis 3-184 Tourtellotte, Charles D., M.D. 2-43 Vaughan, John, M.D. 1-165 Waller, Gordon, M.D. 3-281 Yoder, Anna F., R.N. 2-248 Public / Patient Education Armstrong, Michael & Schlosstein, Lee, M.D. 1-307 Benson, Warren 1-45 Berg, Myrtle M., R.P.T. 3-185 Blank, Lois 3-186 Blechman, W.J., M.D. 4-46 Bosshard, Mina I. 3-186 Bulin, Ann 3-187 Burt, Marguerite L. 4-387 Chernov, Mimi 3-187 1-Ixviii Cohen, Nancy Collins, Lorraine Combs, Guy S. Davies, Loree, and Hanson, Erica Dawson, Willis R., Jr. DeAndrade, Robin, M.D. Eckhardt, Rep. Bob Edwards, Richard C. Elliott, Jo Eleanor R.N. Evans, Betsy Fair, Corinne Fair, Corinne Forbes, Cynde Frank, Lydia F. Gibbon, Irene Gizelback, Nadea Gloe, Darlene "Halek, Mike Hamachek, Mrs. Frank Hammer, Nona Harloff, Helen L. Haugen, Marilyn Hicks, James C. Hoard, Mary Grace Holsten, Donna, M.S.P.H. Hough, Robert E. House, Charles Jakubowski, Althea Jorgenson, Eleanor C., R.P.T. Kanarowski, John Kappelman, Mae Klamer, Lorraine Kline, John Kring, Carol Labrie, Catherine Leffert, Ann Love, Rebecca K. Mangels, Ralph Mauldin, Norma E. McNamara, James J., Ph.D. Meikle, Irene Minor, Mrs. W.P. Moritz, Mary Morris, Alan D. Moze, Frank James Mullarky, Mrs. H. Myers, Robert C. Neal, Garaldine Nelson, Lorraine Ohlsen, Minna 1-Ixix Topical Index 4-166 3-193 4-300 3-196 4-386 4-144 4-256 3-70 2-311 1-134 1-41 1-135 3-194 3-194 3-195 4-383 3-273 1-136 3-196 2-270 3-197 3-198 4-385 3-198 3-327 3-199 3-100 3-199 3-200 3-201 3-201 3-202 4-156 3-204 4-58 3-387 2-270 4-386 4-379 2-347 3-206 3-206 3-206 3-386 3-207 3-207 4-383 2-287 3-207 3-208 Topical Index Oliver, David B., Ph.D. 4-384 Perkins, Aline R. 3-304 Person, Herman D., R.P.T. 3-387 Peterson, Douglas 3-208 Pigg, Janis Smith 3-95 Pohl, Evelyn 3-208 Riggs, Gail E. 1-27 “ Ryseff, Mrs. Joanne 1-292 Schmidt, Sylvia E. 3-209 Schwartzenbach, John R., M.D. 4-385 Seamans, Carol 3-210 Seelhorst, F. Elaine 3-34 Seide, Capt. Susan 4-382 Shimondle, Ruth 1-253 Smith, Gayle Green, 0.T.R. 1-287 Smoote, Aurora S. 4-381 Spiro, Joanna H., and Hayden, Mary Claire 3-210 Stegman, Olivia 2-113 Stenger, John G. 3-211 Tivanovak, John J. 3-212 Turnesa, Clifford 4-48 Weiss, Sandy 3-212 Wiegand, Annette J. 3-213 Wiegard, Annette J. 3-214 Research Bankhurst, Arthur, M.D. 1-68 Barber, Esther 1-284 Bartelt, Mrs. David 3-121 Blesoff, Mrs. Benjamin 2-238 Bowman, Gertrude H. 3-122 Brandt, Adeline H. 3-122 Bronk, Marjorie, R.N. 4-345 Brown, Mrs. Arthur 3-123 Brown, Thomas and Clark, Harold 4-207 Bruckmann, Mrs. Ludwig 1-109 Brunke, Adeline N. 3-124 Clark, Donald E. 1-174 Clayton, Mack L., M.D. 2-301 Conley, Mary Alice 1-111 Counts, Grace 3-350 Crouch, Emma Lee 4-342 Deauchamp, Lydia 3-125 DeYoung, John C. 3-125 Dicker, Frances R. 4-79 Donsen, Charles P. 2-73 Dorner, Robert W., Ph.D. 3-320 Dousis, Marjorie 1-111 Draine, Katherine 4-115 1-Ixx Dulan, Elva J. R.N. Dupuis, Mrs. Newton, J. Ellen, Vera H. Enneking, W.F., M.D. Ennion, Charlotte Epstein, Wallace, M.D. Evans, John T. Falter, Ruth O. Ferguson, John l1., M.D. Finch, William C. Fischer, Patricia Fordyce, Wilbert E., M.D. Frazer, Mary Lou Gettleman, Fred W. Golob, Laverne Hansen, Mrs. Arthur H. Harris, William, M.D. Hastings, Elizabeth Healey, Louis A., M.D. Hempel, Karl H., M.D. Henry, Nancy V. Hess, Evelyn Hesser, Wayne M. Hoepfner, Mrs. Fred Hollander, Joseph L., M.D. Hopp, Harley Huck, Vera Isakson, Mrs. Kenneth Jagger, Margaret Jessop, Joseph E. Keller, Mrs. Robert Keltner, Bill Kevill, Hazel Klapstein, Mrs. Donald F. Krause, Richard, M.D. Laatsh, Mrs. IL.C. Lehmann, Justus F., M.D. Levin, Harry Lewis, Arden I. Lidsky, Martin D., M.D. Linder, August J. Lohr, Adeline Long, Frieda H. Madland, L. F., Ph.d. Martinez, Rosalie Mashuda, Marcella Masi, A. T., M.D. Mathews, Mrs. Don Mattushek, Irma Mayes, Vancy M. 1-Ixxi Topical Index 2-280 1-112 3-126 4-116 3-126 1-192 1-112 3-126 3-351 3-516 1-215 1-311 3-127 3-127 3-128 3-129 2-222 1-113 1-272 4-347 4-336 3-129 3-354 4-349 2-8 3-130 1-113 3-13 3-131 1-175 4-337 3-517 3-132 3-132 4-31 3-132 1-280 2-318 4-338 4-346 3-133 3-133 1-114 3-134 1-115 3-134 3-518 4-338 3-134 4-345 Topical Index McDuffie, Frederick C., M.D. 3-50 Meider, Elsie 3-135 Meier, Walter R. 3-135 Merrill, Joseph, M.D. 4-348 Minchen, Sara 3-352 Moore, Nancy S. 4-117 Murphy, H. Carol 3-136 Neckerman, George M. 3-137 Nelscn, Hazel 3-352 Nelson, Porter 2-374 Nelzel, Florence 3-137 Nesby, Mrs. P.H. 4-343 Norton, Walter L., M.D. 2-369 Oltarzewski, Beulah 3-138 Paar, Karen 3-138 Panush, Richard S. M.D. 4-86 Patzer, Esther K. 3-139 Pershing, Robert H. 2-378 Person, Donald A. 4-339 Pos, Edward E. 3-140 Puza, Emil A. 3-140 Radomski, Sylvia 3-140 Rather, Mary 3-141 Raudwer, John and Edith 3-141 Reiten, Mrs. Ruber A. 3-141 Robinson, Dwight R. 2-237 Rosenke, Mrs. Earl 3-143 Ross, S. William, M.D. 3-521 Rudi, Milton H. 3-353 Rudkin, Mrs. Gordon 3-143 Ruffalo, Mrs. Frank D. 3-145 Runycn, Robert V. 2-356 Saris, Jeanette 4-24 Satterfield, John V., M.D. 3-522 Schmit, Audrey 3-146 Schott, Donna 3-147 Schwartz, Walter O. 3-146 Sell, Mrs. Eugene 3-147 Sells, Robert K. 3-522 Selzer, John W. 3-147 Shinnerer, William and Virginia 1-115 Simkin, Peter A., M.D. 1-275 Smith, Verle H. 3-148 Spangenberqg, Ed 3-148 Squires, James C. 1-296 Standorf, Claudia 3-72 Stude, Norma 3-148 Stuntz, Debra Y. 4-344 Sturdevant, Roger 3-271 Susko, Delores 1-115 1-Ixxii Topical Index Swenson, Gloria 3-148 Taylor, Helen ‘ 3-524 Tierney, Barbara, R.N. 4-344 Tighe, Cordelia J. 1-304 Trythall, Mrs. D. 3-149 Tunnell, B. Travis, Ph.D. 3-490 Vosicky, Mrs. C. 3-149 Voy, Ruth V. 3-150 Wallace, Lois 3-525 Ward, John R. M.D. 2-291 Weathers, Allison 1-213 Weaver, Jo 1-214 Welch, K. S. 3-152 Welch, Kathleen S. 3-151 Whiting, Patricia S. 4-340 Wick, Arthur G. 3-152 Wild, James H. Lt. Col. 4-345 Wilda, Mrs. Ray 1-116 Wilske, Kenneth R., M.D. 1-285 Zuege, Robert C. 3-152 Socioeconomic Implications Ayers, Mary L. 4-397 Cassada, Shirley I. 1-136 Cornwell, Susan J. 3-218 Cox, Carole F. 4-59 Evans, Betsy 1-137 Fuller, Jean F. 3-214 Halloran, John K 4-397 Hinojosa, Consuelo G. 4-393 Jacobs, Ruth R.N. 4-90 Kratchmer, Dale E. 1-138 Kuhlman, Robert E., M.D. 3-290 Kunze, Winifred 3-214 Kuolt, Lorraine H. 3-216 Lazo, Cecelia Ss. 4-395 Lemke, Janet 3-77 Long, Robert S., M.D. 2-362 Mest, Debbie 3-270 Montgomery, Jim 1-185 Muench, Robert 3-322 Northington, Carolyn, R.N. 4-396 Odend'hal, Nancy 3-392 Pauly, Mrs. Frances 1-139 Poole, H.M. 2-357 Pratho, Theresa 4-395 Reaves, Ms. Alamo 1-71 Rennie, Christine D. 4-123 Ricks, Robert E. 4-396 1-Ixxiii Topical Index Ryno, L.K. 4-392 Smith, David Wayne 1-20 Solberg, Dorothy F. 3-217 Sunde, Mrs. Jack 3-218 Testerman, Elsie Marie 1-139 Vasquez, Rosario 4-396 Welch, Louis 4-394 Wickert, Mrs. W. 3-218 Transportation / Adaptation of Public Facilities Braggs, Gloria 4-217 Callaghan, Walter 2-195 Chew, Virginia 1-195 DeBenedetti, Clifford, M.D. 1-29 Dykey, Charles E. 3-219 Grisar, Mary 3-219 La Prath 1-308 Leopold, Jane, M.D. 3-293 Lord, Michal Anne 4-398 Richmond, June 1-80 Sauer, Reverend W.P. 3-221 Tisinger, Mary J. 4-398 Van Rossum, Marie 3-221 Willkens, Robert F., M.D. 1-267 Woods, Bill 1-140 1-Ixxiv GEOGRAPHIC INDEX Alabama Birmingham Mobile Braggs, Gloria 4-217 Brunson, Eliza S. 4-211 Ladd, Ernest F., Jr. 4-221 McClure, N.D., III 4-212 Pennington, Harriet R. 4-212 Royster, Jeanne 4-213 Slepian, Ronald P. 4-214 Alaska Anchorage Armstrong, Michael & Schlosstein, Lee, M.D. 1-307 Arizona Bisbee Cassada, Shirley I. 1-136 Clouthier, Fred WwW. 1-143 Green valley Dooley, Raymond N. 1-126 Schindel, Almira 1-131 Mesa Wright, Alpha Blair 1-109 Page Clark, Edna D. 1-101 1-Ixxv Geographic Index Phoenix Cullinan, Anna, State Representative Cunningham, Laura C. DeBenedetti, Clifford, M.D. Eichenaner, John Kennedy, Mrs. Joseph M. Lee, Edith Novak, Sharon Roth, Sanford, H., M.D. Wilda, Mrs. Ray Pima Bailey, Mildred L. Pima County Parsons, James, M.D. Sacaton Black Feather, Judith A., R.N. Scottsdale Martinez, Rosalie Petrovich, Mildred Sierra Vista Fair, Corinne So. Cochise County Fair, Corinne Tempe Bason, Lona 1-Ixxvi 1-118 1-101 1-29 1-103 1-38 1-105 1-74 1-149 1-116 1-100 1-115 1-148 1-135 1-41 1-142 Geographic Index Tucson Almada, Rita 1-100 Arsneau, Mrs. Raymond 1-142 Attarian, Peter, Ph.d. 1-32 Benson, Warren 1-45 Boyer, John T., M.D. 1-55 Brazel, James A. 1-125 Brown, Mrs. L. M. 1-143 Bruckmann, Mrs. Ludwig 1-109 Buck, Gary, Ph.d. 1-13 Byall, Nellie 1-100 Conley, Mary Alice 1-111 D*Attilio, Doris 1-125 Dorsey, Mary E. 1-126 Dousis, Marjorie 1-111 Dupuis, Mrs. Newton, J. 1-112 Ehnert, Mrs. Ray B. 1-119 Ellsworth, Dorothy 1-86 Evans, Betsy 1-134 Evans, John T. 1-112 Fraser, Mrs. R. 1-143 Gall, Eric P., M.D. 1-119 Gandel, Rev. Paul 1-96 Garcher, Frank S. 1-103 Gilbert, Virginia 1-103 Hastings, Elizabeth 1-113 Hastings, Elizabeth 1-113 Hill, Donald, M.D. 1-50 Holmberg, James 1-16 Hough, Jean 1-143 Huck, Vera 1-113 Hughes, Anne S. 1-104 Humes, Lily 1-126 Kaul, Robert E. . 1-23 Keaveny, Mary L. 1-144 King, Bessie 1-144 King, Bettie 1-122 Knoblock, Dianne 1-104 Kratchmer, Dale E. 1-138 Leslie, David 1-144 Leung, Paul 1-123 Long, Clarence Edsel 1-94 Long, Frieda H. 1-14 Lupu, Marian 1-145 Mardon, Lillian K, et al. 1-151 Marnell, John W. 1-127 Martin, Billie 1-78 Martin, John L. 1-145 Maxwell, Roberta 1-127 1-Ixxvii Geographic Index Militello, Rose 1-147 Murphy, Mayor Lewis 1-12 Nelson, Mrs. Emil G. 1-127 O'Brien, Mrs. J.E. 1-148 O'Donnell, Ruth 1-128 Partenheimer, Mrs. K. 1-128 Pauly, Mrs. Frances 1-139 Philbrick, Mrs. Ivan A. 1-107 Philbrick,Mrs. I.A. 1-106 Puckett, Allan 1-129 Rahming, Mary A. 1-129 Riggs, Gail E. 1-27 Sarlls, Wilbur 1-25 Scheuring, Mrs. Joseph 1-130 Shinnerer, William and Virginia 1-115 Smith, David Wayne 1-20 Smith, Morris B. 1-132 Snyder, Martin, M.D. 1-116 Spriggs, John T., M.D. 1-58 Stroup, Clair 1-133 Stuart, Mrs. Amparo 1-133 Susko, Delores 1-115 Testerman, Elsie Marie 1-139 Trulock, Frances 1-134 Utt, Richard D. 1-117 Valencia, Rosemary 1-108 Volz, Robert, M.D. 1-54 Wabick, Mrs. C. 1-109 Warner, Mrs. W.C. 1-124 Wingate, Edith A. 1-124 Wilcox Sisneroz., Anita 1-108 Arkansas Benton Corwin, Mary Ellen 3-502 Cabot Thompson, Mrs. Howell 3-531 Conway Jackson, May, MJS.E., O.T.R. 3-459 1-Ixxviii El Dorado Pirnique, Allan S., M.D. Hope Oglesby, Thelma A. Hot Springs Na. Pk. Clardy, E. K., M.D. Jonesboro James, Elizabeth E. Little Rock Ansley, Merle C., C.R.N.A. Berry, Arminta Bowker, John H., M.D. Brown, Sidney A. Bumpers, Dale, Senator Caplinger, Elizabeth Caplinger, Kelsey J., M.D. Cash, Clarence Dunkley, Robert Finch, William C. Fiser, Robert H., Jr., M.D. Floyd, Don Harris, Michael N., M.D. Hazel, Helen Herzog, Kathleen Honea, Ross Hudson, Bernice Keltner, Bill Ketscher, Lottie Ruth Lipsmeyer, Eleanor, M.D. Morris, Dennis, R.P.T. Nelson, Carl, M.D. Newman, Ted Nottinhamper, Dorothy Pryor, David, Governor Ray, David B., Jr. Ringo, Walter Robinson, Ron Roebuck, Ben E. Sanders, Louis, M.D. 1-Ixxix Geographic Index 3-530 3-511 3-526 3-508 3-498 3-500 3-500 3-501 3-423 3-483 3-420 3-479 3-449 3-516 3-533 3-423 3-538 3-506 3-506 3-540 3-508 3-517 3-534 3-426 3-461 3-493 3-462 3-529 3-424 3-462 3-514 3-535 3-477 3-432 Geographic Index Satterfield, John V., M.D. Satterfield, W. W. Taylor, Helen Tunnell, B. Travis, Ph.D. Warner, Roger J. Magnolia Kirkpatrick, Billie, R.N. McGehee Montgomery, Betty Cranston North Little Rock Carey, Judith J. Ross, S. William, M.D. Pine Bluff Diden, Mary Elizabeth Texarkana Hutcheson, Fred A., M.D. California Coronado Clark, Donald E. Del Mar Coffman, Mrs. Lorene Downey Chew, Virginia Irvine Reynolds, Michael, M.D. 1-Ixxx 3-822 3-495 3-524 3-490 3-442 3-510 3-510 3-474 3-521 3-504 3-529 1-174 1-218 1-198 1-199 La Jolla Poole, H.M. La Mesa Coover, Maxine M. Weaver, Jo Los Angeles Hanson, Virgil, M.D. King, Karen Koster, M.D. Mongan, Edward, M.D. orange County Trevor, Claire Sacramento Mozar, Harold N., M.D. San Diego Burk, Nancy T. Chadwick, David, M.D. Connett, Karen, O.T. Convery, F. Richard, M.D. Doolittle, Carol Fischer, Patricia Goebel, Louis Grissom, Lee Jessop, Joseph E. Lister, Jack Lockie, George, M.D. Montgomery, Jim vaughan, John, M.D. Weathers, Allison Wilson, Congressman Bob Wilson, Mayor Peter Zvaifler, Nathan, M.D. 1-Ixxxi Geographic Index 2-357 1-181 1-214 1-261 1-178 1-197 1-191 1-202 1-212 1-217 1-211 1-163 1-172 1-215 1-183 1-170 1-175 1-184 1-216 1-185 1-165 1-213 1-172 1-168 1-161 Geographic Index San Francisco Epstein, Wallace, M.D. 1-192 Price, Nenon 2-289 Welch, Richard Be, M.D. 1-224 Colorado Boulder Elliott, Jo Eleanor R.N. 2-311 Denver Brofman, Teresa, R.N. 2-342 Cleere, Roy L., M.D. 2-378 Cutler, Norma, M.S.W 2-384 Dulan, Elva J. R.N. 2-280 Gellan, James 2-387 Glenn, Art 2-388 Heitler, Emmett H. 2-352 Hollister, J. Roger, M.D. 2-353 Kaplan, Herbert, M.D. 2-334 Leidholt, John De, M.D. 2-337 Levin, Harry 2-378 Neal, Garaldine 2-287 Nelson, Alfred C., Ph.D. 2-350 Nelson, Porter 2-374 Steigerwald, James C., M.D. 2-315 Strawbridge, Karen 2-288 Ward, Harry, M.D. 2-297 Greeley Asmus, Harry 2-344 Lakewood Pershing, Robert H. 2-378 Sether, Mariana 2-385 Westminster Platt, Kenneth, M.D. 2-331 1-Ixxxii Geographic Index Connecticut New Haven Malawista, Stephen, M.D. 2-216 Rothfield, Naomi, M.D. 2-219 District of Columbia Bell, Thomas G. 2-345 Couric, John M. 4-204 Crain, Darrell C., M.D. 4-193 Schweiker, Sen. Richard S. 2-131 Florida Bradenton Ricca, Louis, M.D. 4-9 Clearwater Bredenbeck, Dorothy 4-124 Crawford, Pauline L. 4-111 McKeone, James F. 4-77 Moore, Nancy S. 4-117 Reticker, Jane 4-115 Reuter, Peter 4-105 Coral Gables Winters, Henry E. 4-121 Davenport Leithead, Norma 4-111 Del Ray Beach Cox, Carole F. 4-59 Dunedin Davisson, Garnet 4-124 1-Ixxxiii Geographic Index Gainesville Caldwell, Jacques M.D. Enneking, W.F., M.D. Panush, Richard Ss. M.D. Gulf Port Draine, Katherine Garrett, Deidre S. Jacksonville Sales, louis M., M.D. Kenneth City Vodde, Russell Lake Hamilton Vogt, Howard D. Largo Luebbe, Mrs. C.E. Saris, Jeanette Miami Gottleib, Norman L., M.D. Howell, David S., M.D. Talbott, John H., M.D. North Miami Beach Blechman, W.J., M.D. Orlando Poiley, Jeffrey E. M.D. 1-Ixxxiv 4-37 4-116 4-86 4-115 4-67 4-118 4-125 4-112 4-24 4-117 4-39 4-119 4-114 Geographic Index sarasota Labrie, Catherine 4-58 Scarbrough, Christia F. 4-96 St. Petersburg Arbeitman, Ester 4-110 Bradford, Barbara 4-88 Bridgeford, Paul, M.D. 4-12 Engebretson, Gordon, Ph.D. 4-15 Gale, Stanley B. 4-51 Jacobs, Ruth R.N. 4-90 Johnson, Marie C. 4-27 Tallahassee Hinson, James 4-11 Tampa Berkowitz, Sidney M.D. 4-85 Connally, Ivy D. 4-110 Dye, Phyillis 4-82 Haymond, Joanne M. 4-29 King, Barbara 4-55 Rayment, Geraldine 4-82 Sussman, Sam 4-102 West Palm Beach Dicker, Frances R. 4-79 Kulchinsky, Aaron 4-100 Miller, Mrs. T. Kenneth 4-113 Millspaugh, Cora L. 4-113 Rennie, Christine D. 4-123 Turnesa, Clifford 4-48 1-Ixxxv Geographic Index Georgia Athens Daniels, John Atlanta Cohen, Nancy Cohen, Nancy DeAndrade, Robin, M.D. Dimon, Joseph H. III, M.D. Earnest, Vera Goldman, John A., M.D. Gray, Mrs. J.A. McCoy, John M., M.D., P.C. Millar, Donald, M.D. Schlorff, Velma Wilson, Colin H., M.D. Decatur Hester, Janice B. Masters, Virginia J. Ellaville Armstead, Ann Gainesville Leonard, Jencey Stone Mountain Schmidt, Claudia Illinois Chicago Dykey, Charles E. Grossman, Burton J., M.D. Grubbe, Arlette Pachman, Lauren M Rubenstein, Herbert M., M.D. Schmid, Frank R., M.D. 1-Ixxxvi 4-160 4-166 4-218 4-144 4-147 4-153 4-196 §-151 4-198 4-133 4-177 4-143 4-220 4-223 4-218 4-222 4-225 3-219 3-154 3-91 3-48 3-160 3-81 Evanston Link, John H. Maywood Rubenstein, Herbert M., M.D. Peoria Person, Herman D., R.P.T. Zeiders, Robert, M.D. Springfield Whitson, S. William, Ph.D. Wynne-Roberts, C. Rosales Indiana Indianopolis ward, Harold Wakarusa Zeltwanger, Mrs. Richard Kansas DeSoto Barnhart, Dorothy Hays Schleich, Barbara Kansas City Godfrey, Robert, M.D. Shawnee Mission Cox, Amelia 1-Ixxxvii Geographic Index 3-113 3-161 3-387 3-298 3-317 3-299 3-359 3-383 3-378 2-281 2-327 3-406 Geographic Index Topeka . Hahn, Bevra, M.D. Kentucky Louisville Cummings, Norman A., M.D. Davis, H. Scott Maine Bath Kerr, Jarvis J. Schott, Richard Soco Love, Rebecca K. Maryland Baltimore Shulman, Lawrence, M.D. Bethesda Decker, John, M.D. Krause, Richard, M.D. Massachusetts Bedford Callaghan, Walter Boston Bayles, Theodore, M.D. Borman, Corinne Bump, Boardman Caterino, Mrs. John V. Cathcart , Edgar, M.D. Ewald, Frederick, M.D. Fairclough, James H., Jr. Goetzel, Edward J. Gordon, Marjorie Harris, William, M.D. Krane, Stephen, M.D. Kuehn, George 1-Ixxxviii 3-284 3-381 3-383 2-187 2-186 2-270 2-195 2-239 2-214 2-222 2-245 2-204 2-115 2-244 2-267 2-180 2-222 2-169 2-148 Leffert, Robert, M.D. McCann, Virginia H., R.N. Mills, John A., M.D. Olson, Tonda L. Plimpton, Katharine Quigley, T. Richard Reed, Walter S., Jr. Robinson, Dwight R. Sandson, John, M.D. Shur, Peter H., M.D. Stillman, J. Sydney, M.D. Brookline Speen, Bernice R. Buzzards Bay vVardack, Maxine Cambridge Hall, Arthur P., M.D. East Brewster Kaeselau, Mr. and Mrs. Jean Le. Greenfield Mankowski, Mr. and Mrs. Leon Hingham Furlong, John and Mary Lynn Boudreau, Joseph W. Graetz, Susan 1-Ixxxix Geographic Index 2-269 2-203 2-240 2-227 2-146 2-243 2-236 2-237 2-182 2-265 2-149 2-225 2-261 2-241 2-247 2-232 2-229 2-228 2-177 Geographic Index Medford Blesoff, Mrs. Benjamin 2-238 Partridge, Raymond, M.D. 2-212 Melrose Murphy, Lynne Marie 2~197 Murphy, Mrs. Charlene 2-196 Middleboro Ross, Harriet B. 2-247 New Bedford Coyle, Sandra J. 2-263 Lavertu, Elizabeth 2-167 Lynch, Richard J. 2-250 Muldoon, Frances 2-264 Muldoon, Mary F. 2-264 Muldoon, Thomas P. 2-264 Peabody DeSisto, Denise 2-234 Quincy Cook, Mrs. Helen 2-209 South Hampton Caroline, Sally Ss. 2-235 Wakefield Klasky, Elinor C. 2-264 1-xc West Medford Sweeney, Patricia and Thomas Westford Romanowski, Arnold P. Worcester Calabro, John J., M.D. Michigan Ann Arbor Becker, Marjorie, M.D. Jette, Alan M. St. Aubin, Wilfred Bridgewater Hulce, Ray Wyoming Manning, Donna J. Minnesota Edwina Haugen, Marilyn Rochester McDuffie, Frederick C., M.D. Mississippi Brandon Minchen, Sara Brookhaven Hood, Pat 1-xci Geographic Index 2-246 2-236 2-198 4-173 3-65 3-64 3-116 3-198 3-352 3-507 Geographic Index Jackson Barlow, Delores, R.N. Wilson, T.E. III, M.D. Meridian Tyson, Eraday Missouri Barnhard Watson, Marcine Barnhart Hill, Carole Cedar Hill Kaberg, Frances M. Chesterfield Ishams, Barbara G. Perkins, Aline R. Columbia Gaunt, William, M.D. Holsten, Donna, M.S.P.H. Odend'hal, Nancy Sisk, Charles, M.D. Defiance Buerreman, Eliza M. Fayette Moon, Christine Cooper 1-xcii 3-498 3-466 3-537 3-350 3-339 3-388 3-379 3-304 3-295 3-327 3-392 3-310 3-409 3-395 Ferguson Elder, Nina Florissant Forsting, Marvel F. Mikus, Anita orf, Norbert W. and Mary C. Scharr, Adela R. Hopkins Traster, Mrs. Floyd Jefferson City Bond, Christopher S., Gov. Henley, Bernice C. Kahoka Brewer, Jeanne E. Wiss, Mrs. Bernard Kansas City Adams, Viola Counts, Grace Eisberg, Joe, R.Ph. Hill, Alta B. Nelson, Hazel Rudi, Milton H. Smith, Kenneth smith, Lovetta, R.N. Waller, Gordon, M.D. Wells, John H., M.D. Williams, Ida M. Kirkwood Bardenheier, Kimberly Ann Bardenheier, Virginia 1-xciii Geographic Index 3-399 3-379 3-311 3-395 3-345 3-349 3-307 3-405 3«30% 3-401 3-380 3-350 3-360 3-401 3-352 3-353 3-378 4-282 3-281 3-291 3-397, 3-270 3-269 Geographic Index Lee's Summit Sears, Ethel E. Maryville Hayes, Jim Hayes, Sandra Mexico White, Robert M., II Moberly Orscheln, Don W. overland Davis, Argus W. Ozark Dye, Agnes Pacific Baumgartner Palmyra Thomas, Esther Poplar Bluff Tinsley, Austin R. Raytown Ergovich, Joseph 1-xciv 3-399 3-379 3-403 3-362 3-294 3-397 3-398 3-396 3-401 3-355 3-348 skidmore Wynn, Doris springfield Ferguson, John L., M.D. St. Ann McAlpin, Bertha, R.N. St. Charles Baker, Carol Hesser, Celeste St. Louis Aylward, Dee, L.P.T. Beakley, Robert Belanger, Mary Brown, James H. Buggs, Kathryn Carey, Margaret Daehn, Emma Dorner, Robert W., Ph.D. Dry, Victoria Gloe, Darlene Heckendorn, Ray Henehan, Sister Mary Hoffman, John C. Hulbert, Bernard, M.D. Kelly, Joseph F., Jr. Kuhlman, Robert E., M.D. Laurie, Gini Leichardt, Hal Leopold, Jane, M.D. Lightfoot, Georgia L. Lind, Rev Ronald H. Matyi, Elmer Mest, Debbie Moore, Edward E. 1-xcv Geographic Index 3-401 3-351 3-315 3-399 3-319 3-291 3-343 3-380 3-342 3-396 3-308 3-339 3-320 3-326 3-273 3-402 3-408 3-390 3-385 3-267 3-290 3-318 3-384 3-293 3-390 3-316 3-323 3-270 3-400 Geographic Index Morris, Alan D. 3-386 Muench, Robert 3-322 O'Connor, Dennis M. 3-305 Perlman, Eugene 3-341 Ross, Bernard A. 3-266 Ryan, Michael 3-268 Snell, Jeanne 3-348 Sturdevant, Roger 3-271 Tull, Robert 3-332 Zuckner, Jack, M.D. 3-275 St. Peters Vietmeier, Raymond H. 3-344 Montana Great Falls Dega, FoJe, M.D. 1-306 Nebraska Omaha Herd, Kenneth, M.D. >I Long, Robert S., M.D. 2-381 Paulson, Richard Ss. 381 saddler, Mrs. Owen L. 2- Nevada Las Vegas Hughy, Georgia 1-210 Mason, Cecile 1-209 New Hampshire Gilford Aldrich, Janet 2-206 New Jersey Rahway 1-xcvi New Mexico Albuquerque Bankhurst, Arthur, M.D. Hunt, John Messner, Ronald, M.D. New York Christian, Charles, M.D. Hammer, Nona Hirschberg, Ruth Rothstein, Barbara North Carolina Asheville Young, Paul, M.D. Durham Kline, John Kline, John L. Greensboro Murphy, Anne, R.N. Winston Salem Turner, Robert, M.D. North Dakota Fargo Geller, Sam Whiting, Laura Akron Ginther, James E. Athens Seelhorst, F. Elaine 1-xcvii Geographic Index 1-68 1-66 1-67 2-210 2-270 2-113 2-261 4-201 4-156 4-215 4-169 4-210 3-62 2-388 3-167 Geographic Index Centerville Kessler, Hazel F. Cincinnati Hess, Evelyn Oklahoma Oklahoma City Shultz, R. T., M.D. Portland Runyon, Robert V. Pennsylvania Camp Hill Gotshall, Germaine, R.D. Danville Viozzi, Francies J., M.D. Harrisburg Bachman, Leonard, M.D. Costello, Madalon Donsen, Charles P. Garry, Cynthia Kunkel, George, M.D. Leopold, Marx S. Nicholson, Janice Pfeiffer, Mildred, M.D. Podgorski, Sophia M., R.Ne. Hershey Book, Inga M. Burnside, John W. Palmyra Neiswender, Heidi, R.D.. 1-xcviii 3-112 3-129 3-363 2-356 2-120 2-111 2-65 2-14 2-73 2-57 2-11 2-21 2-17 2-24 2-13 2-134 2-115 2-58 Geographic Index Philadelphia Abruzzo, John L., M.D. iy Ballangee, James M. 2-294 Cathcart, Robert H. 5-88 Ehrlich, George, M.D. Granick, Risa, L.P.T. 2-122 Hollander, Joseph L., M.D. 2-8 Kuhn, Margaret E. 2-135 Myers, Allan, M.D. 2-70 Salmon, J. Warren 2-43 Tourtellotte, Charles D., M.D. 2-43 Pittsburgh Brownell, John E. 2-134 Carter, Sue, L.P.T. 2-124 Conrad, Paul, L.P.T. 2-126 Cready, Joyce 2-122 Eisenbeis, Carl, M.D. 2-97 Gruen, Hanna 2-120 Martin, Jerome L. 2-122 Mollinger, L.P.T. 2-125 Richardson, Robert W. 2-79 Rodnan, Gerald 2-59 Stegman, Olivia 2-113 Winger, Barbara 2-109 Steelton Glauser, Felix, M.D. 2-38 Rhode Island Corentry Wilson, Eunice 2-239 North Providence Richards, Mrs. Edward T. 2-266. Providence Kaplan, Stephen R., M.D. 2-201 McCann, Eithne, M.D. 2-251 Vitullo, Orlando 2-230 1-xcix Geographic Index Tennessee Knoxville Eyring, Edward J., M.D. &§ Campbell, W.B. 4-186 Memphis Hanissian, Aram, M.D. 3-450 Masi, A. T., M.D. 3-518 Townes, Alexander S., M.D. 3-485 Nashville Doyle, Marilyn, M.P.H. 4-178 Texas Angleton Singleton, Mrs. J.C. 4-365 Austin Adult Day Care Center 4-315 Bronk, Marjorie, R.N. 4-345 Davis, Ernestine 4-362 Doggett, Lloyd 4-372 Engroff, Norma L. 4-363 Frederick, Richard R. 4-327 Fredley, Terrie 4-320 Gizelback, Nadea 4-383 Goehrs, Homer, M.D. 4-292 Hawkins, Laura Lee, R.N. 4-360 Iscoe, Ira 4-370 Johnston, Marlin W. 4-331 Keys, Ann, L.P.T. 4-334 Lord, Michal Anne 4-398 Magiolo, Venera R., R.N. 4-360 Mayes, Vancy M. 4-345 Nelson, Debbie 4-335 Northington, Carolyn, R.N. 4-396 Presswood, Becky, O.T.R. 4-373 Pyle, Frances 4-400 Rocco, Barbara 4-253 Sessums, John V., M.D. 4-400 Seward, Jan, L.P.T. 4-365 Tisinger, Mary J. 4-398 Beaumont Breaux, Mrs. James Le. Brumfield, .Doris Bexar County Winn, Audrey C. Corpus Christi Hoepfner, Mrs. Fred Jones, Lawrence A. Myers, Robert C. Dallas Hunter, Dwight L. Shindel, William H., M.D. Smiley, Donald, M.D. Del Rio Boland, Robert R. Castellucci, Mae Jones Chavez, Cricelda Condry Louie Decker, Emmitt B. Gomez, Henry G. Mangels, Ralph Ricks, Philip A. Roberts, Robert J. Sapp, John P. Seylor, Lou Fort Worth cook, Marty Dibble, Paul L. Galveston Emery, Frank E., M.D. 1-ci Geographic Index 4-317 4-270 4-369 4-349 4-362 4-383 3-454 3-457 4-259 4-353 4-318 4-318 4-352 4-354 4-332 4-386 4-400 4-319 4-322 4-353 4-327 4-367 4-377 Geographic Index Harlingen Schwartzenbach, John R., M.D. 4-385 Houston Barkley, Elizabeth, R.N., L.P.T. 4-290 Bissett, Lois 4-323 Bland, Mrs. Jerry L. 4-322 Brewer, Earl J., M.D. 4-401 Brewer, Earl J, M.D. 4-239 Brook, Mrs. H. 4-367 Cecil, Cheryl 4-352 Easley, Ed 4-255 Elgohary, Kirilous 4-246 Gares, Jennie O. 4-329 Garza, Mrs. Alfred 4-245 Graham, June, L.P.T. and Maynard, Judy 4-277 Granberry, W. Malcolm, M.D. 4-321 Grinstead, Colette 4-330 Hatfield, Marit, L.P.T. 4-274 Jensen, Francine, M.D. 4-375 Keller, Mrs. Robert 4-337 Kemper, James W. 4-325 Lidsky, Martin D., M.D. 4-346 Mathews, J.C. 4-302 Mathews, Misty 4-246 Mathews, Mrs. Don 4-338 McCarty, Dorothy 4-315 Meloy, Mrs. Johnny, et al. 4-358 Merrill, Joseph, M.D. 4-348 Person, Donald A. 4-339 Ransom, Annette M. 4-326 Ryno, L.K. 4-392 Sack, Kenneth C., M.D. 4-316 sharp, John T., M.D. ’ 4-355 Stuntz, Debra Y. 4-344 Tally, Pat, M.S.W. 4-243 Tierney, Barbara, R.N. 4-344 Welch, Louis 4-394 Lackland AFB Hicks, James C. 4-385 Seide, Capt. Susan 4-382 Singleton, Lt. Col. Charles M. 4-376 wild, James H. Lt. Col. 4-345 1-cii Mercedes Hinojosa, Consuelo G. Midland Ferrell, Keith Richmond Armstrong, Janice san Antonio Anamosa, Kathleenn A., L.P.T. Ayers, Mary L. Barnett, Harry J., L.P.T. Brown, Richard E. Burt, Marguerite L. Combs, Guy S. Dawson, Willis R., Jr. Dillaplain, Cindy Dilworth, Grace, R.N. Farley, Pam Gonzales, lola C. Halloran, John K Hawkins, Julie R. Hempel, Karl H., M.D. Henry, Nancy V. Hollander, Ellen C. Hollis, Stella M. Hooten, Barbara, L.P.T. Irvin, Ervine Jackson, Carmault, B., M.D. Kennedy, Paula W. Koett, Lizabeth Burns Konak, Sue Lazo, Cecelia S. Lewis, Arden I. Longoria, Linda, P.T. Oliver, David B., Ph.D. Orphanidys, Helen K. Persellin, Robert H., M.D. Pfluger, Suzie, L.P.T. Pogue, Virginia Pratho, Theresa Pryor, Edith M. Pugh, Robert E. 1-ciii Geographic Index 4-393 4-267 4-366 4-359 4-397 4-391 4-368 4-387 4-300 4-386 4-320 4-401 4-310 4-390 4-397 4-392 4-347 4-336 4-373 4-364 4-361 4-401 3-434 4-372 4-389 4-373 4-395 4-338 4-359 4-384 4-328 4-262 4-361 4-387 4-395 4-314 4-368 Geographic Index Ramm, Pat, O.T.R. and Perry, Peggy W. 4-334 Rau, Mrs. William C. 4-388 Ricks, Robert E. 4-396 Robertson, Judy, L.P.T. 4-328 Saldana, Alice 4-369 Scales, Zilphen 4-319 Scales, Zilphia E. 4-361 Tajeda Robert A. 4-333 Vasquez, Rosario 4-396 Wathen, Nitak 4-307 Whiting, Patricia sS. 4-340 Williams, Minnie R. 4-358 Williams, Minnie R. 4-401 Wolf, Virginia, R.N. 4-363 Wright, Willie Mae 4-391 Zuniga, Magdalena 4-360 Tomball Nesby, Mrs. P.H. 4-343 Nesby, Mrs. P.H. 4-371 Nesby, Pat 4-314 Tyler Fletcher, David King, M.D. 3-455 Waco Suttle, Cec¥l J. 4-354 Weaver, Frank, M.D. 4-264 Utah Salt Lake City Anderson, Steven, M.D. 2-355 McGillis, Joanne S. 2-281 McNamara, James J., Ph.D. 2-347 Osbourne, Jean 2-388 Ward, John R. M.D. 2-291 Virginia Arlington Brown, Thomas and Clark, Harold 4-207 Mclean Solem, Louise 2-128 1-civ Richmond Mills, James P. Washington Bellevue Cato, Stewart C. Squires, James C. Bothell Weiss, Paul Bremerton La Prath Fairchild AFB Hesser, Wayne M. Kent Smith, Gayle Green, O.T.R. King County Morrill, Kent W. Lynnwood Barrett, Leonard Ridgeway, Barbara Marysville West, Charles E. Neah Bay Barber, Esther 1-cv Geographic Index 4-192 1-234 1-296 1-246 1-308 3-354 1-287 1-288 1-238 1-277 1-309 1-284 Geographic Index Port Angeles Shriner, Grace A. 1-313 Renton Tighe, Cordelia J. 1-304 Walker, Joyce M. 1-304 Seattle Anderson, David W., M.D. 1-279 Arakawa, Fuki, R.N. 1-252 Ashar, Kenneth 1-273 Bradley, Alice 1-306 Budlong, John 1-303 Chaplin, David M., M.D. 1-249 Cudhie, Bernice W. 1-297 Docter, Jack, M.D. 1-243 Donovan, William H., M.D. 1-245 Dorsey, George P. 1-303 Esquibel, Regina 1-250 Fordyce, Wilbert E., M.D. 1-311 Healey, Louis A., M.D. 1-272 Humphreys, Beverly 1-294 Jolley, Mrs. 1-240 Lehmann, Justus F., M.D. 1-280 Mannik, Mart, M.D. 1-290 Matthews, Carla 1-285 Petersdorf, Robert G., M.D. 1-299 Phillips, T. J., M.D. 1-305 Ryseff, Mrs. Joanne 1-292 Schaller, Jane, M.D. 1-236 Shimondle, Ruth 1-253 Simkin, Peter A., M.D. 1-275 Skeith, Maurice D., M.D. 1-289 Sparling, Nancy, R.N. 1-251 Wedgwood, Ralph J., M.D. 1-259 Willkens, Robert F., M.D. 1-267 Wilske, Kenneth R., M.D. 1-285 Tacoma Rains, Blanche 1-308 Toppenish Sampson, Melvin 1-268 1-cvi Walla walla Hardin, Ruth Wisconsin Adell Steverwald, Viola, R. N. Antigo Pos, Edward E. Appleton Brandt, Adeline H. Luecke, H. E. Torinus, Jack Be. Beaver Dam Berg, Myrtle M., R.P.T. Beliot Haugen, Clarion W. Beloit Boynton, Mrs. Ardis Berlin Ennion, Charlotte Matthias, Mrs. Donald Black River Falls Paar, Karen Rudkin, Mrs. Gordon 1-cvii Geographic Index 1-312 3-163 3-140 3-122 3-115 3-163 3-185 3-235 3-223 3-126 3-239 3-138 3-143 Geographic Index Brandon Mashuda, Marcella Brookfield Nero, Doris Swenson, Gloria Campbellsport Schmidt, Sylvia E. Cedarburg DeBenedictis, Marcia Gibbon, Irene Ritter, Mrs. Kenneth Chilton Thielmann, Dorothy Chippewa Falls Nayes, Mrs. Harold Cuba City Hanni, Arlene Cuday Ellen, Vera H. DePere Hopp, Harley Dodgeville Meikle, Irene 1-cviii 3-134 3-176 3-148 3-209 3-171 3-195 3-182 3-119 3-117 3-235 3-126 3-130 3-206 East Troy Weiss, Sandy Eau Claire Kothbauer, Joan EauClaire Isakson, Mrs. Kenneth Elcho Trythall, Mrs. D. Elm Grove Kunze, Winifred Sell, Mrs. Eugene Elroy Thorson, Mrs. Raymond Fond du Lac Clochesy, John M. Hoard, Mary Grace Mengel, Mary Geneva Vosicky, Mrs. C. Germantown Kanarowski, John Grafton House, Charles 1-cix Geographic Index 3-212 3.238 3-13 3-149 3-214 3-147 3-121 3-229 3-198 3-174 3-149 3-201 3-100 Geographic Index Green Bay Hansen, Mrs. Arthur H. 3-129 Nelson, Mrs. Wendel 3-175 Rueppel, Eunice A. 3-120 Schott, Donna 3-147 Greendale Hough, Robert E. 3-199 Pohl, Evelyn 3-208 Greenfield Piotrowski, Mrs. Edward 3-243 GreenBay Garot, Lil 3-234 Hales Corner Cornwell, Susan J. 3-218 Hartland McCarty, Daniel J. 3-39 Hayward Worby, Evelyn S. 3-251 Horicon Voy, Ruth V. 3-150 Hypertus Spinney, Viola 3-248 1-cx Jamesville Bosshard, Mina I. Janesville Falter, Ruth O. Sage, Mrs. John F. Kenosha Ryall, Mrs. E.V. Kenoshay Voigt, Christine Kenoshi Mattiole, Mrs. Angelo Keweenaw Hamachek, Mrs. Frank Ladysmith Bates, Carol Lake Geneva Hemment, Marguerite, R.N. LaCrosse Blank, Lois Liang, George C., M.D. Lyndon Station Shade, Evelyn 1-cxi Geographic Index 3-186 3-126 3-245 3«162 3-180 3-174 3-196 3-222 3-172 3-186 3-68 3-248 Geographic Index Madison Bautch, Judith C. Brunke, Adeline N. Davies, Loree, and Hanson, Erica Deauchamp, Lydia Edwards, Richard C. Ferstl, Lorraine Graham, David T. Graziano, Victoria Harloff, Helen L. Kiernat, Jean M., O.T.R. Neckerman, George M. Nelser, Adrienne Niles, Mrs. Richard D. Schreiber, Martin J., Lt. Governor Stark, Lewis Wilson, Robert J. Marshfield Bjarnson, David Meguon Minor, Mrs. W.P. Merrill Hartman, Ann Milwaukee Bernhard, Gerson C., M.D. Breitzman, Janet A. Brodaczynski, Joseph F. Bulin, Ann Burke, Mrs. R.G. Bush, Lucille E. Robinson Callan, Phylis Chernov, Mimi Clark, Vivian Forbes, Cynde Friend, Henry C. Frymark, Patricia J. Goldman, Allan L., M.D. Grisar, Carl 1-cxii 3-154 3-124 3-196 3-125 3-70 3-105 3-88 3-83 3-197 3-156 3-137 3-118 3-241 3-21 3-184 3-181 3-206 3-155 3-23 3-169 3-104 3-187 3-170 3-224 3-228 3-187 3-228 3-194 3-11 3-106 3-44 3-109 Geographic Index Grisar, Mary 3-219 Heiss, Marie 3-98 Jagger, Margaret 3-131 Kappelman, Mae 3-201 Kirchenberg, Mrs. Erwin 3-113 Klapstein, Mrs. Donald F. 3-132 Klein, Martha Gray 3-157 Kloppmann, Vera A. 3-173 Kowalski, Mrs. C. 3-114 Kruse, Audrey J. 3-173 Laatsh, Mrs. L.C. 3-132 Lemke, Janet 3-77 Lopez, Basillio 3-168 Lorentz, Mary Ann 3-73 Lovdahl, John 3-92 Madland, L. F., Ph.d. 3-134 Maier, Karl, Jr. 3-115 Mattushek, Irma 3-134 Meier, Walter R. 3-135 Members of an Arthritis Class 3-253 Moritz, Mary 3-206 Moze, Frank James 3-207 Mullarky, Mrs. H. 3-207 Nelson, Lorraine 3-207 Neuman, C.E. 3-240 Nuhn, Shirley N. 3-242 Ohlsen, Minna 3-208 Patzer, Esther K. 3-139 Pokorny, Edward J. 3-118 Puza, Emil A. 3-140 Radomski, Sylvia 3-140 Raudwer, John and Edith 3-141 Schwartz, Walter O. 3-146 Smith, Verle H. 3-148 Spangenberg, Ed 3-148 Spiro, Joanna H., and Hayden, Mary Claire 3-210 Stahl, Beatrice M. 3-120 Stenger, John G. 3-211 Stude, Norma 3-148 Treacy, William 3-97 Van Rossum, Marie 3-221 Wick, Arthur G. 3-152 Wruck, Chris 3-181 Zuege, Robert C. 3-152 Monroe Austad, William R., M.D. 3-153 1-cxiii Geographic Index Muskego Bartlein, Beverly 3-165 Neenah Cole, Mrs. James 3-105 New Berlin Zahorik, Janet 3-42 Oak Creek Oltarzewski, Beulah 3-138 oconomowoc Frazer, Mary Lou 3-127 Oconto Rockabrand, Betty F. 3-119 omro Potschaider, Lois 3-158 Oregon Bethel, Rose 3-223 Oshkosh Bowman, Gertrude H. 3-122 Fuller, Jean F. 3-214 Helm, Don 3-236 Jakubowski, Althea 3-199 Kevill, Hazel 3-132 1-cxiv Pepin Marcks, Fern Poplar Borg, Ruth Port Washington Schmit, Audrey Racine Cape, James F. Jacob, Leslie Klamer, Lorraine Rosenke, Mrs. Earl Ruffalo, Mrs. Frank D. Summer, Mrs. Howard L. Randolph DeYoung, John C. Reedsburg Miller, Alma Rose Seamans, Carol Rice Lake Raymer, Clare Reiten, Mrs. Ruber A. Roberge, Mrs. Donald Ripon Berg, Mrs. Eugene River Falls* Sunde, Mrs. Jack 1-cxv Geographic Index 3-239 3-103 3-146 3-154 3-111 3-202 3-143 3-145 3-178 3-125 3-239 3-210 3-244 3-141 3-251 3-223 3-218 Geographic Index Sheboygan Brookins, Bessie 3-224 Brotz, Mrs. Wilbur A. 3-103 Eurich, Mrs. 3-232 Gore, Donald R. 3-47 Kryzenske, Frank 3-168 Raven, Mrs. Henry 3-118 sudbrink, Arlinda 3-250 Wiegand, Annette J. 3-213 Wiegard, Annette J. 3-214 Shorewood Garces, Mrs. Pe. PF. 3-107 Siren Brown, Mrs. Arthur 3-123 Slinger Hayden, Paul W. 3-171 South Milwaukee Ziolkowski, Pearl 3-252 St. Francis Zolorski, Eleanor 3-182 Stevens Point Nelzel, Florence 3-137 Sturgen Bay Pankratz, Margaret 3-176 1-cxvi Sturgeon Bay Ennis, Ruby Nelson Kring, Carol Sun Prairie Fassbender, Mrs. W. Foley, Eloise G. Sussex Meider, Elsie Tomahawk Duxbury, Henry W. and Rosa L. Trevor Strande, Robert Viola Kalish, Bernice Virogua Vig, Rosalyn J., R.N. Wabeno Huetel, Mrs. E.A. Wanpaca Johnson, Mrs. L.M. Washburn Fletcher, Wellington 1-cxvii Geographic Index 3-229 3-204 3-105 3-233 3-135 3-166 3-249 3-111 3-179 3-237 3-110 3-106 Geographic Index ° Waukesha Forsyth, Ethel 3-234 Peterson, Douglas 3-208 Rather, Mary 3-141 Waupun Runholm, Eugene A. 3-162 Wausau Abrams, Juanita S. 3-153 Wauwatosa Czech, Paul C. 3-170 Gettleman, Fred W. 3-127 Hayes, Beatrice A. 3-110 Jacobson, Richard H. 3-84 Pelt, Cora V. 3-243 Solberg, Dorothy F. 3-217 Standorf, Claudia 3-72 Yost, William A., Jr. 3-164 West Allis Bartelt, Mrs. David 3-121 Frank, Lydia F. 3-194 Golob, Laverne 3-128 Jorgenson, Eleanor C., R.P.T. 3-200 Kuolt, Lorraine H. 3-216 Morrell, Iva 3-240 Sweeney, Mrs. Lester 3-250 Tivanovak, John J. 3-212 Welch, K. S. 3-152 Welch, Kathleen S. 3-151 West Bend Sauer, Reverend W.P. 3-221 Sauer, W.P. 3-246 1-cxviii Whitewater Underwood, Carl P. Winneconne Niemann, Carol Laramic Evans, Lloyd R. M.D. 1-cxix Geographic Index 3-251 3-241 2-380 BRANIFF PLACE HOTEL TUCSON, ARIZONA September 9, 1975 TABLE OF CONTENTS CHRONOLOGICAL LIST OF WITNESSES TUCSON, ARIZONA SEPTEMBER 8-9, 1975 MURPHY, Lewis Mayor of Tucson, Arizona BUCK, Gary, Ph.D. Project Director, Pima Health Systems HOLMBERG, James Vice-Chairman, Health Services Subcommittee, Planning and Allocations Division, The Greater United Way of Tucson SMITH, David Wayne, Ph.D. Assistant Vice-President, Health Sciences, Arizona Medical Center, University of Arizona KAUL, Robert E. Active Lay Person; Patient SARLLS, Wilbur Active Lay Person RIGGS, Gail Education Coordinator, Arthritis Services Program, Tucson, Arizona DE BENEDETTI, Clifford, M.D. Fellow, Pediatric Rheumatology, University of Arizona Medical Center ATTARIAN, Peter, Ph.D. Psychologist and Family Counselor, University of Arizona College of Medicine BREST, Lewis Active Lay Person; Patient DAVIS, Joanne Active Lay Person; Patient KENNEDY, Mrs. Joseph President, Board of Directors, Central Arizona Chapter, Arthritis Foundation 1-3 Page 1-12 FAIR, Corinne Public Relations Chairman, Arthritis Services Group, Southern Cochise County, Arizona BLACK FEATHER, Judith, R.N. Director, Community Health Nursing, Sacaton, Arizona BENSON, Warren Executive Director, Tucson Chapter, Arthritis Foundation SABO, Louis Active Lay Person; Patient HILL, Donald, M.D. Member, Holbrook-Hill Medical Group, Ltd. PARSONS, James, M.D. President, Pima County Medical Society VOLZ, Robert, M.D. Orthopedic Surgeon, University of Arizona Medical Center BOYER, John, M.D. Professor of Internal Medicine, University of Arizona College of Medicine SPRIGGS, John, M.D. Internal Medicine Tucson, Arizona SCOTT, Mrs. Lee Active Lay Person; Patient HUNT, John Administrative Director, New Mexico Arthritis Project, Regional Medical Program MESSNER, Ronald, M.D. Director, Arthritis Unit, University of New Mexico BANKHURST, Arthur, M.D. Rheumatologist, New Mexico REAVES, Alamo Active Lay Person; Patient 1-68 1-71 NOVAK, Sharon Parent of Child with Arthritis HOLMES, Bessie, R.N. Active Lay Person; Patient MARTIN, Billie Active Lay Person; Patient RICHMOND, June President, Arthritis Social Club GRIFFIN, Elizabeth Vice-President, Hi Hopes Swim Club ELLSWORTH, Dorothy Patient SPROGE, Alice Patient PUTNAM, Evelyn Patient DAVIDUKE, Eva Mae Lay Person LONG, Clarence Edsel Patient HERRING, Marjory Arizona Occupational Therapy Association GANDEL, Reverend Paul Husband of Patient 1-5 SUBMITTED STATEMENTS ALMADA, Rita Tucson, Arizona BAILEY, Mildred L. Pima, Arizona BYALL, Nellie Tucson, Arizona CANALES, Eva CLARK, Edna D. Page, Arizona CUNNINGHAM, Laura C. Phoenix, Arizona EICHENANER, John Phoenix, Arizona GARCHER, Frank S. Tucson, Arizona GILBERT, Virginia Tucson, Arizona HUGHES, Anne S. Tucson, Arizona KNOBLOCK, Dianne Tucson, Arizona LEE, Edith Phoenix, Arizona PHILBRICK, Mrs. I. A. Tucson, Arizona PHILBRICK, Mrs. Ivan A. Tucson, Arizona SISNEROZ, Anita Wilcox, Arizona VALENCIA, Rosemary Tucson, Arizona 1-6 Page 1-100 1-100 1-100 1-101 1-101 1-161 1-103 1-103 1-103 1-104 1-104 1-105 1-106 1-107 1-108 1-108 WABICK, Mrs. C. Tucson, Arizona WRIGHT, Alpha Blair Mes, Arizona BRUCKMANN, Mrs. Ludwig Tucson, Arizona CONLEY, Mary Alice Tucson, Arizona DOUSIS, Marjorie Tucson, Arizona DUPUIS, Mrs. Newton J. Tucson, Arizona EVANS, John J. Tucson, Arizona HASTINGS, Elizabeth Tucson, Arizona HUCK, Vera Tucson, Arizona LONG, Frieda H. Tucson, Arizona MARTINEZ, Rosalie Scottsdale, Arizona , SCHINNERER, William and Virginia Tucson, Arizona SUSKO, Delores Tucson, Arizona WILDA, Mrs. Kay Phoenix, Arizona SNYDER, Martin, M.D. Tucson, Arizona UTT, Richard D. Tucson, Arizona CULLINAN, Anna State Representative, Phoenix, Arizona 1-7 1-111 1-111 1-112 1-112 1-113 1-113 1-114 1-115 1-115 1-115 1-116 1-116 1-117 1-118 EHNERT, Mrs. Ray B. Tucson, Arizona GALL, Eric P., M.D. Tucson, Arizona KING, Bettie Tucson, Arizona LEUNG, Paul Tucson, Arizona UDALL, Morris K. Representative, Arizona WARNER, Mrs. W. C. Tucson, Arizona WINGATE, Edith A. Tucson, Arizona BRAZEL, James A. Tucson, Arizona D'ATTILIO, Doris Tucson, Arizona DOOLEY, Raymond N. Green Valley, Arizona DORSEY, Mary E. Tucson, Arizona HUMES, Lily Tucson, Arizona MARNELL, John W. Tucson, Arizona MAXWELL, Roberta Tucson, Arizona NELSON, Mrs. Emit G. Tucson, Arizona O'DONNELL, Ruth Tucson, Arizona PARTENHEIMER, Mrs. K. Tucson, Arizona 1-8 1-123 1-123 1-124 1-124 1-125 1-125 1-126 1-126 1-126 1-127 1-127 1-127 1-128 1-128 PUCKETT, Allan Tucson, Arizona RAHMING, Mary A. Tucson, Arizona SCHEURING, Mrs. Joseph Tucson, Arizona SCHINDEL, Almira Green Valley, Arizona SMITH, Morris B. Tucson, Arizona STROUP, Clair Tucson, Arizona STUART, Mrs. Amparo Tucson, Arizona TRULOCK, Frances Tucson, Arizona EVANS, Betsy Tucson, Arizona FAIR, Corinne Sierra Vista, Arizona HALEK, Mike CASSADA, Shirley I. Bisbee, Arizona EVANS, Betsy KRATCHMER, Dale E. Tucson, Arizona PAULY, Mrs. Frances Tucson, Arizona TESTERMAN, Elsie Marie Tucson, Arizona WOODS, Bill ARSNEAU, Mrs. Raymond Tucson, Arizona 1-9 1-131 1-132 1-133 1-133 1-134 1-134 1-135 1-136 1-136 1-137 1-138 1-139 1-139 1-140 1-142 BASON, Lona Tempe, Arizona BROWN, Mrs. L. M. Tucson, Arizona CLOUTHIER, Fred W. Bisbee, Arizona FRASER, Mrs. R. Tucson, Arizona HOUGH, Jean Tucson, Arizona KEAVENY, Mary L. Tucson, Arizona KING, Bessie Tucson, Arizona LESLIE, David Tucson, Arizona LUPU, Marian Tucson, Arizona MARTIN, John L. Tucson, Arizona MILITELLO, Rose Tucson, Arizona O'BRIEN, Mrs. J. E. Tucson, Arizona PETROVICH, Mildred Scottsdale, Arizona ROTH, Sanford H., M.D. Phoenix, Arizona MARDON, Lillian K., et. al. Tucson, Arizona 1-10 1-143 1-143 1-143 1-144 1-144 1-144 1-145 1-145 1-147 1-148 1-148 1-149 1-151 PROCEEDINGS ENGLEMAN: I will now ask the members of the Commission to identify themselves. My name is Dr. Ephraim P. Engleman. I am a practicing rheumatologist and a member of the faculty of the University of California in San Francisco. HAVERS: Lamont Havers, Deputy Director of the National Institutes of Health. BATCHELOR: Batchelor; I am with the National Institute of Arthritis, Metabolism and Digestive Diseases, and I am executive secretary to the Arthritis Commission. MELICH: I am Doris Melich, one of the four laymen on the Commission, from Salt Lake City. I am also president of the Utah Chapter of the Arthritis Foundation. POLLEY: I am Dr. Howard Polley. I am a rheumatologist from Rochester, Minnesota, the Mayo Medical School. WHEDON: I am Dr. Don Whedon. I am the director of the National Institute of Arthritis, Metabolism, and Digestive Diseases, which is in Bethesda, a suburb of Washington, D.C. GAY: William Gay. I am associate director of the Allergy and Infectious Disease Institute in Bethesda, Maryland. JENERICK: My name is Howard Jenerick. I am a physiologist and a member of the National Institute of General Medical Sciences of the National Institutes of Health in Bethesda. BRISSON: My name is Rosalind Russell Brisson. I am from Beverly Hills, California. I have been the victim of rheumatoid arthritis for seven years. LEWIS: Dr. Vivian Lewis, retired professor of kinesiology and physiology of exercise, Central State University, Wilberforce, Ohio. ANTHROP: I am Mrs. Verna Anthrop. I am a Pima Indian from the Gila River. I have been a victim of rheumatoid arthritis for 15 years. SHIELDS: I am Marlin Shields. I am a physical therapist. I am representing the allied health professions on the Commission. TI am from Salt Lake City, Utah. ENGLEMAN: At this time it gives me a great deal of pleasure, and on behalf of the Commission I express appreciation to some opening remarks from your Mayor, Lewis Murphy. 1-11 Tucson, Arizona September 8-9, 1975 TESTIMONY OF THE HONORABLE LEWIS MURPHY MAYOR TUCSON, ARIZCNA MURPHY: Thank you very much, Mr. Chairman. It's a great honor for me today, on behalf of the citizens of our community, to welcome the Commission to Tucson. I say it's an honor for two reasons. First of all, because of who we are. We are celebrating our 200th anniversary this year. We are a fiercely proud lot, we Tucsonians. We have lived under four flags in this community; our culture and our heritage comes from the Indian, the Spaniard, the Mexican, and the Anglo. We are a unique community in the United States. We are not just another city. For that reason we are honored and proud and delighted to welcome the Commission. But perhaps, more importantly, we are honored to welcome the Commission because of who you are and because of what you are doing in your most important work. Tucson, Arizona, is most concerned about your subject matter. We have very special problems in Tucson in the area of arthritis. As you undoubtedly know, as Commission members, the prevalence of arthritis-afflicted people in our community substantially exceeds the national average. I believe it is approximately 1 out of 7, as distinguished from your national average of approximately 1 out of 12. We have comprehensive service care availability in our community. We are extremely proud of the service that we are able to render in this area, and we are particularly pleased that you have come to meet with our citizens to help us in that particular area. We have the largest number of rheumatologists per capita in the United States of America. We are vitally concerned with the work of the Commission, with the hearings which you will conduct, and with the findings which you will propose. We are interested in what the results will be, and we are most appreciative to all of you for being here in our community. If my office or the City of Tucson can assist in any way, please do not hesitate to call upon us. Thank you so much. ENGLEMAN: Thank you very much, Mayor Murphy. I think that it's appropriate to tell you, all of you, that this is, in fact, the first public hearing of the National Arthritis Commission. And the question that we're often asked is: "Why Tucson?" The answer to that question has already been expressed ky your Mayor. We are very much aware of the outstanding community program that you have here in arthritis services. This is precisely what we want to hear about, and that's why we're here. The National Arthritis Act was passed in December of 1974. It was signed by the President in January of 1975. It authorizes the use of a 1-12 Tucson, Arizona September 8-9, 1975 substantial amount of money for research and education in arthritis, however, it does not actually give wus the money. As you know, the procedure in Washington is that one must first receive authorization. Having received authorization, then one must obtain the actual appropriation of funds. Now, it is the job of this Commission to create a Plan, a National Arthritis Plan. It is our job to set up guidelines and policies with which this Plan will be imglemented. We come to you, the National Commission comes to you, the citizens of Tucson, and we will gc to other cities. These public hearings are to provide a forum which will make possikle input from physicians, from other professionals, from the arthritis patient, and from the public at large, input which we as the Commission can utilize in the design of our Plan. The Plan must be so prepared that we will be able to sell to Congress and to the Administration the importance of obtaining the kind of appropriation which we will need. When we do go to Congress and the Administration for this kind of help, we know that we can count on the grassroots support from the citizens of the country, whose support will really make all the difference in how successful we are in obtaining our appropriation. We can now proceed. Dr. Buck, Mr. Holmberg, Dr. David Wayne Smith, and Mr. Robert Kaul, please come forward if you are here. At this point we will call upon Dr. Gary Buck of the Pima Health Systems. TESTIMONY OF GARY BUCK, Ph.D. PROJECT DIRECTOR PIMA HEALTH SYSTEMS TUCSON, ARIZCNA BUCK: Pima Health Systems is an experimental health services delivery system program. I will describe the activities of this program in some detail, but TI would like to continue on with Mayor Murphy's comments and describe our area in some detail for the members of the Commission. The southeastern part of Arizona is designated as a Health Systems Agency, an area for comprehensive health planning. The same area is covered by the Arthritis Foundation program in Tucson. But Pima County, which contains the bulk of the population of southern Arizona, has many characteristics which makes it a very interesting area for the location of any kind of arthritis treatment center or any experimental program and health services delivery. The health services delivery system in this area contains almost every conceivable form of delivering and financing health care, including a medical school, a university hospital, a Veterans' Administration Hospital, a military hospital, a number of Indian health service facilities, a county indigent care hospital and large outpatient department, a neighborhood health center, a variety of prepaid health care 1-13 Tucson, Arizona September 8-9, 1975 plans (including one for-profit and one not-for-profit health maintenance organization), and a foundation for medical care based on the San Joaquin model. We could continue regaling the Commission with the various different arrangements for treating the arthritic in this community, but I think only a few more are worth noting. We have a major rehabilitation center at the University of Arizona that has long experience in working with the arthritic patient. We have an internal medicine group practice in Tucson that serves arthritics from most of the states of the United States and many foreign countries. We have an arthritis service program, financed by the Regional Medical Program, that has one year of experience and has been funded for an additional year. The point being, that the linkages which must be established between the elements of the health services delivery system and any kind of arthritis treatment program in southern Arizona would literally encompass the full spectrum of modes of financing and delivering health care. Finally, I would like to mention the capabilities within our community for evaluating an arthritis treatment program. Pima Health Systems has created probably the most comprehensive health services data system which exists in the United States. We have data that range from household survey data on 4,700 residents of Pima County. We have data from every hospital discharge that occurs in Pima County going back to January 1 of 1973. We develop information on every emergency room encounter that occurs in our county. We have studies of ambulatory care from most of the institutional sites that I mentioned above, as well as private fee-for- service physicians' offices. We have executed studies where we have tracked the sources and uses of all funds for health services expended in Pima County. We have an exhaustive analysis of the health facilities in our community that will clearly make it possible for us to identify the gaps that exist in services within our community for the arthritic as well as other individuals in need of health care. The point that I am trying to make is that we have developed information that probably does not exist elsewhere in the United States that would enable us to know something about the services rendered to the arthritic in both in-patient and out-patient settings. This information includes detailed data on the services and procedures rendered to this patient and the medications, by type, that are prescribed. We also have information on people who are outside of the health care system that also will have arthritic problems. Therefore, we are in a clear positicn to evaluate the impact of any program that would be a new service for our community. And before I finish, I would like to make one statement about need. We have enormous amounts of information on the arthritic patient in Pima County. But if we were simply to apply national statistics on the rate of rheumatic diseases in our population, we would come up with an estimate of some 48,00C arthritic patients in the southeastern counties of Arizona. These would be the 1 out of 12 that Mayor Murphy mentioned that are afflicted with rheumatic diseases in our national population. 1-14 Tucson, Arizona September 8-9, 1975 But we know that projections are very dangerous on population figures and particularly dangerous when we are talking about certain unique subgroups of the population. Our data would indicate to us that rather than the 48,000 people in need of services for rheumatic diseases in our area, we have some 57,600 individuals that could benefit from any kind of treatment program within our community. ENGLEMAN: Thank you, Dr. Buck. If there were one thing that you would like to see written into our recommendations, what would this be? BUCK: I think that I would 1like to see a clear evaluation of the activities that will be made possible under the new Arthritis Act, or P.L.93-640, I think that we very often embark on new programs of service delivery, and we really are not clear whether our activities are having the intended consequences or whether they are activities that are economically feasikle and efficient. ENGLEMAN: And you feel that you have here techniques with which this kind of evaluation can be accomplished? BUCK: Yes; I think that in this community, or in southeastern Arizona, we probably have more baseline information on services now being rendered to people in need of health care than in any other place in the United States. ENGLEMAN: I should have said that the Commission has appointed several work groups made up of experts -- outstanding authorities in the United States. One of these work groups concerns community programs. I think it would be very helpful if your recommendation will be forwarded to this particular work group. Is there any question that any of the members of the Commission would like to ask Dr. Buck? HAVERS: How many other health system agencies are in Arizona? BUCK: Arizona has four designated health systems agencies. One is a multistate agency, the Navajo Nation that is part of Utah and Colorado as well. But we have one that encompasses Maricopa County, a very large population center, and two smaller counties. We have the five-county area in which Pima is located. ENGLEMAN: Any other questions from the Commissioners? LEWIS: Do you have a black population here in Tucson? BUCK: Yes; one have a multicultural population. We have significant representation in terms of all the racial and ethnic minorities that you would find in the United States. ANTHROP: Dr. Buck, of your rehabilitation center at the University of Arzonia, what are the continuing education activities for your nurses who work in these centers? 1-15 Tucson, Arizona September 8-9, 1975 BUCK: Dr. Smith is rprobably better able to comment on this than I. But in the Arthritis Service Program that was conducted last year, there were a large number of continuing education activities that were enthusiastically attended by allied health personnel, physicians, nurses, etc. We were able to evaluate this Arthritis Service Program, and it seemed to be something that was highly effective. ANTHROP: But these are postgraduate? BUCK: These are continuing education courses over and above the formal training required for their position. ENGLEMAN: Thank you very much, Dr. Buck. We now call on Mr. Holmberg. TESTIMONY OF JAMES HOLMBERG VICE CHAIRMAN, HEALTH SERVICES SUBCOMMITTEE PLANNING AND ALLOCATIONS DIVISION THE GREATER UNITED WAY OF TUCSON HOLMBERG: Mr. Chairman and Members of the Commission: I am James Holmberg. My residence address is 11221 East Shady Lane. I am appearing before you today as the vice chairman of a subcommittee in health services of the Planning and Allocations Division of United Way =-- Tucson. In conjunction with the planning and allocation of funds donated to the United Way, the health subcommittee has the opportunity to come in frequent contact with representatives of The Arthritis Foundation, Southwest Chapter, and other health service agencies funded by the United way. Such contacts afford the committee an insight into the needs and problems of persons affected by arthritis. It is our responsibility in the United Way to assist, insofar as resources permit, those agencies who would serve the victims of arthritis and their families because as you know, this or any other disease has widespread ramifications affecting the entire family unit. Tucson is extremely fortunate in having available The Arthritis Foundation chapter which has earned nationwide distinction for the quality of its diverse services. The United Way has endeavored to provide deficit funding for the chapter in keeping with the increasing demands being made upon its services by citizens of the southern Arizona area. These people have no other recourse available due to inability to qualify for county medical services or lacking the means to purchase medical care from private physicians. Unfortunately, voluntary contributed funds are sorely limited and, therefore, preclude an adequate response to the annual budget requests of the Foundation. My purpose here today is to make a case for action along several fronts, which will fill the gaps in the human services system and insure to arthritis victims and their families the health care as well as other allied services which as citizens of this community, State and nation they rightfully deserve. 1-16 Tucson, Arizona September 8-9, 1975 I am confident that many other persons appearing before the Commission will also testify to the following unmet needs: A. Family Counseling and other supportive services With but very few limited exceptions, family counseling services in this area are dependent upon voluntary (United Way) funding. Their service capabilities are critically limited. Experience has indicated the need to develop counseling and other supportive services provided by professionals specially qualified to deal with the problems (economic, emotional, marital) which so often accompany the onset of crippling disease. In this region having such ethnic -- cultural -- language diversity it is especially urgent that such services be provided by professionals and aides skilled in the language of the Papago, the Yaquis or the Mexican-Americans and cognizant of ethnic-cultural values and customs. This area (and I am sure most other areas) is critically short in this regard. As a consequence we must admit that the minority group persons named do not in fact have access to an adequate medical care system. B. Special Transportation Services Similarly, many members of these groups and Anglo citizens as well have the added Lkarriers of distance, isolation, and lack of public or private transportation. Consequently, the outstanding medical treatment programs of the local Arthritis Foundation or other services may be in fact inaccessible to them. As you well know, early diagnosis and treatment is essential in the case of this disease and others. Treatment denied or delayed means suffering, crippling, total incapacitation, and complete dependence on others on the part of the patient and the family involved. As a businessman I can appreciate the problems involved in funding, but I understand the economic folly of putting off the inevitable. Actions are indicated in the interest of the patients as well as in the common welfare. As a community and nation we must take those actions, including a reordering of priorities as necessary especially to free up the funding resources needed. C. National Health Insurance Until such time as NHI is enacted and available, we can be certain that countless victims of this catastrophic disease will fail to receive the care and relief they deserve. Access to the medical care needed should not be conditioned by the particular place of residence or economic circumstance if health care is, in fact, to be a right of every citizen. Only a Federally subsidized, nationwide system will suffice to guarantee to each citizen the health care needed regardless of place of residence or inadequate financial means. Such a system could make it possible for arthritis victims to travel and to relocate there or elsewhere when such is medically indicated. In addition, NHI is indicated for all citizens in order to minimize the impact of catastrophic health care costs on the family's financial resources. 1-17 Tucson, Arizona September 8-9, 1975 D. Special Transportation Federal subsidy funds should be made available to local governments to enable them to augment mass transportation with special door-to-door transportation for severely physically handicapped persons to insure access to medical care, employment, and recreation when the degree of disability precludes use of mass or private transportation. United Way contributed funds can never provide the adequate support needed. City taxes have helped to launch very limited special transportation services within the corporate limits, but even those are insufficient to cope with the ever increasing need. There are no special transportation services for residents in the county or rural areas. The tax resources of the county are insufficient and must ke augmented by special Federal grant funds. E. Medicaid Arizona is about to move into the 20th century with the long-awaited implementation of Medicaid and thereby lose the questionable distinction of being the only State not taking advantage of Federal funding subsidies for health care for low and marginal income persons. Indications are, however, that the eligibility criteria when finally met will restrict the benefits to just public assistance recipients and even result in a lower quality of care. The proposed program in Arizona, it is understood, will be of no significance for the notch group persons who are in the gray area between those already eligible for county care and others able through third-party insurance or their own means to secure the care needed. Consequently, that population of arthritis patients who have always depended on the local Foundation for medical care, counseling and special transportation and recreation services will have to continue to rely on an agency already severely limited financially. Those needing costly surgical procedures and impatient care will continue to be deprived. This situation points up the critical need for Federal intervention through inactment of the National Health Insurance Act. F. Sheltered Workshops Unfortunately, despite the many accomplishments of this community in responding to the needs and the potentials of persons suffering from arthritis, notice must be taken of a critical gap in our service system. (I am well aware that in respect to the matter few, if any, other communities have done fketter.) I am referring specifically to the lack of adequate sheltered workshop facilities for severely physically handicapped persons whose condition is such that there is little or no likelihood of their being able to secure and hold employment in a competitive situation. With no exceptions, the clients served at a United Way subsidized workshop are all on referral from the state department of vocational rehabilitation (Arizona Dept. of Economic Security). All clients are referred for purposes of training and evaluation in terms of feasibility. State/Federal subsidy terminates upon finding of non- feasibility for employment elsewhere. The local Goodwill Industries workshop also operates under the same State contract, policies, and circumstances. In only a few cases are non-feasible clients retained, but 1-18 Tucson, Arizona September 8-9, 1975 only on the condition of receiving compensation equivalent only to their actual production -- which is very limited. Implicit in this situation is short-sighted fiscal policy and discrimination against citizens least able to help themselves. Years of experience have certainly demonstrated the wisdom and payoff of strong vocational rehabilitaticn programs. Federal and State funds invested have paid significant dividends in the form of active, productive citizens who live and function with dignity and repay through taxes a goodly portion of the original costs of their rehabilitation. Conversely, experience has confirmed the fact that prolonged idleness and inactivity deepens physical disability and demoralizes the individual. Yet, this Nation and State continue myopically to short-fund rehabilitation programs and necessarily screen out and discriminate against the non-feasible client. The costs involved in developing and maintaining terminal workshops for the non-feasible are beyond the capability of voluntary contributions, so the responsibility must reside with the State and Federal Governments to act effectively to remedy this situation. There can be no justification for tossing aside or ignoring the physically handicapped (arthritic patients and others) and consigning such persons to a life of unproductivity. If the Commission is striking priorities among the many needs of this segment of our population, I urge that this matter be accorded the emphasis it truly deserves. G. Housing for the Physically Handicapped In conclusion, let me add yet another unmet need, in this case housing and supportive services for low income, severely physically handicapped persons. There are no such accomodations in this community for individuals other than confinement to a nursing home. Hopefully, the Retter Communities Act will eventually afford communities the means necessary to respond to this major, unmet need. I trust the Commission will also accord this need the significance it merits. Thank you for the opportunity to address the Commission. ENGLEMAN: Thank you, Mr. Holmberg, for a very excellent presentation. Any questions from members of the Commission? Mrs. Melich? MELICH: I would like to ask you if you have what we call in Utah the Transcultural Prcgram for Nurses? It has just started there and it seems to be a very fine idea. In cther words, where the nursing profession gets used to handling different ethnic groups. Do you have such a thing here in Arizona? HOLMBERG: There are programs that cover that as a portion of its overall program. I don't like to pass the buck, but I would prefer to leave technical questions on education and the actual implementation of the arthritis programs to Warren Benson, the executive director, who will 1-19 Tucson, Arizona September 8-9, 1975 be making a presentation later on. There will be several presentations that will be very technical in nature. ENGLEMAN: Any other questions? Thank you again, Mr. Holmberg. We'll proceed to Dr. David Wayne Smith. TESTIMONY OF DAVID WAYNE SMITH, Ph.D. ASSISTANT VICE PRESIDENT HEALTH SCIENCES, ARIZONA MEDICAL CENTER UNIVERSITY OF ARIZONA SMITH: I appreciate the opportunity to speak to this committee concerning unmet needs in the broad field of arthritis. I am a rehabilitation psychologist by profession and have served on the local Board of Directors of the Arthritis Foundation for 17 years. I am a member of the Medical and Scientific Committee of the Board, and was for 12 years Director of the University of Arizona Rehabilitation Center. I also served as the director of a three-year arthritis demonstration project which supplemented the medical services selected arthritis patients were receiving in our community with personal and vocational counseling, vocational assessment and diagnosis, physical and occupational therapy as directed by the patient's physician. Home modification services and self-help devices were designed to meet the needs of these particular patients and sccial casework services which the patient's family were provided. Funding for this project was provided by the Arizona State Health Department from Federal chronic disease funds and further supplemented by dollars and services from the State of Arizona's Division of Vocational Rehabilitation. In 1969 the Federal Government, without warning, changed priorities, and these types of funds were no longer available. Also, about the same time, the Federal Vocational Rehabilitation priorities were changed from servicing the physically handicapped as a high priority to services for the culturally deprived. Thus, this experimental project and the attendant services so critical to the patients! rehabilitation had to be terminated. Throughout the tenure of this project, we utilized the concept of treating the whole person with a staff composed of rehabilitation nurses, consulting. rheumatologists and orthopedists, physical therapists, occupational therapists, rehabilitation counselors, vocational evaluators, rehabilitation psychologists, social workers, home modification specialists, and job development specialists for a patient-load of approximately 150 persons. Close cooperation was maintained with the local Arthritis Foundation and other community agencies which assisted with transportation and other collaborative services. While time does not permit an in-depth discussion of all the outcomes of this unique effort, this program was quite successful in the 1-20 Tucson, Arizona September 8-9, 1375 utilization of a rehabilitation team approach. Many arthritis patients were able to develop the resources for coping with their particular life situation, including being able to function on a self-sustaining basis at home, thus freeing other family members during the daytime hours. Home modification and self-help devices were prominent aids in the rehabilitation of this group of seriously disabled arthritis patients. Through this project we also learned that often because of the obvious physical appearance of the patient, employers were reluctant to hire the arthritic even though he/she possessed the necessary skills and was capable of performing a full day's work effectively. The rehabilitation center's vocational evaluation and counseling staff cooperated with the State's Vocational Rehabilitation Agency in providing selective placement and encouraged prospective employers to hire the arthritis patient. Retraining for sedentary employment and job counseling with these patients and prospective employers made possible the employment of 45 heretofore dependent persons. Thus, 30 percent of this experimental population became taxpayers instead of taxtakers. There was a gap of five years between this community services program and the next funded effort. No comprehensive services for five years has imposed a serious handicap upon large numbers of arthritis patients in this community who possess the potential for profiting from such a program. I am sure similar circumstances exist throughout this country to which you could each attest. In 1974, through the availability of funds for arthritis projects provided by the Federal Regional Medical Program, the local Arthritis Foundation was successful in obtaining funds to provide some elements of the program we had originally demonstrated—in the late 1960's. This current effort has proven the value of such important services as continuous physical and occupational therapy, home modification services, and counseling for the patient and his or her family. The current literature is very clear concerning the value and need for comprehensive rehabilitation services. I am sure you are very much aware of the fact that the arthritis patient faces a long-term need for care and l=2arning to cope with this dreaded disease, and that the financial strain is such that the typical arthritis patient simply does not have the resources necessary to pay for adequate medical care, let alone the added cost of comprehensive rehabilitation services. Yet, I also know from my experiences that the services of counselors, physical and occupational therapists, vocational evaluation personnel, and other allied health workers are absolutely essential to an appropriate treatment plan. I believe the Federal Government was derelict in its role to provide funds for a three-year period in the late 1960's and to then withdraw these funds from a successful program. The same is true today when funds are being provided for arthritis services on a short-term basis through the Regional Medical Program. Few people in this country can afford to pay for the type of program I am describing, and vet such services are absolutely essential. Additional long-term financial resources must be developed, be this a national health insurance scheme or some other form of payment. 1-21 Tucson, Arizona September 8-9, 1975 In the yet to be developed additional arthritis centers, educational opportunities must be provided to physicians and allied health personnel about the value of comprehensive rehabilitation in the treatment of arthritis patients. The value of vocational evaluation, for example, and the potential of retraining for the arthritis patient must be a part of this exposure, since suitable employment provides feelings of worth that enhance the value systems of any individual. Fortunately, through the Hill-Burton Construction Program, the efforts of the State rehabilitation agencies and such organizations as the National Rehabilitation Association and the Association of Rehabilitation Centers, this country has a large number of rehabilitation centers and sheltered workshops that could be mobilized as an integral part of this nation's effort to provide more comprehensive services to arthritis patients. To develop new arthri®=is centers with only a medical orientation would, in my Jpinion, not be a wise use of tax dollars. I might add here that I participated in visitations three years ago sponsored by the National Arthritis Foundation's allied health section that evaluated existing arthritis treatment centers. I was disturbed by the fact that there were no comprehensive rehabilitation services provided at either of the two centers I visited, and that treatment and research efforts appeared to be limited to medical areas. I trust my remarks will be helpful to you in developing a broader perspective with respect to the needs of the arthritis patient. Thank you. ENGLEMAN: Thank you, Cr. Smith. Any comments or questions? SHIELDS: I have heard it alluded now by the last two speakers --telling the benefits or the believed benefits of rehabilitation for the arthritis patient. Of course this is a view that I share also. One of the real concerns that we have is in terms of gathering some information and data and written words that explain the cost-benefit of such a program. Do you have anything, of the projects you have talked about that have gone on during that period of time, that could be of help to the Commission in this important area? SMITH: Yes; I did kother to dig out some statistics. I am speaking now kack about 1969. The cost for either rehabilitation into employment or for rehabilitation for self-care was approximately $2,C00 per patient per year. As you well know, from the State-Federal agreement in rehabilitation you have 18 months to determine the rehabilitation potential of a patient. What I'm talking about now is approximately up to about $3,000 for rehabilitation either into gainful employment or into becoming self- sufficient at home, which to me, is very important. I think we can still do it for about that. ENGLEMAN: Any other questions? Thank you very much, Dr. Smith. 1-22 Tucson, Arizona September 8-9, 1975 I am going to ask at this time that the following come to the table: Mr. Kaul, Wilbur Sarlls, Gail Riggs, and Clifford DeBenedetti. Before I call on these people I want to, on behalf of the Commission, acknowledge a statement that was addressed to the Commission, a statement of Representative Morris K. Udall to the National Commission on Arthritis and Related Musculoskeletal Diseases. I shan't read the entire statement, but I will simply read the concluding paragraph: "We in southern Arizona greatly aprreciate the Commission's courtesy in scheduling a hearing in Tucson, and we know you will receive ideas and advice helpful in laying out the coordinated attack needed to combat the nation's number one crippling disease." We're very grateful to Representative Udall for his excellent statement. We will now proceed and call on Robert Kaul. TESTIMONY OF ROBERT E. KAUL ACTIVE LAY PERSON/PATIENT TUCSON, ARIZONA KAUL: I, Robert E. Kaul, being first duly sworn on oath depose and say: (1) I reside at 5433 East 8th Street, Tucson, Arizona, am 45 years of age, married, have two children and practice law full-time here in Tucson. (2) I first had symptoms of rheumatoid arthritis in 1957. At that time, I was 27 years of age, living in Minneapolis, Minnesota, and was just three years out of law school. (3) For the first two years starting in 1957, I received medical treatment for my arthritis without any beneficial result. My knee joints were most severely affected, and at the end of the two years, I was barely able to walk. For all practical purposes, I was unable to work, even in an occupation that required little physical capability. (4) In 1959, I went to the Mayo Clinic, Rochester, Minnesota. Their treatment led to synovectomies on both knees. Later, I was started on a program of gold injections which TI am still receiving. I believe that koth the surgery and the gold program have been major factors in restoring me to the ability to work. (5) To focus on the cost of this treatment, including the knee surgery, in less than a nine-month's period in 1959-196C, I incurred medical and hospital expenses totaling $4,734. To put this 1959-1960 cost of $4,734 in a 1975 context, consider that the daily charge for my hospital room was $19. That $4,734 would 1-23 Tucson, (6) (7) (8) (10) an Arizona September 8-9, 1975 translate into about $14,000 if I assumed that medical costs have trebled since 1959. I know that hospital room rates have almost quadrupled in that period. I was able to pay said $4,734 only because I was still covered by my former law firm's group insurance and it paid most of this sum. In 1960, my wife and I moved to Tucson, Arizona. My doctors advised against such a move, knowing that it was not a cure and believing it would be disrugtive. Nonetheless, we received advice from scores of laymen that Tucson, Arizona had the climate that had helped many arthritics. In any event, getting away from the ice and snow of Minnesota was a plus for any arthritic, where the possibility of slipping and falling could be most damaging. From 1960 on, I have continued to receive excellent care from Tucson rheumatologists. Additionally, Tucson did have two heated swimming pools, and I believe that this type of physical therapy has been very beneficial. Even with excellent treatment, it was a long haul back to being able to work, three years in fact. During that time, my wife and I subsisted primarily on Social Security disability benefits. At the end of the three years, I was back practicing law part time, then working full time with a trust department of a local bank, and finally back to the full-time practice of law in 1976. I have to note that, from a taxpayer's point of view, money spent on research and treatment of arthritis has to be a promising investment. For example, from 1960 to 1962, I was receiving $1428 annually in Social Security disability benefits, and paying no taxes. Last year, I paid $8,762 in income and Social Security taxes. That amounts to a plus of $10,190 a year on one patient alone. The only reason to take time in presenting this statement is if my case illustrates anything typical of arthritis patients. I believe it does in that: (a) Arthritis is a disabling disease and deprives the victim, his family, the economy and the Government of substantial sums of money. (b) Medical and surgical treatment is available to bring many patients back to a normal, productive life. (c) Such treatment can be enormously expensive and beyond the financial ability of most patients, unless they have excellent health insurance coverage. Unfortunately, many arthritis patients need this treatment at a time when they are unemployed, have no group health insurance, cannot afford individual-rate policies and have little or no savings to fall back on. 1-24 Tucson, Arizona September 8-9, 1975 (12) When the National Arthritis Act of 1974 was enacted, it gave hope to many of the millions of arthritis patients in this country. This statement is given to encourage The National Arthritis Commission in its task of getting the funds needed to carry out the promise of this legislation. ENGLEMAN: Thank you very much, Mr. Kaul. Any questions from members of the Commission? MELICH: I'd like to ask him something. Since you are a patient, I would like to ask you, did you have any rroblems in getting your family to accept the problem that you had--and also your law firm? In other words, I'd like to know the reaction of the family and the community or the people you were involved with. KAUL: As to the family, we had no children at the time when I was in the worst shape. My wife was excellent and most encouraging, and, you know, was a part-time physical therapist, etc. And so I am one of the luckier patients in that respect. As far as the community is concerned here in Tucson, I again have to be very thankful in that employment cgrortunities became available as I improved. And fortunately, with a law background and without needing a lot of physical abilities, I had few problems. Now TI know from communications with other arthritics where physical ability is important, and I know that the employment market in Tucson is not all that we would like it to be, that I am not typical of arthritis patients in this respect. MELICH: Thank you. ENGLEMAN: Thank you again for your very excellent presentation. Wilbur Sarlls. TESTIMONY OF WILBUR SARLLS ACTIVE LAY PERSON TUCSON, ARIZONA SARLLS: Good morning, my name is Will Sarlls. I am here speaking for a very personal reason. I have a daughter with rheumatoid arthritis; she is 11 years old and her name is Kim. She has had rheumatoid arthritis since the age of 2. When Kim got sick for the first time we took her to the hospital, and it took four days for the doctors to determine that she had rheumatoid arthritis. The doctors started medical treatment, asprins, and steroids. Kim looked as though she was getting better. Little did I know of the pain, hurt, and pure agony my little redhead would go through the next several years. By the time Kim was 3 years old the disease had really started to work on her, high temperatures and stiffness in most of her joints. We raised 1-25 Tucson, Arizona September 8-9, 1975 the steroid dosages higher and higher to try to keep the arthritis under control. The doctors left the regulation of the medicine primarily up to us. It was a big responsikility. By the time Kim was 5 she had experienced more bad days than good ones. My wife and I had to do something to help, so we talked to the doctor about moving to a better «climate. The doctor said how about Arizona. The doctor in Kansas gave us a name of a doctor in Tucson. Six days later we pulled into Tucson with hopes and prayers this would be the answer. We tried to contact the doctor we had been referred to. He couldn't take us, but he gave us doctor Tretbar's name. We were very hopeful that this would be the answer for Kim. That was 6 years ago. It was a difficult time, but we were very determined. I got a job; it didn't compare to the one I had, but it was a start. The financial burdens on our family were very heavy. With a chronically ill child there were many expenses. The doctor realized our situation and talked to us about the Arthritis Foundation. I wonder many times how our lives would have been without the Foundation and all the people who make it what it is. We do not feel nearly so alone. We realize that there is only so much that can be done for Kim at this time. But we must feel that everything that can be done will and is being done. With the Foundation, Kim has had weekly visits to the clinic. We were very pleased when they were able to start a separate clinic for the children. She has had a much wider range of medical treatment at the clinic. At the clinic we met many other families with problems like ours and we realized then how many more need help like us. It is up to us the adults to speak for these children and tc do all we can in their behalf. There are many people who have come here from all over the United States with the same hopes we had. Kim has had a very rough time even since we came here. For a while Kim went to school on crutches; now she sits home in the wheelchair and the teacher has to come to her. The side effects of the medicine are now causing severe problems, because of the prolonged use. I pray that there are better treatments found and possibly someday a cure. I pray that Kim does not have to look back cver the next few years like she has had to the last eight years, and that no other child will have to go through what she has. ENGLEMAN: Thank you very much, Mr. Sarlls. Your story of your daughter Kim, I think, is a most dramatic illustration of the fact that we do, in fact, have a serious problem that involves not only the adults but children as well. We're becoming increasingly aware of the prevalence of what we refer to as juvenile rheumatoid arthritis, which, I gather, Kim has. I'm pleased to report to you that the National Arthritis Act pays special attention to the problem in children. And, in fact, it is because of this that we have several pediatricians who have been assigned to our 1-26 Tucson, Arizona September 8-9, 1975 work groups whose reports will be incorporated into the recommendations of the Commissien. I assume that Kim has been seen by appropriate orthopedic consultants? SARLLS: Yes; she has. ENGLEMAN: Yes; fine. HAVERS: Mr. Sarlls, I was wondering whether the teacher for Kim--is that part of the county schcol system, or how is that arranged? SARLLS: Yes; it's part of the school system. ENGLEMAN: Any other questions from the members of the Commission? Thank you again, Mr. Sarlls. We will then call on Gail Riggs. TESTIMONY OF GAIL E. RIGGS EDUCATION COORDINATOR ARTHRITIS SERVICES PROGRAM ARTHRITIS SERVICES PRCGRAM, TUCSCN, ARIZONA RIGGS: I'm speaking today both in my capacity as Education Coordinator of the RMP Arthritis Services Program and as a rheumatoid arthritic. As coordinator, it has been my responsibility to develop educational programs for patients, physicians, nurses, therapists, and others, not only in Arizona's metropolitan areas, but its rural communities as well. It is apparent that there is a need for such education, and it is also apparent that health personnel and, especially, arthritis patients want this education. Tucson is a community that is aware of its arthritis population and it is becoming more aware. Life is easier here for these individuals...physically, psychologically. There are fewer institutions and businesses today that aren't mindful of the handicapped. (Some must be prompted to act.) Here in the Southwest the arthritis population is growing and will continue to grow. Consequently, the health care community is going to have to be better equipped to take care of this growing number. It will not be enough to just be aware of the problem of arthritis, but necessary for health rrofessionals to increase their knowledge and improve their skills in this area. We have found that many of the best nurses, therapists, and doctors don't have the training in rheumatology or the understanding of its psychological implications. And very few are actively ccncerned with the comprehensive problems of the arthritic. Patients and their families also frequently have little information about their c¢wn rheumatic disease. Not only does this lead 4 frustration, but it interferes with their ability to comply with medical recommendations and to ccunter quackery. Physicians, nurses, and therapists need better tools and techniques with which to discharge this part of their professional responsibility. (I might also add, they need more time... and if this is impractical, then alternate solutions need to be found.) The importance of the health 1-27 Tucson, Arizona September 8-9, 1975 professional in discharging this educational responsibility cannot be stressed enough. Information must get to the patient. He should be the main member of the health care "team." Often, patients don't have enough information to know what questions to ask. Health providers must Le cognizant of this. The patient is more apt to act, to comply, to participate in life if he understands. (Last year hundreds of arthritis patients attended our workshops that were conducted by the Arthritis Services Program, and hundreds more have already registered for Patient Education classes that will start here in Tucson next week and in Phoenix in October.) During the past year we have had the support and cooperation of the Tucson and Phoenix health care communities in helping us with our arthritis pilot project. They have provided consultation and the expertise necessary to train and teach others throughout Arizona. The latest techniques, informaticn, and research have been shared. With this continued exchange and cooperation, arthritis patient care cannot help but be improved. Those of us who have had a lifetime of arthritis look forward to some long overdue progress with the implementation of the National Arthritis Act. Thank you. HAVERS: Thank you very much, Mrs. Riggs. There is one part there which I missed. I think you said for the health professional, or the need for health education--they need more time. I wasn't quite sure just what context the "need more time" was. RIGGS: To discharge some of their educational responsibilities to the patient. HAVERS: You mean, more time with the patient? RIGGS: Yes. HAVERS: Oh, I see. You are then the coordinator of the pilot program of the RMP? RIGGS: Education Coordinator; we also have a Project Coordinator. HAVERS: How long will that last? RIGGS: We had a one-year pilot project last year. We were refunded this year. We will be funded through June of '76. . HAVERS: And then what hagpens? RIGGS: We don't know. We will, hopefully, receive another grant. HAVERS: Oh; but there's no chance of the local funds coming in to carry on that project? 1-28 Tucson, Arizona September 8-9, 1975 RIGGS: We're making efforts in that direction. Some of the programs that we've taken into the outlying communities are now supporting themselves. We have a group in Sierra Vista that is an ongoing project. HAVERS: Very good. Thank you very, very much. The next, Dr. DeBenedetti. TESTIMONY OF CLIFFORD DEBENEDETTI, M.D FELLOW, PEDIATRIC RHEUMATOLOGY UNIVERSITY OF ARIZCNA MEDICAL CENTER DEBENEDETTI: I'm Dr. DeBenedetti. I'm a fellow in pediatric rheumatology at the University of Arizona Medical Center. I work at the Childrens! Arthritis Clinic, and have been sponsored, in part, through the efforts of the Arthritis Fcundation here in Tucson. I apologize for not having a prepared statement. I wasn't informed that I was to testify today, but I would like to give you some of my thoughts. I'm a pediatrician. I have done all my training in Arizona. I became interested in the child with arthritis during my residency here in Tucson. I have been working with the arthritis clinic. We have approximately 40 children in our clinic. As you know, the problems of the child with arthritis involve very much the physical disease, but certainly there's a great deal of family counseling that has to be provided, psychological support, and total patient care. We are extremely interested in our arthritis clinic -- through the help of social workers, rghysical therapists, occupational therapists, psychologists -- in developing programs that will be aimed at total patient care. We have been able to make great strides here in Tucson with the help that I've had from the local Arthritis Foundation. One of my great frustrations as a physician has been our children from the more rural areas. We have several patients from the Indian reservation, patients from further areas in the State. It is very hard for them to come in and receive care. The training of the general pediatrician is, in great part, based on acute care. The monumental grograms in pediatrics are newborn intensive care and the child with life-threatening illnesses. We often find it difficult to shift our emphasis to the child who has a chronic disease. One of our big efforts in this area is to teach our students and health staff the impcrtance of the care--the total care of the child with arthritis. We've been able to do this at our arthritis clinic. The child in the rural area, however, the child who's been taken care of perhaps by a family physician or pediatrician whose training has not been optimal in the rhematic diseases, is often receiving perhaps not the best of care that he could. 1-29 Tucson, Arizona September 8-9, 1975 I have traveled out with the Regional Medical Program here to the reservation at Sacaton, where we had a primary health care physician who is very interested in the patient with arthritis. He was able to set up an entire clinic there and provide very good care, with some backup from the rheumatologists at the University Medical Center here in town. We feel that we can provide excellent comprehensive care on a state- wide =-- on a regional basis, if we could implement these programs of regularly visiting the outlying pediatricians, family practitioners, and giving the patient total care -- not looking on this as a problem of just one joint or multiple joints, but looking at the patient as a child in a family unit. HAVERS: Thank you very much, Cr. DeBenedetti. Can I ask, how many children with qjuvenile rheumatoid arthritis do you have in your clinic? DEBENEDETTI: At the Childrens! Arthritis Clinic we have approximately 40 children. HAVERS: Forty children? DEBENEDETT I: Yes. HAVERS: And how many would you estimate within the surrounding area that you wish to travel into? DEBENEDETTI: Our population waxes and wanes certainly a great deal. We're currently involved with the six southern counties. I'm thinking of a more regional kasis, including perhaps the entire State and New Mexico and Southern California... so that I think we would at least double that number. HAVERS: In your clinic itself, do you have the access to a large array of allied health professicnals? DEBENEDETTI: Yes. HAVERS: Social workers? DEBENEDETTI: We have social workers, physical therapists, and occupational therapists. We have psychologists that we can call upon-- home modifications experts. The thing that I'm very interested in is getting the physician out to the area where we're treating our patient. And I'll tell you that I spent a month in Nicaragua during my vacation as a pediatrician, and was treating a group of people who had totally different lifestyles and circumstances than we have here. One of the big problems was skin infections. We would recommend boiling water, soaking it three times a day, without understanding that it took the mother half a day to go out and gather that wood to boil the water --making recommendations that are not valid. 1-30 Tucson, Arizona September 8-9, 1975 HAVERS: Right. DEBENEDETT I: The physician needs to get out, I think, at least on one occasion to see the circumstances the patient is working under, living under, and what he is up against in the world. HAVERS: I couldn't agree more. I'd like to come back, but let me ask if there are other questions. Anybody else? Yes, Don. WHEDON: You mentioned that you have a number of allied health reople available in the treatment. Are they specially trained in arthritis management? DEBENEDETTI: Yes. WHEDON: And where do they receive this kind of specialized training? DEBENEDETTI: The people that we're utilizing now are with the Arthritis Foundation here in Tucson, the local chapter. WHEDON: Thank you. DEBENEDETT I: We very much are involved in training our students, nurses, health staff, and teaching them about this disease. As I think Mr. Sarlls indicated, it's an illness that, though it's not extremely common, is one that can easily be misdiagnosed. It can be present in many different fashions. The more that we can educate our local physicians and our general pediatricians as to the many different forms it takes, we can institute our treatment much sooner. HAVERS: Do you have any questions, Dr. Batchelor? BATCHELOR: I'd like to ask Dr. Benedetti, you spoke of one outreach effort, the location at Sacaton, are there cthers that you've tried? DEBENEDETTI: Yes; there's the one at Sells, on the reservation also. The group has been going out to different areas, to Bisbee, Benson, and advising the local physician. BATCHELOR: Thank you. MELICH: I'd like to ask you--you say you're training these particular groups of allied health people, how lcng do you figure it takes to train an adequate team, in other words, an arthritis team, which we are talking about in our Commission right now, in order to do a comprehensive kind of job? DEBENEDETT I: I think this depends entirely on the emphasis that we put on it, the number cf patients that we have to care for. I think it's a matter of time ard individuvalization, depending on the person that you're working with. I think that there's nc set time that we would want to put on it. We just want to train them properly. 1-31 Tucson, Arizona September 8-9, 1975 WHEDON: Is it fair to say that this would be mainly an on-the-job type of training rather than a formal kind of a training program that the physical therapist -- after his basic training in physical therapy -- that there is no formalized program at the moment? It's mainly because you have therapists involved with this arthritis problem. They come on board. And is it on-the-job training instead of formal? DEBENEDETTI: Yes; in my roles pediatricians were never trained in pediatric rheumatology. Just within the past few years have there been specific fellowships for rpeople to train, to spend several years doing just pediatric rheumatology. Prior to that it was all just as the patients came along. HAVERS: Thank you very much, Dr. DeBenedetti. I think we must push on, even though I think we wculd like to carry on. Dr. Attarian. TESTIMONY CF PETER ATTARIAN, Ph.D. PSYCHOLOGIST AND FAMILY COUNSELOR UNIVERSITY OF ARIZONA COLLEGE OF MEDICINE ATTARIAN: I'd like to deal very briefly with the emotional needs of the arthitis patient. I feel it is very important to provide arthritis patients with opportunities for counseling. These efforts should focus on such problems as the emotional impact of dealing with this chronic illness, learning to cope with pain, or simply dealing with the frustration, anger, or hostility that is often associated with this disease. In a recent workshop we conducted which focused upon arthritis patients, they made it clear to us that they were strongly in favor of opportunities to work in a counseling relationship on their problems. They felt that all members of the family of an arthritis patient should be involved because, in effect, new patterns of interaction among family members were required because of the disease. In direct response to this request we began group and individual ccunseling efforts. I particularly found group therapy to be a useful way of allowing the patients to express the repressed frustration, anger, and hostility experienced as a result of having to cope with this disease. In counseling relationships with arthritis patients, my major concerns have been twofold: (1) to help them to reopen the communication within the family, aiding them in clearly communicating feelings to other members of that family and (2) helping the patients to release their tensions and showing how essential and how healthy it is to express their pentup anger, hostility, or resentment. In summary, it 1s crucial for arthritis patients to make certain adaptations in their lifestyle. These adjustments can be made because they are still persons who are 1loved and worthwhile, regardless of their arthritic condition. These very adjustments and change in feeling and attitude are often best explored in counseling relationships. This is why I feel either family, group, or individual counseling is a most worthwhile 132 Tucson, Arizona September 8-9, 1975 and effective way of working through scme of the emotional problems which face the arthritis patient. HAVERS: Thank you. I understand at the moment, then, you're doing this primarily at the medical center? ATTARIAN: We're doing it both at the medical center and also for the Arthritis Services Agency. HAVERS: On referral? ATTARIAN: No. I'm working for them as a consultant, and we're having groups, both led by mvself and by other professionals. We began last year and we're oversukscriked for three groups that were begun. We're continuing them in the fall. I'd like to point out, the gentleman that's going to follow me was one of the sparkplugs at the workshop that raised this need and raised the issue. And he and many others came to us and said, "This is a very viable need that we have." And so we responded tc it. HAVERS: I don't quite understand. Say there is a patient with rheumatoid arthritis with a family prcblem in the community not associated with the medical center or anyone else, how does he get into your program? ATTARIAN: Through the Arthritis Services Agency. Individual counseling is available through the project coordinator as well as groups which are under their auspices conducted throughout the town. HAVERS: . I see. And this is then part of the thing which is funded through next fall? ATTARIAN: Exactly, through the RMP. HAVERS: And that may cr may not be continued, depending on whatever comes around? ATTARIAN: Exactly. HAVERS: Will ycu be putting in any type of evaluation of your service? ATTARIAN: We're planning to do some evaluation of the group therapy this coming year; yes. HAVERS: Any other questions from the members? I can appreciate the importance of this work, seen this since the early fifties. It's a very difficult area, but a very worthwhile one. I take it, then, that you'd recommend that the Commission at least take cognizance of this type of community service or the service to the arthritic which is desperately needed? 1-33 Tucson, Arizona September 8-9, 1975 ATTARIAN: Yes; I think you've heard it from other speakers alluded to and will hear from the others the need is there and is ever present, not only for the arthritis patient but certainly, in my prejudice, believing that the arthritis victim also has a family that is vitally involved in this. HAVERS: That's right. Dr. Attarian, you have a question. ANTHROP: Dr. Attarian, I'm glad to hear you say this because I realize this is a very vital issue with the rheumatoid arthritic, not only the patient, but the family, the psychological trauma and the impact. To me, this is tremendous. And I think this little cog that started it should be given a big star fcr doing so. ENGLEMAN: Thank you. Mr. Brest. TESTIMONY OF LEWIS BREST ACTIVE LAY PERSON/ PATIENT BREST: Memkers of the National Arthritis Commission: I want to thank you for giving me this opportunity to appear before you today. My name is Lewis Brest. I am a resident of the City of Tucson residing at 2806 North Tucson Boulevard. I have been a resident of Tucson since 1967, when I moved to Tucson from Pennsylvania for my arthritis. I am age 27, and I have had arthritis since I was seven years old. I have had a lifetime of involvement with various medical programs, rehabilitation programs, and corrective surgery, the last being a total hip replacement two years ago and a total knee replacement just this past April. The disease I have is a lifestyle disease. It's one that I have had to learn to live with and to accept the reality that it will be with me for the rest of my life. The theme of my address is that there is hope today -- a lot of hope -- and there's hope here in Tucson. The arthritis that I have is a disease that becomes a disability that lends itself to the ongoing care, the ongoing maintenance type of medical care. It is a disability that, as I try to maintain the lifestyle of my choosing, the best care I receive is the «care that supports me in accomplishing that goal. This 1s accomplished by rroper exercise, medication, and rest. During times of reoccurrence of the disease process, there are various drug therapies available to combat the inflammation which reduces pain and discomfort, and hopefully reduces further joint damage. Without this being checked, the possibility is left open for further deformities, continued loss of range of motion and function, and, in the end, a further restricted lifestyle. The services available in Tucson to help people with arthritis are many and varied. They range from the services and programs of the Arthritis Foundation to the various physicians, to research projects, and to the various programs of general care, physical therapy and corrective 1-34 Tucson, Arizona September 8-9, 1975 surgery now offered at six of our community hospitals, including our osteopathic services. In addition, there are various social, medical, and economic bureaus and services offering many programs of assistance. What TI propose is a coordinating office to help people with arthritis find their way through this system of services and to assist this system in being as efficient and effective as possible. I would also be encouraged to see money frrograms available for continued basic and clinical research and two other areas of patient care. The first is help for those who cannot afford the high cost of joint replacement. My hip, two years ago, was $3,700. That was for 15 days' hospitalization. My knee, in April, for 18 days of hospitalization was $5,000, and is going to cost an approximate additional thousand dollars of physical therapy for me to regain the use in it; a total of $6,000. For those people that physicians elect to receive these joints, the relief cannot be measured. Restricted lives can once more become useful and viable. The second thing that I'd like to talk about is home modifications to help people maintain their activities of daily living. This may require modifications to the kitchen, bathroom, outside ramps, walkways, or patios. I would want these not only for Tucson, but also the surrounding areas and regions served by Tucson. There would have to be outreach services to the people where they are to help them maintain their activities of daily living in their communities and to help them to live. In closing, the disease I have is one I have had to learn to live with; the disability will remain with me for the rest of my life. Those things that have been done to help me maintain myself as an independent member of society and my ccmmunity have been for the good. And those things that can be done for others to help them maintain themselves as independent, contributing members of society and their communities will also be for the gocd. POLLEY: Thank you very much, Mr. Brest. Would you like to expand just a moment with regard to your concept of the coordinator which you spoke about? BREST: Well, this is something that I had thought about, and I didn't quite know how to approach it. But I believe that Dr. Buck, from Pima Health Systems, addressed this point very nicely when he talked of the several services in Tucson and the fact of the data base that he has to evaluate this. And just some type of a body for all the different services. We had talked about sheltered workshops, talked about clinics, and some of the things that I mentioned in general in my speech; that if a patient may need one or more of a variety of these services, that there is some support for him as he goes through this. POLLEY: Sort of like a counseling service? BREST: It could be that way. POLLEY: Okay, you don't have anything like that now? 1-35 Tucson, Arizona September 8-9, 1975 BREST: Well, it's not one that I have used myself. I've kind of fended for myself through the system. There are social workers and other community resource people who, if an individual is in an agency that's fortunate enough to have this service as part of the agency, I'm sure that they would be made aware of different services that they could use. POLLEY: Very good. Other questions from the other members of the commission? One last last question. With regard to the orthopedic surgery, which, I agree, has been amazing. BREST: Yes. POLLEY: You spoke of further help in that area, but you were rather nonspecific as to what you really meant. BREST: For people who cannot afford this, that don't have health insurance, that don't qualify for assistance of one type or another for the various programs that are in existence, that if their doctors deem that this is a procedure that they would benefit from, that there be a mechanism there cf dollars tc pay for it so that they could, indeed, have a hip or a knee, or whatever they need to have replaced be replaced. POLLEY: It may be a little bit of a deviation, but I'd be interested to know, with a show of hands here, how many people in the room do not have any health insurance? POLLEY: Thank you very much. BREST: A goodly numker. POLLEY: Thank you very much, Mr. Brest. ENGLEMAN: I guess we will at this time call for JoAnne Davis. And may I also ask Mrs. Kennedy, Corinne Fair, and Judy Black Feather to come to the table. JoAnne Davis. TESTIMONY CF JOANNE DAVIS ACTIVE LAY PERSON/ PATIENT DAVIS: My name is JoAnne Davis. I'm 25 years old. I can't tell you enough of my interest in the continuing funding for the research of arthritis. They did a bunionectomy, they corrected a hammertoe deformity, which is where the toes are curling, and they straightened out a foot which was starting to curl to the left. This was all done about six weeks ago, and I get the cast off today. I couldn't be happier. I'm an administrative secretary for the State; I take shorthand; I use all manual dexterity skills. My typing is about 90 words per minute, 1-36 Tucson, Arizona September 8-9, 1975 which is all back now that I've had the surgery. My hand, I've already rehabilitated, and it's really a success. The pain is gone. Also, the wrist surgery was a big success. I'd say about 80 percent successful. I lost my dcwnward movement, but I have all the important movement, the strength kack, and no pain, and a normal looking wrist by the way. It was very distorted, red, and very painful. At the back of my mind I had to ke realistic. I realize that if my arthritis continues to affect different joints and cripple, I won't be able to continue being a secretary, kecause eventually it would pretty much cripple my hands, even with surgery. I would have to go back to school, pick another vocation and hope that whatever I picked I would be able to do successfully and support myself; since I am not married and I do live alone. I'm sure I can handle this, kut I'd really like it otherways if we can get the money for the research for the arthritis. I think I have my emotions well under control. I think that the meetings and the counseling that were mentioned are extremely important to an arthritic. You try, when you have arthritis, to kasically not concentrate on your body -- how it feels this way or that way every certain day of your 1life, and concentrate on the rest of the activities that you're involved in; your work, your private life. But arthritis is something that constantly reminds you your body is actually deteriorating or you're having new physical problems daily. If your hand is great one day, your knee is bad the next day, but that's the way it goes. There are many frustrations in arthritis, such as I'm just recovering from surgery, and I realize that I'm going to have a good hand and a good foot, but I've got plenty of other joints that are currently active. The doctor is already watching my left hand, the same joint that he did the surgery On. He suggests, vou know, to keep an eye on that because he wants to catch that, toc. Well, that's really great. But when he gets ready, I guess I'll 1let him do it. I'm very lucky to be covered by insurance. An unrelated fact about people with arthritis, especially women, is relating to children. Now I haven't ever had any children. I'm not married, so, of course, I'm not thinking of having any. But when you think about children and the strength that is required to take care of a baby and to hold a baby -- strong wrists and hands -- and lifting and care that any good mother would want to give to a child, it's very upsetting. I just don't think that I would ever like to have a child. I can accept that. But I don't think that any woman who's considering having one that has arthritis and cannot see a cure in sight, really, if she stopped to realize the limitations that she'd have physically, it's quite something to think about. I was quickly and properly diagnosed with my arthritis. I'm extremely grateful for the care I receive at the arthritis clinic. I do have a relatively good salary and a good job with the State, but it does not allow for extra money for medical care. It takes care of my basic 1-37 Tucson, Arizona September 8-9, 1975 expenses, my rent, my basic expenses, and a few luxuries, but these are just basic living costs. I want to thank you very much for letting me talk today. ENGLEMAN: Thank you, Ms. Davis. We have a member on our Commission who, I'm sure, shares some of your thoughts and anxieties. I'm going to ask Miss Rosalind Brisson if she won't respond to Ms. Davis. BRISSON: I would like for you to receive my deep and abiding sympathy. What I notice mostly in this is when one is afflicted with this disease, or any disease for that matter, a decision has to be made. And you, obviously, have made it; the young man, Mr. Brest, has made it; the patients make it within themselves. Somehow, when tragedy hits you, as it does most of us in one area or ancther of living, you're going to be either a better person for it or a person who is less a person. And you are a better person for it, as Mr. Brest is, and all the patients. This is what I know and feel about you. What I'm interested in is the patient, keing one myself. All these great gentlemen and women, these dcctors and technicians and researchers, that is a great kurden they're carrying, and they're all dedicated. I feel certain the Commission is going to come up with something that is way overdue for this disease. And it's because of people, people such as yourselves are going to make it possikle, and only you, in spite of all the work that these wonderful and great people are going to do. Thank you. It's wonderful being with you here today. ENGLEMAN: I don't know that I can ask any (inaudible). [ Mrs. Cele Kennedy ] TESTIMONY OF MRS. JOSEPH M. KENNEDY PRESICENT, BOARD OF DIRECTORS CENTRAL ARIZCNA CHAPTER THE ARTHRITIS FOUNDATION KENNEDY: We wish to point out in simple, succinct language the great needs of the persons suffering from some form of rheumatic disease who reside within the confines of our chartered area. There is surely no need to reiterate here the national statistics surrounding Arthritis. EXHIBIT A - The fact sheet is attached that shows the economic impact that these diseases inflict upon Americans: $9 billion, $3.5 billion in lost wages, $772 million in lost taxes, and staggering medical costs of $2.5 billion. Much of that loss in dollars and patient care has been lost through quackery; over $403 million. Need I tell you more about that? The facts in dollars and cents are before you. The human beings are not. 1-38 Tucson, Arizona September 8-9, 1975 As you may or may not appreciate our warm climate here, there are countless thousands who do. We have in Arizona an astounding number of persons who have migrated here seeking some relief from their illness. True, they may find a warmer, drier, easier-to-live-in-climate, but as you and I know all to well -- NO CURE! The Central Arizona Chapter is chartered to serve the eight northern counties of Arizona; namely, Yuma, Maricopa, Gila, Yavapai, Mohave, Coconino, Navajo, and Apache. The total population for these counties is 1,512,100, In persons suffering from some form of rheumatic disease, the number in this area is 189,014. This represents 9.3 percent of the entire arthritic population of the United States. APPALLING! Exhibit B - shows the number of arthritics in Northern Arizona bLy county. The geographic area of our Central Arizona Chapter Charter is 84,926 square miles. There are some 378,025 families affected out there needing immediate diagnostic care and treatment, but the closest source for such counsel is in Phoenix, some 400 miles away. The implementation of the Arthritis Act would relieve this situation. The needs of the 189, 104 arthritics in Northern Arizona are magnified because of the lack of nearby diagnostic and treatment facilities. Washington, D. C. is far away from Arizcna. Surely the needs of the many arthritics in Northern Arizona are great. You are charged with the responsibility of seeing that these funds, if finally loosed, are used to the best advantage. I appeal to you as an American, an Arizonan, and an arthritic, to see that these funds are fairly spent for the greatest numbers in the greatest need. Thank you. ENGLEMAN:- Thank you very much, Mrs. Kennedy. Are there questions or comments from members of the Commission? Mrs. Kennedy, the prevalence figures which you've given are really striking, to say the least; higher than 10 percent in these northern counties. To what extent is this prevalence figure effected by movement of individuals from other states into Arizona, and to what extent does this represent a true prevalence in this area? KENNEDY: Well, I think the figure is very true. I think certainly we recognize here, in working with the many persons who request our services, a good many of them come here because they expect a cure. At least they hope to feel better in the sunshine. We feel that one family or one person in every eight is a very conservative estimate. There have been attempts at studies, but I don't have any complete results on studies done in that field. ENGLEMAN: Mrs. Anthrorp. ANTHROP: Mrs. Kennedy, of all these numbers that you give in northern Arizona, approximately how many arthritic Indians does your chapter take care of in northern Arizona? 1-39 Tucson, Arizona September 8-9, 1975 KENNEDY: Well, we are chartered by the Arthritis Foundation to serve the entire northern area. We have only our office in Phoenix, Arizona. We are attempting to set up county units in each county. And my plea here is very simple. There are 86,000 square miles and thousands of persons with no nearby facility for diagnosis or treatment for 500 miles. ANTHROP: There is none in Flagstaff? KENNEDY: Very limited. The young man who is practicing in Flagstaff had his only training in rheumatology through our diagnostic and consultation clinic in Phoenix. That's his only formal training in rheumatology. ANTHROP: You still haven't answered my question. KENNEDY: The number of Indians? ANTHROP: Right. KENNEDY: I don't know, I'm sorry. ENGLEMAN: I may have missed it, kut how would you -- what are your suggestions to the Commission as to how we can improve the lot of the patient who lives in the rural area? How do we reach this patient, and how can we make available to him and her the kind of medical care which he deserves? KENNEDY: Well, I don't know if any such center located, for example, in Flagstaff, which is at the bottom part of Coconino County, would be perhaps useful. However, certainly an outreach program into each county is something we're trying to do with a partial grant from RMP this year. It has to be on a larger scale for any of these people to get any good treatment. ENGLEMAN: You're suggesting this might be done on a countywide basis? KENNEDY: I would think that would be a feasible beginning. ENGLEMAN: Any cther questions? ANTHROP: Mrs. Kennedy, have there been any overtures made to IHS, Indian Health Service, hospitals with the possibility of setting up outreach centers for arthritics? KENNEDY: We have worked closely with them. In fact, we're going to be doing a program just very shortly there. In our area we have until this year received funds from no other source except general contributions. And I might add that this kind of crimps your style a bit. FNGLEMAN: Thank you very much, Mrs. Kennedy. We will now call on Corrine Fair. 1-40 Tucson, Arizona September 8-9, 1975 TESTIMONY OF CORINNE FAIR PUBLIC RELATIONS CHAIRMAN ARTHRITIS SERVICES GROUP SOUTHERN COCHISE COUNTY, ARIZONA FAIR: Good morning. My name is Corinne Fair. I am the Public Relations Chairman for the Arthritis Services Group in Southern Cochise County. My address is 532 Nelson Drive, Sierra Vista, Arizona. I have had arthritis nearly all of my life, which came from a birth defect. I know what it is to be a little girl who's not allowed to do all of the things that other little girls can do. And vet, I have not had perhaps the visible signs that some children with rheumatoid arthritis have. People understand, "Well, her foot's crooked or something, and she can't do it." I didn't have that. I looked perfectly ncrmal and I still couldn't do it. It was kind of tough to explain sometimes. Today I'm representing a self-help group in Sierra Vista that was organized originally through the auspices of the Arthritis Services Program here in Tucson. They contacted some of the people that they knew had arthritis in our city, and we sort of got together and are trying, to do some things for ourselves with the help and encouragement from people up here. In our area we have great need for patient and community education, for patient and family ccunseling. Professional education and information probably is even more important there, and inexpensive maintenance-type of medical care clinics. It should be possible for the patient or the family to initiate visits to this clinic. Often the local doctor just doesn't understand the questions or problems that come up when one is faced with long-term problems. The patient needs to ask questions and have the current status of their disease and its treatment evaluated. One hears on a different level each time a subject is discussed. We also need physical therapy range of motion classes and evaluations, help in reducing drug bills, aid in reducing architectural barriers, transportation, occupational therapy and job counseling, self help devices, home modification, and possikly homemaker and child care services. In fact, we need help in nearly every area, even though we have formed a self help group to begin to try and satisfy some of these needs. our group also acts as a supportive mechanism to the loneliness faced by arthritis sufferers and their families. As Mr. Brest mentioned, one great help would be a professional who could be based here to dc all types of counseling and referral. A person in the community could ke trained and keep regular office hours and help people find answers to their problems. 1-41 Tucson, Arizona September 8-9, 1975 Upgrading and increasing resources in home communities are extreme necessities, as quite a few of us cannot handle frequent trips away from home because of our physical conditions and because gasoline costs are prohibitive. Also, the patient or a member of the family might have to miss a whole day of work to seek treatment which, if provided in the home community, would require cnly a couple of hours. We thank you very much for letting us ke here today. ENGLEMAN: Thank vou, Ms. Fair. Any comments from members of the Commission? ANTHROP: Ms. Fair? FAIR: Yes. ANTHROP: I do believe that in Title XX, which this State has received, that your county has received an allocation that includes house or home care, people who will come in and help -- homemakers, as they're called. It might do you good to look into that program, Title XX. FAIR: Thank you very much. I certainly will, because I know of one case right now that needs help like that. Thank you. ENGLEMAN: We'll now call on Judy Black Feather. TESTIMONY OF’ JUDITH A. BLACK FEATHER, R.N. DIRECTOR, COMMUNITY HEALTH NURSING INDIAN HOSPITAL SACATON, ARIZONA REPRESENTING GILA RIVER INCIAN COMMUNITY BLACK FEATHER: My name is Judith A. Black Feather. I'm an RN, with my MPH in nursing, and I live at 500 East Dunbar Drive in Tempe, Arizona. Presently, I am representing the Gila River Indian community as the Director of Community Health Nursing at the Indian Hospital in Sacaton, Arizona. Together with Dr. John Carter, the General Medical Officer at the Hospital, and Dr. Steve Arnoff, Clinical Director of the NIAMD research unit at Sacaton, I'm presenting this presentation. ENGLEMAN: Do you have anything to do with Dr. Peter Bennett? BLACK FEATHER: Indirectly. ENGLEMAN: Dr. Arnoff is cn Dr. Bennett's staff. Is that correct? BLACK FEATHER: Yes. ENGLEMAN: Yes, fine. Thank you. 1-42 Tucson, Arizona September 8-9, 1975 BLACK FEATHER: The Gila River Indian Reservation situated in the hot, dry, semi-arid desert of central Arizona is occupied by approximately 10,000 inhakitants, most of whom are Pima Indians. In spite of the desert climate, arthritis is not an uncommon ailment among these people. In fact, prevalence studies by the National Institutes of Health reveal that approximately 7 percent of Pima females and 5 percent of Pima males are afflicted with rheumatoid arthritis, while another 4 percent of the males have x-ray evidence of ankylosing-spondylitis. Even more striking is an age and sex adjusted rate for osteoarthritis of 65 percent in the Gila River Indian Community. Comparative prevalence studies in various population groups of erosive joint changes attributable to rheumatoid arthritis show that Pima Indians rank second only to the Jamaican Negro in frequency of the disease. Furthermore, a comparative national survey of crippling arthritis indicates that the Pima Indians have a 3 percent higher rate of this affliction than in other population groups in this country. In spite of the frequency of arthritis in these people, the scarcity of Public Health funds has relegated this chronic disease to a very low priority. During the past year, however, with the aid of the Arthritis Service Program of the Southwestern Chapter of the Arthritis Foundation, an organized program for the treatment and education of persons afflicted with arthritis has been established on the Reservation. A weekly clinic is now held for these patients and the Arthritis Foundation sends at least one physical therapist twice a month to provide treatment and to counsel patients on exercise and home care. The Foundation has also provided educational materials, intermittent consultation clinics with a rheumatologist and orthopedist, and at times has even contributed modifications in patients' homes to illustrate and provide examples for others. We are currently fcllowing more than 100 arthritis patients at the Sacaton Indian Hospital, including more than 40 with active rheumatoid arthritis. At any one time, at least five patients are receiving weekly gold injections. Several patients have been sent for reconstructive surgery, and many patients are receiving physical therapy. Not only are these patients receiving ketter care, but they also have become much more informed about their disease. As one might expect, with the success of this program, more and more patients are coming to the clinic for help. Unfortunately, the Indian Health Service funding has not expanded adequately to fund this current program, much less expand it. In fact, there is inadequate funds for self-help devices, proper shoes, even appropriate drugs for patients. Many of the patients are in need of further evaluation by specialists, and cthers are in need of corrective surgery. We feel that through this program we have begun to make great strides in caring for cur patients with arthritis. But, the demands for these services are rapidly growing while the funds have not. This is an 1-43 Tucson, Arizona September 8-9, 1975 unacceptable situation for this particular group of disadvantaged people who have nowhere else to turn for medical care. Thank you very much. ENGLEMAN: Thank vou. We are very much aware of the very serious impairment of funding of the Indian centers. And I happen to be particularly interested in Dr. Peter Bennett's work, and that's why I was asking the question. BLACK FEATHER: I read everything I could read to make this thing together. I read most of his work. One he handed to me in -- I believe it was French. But I have a member on my staff that can read French, so I lucked out. ENGLEMAN: Any comment? I know that some of this Indian work is financed by your institute; isn't it? WHEDON: Yes. For those who may not know, Ms. Black Feather is descriking operations on the Sacaton Reservations which, of course, are primarily supported by the Indian Health Service Hospital System. But the resident there and also in Phoenix is a very active epidemiologic research unit which is sponsored by our institute in Bethesda, the National Institute of Arthritis, Metabolism and Cigestive Diseases. In addition to having this very active study group both at Sacaton and at Phoenix, which carries out periodic examinations not only in arthritis but particularly in various digestive diseases (particularly gallbladder disease and in diabetes) there also is an active clinical research unit on the top floor of the Phoenix Indian Health Service Hospital in Phoenix, which is a special research study unit. BLACK FEATHER: May I say something, though? Even though we have all of this glorious research stuff I think that the one thing that has really been beneficial to the Gila River people has been the outreach program from the Southwestern Arthritis Foundation, or whatever they call it here in Tucson, because they have -- as one of the other physicians, I believe it was a pediatrician, allud=d to -- we did have a very interested general medical officer at our facility. And for anybody who doesn't know, our general medical officers turn over every two years. And so it just depends on the interest of the medical officers -- what disease is focused upon during his stay. It was during one of those doctor's stay that this program was developed. And what I'm really here for is to say that I hope we don't forget it now. Now we've got all these patients coming in. x don't want to see them left in a lurch. I want them to get continued service, continued rehabilitation, continued education -- because this has really been a kind of a boon to a lot of our arthritic patients on the reservation. And that's the reason I'm here today; I'm speaking in their behalf, because I've seen a tremendous change in attitudes and acceptance in the community as a result of this outreach program. 1-44 Tucson, Arizona September 8-9, 1975 ENGLEMAN: This was a function of the Regional Medical Program. Is that correct? BLACK FEATHER: Mr. Renson's group here in Tucson. ENGLEMAN: Right. Thank you very much. It gives me a great deal of pleasure to introduce one whom I'm sure needs no introduction to this audience. Warren Benson is the Executive Director of the Tucson Chapter of the Arthritis Foundation. And in case you don't already know it, let me tell you that Warren Benson is one of the most highly respected executives of the Arthritis Foundation in the United States. And I think that you are very fortunate to have a man like Mr. Benson as your leader. We are happy to call on Warren at this time. Will you proceed. TESTIMONY OF WARREN BENSCN EXECUTIVE DIRECTOR TUCSON CHAPTER, THE ARTHRITIS FOUNDATION BENSON: Thanks. I'm Warren Benson, Executive Director of the Southwest Chapter of the Arthritis Foundation; leader, I am not. But we have a community here of very interested physicians and lay people, and they're the ones who really do it. I sit there and get a lot of the credit. Without these people Tucson's program would not be what it is. I'm going to be talking today on something I have talked on before -- that's quackery -- and I'll read a statement: Because arthritis is painful...because it is crippling...because there is no cure...and because many sincere physicians don't know how to treat it; patients kecome desperate for relief and will turn to the person who says, "I can help you." These "misery merchants" do a tremendous business...preying on the suffering of patients with arthritis. The estimate of $400 million a year is probably conservative...since many patients don't want to admit they've been taken. Quackery takes many forms...from the innocent, though misguided, "friend" who recommends "cactus juice", to the sophisticated fraud who bilks his victims for as much as he can get. Charlatans sell every manner of cream, device, treatments, diets...Here are a few: Sea water...moon dust...foot massager...electrical devices...this is the oxydonor...the varillium tube, $300 for this one...this vivicosmic disc was supposedly effective in treating a variety of ailments, just $5.0C, it is a piece of cement. You could rub arthritis away with the kongo kit, or you could inhale it away with to-ne-ka. 1-45 Tucson, Arizona September 8-9, 1975 "Doorbell doctors" can look as innocent as your next door neighbor, men or women, but perhaps the worst of these pariahs are the professionals who know better. I'm thinking particularly of Dr. Luis Carillo in Mexicali, who kills patients with high dcsages of steroids. This "healex" sees 100 patients a day...but, they love him! He spends four or five minutes with each patient: takes their pulse, sometimes their blood pressure, writes a prescription which must be filled at the Paris Pharmacy, some ten blocks away (there's always a cab outside the door). I'm told he owns the pharmacy and the cab company. You have all seen the books that offer "an effective treatment." The old "honey and vinegar" book by Jarvis, the "cod liver o0il and orange juice" book by Alexander. This one sold a million copies and was on the best seller list for over a year. Every year at least one new one. The latest ripple is from an English physician Dr. Wyburn-Mason. He has the cause and the cure. I find it interesting that this physician, unknown to rheumatologists, had his license to practice medicine suspended just four months before he gave his paper. $400 million dollars a year on quackery? What about the dashed hopes...the delay in seeking effective treatment? How do you put a value on that? We need help in fighting quackery. Thank you. ENGLEMAN: Thank you very much, Warren. I was waiting for you to tell us -- what the Commission might do to try to somehow... BENSON: All right. The Food and Drug Administration, part of their charge is to help us fight quackery. In the State of Arizona they've got two inspectors, and they've got a tremendous number of other things that they've got to do. We don't have enough help. True, in Arizona now we have the Consumer Fraud Division, a fairly new outfit which is helping. But we need Federal recognition of these problems. I'd love to see the AMA, cr some other national organization create a bank cn problems like Carillo. You heard yesterday -- someone I heard say that Dr. Jchn Ward in Salt Lake had three patients who he knew had bad effects. We've had them here; we've had them all over the country. A central data bank -- and then giving this informaticn to, or collecting it from communities medical societies all over the country. Then we've got people in this country who have strong connections with physicians down there. We have a past president sitting in this room right now of the American-Mexican Medical Society. Certainly some help could be given from outfits like this to get some pressure on Carillo to change his ways. So that National things -- I think National agencies can be of tremendous help to us in fighting this. Certainly education, but on a national basis. The AMA has its own special group that works on this. 1-46 Tucson, Arizona September 8-9, 1975 Help from all over this ccuntry directed there and then directed into a place in Mexico. We used tc have one in Canada, you know. ENGLEMAN: Any other comment? HAVERS: I was going to say, Warren, I don't think Daryl's book is quite in the same league as the others. The only thing that he recommended, which I wouldn't agree with, is I think he's against alcohol. I think he's changed his mind since he wrote the book. BENSON: Ronnie, I grabbed up a whole bunch of books. This one was on the other part of the shelf. I shouldn't probably have had this. ENGLEMAN: Any other comment? MELICH: Dr. Engleman? ENGLEMAN: Yes. MELICH: I'm sure that there are a lot in this audience that would like to know about the effect of diet on arthritis. I think some of the biggest quacks are concerned with giving you certain kinds of health foods and promoting alfalfa seed, and all the rest of it. I think that there is a great danger among a lot of people that will accept the fact that diet has a lot to do with a cure for arthritis. ENGLEMAN: Dr. Polley is quite an expert on diet, and we will ask him to discuss this briefly. POLLEY: Well, I think Mrs. Melich has spoken a medical truth on this as well as a public and patient truth. And I think we all recognize that all of wus can eat things that other people can't eat and digest things that other people can't digest, and so on. I think we have to respect the individual need for a certain food or a certain elimination of a certain food. But as far as a different, special type of diet, the very fact that Warren has all these books and a lot cf cthers he didn't bring along, all advocating a different type of diet, shculd certainly indicate that diet alone is certainly not a very important factor. ANTHROP: Mr. Benson, this being a ccpper State, could you give me an estimate on the number cf ccprer kracelets that are sold? BENSON: I would imagine in the last five or six years it runs into the tens of millions. Not only copper kracelets, but if a copper bracelet isn't fancy enough for you, you could get something like this (indicating). This is the electro-galvanic tracelet. And according to the box: "For the relief of aches and rains. External application only." I think copper bracelets are now falling in a little bit of disrepute, but still, many, many millions of people are wearing them in the hopes that they'll have some effect. ENGLEMAN: We have at least one more question for Warren. 1-47 Tucson, Arizona September 8-9, 1975 HAVERS: I was going to say that this really highlights the real need for education. This is but one part, really, of an education program. But, unfortunately, I do feel that until we do have the cure, we're going to have quacks. But we do need education, which this Commission, really, is very much ccncerned with. Thank you. ENGLEMAN: TI might say not only professional education and public education, but alsc patient education. I will now call on Mr. Sabo. TESTIMONY CF LOUIS A. SABO ACTIVE LAY PERSCN/ PATIENT SABO: I might add one thing to what the doctor just said. I did go to see Dr. Carillo in Mexicali. He said, "one hundred patients a day." I was patient number 283 that day, and he still had a couple of hours to go. Fortunately, I did have the good sense to have the medicine analyzed before I took it. So that it will be a matter of record, I am 52 years of age, married, father of one child (a daughter), a veteran of four years service with the Marine Corps in World War II. I have been afflicted with arthritis most of my adult life. My particular ailment is ankylosing-spondylitis, often called arthritis of the spine, and is characterized by the bowed back and fused spine. Arthritis, in its various forms, is probably the most prevalent crippling disease in the world, accounting for the loss of productive citizens from our society, more people than cancer, heart disease, kidney failure and blindness combined. But research programs for a cure and/or treatment of arthritis are far out of proportion, far too 1low, when compared to similar programs now in effect for other crippling afflictions. Rehabilitation programs to return those in the early stages of arthritis to a useful functional life are, to my knowledge, well below those of other diseases. Thousands of arthritics in this country have been put out to pasture for lack of good rehabilitaticn programs; good minds and good educaticn going to waste and not being utilized, especially among the young adults. It is too late for me and thousands like me who are past that point where rehabilitation could help. It's even too late for a cure for those in my condition, for even if a cure for arthritis was found tomorrow, it could not undo the damage caused by the disease over many years. But I dc not foresee a cure tomorrow or even in the near future unless it comes out of a Government-financed research program, independent of the private medical profession in this country, for it is my belief that physicians in private practice do not really want a cure for arthritis. This is a harsh condemnation I know, but I believe that, either consciously or subconsciously, those doctors treating arthritics want those millions upon millions of dollars to continue to flow into 1-48 Tucson, Arizona September 8-9, 1975 their pockets each year even though those dollars cause financial disaster in the homes where arthritis strikes. The amount of money spent trying to find relief for a family member suffering from the agony of arthritis can be staggering. If the wage earner of a family is disabled by arthritis, it can mean financial catastrophe as kad as cancer or a heart attack. When a child or a housewife is stricken, it can be even worse, since they're not even eligible for Social Security disability benefits. In many cases, the financial burden is increased by doctors prescribing expensive drugs needlessly when cheaper medicine could be purchased by its generic name; medicine that would do just as well. Too many physicians take the attitude of: "Get this prescription filled and we'll try it. Have these tests made. See me again in a week. That will be twenty dollars." So now the question is: What can the National Arthritis Commission do? First, set up a research program to find a cure or a vaccine for arthritis, a program completely independent of the private medical profession. Second, Enlarge the rehabilitation programs for those that can be helped. These programs should be in proportion to the prevalency of the disease. Third, Institute some sort of financial aid such as Medicare or Medicaid for arthritics. Remove the two-year waiting period that those totally disakled have to undergo before they're covered by Medicare when they are eligible to receive Social Security disability benefits. Give those totally disabled the same double exemptions on their income tax that are given to the blind and the aged. I do not mean to sound bitter, but I have undergone and seen arthritis treatments in these modern times that sound more like the tortures of the Middle Ages, for arthritics will go to almost any length to get relief from their pain. There is an 0ld saying that arthritis does not kill you, it only makes you wish you were dead. Don't believe it. I have never seen an arthritic who did not want to live, and it is possible for arthritis, coupled with its side effects, as well as the side effects of some of the medicine given, to kill you as dead as a heart attack or cancer. When it does kill, it is a long slow process like cutting your throat a millimeter a day. Arthritis is a vicious disease. It calls for drastic action, action that is long overdue. ENGLEMAN: Thank you, Mr. Sako. I think that your suggestion that there is a need for professional education and that we need more doctors who are interested in and perhaps a little more knowledgeable of arthritis is accurate. You can be assured that the Commission is very much aware of this very serious deficiency. As a practicing physician, however, I would challenge your ccmment that there is somehow a collusion among private physicians to withhold the optimal treatment from the patient. That is my own personal point of view. I'm not expressing the opinion of the Commission. BRISSON: Mr. Chairman, I would like to respond if I may. It is with the deepest and acute sympathy that I have toward your attitude. We have to realize that there are inefficient doctors, there are corrupt doctors, but in my opinion, they're not numerous. And I think I have actually lived a little longer than you have -- I must make that admission, and I have dealt with them on numerous occasions. It may not have been totally 1-49 Tucson, Arizona September 8-9, 1975 altruistic, but it was in the long run the people of this country who stood up and demanded something be done about poliomyelitis. The fact that the President had this disease was also helpful, and it had the appeal of young children. Therefore, what I said earlier I repeat, and I believe this from the very depths of me. It is only the arthritic himself and herself that is going to get this job finally done. These people are the instruments. Yes, they are. And we need them; it cannot be done without them. I am going to take the chance on saying that you possibly wouldn't be here, and I know I wouldn't be here, sitting here and well, as well as I am, without medical help. It's been the good man that has pulled me through, many -- not one, but many of them, from a very, very severe case of rheumatoid arthritis; and I'm eternally grateful to them. I believe in these doctors, and I know they're going to get what we need and what we want. But you have to have the help of the arthritic himself and herself. And the more we talk about it, the more we discuss it with each other, the more we write about it and consult others about it, the better results we're going to get. Thank you. SABO: Mr. Chairman, I did not mean to infer that all doctors were, shall I say, leeches. I have seen many and I have been treated by many dedicated doctors. But there are too many doctors who are not dedicated; that there are too many physicians, I do believe, that are primarily interested in their own well-being. And I do kelieve that the American Medical Association and the physicians in general could do well tc police their own ranks more in this field. ENGLEMAN: Thank you very much, Mr. Sabo. We just happen to have a few physicians here who we will call upon at this time. I'm going to ask Doctors Hill, Parsons, Volz, Boyer and Spriggs to come to the table. It gives me personally a great deal of pleasure to call at this time on a man whcm I've known for many years and learned to love and respect. I can't think of a better time to introduce him than now after having heard some of the comments that were said previously, because if there's any guy in the United States who has the health and the welfare of his patient at heart, it is Dr. Donald Hill. He may not tell you so, but he is a former president of the American Rheumatism Association; and I am so happy to have him here at this time. Don Hill. TESTIMCNY CF DONALD HILL, M.D. MEMBER, HOLBROOK-HILL MELCICAL GROUP, LTD. FORMER PRESICENT, AMERICAN RHEUMATISM ASSOCIATION MEMBER, BOARLC OF LCIRECTORS THE ARTHRITIS FCUNDATION HILL: Thank you, Dr. Engleman. 1-50 Tucson, Arizona September 8-9, 1975 As a longtime rheumatologist in Tucson, I appreciate this opportunity to appear before you. A group of four rheumatologists and an orthopaedic surgeon have prepared a written presentation which we anticipate will take no more than 40 minutes. We will then be available for questions. We represent a cross-section of health providers...solo practitioners, rheumatology group practice, as well as the University of Arizona Medical School staff. I will lead off with a short summary of the origin of the Arthritis Foundation in Tucson, with the somewhat unique philosophy which has led to the development of close rapport between the medical profession, allied health groups and other quasi-health organizations and delivery of highly sophisticated treatment services to patients in various economic brackets. As a health center for many years, Tucson has developed numerous facilities. Starting with one County Hospital Arthritis Clinic in 1949, our clinics now number seven. From 5 rheumatologists in 1948, we now number 15 with more due to arrive shortly. This is for a city roughly of 350,000 and a surrounding area of another 100,000. In addition to the above, we also have personnel involved in research, both basic and clinical. It might in crder to mention that pioneering work in gold therapy and cyclophosphamide has been done here, A current transfer factor project hclds promise for the future. The total wrist replacement procedure, now in use at various locations around the country, is the work of a University-based orthopaedic surgeon. A Vocational Rehabilitation Grant in the Sixties showed how this varied program of accelerated, intense service could return patients to a productive life. Last year's Regional Medical Program illustrates once again that the private and public sectors of medicine in southern Arizona could combine -to provide needed services. The large arthritis population of the area -- one out of every eight persons -- many of whom came here from cther sections of the country, are frequently in advanced stages of the disease. People are slow to leave home, work, and family to seek climatic relief for their symrtoms. Arizona's small population and few manufacturing plants make for a low tax base. Therefore, we nead Federal funding to augment the services funded by the local and State agencies and organizations. Arizona will start a Medicaid program cn January 1, 1976, but current prognostications reveal a very low family income requirement which will not effectively supply services to the rresently unserved. With the increased cost of providing services, many agencies, public and private, are examining programs for areas where cuts can be made to meet available funding. Thank you very much. 1-51 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Before we ask for questions from the members of the Commission, I think we'll call on the other physicians. Dr. James Parsons. TESTIMONY OF JAMES PARSONS, M.D. PRESICENT, PIMA COUNTY MEDICAL SOCIETY MEMBER, HOLBROOK-HILL MEDICAL GROUP FORMER PRESIDENT, THE ARIZONA MEDICAL SOCIETY PARSONS: The impact of arthritis is not only financial, but in the length of time the patient suffers from the disease. This can be illustrated by a patient currently under care in Tucson, who developed juvenile rheumatoid arthritis in 1938 and has been under care for a total of 38 years. In addition to his medical management, his surgical procedures have included bilateral hip replacement, corrective hand surgery, bilateral osteotomies of the knees, bilateral forefoot resection, appendectomy and tonsillectomy. He has spent approximately 750 days in hospitals and various nursing homes, as well as his convalescing at home. His total medical ccsts during this 38 years has exceeded $152,000. Fortunately, this family was able to participate in various group insurance plans, but often the financial means to obtain medical care necessary to remain employable, or at least to have a decent quality of life, is beyond many. The present Medicare program is totally inadequate, as it allows only one visit per month, to give adequate medical supervision and care to any patient with arthritis. It is suggested that the Commission investigate and recommend various methods of pooled risk insurance, to be made available at reasonable cost to the patient with arthritis. As a clinician, I can see many current needs for the care of patients with arthritis. These include out-patient care, which is the primary care for the patient with arthritis, extended care units, and hospital care. A) OUTPATIENT CARE The primary care of the patient with arthritis is in an out- patient setting. It is here that the greatest changes must take place. There must be a total change in community attitude, large or small. We have found families hiding patients, because they are ashamed of having a person in the family with this disease, or, because they are unaware of the availability of services currently being offered. Awareness that arthritis is a treatable disease, rather than a disease to be borne as a burden of life, or to be ashamed of, needs to ke propagated. It is suggested that the Commission make specific recommendations as to case findings, use of paramedical personnel, community education, education of physicians, and the staffing of treatment areas. It is often true that treatment facilities are available, but the time required for travel to and from these facilities, on a frequent and regular kasis, is too great for the family. It is 1-52 Tucson, Arizona September 8-9, 1975 recommended therefore, that the Commission study the availability and feasibility of home health services, which teaches the patient and his family how to live with and cope with the disease, and small satellite treatment areas throughout the city, or within small communities. B) EXTENDED CARE FACILITIES The extended care unit is the intermediary between the hospital and the home, for continuing care of the patient with arthritis. The lack of facilities includes physical therapy, pool therapy, specialized equipment, and aid to daily living (ADL) teaching to the patient with arthritis. There are very few places which set aside areas for moderate to long-term care, the reason given us by operators of such extended care units is that the cost is too great for the average patient to bear, and the unit cannot stand the loss, since there is no supplementary funding available. I would suggest that the Commission investigate means by which the patient with arthritis may be given extended care in proper facilities, at a lesser cost. C) HOSPITAL CARE You will hear many presentations as to the need for the design of special units within the hospital. Therefore, I would 1like to address myself to the problem of the patient with arthritis who is admitted to the hospital for treatment of diseases other than arthritis, such as pneumonia or cholecystectomy. ° Frequently, the personnel now in such units are totally untrained in the care of the patient with joint deformity, or joint pain. Physical hospital facilities are designed around patients with normal ambulation. I would suggest that the Commission investigate and make recommendations as to training of personnel in general hospitals, the adequate design of the hospital to handle the patient with joint deformity, and advise as to what equipment and facilities should be availakle in a general hospital for the short-term treatment of patients with arthritis. I would 1like to emphasize to the Commission that clinical investigation is a worthwhile effort and should be directed in two areas: A) The first is the planning of facilities and their experimental use in an attempt to obtain better treatment and quality of life within the hospital, extended care unit, and at home. B) The second area of clinical investigation which needs to be continued and encouraged is the development of new drugs, as well as new approaches to the treatment of arthritis. In the past, there has been very little money available for either tyre of investigation, and more is needed to improve the quality of life in patients currently suffering with arthritis. 1-53 Tucson, Arizona September 8-9, 1975 Based on the above observations, I have difficulty envisioning a center for arthritis which is bound within a single building, but one which requires the use of all the integrated facilities of the community, or geographic area. As President of the Pima County Medical Society, I would 1like to welcome the Commission, and to wish them Godspeed in their deliberations and recommendations. ENGLEMAN: Thank you, Dr. Parsons. We will now call on Dr. Robert Volz. TESTIMONY OF ROBERT VOLZ, M.D. ORTHOPEDIC SURGEON UNIVERSITY OF ARIZCNA MEDICAL CENTER VOLZ: By way of introduction, I'm Dr. Robert Volz. I'm an orthopedic surgeon who is currently located at the University of Arizona Medical Center. I'm very much interested in the orthopedic care of the arthritic. Dr. Engleman and distinguished members of the Commission: There are several thoughts which I would like to bring to you today as far as a concerned orthopedic surgeon who is interested in the care of the arthritic patient. I would list these in orders of priority. The first priority that I would see would be financial support to the financially insufficient and/or indigent patient needing medical care for an arthritic condition. I'm certain that it need not be pointed out to the Commission's well informed members that infrequent are the days when the severely handicapped patient with arthritis is informed by his orthopedic surgeon that his condition has progressed to a point where nothing can be done. Quite to the contrary, with the ever increasing sophistication of surgical techniques, more and more patients are being rehabilitated to lead more active lives. But gone are the days when such care could be obtained without a very significant expense. Although representing a small portion of the patient's overall bill, the very significant increase in the cost of orthopedic prosthetic implants alone dramatically illustrates the ever increasing cost of obtaining such care from the patient's point of view. Where the orthopedic implant used to cost in the neighborhood of $50 to $100, many types of very highly sophisticated total joint replacements now cost in the neighbcrhood of $100 to $600, and this is without consideraticn for possible markup from the hospital's point of view. I thus see that there remains a significant patient population that is without adequate third-rarty insurance coverage or who lack the means to assume full responsibility for medical expenses incurred. The second pricrity that I would see would be for the establishment of multiple disciplinary clinics strategically and geographically located to act in a screening fashion for the ambulatory arthritic patient. Because the diseases that we lump together as arthritis cross so many fields of medical interest, I feel that it's essential that a multiple disciplinary approach be instituted and be encouraged. Secondly, I would point out 1-54 Tucson, Arizona September 8-9, 1975 that because so many arthritics are severely handicapped in their capabilities to travel significant distances, that these clinics should be developed on a mokile concept in which this multiple disciplinary team is taken to properly conceived geographical locations to screen the patients which can be brought to that facility. The third priority that I would suggest is the establishment of a lesser number of strategically located, multiple disciplinary inpatient facilities, which are, again, designed for care of the inpatient arthritic. These facilities would possess sophisticated means of treating complicated arthritic patients. They would have adequate numbers of paramedical individuals in the fields, in the allied fields of physical medicine, occupational therapy, social rehabilitation, etc. A fourth priority would be the creation of a mobile team of paramedical personnel who would be available for delivery of home care and observation. This wculd Le particularly so as it pertained to both the preoperative and postoperative status of the patient with arthritis who is being considered for orthopedic care. These arthritis paramedics would be well versed in concepts of social rehabilition, physical medicine, occupational therapy, and home-aid appliances. They would be directly responsible to the multiple disciplinary ghysician team. This, of course, would lead to the fifth priority, which would be for the creation of training rprograms to be established at medical centers which are capable of providing adequate educational experiences in the training of such paramedical personnel. Finally, I would propose the establishment of a data processing system which would provide for the rapid retrieval of pertinent patient information relating to the entire subject of arthritis, its natural history, genetic predisposition, causation, efficacy of treatment, and so on and so forth. Such a central consolidation of data could also serve to prevent costly reduplicaticn of clinic and laboratory investigative activities. I thank you very much for the opportunity to appear before the commission. ENGLEMAN: Thank you, Dr. Volz. We expect to obtain from you and others copies of your written testimony. Dr. John T. Boyer. TESTIMONY OF JCHN T. BOYER, M.D. PROFESSOR OF INTERNAL MEDICINE CHIEF, SECTION OF CLINICAL IMMUNOLOGY UNIVERSITY OF ARIZONA COLLEGE OF MEDICINE BOYER: It's my thesis that improved care for the individual with arthritis is immediately available through improved education. I believe that the major portion of knowledge and experience necessary to give expert care for the vast majority of patients is essentially 1-55 Tucson, Arizona September 8-9, 1975 straightforward, is relatively easy to acquire, and is available to all clinicians who are interested at this time. It was not superior ability with a stethoscope that separated the cardiologist from his colleagues in general care as much as the evolution of electrocardiography, cardiac cathetorization and the precision it requires, and the special screening needs cf cardiac surgery. The renal specialist came into his own with the development of the artificial kidney and chronic renal dialysis with the need for prolonged technical training similar to that of the cardiologist. The emergence of the rheumatologist, on the other hand, has stemmed from a different demand: CARING for the individual with arthritis when others had nothing left to offer. The rheumatologist finds his specialty characterized, not by a highly technical body of knowledge or some unique procedure requiring long training to master, but by empiricism in ambiguous situations, mastery through prolonged experience, planning which incorporates philosophy and art as much as science, and reliance on simple therapies from many modes. One should ask, "How is this different from any branch of the healing profession?" Obviously, it isn't -- or at least it shouldn't be. But rheumatology exists as a specialty, in part at least, because of the needs of patients with arthritis for physicians with these interests and qualities. I'm ignoring for the moment, of course, the role the rheumatologist in managing the less common, exceedingly complex problems that arise and in leading efforts in research. I would arque that the speediest, most economical and self-sustaining way to get Lfketter care in arthritis to the patients of America is by assuring that primary care physicians become aware of the existing core of information, proficient in its use, and proud of their increased abilities. To appreciate the various steps required to accomplish this essentially educational program, it is necessary to review the reasons for current deficiencies: With the shift of medical education from the physician's office to the university and the university hospital following the Flexener report in 1910, the emphasis changed from "the medical art" and humanitarianism to the scientific method and crisis-care in the emergency rcom and medical ward. The teaching physician, by experience and example, became the one most able in medical biology and the acute problems of the inpatient. But what of the patient with arthritis? Never dying but never getting well, he was found almost exclusively in the outpatient «clinic. No science defined his problem and no cure rewarded his physician's efforts. More important, the new medical education was unable to cope with the very real problems of teaching in an outpatient situation. The limited time of the student prevented continuity. The limited time of the patient 1-56 Tucson, Arizona September 8-9, 1975 prevented teaching in depth. With such slim rewards, both student and faculty abandoned the clinic. I finished four years of medical school and three years of house officer training without once seeing a joint examination performed. I know many general rhysicians who are expert at prescribing digitalis and diuretics for a serious heart condition, but who are unaware that aspirin's anti-inflammatory effect in arthritis requires a much higher dose than for pain relieving. I have yet to hear a faculty colleague (outside of orthopedics and rheumatology) respond accurately to the simple question: "How does one determine the difference between pain coming from within a joint, from that of pain coming from outside the joint?" With such examples, how does the medical student, intern or resident respond? By emulation, unfortunately; and why not? He proceeds from the medical college where no demands are made of him, to the hospital where his superiors fail to embarrass him over this lack, to private practice where his peers are sympathetic. Only his patients distress him, but unfortunately, even here it is but a small stimulus. The magnificent and unfathomable philosophical adjustment of these long-time sufferers has led them to expect very little. So that's just what they get. My solution is simple, through education, reverse this unfortunate evolution. I wish that the tactics were equally simple. It seems to me that your program must attack the problem at all levels simultaneously if the vicious cycle of "ignorance begetting ignorance" is to be destroyed. In conclusion, I offer this list of ideas: (1) Begin with a public campaign. Consumerism is in style, and an informed patient who presses his physician for better care will get results faster than any curriculum committee. (2) Pick up the theme of "general care" or "primary care" for arthritis which is already in motion for care in general in America. Don't say the soluticn to the arthritis problem is simply the production of more rheumatologists. We can't claim our interest in "20 million arthritis patients" with such a narrow solution. If you «credit the generalist with more responsibility for the care of arthritis, he must rise to the challenge. (3) Do pressure medical schools, first to exchange their elective programs in the specialties (usually in a rather nebulous final year in school) to a long-term experience in outpatient clinics before graduation. Experience in arthritis care, along with care for other chronic diseases, will follow naturally. (4) Call upon the American Boards of various specialties to demand prolonged outpatient experience during early house officer training. (5) Support a small number, perhaps one or two clinical fellows in rheumatology at most or all medical schools. They will 1-57 Tucson, Arizona September 8-9, 1975 contribute not only to the pool of future rheumatologists, but are even more essential as teachers, the best and most readily available to students and general house officers. (6) Develop "centers of arthritis care" only in situations which incorporate training of general physicians as well as subspecialists. A narrower "institution" approach will more easily develop depth or more efficiently deliver care to a few patients, but it will fail to pay the dividend of dissemination. Such "centers" should allow the student to witness, not only his teachers performing excellent care, but the cooperation of those teachers with physical therapists, social workers, podiatrists, specialists in home modification, psychologists, and probably others. Physicians and allied health workers in private practice should find a ready place fcr postgraduate training here. The faculty would come from both town and gown. Cutreach programs from the center should ke able to send almost any component, except the highly technical, on a temporary basis to distant communities. An ongoing effort to offer all arthritis patients services and deeper education should be the heart of the program. Thank's very much. ENGLEMAN: Thank you, Dr. Boyer. Dr. Spriggs. TESTIMCNY CF JOHN T. SPRIGGS, M.D. INTERNAL MEDICINE TUCSON, ARIZONA SPRIGGS: DIr. Engleman, members of the Commission: I am Dr. John Spriggs, a physician in solo private practice in Tucson for the past 13 years. For the past year I served as a coordinator in the Regional Medical Program. The arthritis patient in the smaller communities miles from the larger medical centers present proklems that are unique and challenging. Part of our arthritis service program attempted to define and answer these problems. It was one of our propositions that the interests of the patient and the patient's family would ke best served by providing as much service and treatment as possikle in his home community environment. The larger center would be used only for those services which were not feasible to provide in the home community. To accomplish this program, consultation clinics consisting of an orthopedic surgeon, a rheumatologist, a physiotherapist, and a counselor were sent into the outlying communities for patient evaluation with the 1-58 Tucson, Arizona September 8-9, 1975 family doctor. Such «clinics offered not only opportunities for patient care, but also medical and paramedical education through demonstration and informal discussions. Additional outreach education was developed through the use of audiovisual teaching aids rlaced in the nurses lounges of the community hospitals. Such aids not only provided additional skills, but helped to increase the awareness of the arthritis problem in these medical and paramedical personnel. Pilot projects of home modifications were also performed in certain instances, as directed by personnel acting in the capacity of rehabilitation nurses. While the project did not have a rehabilitation nurse, as such, their need was readily apparent. Local community media in the form of radio and newspapers were utilized in an effort at patient education and information. While budget limitations necessitated only a small effort in this direction, its importance was demonstrated by the discovery of severely afflicted patients whose existence was unknown even to the local community medical personnel. The difficulties presented Ly cultural and fear barriers to effective treatment has already been mentioned. "Mini" workshops for medical and paramedical personnel were presented at various outlying communities. In addition, larger workshops were held at the University of Arizona in the various aspects of arthritis care as it pertained to medical management, allied health personnel care, and the problems of the arthritis patient's family. An intensive one-week course in the clinical management of arthritis was offered to physicians in the outlying communities. § Our experience in this program has shown that active community support on all levels is necessary for success. Those persons, lay and professional, dealing with the patient on a daily basis in his home community should be the foundation of good care. It is unfortunate, but many barriers tend to exist both inside a community and between communities that detract from maximizing patient care. The tendency of the large center to "lock down" at the small outlying community, and the small outlying community to feel "threatened" by the large community is one such barrier. The dialogues established through the programs mentioned have hopefully tended to dispel some of these barriers. I would like to close with the observation that any success achieved by the RMP program was prokably due to all elements working in close and willing cooperation with each other. These elements included: the physicians in Tucson from the various group practices, solo practitioners, the University, the Veterans! Hospital, the physiotherapists, the occupational therapists, the nurses, and the social workers, as well as the medical, paramedical and lay people in the outlying communities. Thank you. 1-59 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Thank you, Dr. Spriggs. I think that we've had five excellent presentations from the local physicians who speak superbly for the quality of the medical practice in Tucson. I wonder if we have any questions from members of the Commission? Dr. Batchelor. BATCHELOR: I'd just like to respond to Dr. Boyer's comments about education and some of his recommendations. I think he would have found it heartwarming if he'd been a fly on the wall at the deliberations of the particular group of consultants who have keen asked by the Commission to address these problems. But, turning it around the other way, we will make certain that the presentation that he gave here is brought to their attention. LEWIS: I have one question to ask the doctors, how does it happen that people are coming to Arizona for treatment and Arizona already has in its area a group of people who have the largest percentage of arthritis who are residents already; what do you attribute that to? PARSONS: We have the large percentage because of the influx from other parts of the country. We do have incidents of arthritis developing in Tucson. You're not immune by living here or being born here. But it has been shown in climatic studies -- notably Hollander's in Philadelghia, and others, that climate does -- or weather does have an effect on arthritis in a high percentage of patients. It's not a cure, but it's an aid in the armamentar ium. Therefore, even though dcctors didn't recommend change of climate, patients discovered long ago, over the last 30 years, that they feel ketter here and that they have less severe episodes of the disease; it is an advantage, so we have a great influx. LEWIS: I asked a question, particularly concerning the Indians. One of the speakers indicated that the Pima Indians have a considerable percentage of people with arthritis, and they are the natural residents, I would say, of Arizona. Fut they have so much arthritis, and still you have a large percentage of people coming; that's why I was asking the question. I wanted to know what the situation is, that's all. PARSONS: Dr. Engleman's quite aware of the work that went there, I'm sure. This was a study for epidemiological studies there. one of the basic questions asked, of course, was, is there a heredity component? It was much to people's surprise that this instance of arthritis existed on that reservation. If you'd like to talk Indians a minute, I think that we would find among the Apaches a very, very high instance of hip dysplasia. And if you go on the reservation, as I have, up there you'll find many of the males limping because of hereditary hip dysplasia. Diabetes is a hereditary disease which has cccurred in other Indians here. This is a highly inbred population, and we hope that this experiment of nature will give us a point with which we can attack the disease. HAVERS: By the way, just not the Indians in the Southwest -- from my own native British Columbia we have a high instance of spondylitis in the Haidas. 1-60 Tucson, Arizona September 8-9, 1975 I was going to ask Dr. Spriggs and also Dr. Hill, how much is your RMP grant for your Arthritis Service Program? HILL: $214,C00. SPRIGGS: Yes; $214,000. HILL: For each year of two years? SPRIGGS: For one year, and then it was renewed. HAVERS: Okay. When you talked of the audiovisual aids, was that only for your allied health, or were you evaluating the use of audiovisual aids in patient education? SPRIGGS: My part of it was associated with the allied health brought in. Now, there were a number of different programs which -- I'm not aware of all of the programs that were in this. We brought out some of the films that we had already had on file, placed them into the nurses! lounge, and tried to get them to use it at their convenience -- at their own time. HAVERS: And you will ke evaluating whether, in fact, they used them? SPRIGGS: This has been an evaluation that's gone on. I'm sorry, I'm not in on that particular evaluation. ENGLEMAN: Yes, Dr. Polley. POLLEY: I think I want to commend the presentations, too, not only the ones we've just heard, but the ones we've heard all morning, and I presume the ones to come. I think you appreciate, from what Dr. Engleman said earlier, that we're here because of the reputation of the Tucson arthritis effort. And, I would be sure that before we're through, we're going to be in other areas where that reputation is conspicuous by its absence. I would like to ask somebody on the panel here, whoever wishes to respond, what is your primary need, in view of what you've already done here? What are your uppermost needs, from our standpoint? SPRIGGS: That's a very interesting question because we asked ourselves that question in preparation for you, and we didn't really get a good answer. Jack, do you want to tell what you did? BOYER: Well, Mrs. Brisson just whispered the answer. The answer is money. BOYER: We have begun to define the proklems, I think rather well. We've even got some solutions started. But the thing that's so overwhelming is the frustration of identifying needs and not being able to respond to those needs. 1-61 Tucson, Arizona September 8-9, 1975 I think that so many things are right at their beginning. I don't think the program in physician education was so successful in terms of leading to behavioral changes on the part of the physicians who came into study. But, goodness, they were very successful in getting communications started. I was pretty disappointed to go out to one of the communities, after having one of those physicians in, and finding he was still practicing in the way he had before, in spite of some pretty careful stuff I thought we'd gone over. And of course I had to look to my own deficiencies in persuasion. But I also was aware that he was delighted to have me there and talking with him; and I think that's a good beginning. I hate to say it, kut money is what we need. PARSONS: That was really the summation of about four hours of talk. HILL: Well, I believe, too, that we'll ke in a better position to give specifics as we have a little more information passed on to us from this Commission in its deliberations of procedure. POLLEY: I wish I had the courage to ask how much money you want. SPRIGGS: I think in the question of how much did the paramedical personnel utilize, the age we put on is very germane to the point. We'd go out to the communities early to talk to them, to get them to come, to accept the program, and we'd have very little turnout to our talk. And yet, I think as the program went on the acceptance became greater and greater. This was by no means a complete answer. I think it was just a first step in the answer, and demonstrated some of the very major problems that are still existing. PCLLEY: I'll ask the question again, though, that come next summer, that's all going to go away? SPRIGGS: Unless more funding is fcund. PCLLEY: No local funding? No State funding? VOLZ: Yes; we have programs that are going on, but we don't have the money to carry on the whcle program. No; we have clinics that are going on. These will continue. We're looking into ways of refinancing some of the programs. No; the whole thing isn't going to go down. ANTHROP: TI would like to know, does the State match any funds with your Foundation here in the Southwest? Do you also find that the many retirement communities that have sprung up throughout southern Arizona has added to your caseloads? PARSONS: The answer to the second one is yes. After we got past money, I would like to give you one specific thing that we were thinking about here. I think you're all well aware of the British Columbia experience in bringing people from outlying areas to a 1-62 Tucson, Arizona September 8-9, 1975 central area for intense education and treatment. One of the things that we would like in Tucson is to be akle to have such a house as they have there, where we can give living experiences, and then also use the facilities of the community to give the expertise of care for the patient with arthritis. This would be one of our most immediate needs. We don't have such a thing. We could use it very well with the facilities we've developed already. ENGLEMAN: The work group on community programs has actually visited the program at Vancouver, and hopefully we'll gain by their experience and thus will help the Commission in formulating its recommendations. Well, thank you very much, gentlemen. We certainly enjoyed having you here. I would now like to call on Mrs. Scott. TESTIMONY OF MRS. LEE SCOTT ACTIVE IAY PERSCN/PATIENT SCOTT: My name is Lee Scott. I live at 2518 West Calle Tonola. I would like to recommend to the National Arthritis Commission that they put a special emphasis on counseling for arthritics and their families. And, as you well know, that's been brought up several times this morning. I mention this because, in my own case, this has been especially helpful to me. I've had rheumatoid arthritis for 16 years, and part of that time I was completely in a wheelchair. But I'm very grateful to say that for the last five years, it has been in remission to the extent that I've had no pain at all and the effects of the crippling are gradually going away. I am grateful to Dr. William Fosdick. I am also grateful for the drug Cytoxin and the group therapy that I had been in, which has proved to be such a help to me. All of us who've had arthritis know that along with the terrible pain and other physical problems come many emotional problems. It's concerning the latter that I'd like to ask the Arthritis Commission to urge that funds from this National Arthritis Act ke used. I would like to give you just a very brief background: For years I felt that emotional concerns, most of which I had kept buried, were aggravating the arthritis; and, in my case, might have even caused the arthritis. About eight or nine years ago, about seven of us arthritics formed a prayer therapy group to see if we could get to understand ourselves better psychologically and spiritually. Since we were all going to doctors, we did not concentrate on the rghysical, but mainly on the emotional and the spiritual, and how these three were interrelated. We started out by paraphrasing the steps of AA. I had checked with them ahead of time to see if it was all right. For instance, the first one, we admitted that we were powerless over arthritis. And, just to mention the second one, we came to believe that a power greater than ourselves could restore us to wholeness. For all of this we had the encouragement of Dr. Donald Hill. 1-63 Tucson, Arizona September 8-9, 1975 This group has continued to be a great help to me. It has stimulated me on my own to examine and to be willing to face my fears, resentments, and frustrations. It's helped me to want to study and to meditate, and I know that all of this has helped me physically. Because I kelieve that we're all made up of mind, body, and spirit, and one affects the other, I would like to urge those on the Commission to consider the importance of counseling for arthritics and also their families. I realize that money or planning by the Government cannot be used for spiritual matters, but I'm sure that the psychological areas would be acceptable. Medical doctors are so busy with many patients that they don't have time for ccunseling. I understand that at present there is a therapy group under the auspices o¢f the Arthritis Foundation of Tucson; perhaps more could be added. If the doctors realize the benefit to their arthritic patients, they could urge some of them to try these therapy groups. As to the arthritic who is confined to his or her home, hospital, or nursing home, I would like to ask the Arthritis Commission to consider using funds to hire more counselors that might be able to visit, counsel, and encourage the ratients. I emphasize encourage because arthritics need to know that there is hope, and that nothing is impossible. Maybe along with paid counselors leading therapy groups there could also be patient-led groups, such as they do in AA and Weight Watchers, where they use the lay people. But local doctors, hospitals, and the Arthritis Foundation could encourage and provide meeting places and transportation when necessary. Along with this might come assistance from social workers and pastoral counselors. If all this counseling sounds too big and expensive, I'd like to assure you that any arthritic that could be helped toward health and wholeness, that he or she would be so grateful that I'm sure they would become a contributing member of society. And, as has been mentioned before, they would be paying taxes, or else they would be better homemakers, and would possibly get involved in volunteer jobs. Thank you very much. ENGLEMAN: Thank you, Mrs. Scott. HAVERS: Mrs. Scott, is that group still going on? SCOTT: Yes; we meet about twice a month. HAVERS: And have there been any additions or dropouts? SCOTT: There have been additions, yes. HAVERS: And how big is it now, then? SCOTT: Well, we keep it small. There's usually about seven or eight. One of our friends is right back here. 1-64 Tucson, Arizona September 8-9, 1975 HAVERS: Is this going cn elsewhere, that you know of? SCOTT: Well, I understood that the arthritic... HAVERS: No, no, just like you did. SCOTT: I'm sorry, I dcn't know. HAVERS: Because you're involved, really, individual to individual. You're not involving the families? SCCTT: No, no. HAVERS: And you got the idea? SCOTT: Yes. HAVERS: Was there any involvement of any so-called professional advice; social wcrkers, psychologists, psychiatrists, and that sort of stuff? SCOTT: No. HAVERS: No; and you've keen... SCOTT: But, as I say, Dr. Hill was very great about encouraging us at the beginning. HAVERS: He's a good Father confessor, I know. Very good. Thank you. POLLEY: Dr. Lamont Havers didn't include ministers in there. Were there any ministers behind this? SCOTT: No. ENGLEMAN: Thank you again, Mrs. Scott. BATCHELOR: May I also ask, if you have any suggestions to make to others, other communities remote from this who might be interested in doing the same, I would hope you would add it to your written statement. ENGLEMAN: Thank you very much, Mrs. Scott. We will now proceed to invite our friends from New Mexico. We're very happy, indeed, to have with us three physicians who are visiting us here. The list I have here is: Dr. John Hunt, Dr. Ronald Messner, and Dr. Arthur Bankhurst, in that order. Is that correct? HUNT: Dr. Engleman, it's Mr. John Hunt. I'm not a physician. ENGLEMAN: I see. Very good. We'll ke delighted to hear you anyway. HUNT: Thank you. 1-65 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Mr. Hunt. TESTIMONY OF JOHN HUNT ADMINISTRATIVE DIRECTOR NEW MEXICO ARTHRITIS PROJECT REGIONAL MEDICAL PROGRAMS UNIVERSITY OF NEW MEXICO HUNT: For all of us concerned about the problem of arthritis and the problems of those who suffer with it, the passage of Public Law 93-640 was greeted as a tremendous step in the right direction, and our sincere thanks to the Commission for giving us the opportunity to express our views and ideas on this law's implementation. It is our honest belief that in order for Public Law 93-640 to have its maximum impact on those it is intended to help, it is necessary that the Arthritis Plan called for in the law take into account the geographic and demographic peculiarities of every region. Needless to say, our particular interest is the Rocky Mountain States. The Rocky Mountain States constitute a relatively sparsely populated band from the Canadian to Mexican borders, covering almost one-quarter of this nation. The southwest part of this region is already oriented to service from essentially four populaticn centers: Salt Lake City, Denver, Thcson, and Albuquerque. Most points within the Rocky Mountain States are within one-half day travel to one of these four cities. Its service areas cross state borders as a matter of convenience and economy, as well as Federal designation (for example, the Indian Health Service and the Veterans' Administraticn Hospitals). Each of the cities mentioned above have universities with reputable research programs and rrograms of demonstrated ability in the field of arthritis under Regional Medical Programs. If the Comprehensive Arthritis Centers called for in the law are to adequately serve this region, we must strongly urge the Commission to seriously consider the funding of multiple centers based not solely on population, but rather on their accessikility; in other words, no less than four centers within the Rocky Mountain States. No matter how impressive or legitimate a few very large centers nationally might be, such centers in the context of the geographic and demographic realities of the Rocky Mountain States could not hope to meet the needs of the arthritis sufferers as we perceive them, or the intent of the law, as we are led to understand it. Many centers already exist that provide all or at least most of the 15 services mentioned in Section III, paragraph G of Public Law 93-640. To fail to incorporate such existing centers with their facilities, programs, and personnel into the arthritis plan is, in our estimation, a waste of a most valuable, if not essential, resource. 1-66 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Thank you. Dr. Messner. TESTIMCNY CF RONALD MESSNER, M.D. DIRECTOR, ARTHRITIS UNIT UNIVERSITY CF NEW MEXICO MEDICAL DIRECTOR NEW MEXICO RMP PROJECT MESSNER: I wish to talk specifically about our needs in New Mexico. By way of background, the Arthritis Center in Albuquerque is currently involved in all the activities listed in Section III.g of the National Arthritis Act, except the computer data bank. It is a multidisciplined center, made up of an academic and practicing rheumatologist, orthopedic surgeons, and allied health personnel. We are deeply involved in postgraduate education, have utilized group therapy for patients for over five years, and are trying what we now believe to be an exciting new program utilizing nurse practitioners. Cur many patient care and educational activities are backed with a strong program in basic research. In assessing the priorities of our future needs, there are two main areas that will require support: (1) education, particularly with respect to programs designed to upgrade care in rural areas, and (2) basic research. With respect to education, we feel the great need in our area is to reach out and bring more knowledge of how tc treat arthritis to those individuals who are delivering health care in the smaller communities. It is unreasonable to assume that we will at any time in the near future be akle to populate rural areas with rheumatclogists or orthopedic surgeons. These specialists are and will be located in secondary and tertiary care centers in larger cities. Continuing education of physicians in large cities is important, but in this instance the educators are there in :he university and community, in close proximity to those who can learn. 1 he trick is to get the two together. That takes ingenuity and a certain amount of mutual understanding, but we believe it can be done within the existing system. Where we really need financial help is in the outreach programs. I speak here not cnly of physician education, but also of nurse practitioners, nurses, physical therapists, occupational therapists, community health workers (particularly those involved in social and psychological rehabilitation), and the general public. Through the RMP Arthritis Project, we have seen how beneficial this kind of education can be. In the past year, our traveling team of physicians and allied health personnel has concentrated on several communities in our State. We have run educational programs for physicians, allied health personnel, and the public. We have seen the attitude that nothing can really be done for arthritis give way to c¢ne of hopeful cooperation between physicians, patients, and also the friends and families of those afflicted. Attitudes and practices can be changed for the better. It does, however, take a great deal of time and effort to do this job well. We will need financial support for center personnel to carry on these programs. At present, we cannot expand our outreach program without compromising our responsibilities to patient care, education of medical students, and 1-67 Tucson, Arizona research in the need support for physicians practitioners, physical part in the traveling team and to personnel. to arthritis center itself. therapists September 8-9, 1975 we will nurse to take health In our specific case, run the outreach program, and occupational therapists aid in education of allied We will also need money for the travel involved. In summary, we believe that a high priority should be given to support of arthritis center personnel who will take a leadership role in education and patient care both in the center and out in the rural areas of our State. We feel that in this way money spent under the Arthritis Act will have an important and lasting effect on the care of arthritis in our area. Thank you. ENGLEMAN: Thank you, Dr. Messner. Dr. Bankhurst. TESTIMCNY OF ARTHUR BANKHURST, M.D. RHEUMATOLOGIST ARTHRITIS PROJECT OF NEW MEXICO ARTHRITIS CENTER UNIVERSITY OF NEW MEXICO BANKHURST: The second priority be research. In the last decade, of some of the mechanisms involved other rheumatic diseases, but, for ignorant of the cellular of analgesic and anti-inflammatory swelling, and redness of a events control the inflammatory aftermath. diseased of the Regional Arthritis Center should we feel we have gained an understanding in the pathogenesis of gout and several the most part, we are still hopelessly which initiate the disease and then Simply because there exists a variety agents which can suppress the pain, joint does not mean we have an understanding of what started the rheumatic process in the first rlace. To reinforce the need for research, I example of how research performed laboratory has quickly been understanding the produce antibodies after other strains did not. of one family are immunity and are protected against another family never develop exposure to tHe same disease. investigators found that the immunity was linked with the present on the cells same determinants passed down cause of certain forms of arthritis. years ago, basic investigators realized that injection of certain synthetic materials while By analogy, injected with immunity Returning to the genetic presence of the responder. given the technical name of "histocompatakility antigens", which would 1like to give you an in the ivory-tower context of the basic to a major breakthrough in Approximately 10 one strain of mice would this is like saying that when members a hypothetical vaccine, they develop a certain disease, while members of and cannot be protected against animal experiments, the potential of the mice to develop certain genetic determinants These genetic determinants are are the of which decide whether a kidney transplant patient will receive a kidney from donor A versus other possible transplant donors. 1-68 Tucson, Arizona September 8-9, 1975 During the last four years, other investigators have made the unexpected finding that certain forms of inflammatory arthritis of the spine -- ankylcsing spondylitis -- is associated with the presence of certain relatively rare human histocompatibility antigens. In other words, the revolutionary idea was introduced that not only are certain types of arthritis genetically determined, but by analogy with the animal experiments, the differences may ke related to differences in immunologic responsiveness, We can only speculate that, at least for ankylosing spondylitis, the disease may result from the combination of exposure of a genetically susceptible individual to an initiating event which, via an autoimmune mechanism, gives rise to disease. We still have not identified the initiating stimulus, but our understanding of the possible steps in the evolution of this fcrm of arthritis would still be obscure if it was not due to these basic research efforts. Because of the contraction of other Federal research monies, such gicneering research in the future will be severely jeopardized. We are not advocating research just for the accumulation of non- relevant facts. We feel strongly that the creative milieu of research in the comprehensive arthritis center makes its impact on all other creative endeavors, whether it be outreach education or individual patient care. Innovative, energetic, and creative health care can only prosper if such a spirit of inquiry is fostered. We strongly urge that the National Arthritis Act be implemented through arthritis centers with the three- pronged approach of patient care, research, and education. Only such an effort can effect a lasting impact on the problem of arthritis. ENGLEMAN: Thank you very much. I'm going to ask you a question that we have to ask ourselves. Let's just suppose that somehow the Rocky Mountain States were given $1 million, and you had to decide how much of this would go into research, both kasic and clinical, and into the outreach program; how would you divide it up? I assume that you would divide it up. I assume it would not all go in one, but how would you propose to divide it up? MESSNER: You're right; that's not an easy question. Luckily, you can sort of duck through the middle of it. Ry financing people who would work in the center -- physicians, rheumatologists, orthopedic surgeons =-- you buy both. Then these people can take part one day in the center, educating and doing research, and the next week be on the road taking part in continuing educaticn. So you really don't have to buy either/or entirely. Now some of the money, obviously, does have to be split either/or. When you buy the key personnel, you essentially buy both. When you put it into travel, you're buying outreach. When you put it into test tubes and technicians, you're buying research. Exactly how to split it up? Certainly, I wouldn't speak for Salt Lake City, Denver, or Tucson; I'm sure they might have different ideas than we do. I'm not sure I can give you a pat answer to that. I think they're both very important. I think as far as immediate impact, the outreach programs would have that. They can accomplish that. 1-69 Tucson, Arizona September 8-9, 1975 I agree with some of the comments made just prior to our presentation, that there is a lot of knowledge currently available that isn't being applied. The outreach type of education can put that knowledge to work. So TI think that should have a high priority. On the other hand, if we ignore research, we're never going to get any new knowledge to apply, and we're not going to get much farther. So how to split them up would be somewhat tricky. We've discussed this amongst ourselves. If we were calling the shots, what would we do? I think we'd like to see every center get some research funding. We think research is key to the milieu in which the centers operate. On the other hand, I also believe that we shouldn't do research just for research sake. A bulk of that money should probakly be dealt with on a national competitive scheme, similar to the NIH or the National Arthritis Foundation. TI mean, if one center has four good ideas and somebody else only has cne, the center with the four good ideas ought to get the money to do it with. There's no sense in putting it where the ideas aren't. And so, although we kelieve research is important in every center, we realize that there will be differences in capacity to do research from one center tc another. BATCHELOR: My question is addressed particularly to Mr. Hunt. I was interested in your picture of the region and the division into four areas. As you presented this, I was reminded of the fact that in our planning for implementation of this Act, we must take into account other legislation, particularly the law that was signed the same day as the arthritis legislation that had to do with regional health planning. I wondered, as I listened to your presentation, Mr. Hunt, the extent to which the subdivisions that you described reflect what has keen in existence or what is being called into existence as a result c¢f the requirement for development of new geographical boundaries and health systems agencies. HUNT: The governors of the four states I mentioned -- Colorado, Utah, Arizona, and New Mexico -- chose not to cross state boundaries in designation of HSA's under 641. Consequently, I quoted only two designations that do cross state boundaries; namely, Indian Health Service and Veterans! Administration. All of the other states in the region, I believe, at least to the best of my knowledge, do not cross state boundaries in relation to health systems agency designations. BATCHELOR: Do you feel that the progress that you've made in planning before 641 will be a workable Lkasis on which to develop your health systems agency? HUNT: The entire question of how health systems agencies are going to work out, particularly in relation to arthritis, has not really been spelled out. New Mexico was one of the late ones in getting the designation into HEW. I kelieve it was August 15th when we got our first notice that it had been accepted. So I really cannot answer that. BATCHELOR: You're still in the rlanning stages, then? HUNT: Very definitely so. 1-70 Tucson, Arizona September 8-9, 1975 BATCHELOR: Thank you. MESSNER: I might say that the referral patterns -- you know, where patients flow -- certainly do cross state lines. We draw from southern Colorado, parts of northern Arizona, and parts of east Texas; and Arizona draws from southwestern New Mexico, you know. And these kinds of patterns are very real, and geographically, you know, realities that we have to consider, I think, in spite of the political state lines. And patients are going to go in these directions, and we have to consider that. ANTHROP: I think, particularly your four corners area, because I know in the crippled childrens! it was the same way. ENGLEMAN: Thank you very much, gentlemen. I will now call on five or six people to come to the front of the room. Ms. Novak, Ms. Holms, Ms, Reaves, Ms. Martin, Mrs. Rahming, and Mrs. Richmond. We'll call first on Ms. Reaves. TESTIMCNY OF MS. ALAMO REAVES ACTIVE LAY PERSON/PATIENT REAVES: Since others this morning are stressing the need for increased research, medical care, and physical therapy for arthritis patients, I want to talk about improving the arthritic's role in society. Although disabled, the arthritic must continue to function among the non-disabled on three levels: the individual, family, and communal. On the individual level, he has to face the facts of his plight =-- that he has an incurable illness that, at best, will go into periods of remission, and, at worse, will ankylose his body into virtual mummification; that no matter how hard he works, struggles, exercises, for every one step he takes forward, he will be pushed back two steps; that his abnormal body will never be able to keep pace with his normal mind; that he will never be free of pain, but will ever after consider his condition in terms of more or less of it. He must come to realize that he is no longer attractive to the opposite sex; that he will be ostracized from certain mixed segments of society because of his grotesque crippling; and that he will be unable to compete on the job market and will be doomed to a lifetime of poverty and all the ignominies and frustrations which that income level implies. These are pretty overwhelming facts to ask anyone to accept. But victims of arthritis are forced to accept them everyday of their lives, and for many, the situation grows more bleak as the years go by and their disease progresses. I have been sick for over 20 years, and never has my personal situation seemed as hopeless as it has this past summer when every attempt to help myself has failed, because the fact is, I am a severe arthritic and cannot help myself. Probably all disabled people go through a period of psychological readjustment. But because arthritis is incurable and progressive, its 1-71 Tucson, Arizona September 8-9, 1975 victims must readjust continually to decreasing mobility, lowered energy levels, and lessening independence. This is a lonely battle for most of us. Physicians, who should ke most aware of our psychological problems, more often than not seem least aware, or, if aware, are too preoccupied with the physical implications of the illness to be bothered with the emotional. Members of the allied professions are also in a prime position to offer emoticnal support to arthritics, but again are often too insensitive or too involved with other things. Counselors are another prospect, but are too often ineffective because they are inadequately trained in the unique proklems of arthritics, or there are too few of them to cope with the vast numbers needing their services. It is essential to recognize the psychological effects of arthritis and the victim's very human need for acceptance and approbation in spite of it. It is essential to increase communication between professionals and patients in an effort to help the individual face the reality of his situation and make the kest cf what abilities remain to him. Intangible and untestable as it may be, a patient's feeling of self-worth is a vital weapon in his fight against his disease, and can be kept intact only if those around him recognize and respect its value. On the family level, the arthritic's position is also untenable. Any chronic illness imposes a hardship on the family, but with its peculiar characteristic of flaring up and remissing, offering hope of recovery and yanking it away, arthritis imposes a maximum hardship. Whether spouse, parent, or child, the arthritic is not only unable to meet his responsibilities to other members consistently, but he must draw on the time, strength, and patience of others for his own care. Most families can cope with tempcrary emergencies; few can withstand the day-in, day- out, vyear-in, year-out Lkurden of meeting the demands of the chronic arthritic, of never knowing or understanding from one day to the next what his capabilities or needs will be, of working through the constant psychological stresses of guilt, inadequacy, even hatred, that such a situation imposes; and the home atmosphere, not always ideal to begin with, rapidly deteriorates into a Lkattlefield with all members of the family, and especially the arthritic, suffering from the resulting emotional exhaustion. Probably the most crucial problem involving the family is financial. When the arthritic is a breadwinner, his wage loss is an immediate threat; when the patient is a dependent, his extreme, unending medical expenses eat up all salaries, savings, and investments, reducing the family to a low-income level and creating further psychological crises among the members. Insurance is not the answer. Few private companies will cover a pre-existing condition; when they will, they charge exorbitant rates for limited benefits. And for those who qualify, Medicare covers shockingly few medical expenses and practically no maintenance therapy. Again, professional understanding and the ability to advise is essential for the family welfare of an arthritic. Increasing the number and availability of home services, such as nursing and physical therapy, and coordinating these services with volunteer groups interested in arthritis, would relieve some of the family pressures. Provision for home, office, and vehicle modifications and trained personnel to instigate 1-72 Tucson, Arizona September 8-9, 1975 them would also be helpful. And financial assistance for medical and therapeutic services, aids, drugs, appliances, etc. would be a godsend. At the community 1level, due to the obviousness and repulsiveness of his illness, the arthritic is relegated to second-class citizenship and thrust into the largest minority of all -- the minority of the disabled. In our society, where people are measured by monetary worth, he can no longer contribute substantially to the economy, but becomes dependent on it for survival. When his physical condition will allow him to work, he has trouble finding a job because employers are all too aware of the tenuousness of an arthritic condition, or because he can nc longer function in the field in which he was trained, or because he is frustrated by purely technical barriers, such as inadequate transportation and flights of stairs. He must fight the continual stigma of being an arthritic and has no chance of obtaining work in any area where physical appearance is vital, or even desirable, from the media right down to a receptionist job. He is frequently excluded from social situations because the physical sight of his illness is frightening to the many ignorant, uncompassionate non-disabled; and he is subjected to a variety of traumatic psychological attitudes, experiences, and harassments that further add to the trauma of his physical conditicn. It is degrading to extend your hand and have someone jerk his back in horror. It is degrading to have children, and sometimes adults, mock your penguin gait. It is heartkreaking to be excluded from a wedding party because you use crutches. It is infuriating to be denied a hairdresser appointment because your presence might discourage healthy patrcns. It is emkittering to have a mother turn her son against you because she doesn't want him to marry a cripple. Financial subsidy to arthritics seems like an obvious answer, and in some cases, may be the only answer. But financial subsidy can also erode that all important virtue, an arthritic's awareness of self-worth, that is already being kadly battered by appeals to relatives, welfare departments, the need to beg for food stamps. The average arthritic does not want a hand-out; despite his disease he still has certain potentials and he wants to be helped to help himself. One thing wrong with current Social Security disability laws is their tendency to discourage employment. In addition to subsidizing arthritics, the Government would be well advised to rehabilitate them whenever possible, to help them achieve independent function within the community and arouse community concern for their special problems. Every effort should be made to make arthritis in all its ugliness acceptable to the general public, not as routine, but certainly as a reality of life that needs to be faced by the patient, his family, and the community at large. Arthritis is a catastrophic condition, but it does not need to totally destroy its victims. Pain, inflammation, joint damage -- all are destructive, but despair is more so. It is my contention that there is no such thing as a physical handicap, there is only emotional handicap. 1-73 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Ms. Reaves, if given your druthers, what would you 1like to see us recommend? REAVES: You mean, to improve the condition of the arthritic in society? I think it's vitally important to educate the public. I think every effort should be made to make arthritis acceptable to the general public, not as routine, but as a reality of life that needs to be faced by the patient, his family, and the individual. ENGLEMAN: So, in effect, education. REAVES: Public education. ENGLEMAN: At all levels? REAVES: At all levels. ENGLEMAN: Right. Any other question? Fine. Thank you very much, Ms. Reaves. We'll now call on Ms. Novak. TESTIMONY OF SHARON NOVAK ACTIVE LAY FERSON PARENT OF CHILD WITH ARTHRITIS NOVAK: My name is Sharon Novak. I reside at 9202 North Concho Lane in Phoenix. I have come before the Commissicn today because I am one of 500,000 parents who has a child with arthritis. She has had arthritis for 21 months. She's now 5 years old. I have a long speech, which I'll disregard kecause of the time, and briefly tell her story. At 3-1/2, fcllowing an ear infection, the knee joint on her right knee became inflamed about three times the normal size. We took her to her pediatrician, who ran a battery of tests. It took a total of two months to diagnose the disease -- JRA. In the beginning of the tests he had said, because they did not know what it was, that she should be kept home from preschool, with little activity. Due to little activity, a contracture started to form. By December of that year the contracture was fully formed. She was then sent -- she had already had three or four doctors in that interim. One doctor, who was familiar with dealing with crippled children, hut was not familiar with dealing with anybody with JRA, recommended a leg trace, which, at a cost of $300, she wore for four months. Then it was disregarded by an orthopedic surgeon, who said this was not good for her -- tc be wearing this trace. She went into the hospital, which was another needless visit because there wasn't anything they did for her there, except put her on a new drug that had come on the market called Motrin. Later I found out -- through a pharmacist I found out that Upjohn, the manufacturer, says: "Since there is little clinical experience in children 14 and under, Motrin therapy is 1-74 Tucson, Arizona September 8-9, 1975 not recommended for this age group." So then she was taken off of the Motrin. My pediatrician felt that in her case, she would do better with just large doses of aspirin and lots of exercise. She has it in both knees now, both the right and the left knee. In her right knee, because of the contracture, an orthopedic surgeon, who was excellent, did cast- wedging. It took three months; she wore a cast. It was wedged three times and then replaced. This went on for every 10 days for the 3 months until the contracture was out. Then she had to go into extensive therapy for flexion. We have a swimming pool in our yard, which we had put in because of her. The exercise has really done great things for her. We also have a therapeutic whirlpool in our yard which she uses in the summer months. In the winter months we're going to have a jacuzzi for the bathtub. We're lucky because we're able to afford these things that give her comfort, that give her exercise, that help her to lead a normal life. She's now 5 years old. She attends public kindergarten. She rides the bus to school, gets on and off the Fkus. She participates in all activities. She's now looking forward to going to dancing school. The dancing school will help her to use muscles that she doesn't normally use. She talks about her arthritis to people. She says that she hopes she will go into remission. She says that she hopes in her lifetime they will find a cure. She's a little fighter. And I have to admire her, because at 5 years old her cutlcok cn life and the way she feels about her disease is fantastic. I'd like to read this one paragraph: "Juvenile rheumatoid arthritis is a long-term, chrcnic illness that both the child and his parents have to learn to live with. Parents have to understand what their child's illness is and how they can help him. They must understand that some days are worse than others; and on these days they must have great patience. No single treatment can be prescribed for all children. This is where the need for parent education comes in. The treatment must be individualized and no one is better akle to help the child than the parents." If there were centers set up, parents who are having trouble helping their child could go and learn the best treatment; and they could have psychological counseling to help them through it. Parents who work easily and well with their child are, in truth, equal partners with the doctor. Treatment of JRA has one major aim: to help the child live as normally as possible. I hope that my child's arthritis will not go into areas, that it will stay in her knees, and, hopefully, will go into remission. She is able to deal with this, and she is leading as normal a life as possible. I have been trying to start in the Phoenix area a group of parents with «children with arthritis, so that together we can work and help each other to help our children. There is no such group in the Phoenix area. We have very little for the arthritic, very little help available, no centers where they can go. Hopefully, through this Commission, these things will be possible. 1-75 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Thank you, Mrs. Novak. HAVERS: TI must say that Mrs. Novak's experience with your drug is one of the big problems in the Western world today -- the fact that there is no way in which we can gain experience with drugs in children the same way as we gain it in adults, since you cannot test drugs on normal children to get that -- how the child reacts. This is a problem. So the fact that the drug that you were using had that warning -- you'll find that on practically every drug. NOVAK: I know; I'd also like to add one thing. In the beginning of her illness, her pediatrician had put her on steroids for a very short time -- for a one-month period. This was at the very, very beginning. The swelling in her right knee joint did go down. And the minute she was withdrawn from the steroids the swelling came back. One of my experiences with a rheumatologist -- he had no experience in dealing with children; he dealt only with the elderly. The office was filled with maybe 30 elderly patients who had been waiting for an hour- and-a-half to two hours every week for their weekly injection of cortisone in their joints. This is a dangerous drug. It's used widely by many doctors. This rheumatologist, in particular, said, "well, maybe I'll try it in her knee. Well, mayke I'd ketter not. Well, all right, we'll give it a try." Then he decided that if I felt it was necessary, I should bring her back in. Of course, I didn't. I go on the recommendation of my pediatrician, with the large doses of aspirin. But this is a dangerous drug that is used very, very widely. ENGLEMAN: Mrs. Novak, I don't know if you were here earlier, when Mr. Sarlls presented the story of his daughter, Kim. NOVAK: Yes. ENGLEMAN: At that time we pointed out that we do have pediatricians who are working on our work groups, and whose recommendations will surely be directed towards the care of arthritis in children. NOVAK: Yes. Thank you. ENGLEMAN: Thank you very much, Mrs. Novak. We'll now call on Ms. Holms. TESTIMCNY OF BESSIE HOLMES, R.N. ACTIVE LAY PERSCN/PATIENT HOLMES: TIT am speaking as a concerned 70-year-old Registered Nurse who has been afflicted with gouty osteocarthritis since 1938. Through the years I have been involved with Public Health Nursing which has given me close contact with the care and rehabilitation of many with arthritis. I have lived in Arizona since 1958. Because of the availability of 1-76 Tucson, Arizona September 8-9, 1975 outstanding orthopedic surgeons in Tucson area, 1 have had extensive reconstruction of both feet and one year ago the first total shoulder orthoplasty with a Starmore replacement, and am still active in nursing. The National Arthritis Commission needs to be aware of the ever increasing large numbers of persons with arthritis who have been moving to Arizona seeking an area where they can live more confortably. In the past few years, more and more of these persons with crippling arthritis are finding Sierra Vista area in S.E. Arizona an even more comfortable area in which to live. We are all aware that arthritis is a costly disease to those affected and leaves them and their families needing assistance with many things: (1) proper nutrition; (2) adjustments and modifications made to living quarters so they can be more independant and able to better care for themselves; (3) continued supervised physical therapy -- Sierra Vista does have qualified therapists giving of their time freely but more financing is needed to enable all who need this program a chance to benefit from this supervision; (4) appliances and medication; (5) continued education as new information is made available through research; and (6) an ongoing counseling program is desperately needed, possibly someone who could coordinate the S.E. Arizona program and at the same time give the needed support and counselling, could be located in Sierra Vista. I would implore that the Commission make more funds available for continued research through which we are hopeful the promised breakthrough will be coming within a short time. I would also urge the Commission to increase their aid and concern directly to the southeast Arizona area. This area can serve several communities other than Sierra Vista: Benson, Bisbee, Safford, Douglas, Tombstone, Willcox, Huachuca City, Ft. Huachuca and other smaller communities. This entire area needs more clinic and consultation services by rheumatologists and orthopedic surgeons. Frequent trips to Tucson are tiring to cne with arthritis, and since many are unable to drive, transportation in these days of expensive gas, becomes prohibitive. In this expanding rural area, growing rapidly, it is so important that continuing education be made available to our local physicians, nurses, and other related personnel, and to those persons with arthritis. We must always educate against the vast quackery and misinformation getting to persons with arthritis. Any help your Commission can give in getting necessary legislation rolling and in action to get needed aid tc our southeast Arizona area will be deeply appreciated Ly those of us afflicted with arthritis and concerned. ANTHROP: Ms. Holmes, being an RN, do you think you could find it within your time and abilities to ccunsel some of these people? HOLMES: I have been trying to, and I probably will through our group; I can be of some help. 1-77 Tucson, Arizona September 8-9, 1975 I would like to ask this one question. I am concerned; is the nursing profession represented on this Commission? ENGLEMAN: Oh, yes; you're talking to one. HOLMES: I'm talking tc cne, okay. It didn't show up in the list, and we're so often left cff of Government Commissions that I wanted to make certain (inaudible). ENGLEMAN: No; we have several allied health professionals represented on our Commission and on our work groups. Thank you very much. HOLMES: I am giving a great deal of volunteer time (inaudible). ENGLEMAN: Ms. Martin. TESTIMCNY OF BILLIE MARTIN ACTIVE LAY PERSON/PATIENT MARTIN: When I first beciyne arthritic I was married to a serviceman. My civilian doctor, realizing what little knowledge military doctors had, and also realizing the comfort a warm and dry climate can be to an arthritic, was instrumental in getting us transferred to Davis-Monthan Air Force Base in Tucson. I was assigned to Dr. Rosiff, a Captain in the Air Force. After about a year of frustrating attempts to control the arthritic activity, he said that he didn't know what else to do, and would I consider seeing a Dr. Hill at Holbrook-Hill Clinic in the city. He explained it would be at my expense, not the Government's, but he felt Dr. Hill was the only one in this area qualified to help me. I saw Dr. Hill, and after proper evaluation he recommended right hip surgery, which was successful. My point is this: In my opinion, proper education for the military doctors is a MUST; that is, rroper diagnosis and proper treatment. 3 wished back in the early Sixties, and I still do, that Holbrook-Hill and DM could collaborate with such a goal in mind. What a beginning and what an achievement in our sunny Tucson. But regardless of the source, the military does need educating. Now -- something else to think about: Shortly after joining the Arthritis Foundation, two gentlemen came by from the Rehabilitation Department of the University of Arizona and introduced me to "Home Modifications." They suggested a platform be made for my recliner chair, and also bed leg extensions to raise both items. This made sitting and standing easier, and I could function Letter as a mother and homemaker. 1-78 Tucson, Arizona September 8-9, 1975 As the years progressed, so did the arthritis. And recently, the Arthritis Services replaced the old platforms with higher ones. Home modification is a MUST providing it fits the need and desire of the handicapped person. Lastly, this morning, I speak of a "MUST" closest to my heart: training classes for dogs to aid the handicapped. The dogs are called "handi-dogs." Josh, my dog, who is part German Shepherd and part question mark, my son and I participated in one last year. Bill was my helper. Josh was taught, among other things, to pick up items for me, as I cannot reach below my knees. As one example, when I undress at night, I wiggle my clothes to the floor and Josh picks them up for me on the command of nCarry." He's not all angel. He barks profusely when someone comes to the door, and acts silly, refusing to perform when he has an audience. But when I have a need, he's there; and together we face life's obstacles. I praise the Lord for four-legged friends. Thank you. ENGLEMAN: Thank you. Do you think that Josh might be available for reproduction purposes? MARTIN: I don't know. I think he's kind of stage frightened. But I love him. ENGLEMAN: Any questions from the panel? BRISSON: I just want to point out -- I was sent one -- and I shouldn't mention this because I don't know where to get it -- but it's like a great big scissors, and it's about that high, if you've seen them. I don't want to put your darling dog out cf work because he's far more enchanting. But you can get these -- these huge scissors, and you use it as such. I think there are little magnets on the ends and it will pick up things for you. MARTIN: The only thing is, they can't bring in the newspaper. BRISSON: That's for sure. VOICE: I think the appliance can tke bought through Accent on Living, the handicapped magazine that is circulating in this room. BRISSON: Is that correct, to say a magazine called Accent on Living? VOICE: Yes. BRISSON: And you can get it through that. Mine was given to me -- and I didn't find cut. VOICE: I think that they are also available in Sunset Magazine. 1-79 Tucson, Arizona September 8-9, 1975 BRISSON: In Sunset Magazine as well. They are very useful. ENGLEMAN: I will now call on Mrs. Richmond. TESTIMCNY OF JUNE RICHMOND PRESIDENT, ARTHRITIS SOCIAL CLUB ACTIVE LAY PERSON/PATIENT RICHMOND: Members of the Commission, ladies and gentlemen: My name is Mrs. June Richmond. I reside at 4002 East Fort ILaurel Road. I'm not now President of the Arthritis Social Club. I've had arthritis for 20 vyears, and 6 of those were spent in a wheelchair. These are some of the problems confronting persons handicapped by arthritis in this community: We are concerned about the numerous architectural barriers, particularly in public buildings; park and recreation areas, metropolitan and shopping areas, such as hard-to-open doors, doors and corridors too narrow for wheelchairs; telerhones, drinking fountains, and mailboxes too high to use; resteoom accommodations are non-existent; no ramps at curbs, and too few special parking facilities. These obstructions could ke eliminated by requiring that the specifications for all public projects include some consideration for persons with special needs. We suggest that architects and personnel on planning commissions and related agencies consult with those knowledgeable of the special needs of disakled persons. If IT may, I'd like to quote from an article that was in the Phoenix Republic, titled, "Handicapped Persons Fight For Designs:" iThroughout American history, minority groups have protested for privileges ranging from choosing a seat in the front of a bus to receiving ‘equal pay for equal work.' But members of one group just beginning to protest can't even get on a bus, and they're seldom given the chance to do equal work. They're barred from the use of most hotels, public restrooms, drinking fountains, phone booths, and elevators, to name only a few restricted areas -- according to John Miller, a fellow in the American Scciety of Interior Designers. Even if they were able to enter such public facilities, it would be impossible for them to leave. These impossible situations are common for handicapped persons, especially those in a wheelchair. Problems of the handicapped are often overlooked by designers of public facilities, but now that the handicapped are starting to protest for their rights, designers are listening. At the recent convention of more than 2,000 members of the ASID in Los Angeles, Miller addressed a seminar on barrier-free design. This involves design for both the handicapped and the elderly. 1-80 Tucson, Arizona September 8-9, 1975 Handicapped persons have expressed the feeling to ‘Miller that they have been treated as second-class citizens, reports Pat Bacon of the Morris Studio of Interior Design, Paradise Valley. Mrs. Bacon attended the seminar where Miller, a member of the President's Committee on Employment of the Handicapped, told the designers about 25 million handicapped Americans. He said that by 1980, 40 million Americans would be handicapped. Mrs. Bacon said that Miller stressed that most designs that are good for the handicapped are good for everyone." Another one of the problems is the total patient care in dealing with arthritis. More attention should be given to the entire family, as this affliction probably will be with them for the rest of their lives. There should be some type of psychological and family counseling service associated with doctors to fill the gap that now exists, and which is so detrimental to the well-being of a patient and her family relationship. When one feels that she is a non-productive member of society, whose needs are far greater than she is needed, who receives far more than she can ever give, who cannot possibly earn her own living, who wonders if she has the right to life, not tc mention the pursuit of happiness; such a one would have a very damaged and disakled self-image. A person with arthritis can be happy, well-adjusted individual, who wears her affliction with dignity, but she cannot do this without help, help from family, friends, and those especially trained in this area. I feel that the doctor should take the time tc have consultations with patient and family, going over their reports and X-rays, explaining in layman's language the results. This would lay the foundation for a better understanding of the disease and what lies ahead for the patient and family. To allow the patients an understanding would make it possible for faster rehabilitation and return to a more normal family life with less time spent in the doctor's office. I was fortunate that my doctor took the time for this type of consultation. I believe that it made a difference in my recovery and general cutloock on life. In closing, I'd like to quote from the Septemker issue of the Reader's Digest: "The patient must not depend on the doctor for courage, or expect to hitch a free ride on ancther man's strength. The doctor stands by with his skills, but they are limited. He shines a light into the dark tunnel, but the patient must walk it alone." I do not agree with the last part of the last sentence. If a doctor or counselor has done his job right, it's not necessarily true. I've made a few trips through that tunnel, but never alone. Thank you. Could I make a couple of comments, please? They are very short ones that are near to my heart. I know we have a lot of doctors on the panel; I would like to make this suggestion, and I think the people in the audience will back me up. 1-81 Tucson, Arizona September 8-9, 1975 I would appreciate it very much if you would raise some of your chairs in your waiting rcoms so we could get up and down without help. As you noticed, I had to have help. If you get those chairs elevated we can take care of ourselves. Another thing -- Dr. Boyer was on your panel here this afternoon. I took part in this training; and I think it was very good, but very short. I don't know whether they've discontinued it or not. But they had young doctors in training, and they visited us, a number of wus arthritics, in our homes. They saw how we had to live, how we had to adjust to our disease, the things we had to do, and things like that. And they were amazed at the way we had to do things, the way we had to get along. I think that's important. I think if they can get out and actually see what we have to do and the way we have to adjust and our family has to adjust, I think it would help them a lot. Thank you. ANTHROP: Dr. Engleman, may I add to the chairs, hard chairs. Those cushy chairs aren't good for arthritics. I was wondering, you know, you talked about your parking problem. RICHMOND: Yes, ma'am. ANTHROP: I went to ASU for a summer course and they gave me a "D", a sticker, which meant I cculd park anyplace, regardless of what the sign says. I just wonder if perhaps we could talk to the «city politicians about issuing "D's." RICHMOND: Well -- right, if we could do that. I know some of the areas are marked _ "Handicapped Parking." There are usually one, two, or three in your large parking areas in the shopping centers; and they're usually being used -- scmebody's in there. Now whether they're handicapped or not, I couldn't vouch for that. But in your big parking lots they do have some, but there's not enough. There's just really not enough for the numker of people we have here in Tucson. There was an article, I Lkelieve, in a Scottsdale paper, if I can quote it right, about a man that was in a wheelchair and he needed a ramp, He went to the politician, a councilwoman. She went to the Parks and Recreation and some of the technicians in the area; and they've come up with a metal ramp that could be, I understood, bolted to the curbing. This gentleman, with his electric wheelchair, I understand, could get up this ramp. Now that ramp cost, I think they said, around $50; and your concrete ramps run from $200 to $250, possibly $30C. Something like that, I think, could be very good, and wouldn't ke near as expensive. HAVERS: Any other questions from the members of the panel? MELICH: I just wanted to say that what this witness just said is something dear to my heart; I'm on the education committee, and I'm dealing specifically with patient, family, and community relations. I thought you might like to know that this is not going to be forgotten. 1-82 Tucson, Arizona September 8-9, 1975 RICHMOND: Well, good, because I enjoyed having them. I had four doctors there, young doctors, and it was very -- they really enjoyed it and so did I. HAVERS: Any other comments? I must say it makes a difference if a physician has had the disease. It's his attitude towards it. RICHMOND: It does. It really does. I've even recommended it to some of the doctors taking the treatments, tc see how they feel when they get through. HAVERS: Thank you very much. Could we then move on to Mrs. Griffin, Mrs. Wabick, Mrs. Ellsworth and Della Puckett. RICHMOND: While they're getting down here, may I add one more comment. I didn't know that Billie was going to bring up the handi-dog class today. Don't laugh about the dogs. Mine takes things from one person to another. It is an innovative program that we have started here in Tucson of training dogs of the disakled on a group basis. HAVERS: I think it's great. I've never heard of it. RICHMOND: To our knowledge, no cne else is doing it in the United States, and we do feel it has great potential. HAVERS: You can be sure that we will put that down. That's quite new, as far as I know. RICHMOND: I'd ke glad to send the Commission the information that we supply our people, if you'd like to... HAVERS: We would ke very pleased to get that. RICHMOND: All right, fine. HAVERS: We really would. RICHMOND: Thank you. HAVERS: Mrs. Griffin. TEST IMCNY CF ELIZABETH GRIFFIN VICE PRESIDENT, HI HOPES SWIM CLUB GRIFFIN: We of the Hi Hcpes Therapeutic Swim Club have these things as our goal: (1) A year round heated swimming pool, preferably with a roll back roof so that we can have draft free swimming in the middle of winter and yet have sun. Within this we envision physiotherapy tables for treatments, in the water; kars for practicing walking; steps around the edge for people to sit and exercise; a lift to 1-83 tucson, Arizona September 8-9, 1975 swing some people into the water; stairs of very shallow rise for others to get in by; a few rail holds around the edge for people with arm-bindage to grasp easily; a considerable expanse of shallow water running from 3 feet to 4 feet in depth, and at the "T" 40 or 50 feet of regular 6 to 10 feet deeper water for harder swimmers. (2) Individual living room, bedroom, bath, and kitchen units in a court where severely handicapped people can have someone nearby to attend when necessary, y=t allow them to use all abilities they have. In this court there would be a residence for a youngish caretaker couple to keep up the grounds and clean apartments and dc the extras. If this were a double court, the lower half could be rented out to make the project self supporting. (3) Offices and treatment rooms for a physiotherapist, either resident or otherwise, and perhaps later a specializing doctor's offices. (4) Not out of the city so that it would be possible for individuals to do their business and run errands. In fact, such a place almost exists, The Arizona Twilighter, 4330 N 5 Ave., Phoenix, Az. 85013. There is a vacant lot or two which could be incorporated into the pool extension. It is all level, no steps, but some of the units might have to be refrigerated with a heat pump. New construction of such quarters would run $7,000, to $10,000. A single unit building about size of a Safeway store, according to Channen Construction, would run akout $170,000, to $200,000, to build. We should like to see such a pilot project built in Phoenix. We, the Hi Hopes swim club are a band of arthritics and other related diseases, who realized the benefit of swimming and exercise in the water and formed a club 15 years ago to carry out that pleasant task. The companionship and mutual concern engendered by the association has done much to keep up the morale of people who would otherwise ke semi-shut-ins. By noting the great results of exercise and corrective surgery, such as Doctor DuPont does, displayed by others in the club, it encourages each individual to reach his or her potential. We have been blessed with a generous and interested physiotherapist, Dick Wasson, with whom we have arranged some treatments, when donations from large companies permit. The Fund we have built up from our daily fee or dues, we guard carefully and spend only the interest, but we should like to have regular work from February through November. At that time we usually stop swimming because of the after chill. However, Mr. Sam Langerman who so generously allows us to use his pool twice a week, heats it to 90 for us. Some results of this program: (1) A man not able to work, using two canes and a bottle of pills to get there, had surgery, swam, and now works full time. 1-84 Tucson, Arizona September 8-9, 1975 (2) A man who walked crabwise, and bent over, who never had a painfree night, was encouraged to have hip surgery, and now walks straight and normal, and is busy driving for the blind and other good works. (3) A woman with three teenage children, walking with two canes, all bent at the knees, had four operations, and now walks in like a model; and from not being able even to comb her hair, she now does the back stroke. She is the president this year of the State Committee for Learning Disakilities of Children, even with her bent and useless hands. (4) Three polios come regularly; one with double leg braces and no independent use of legs, but who swims for two full hours to keep arms and back muscles strong and use what leg muscles she has; one who has to be lifted in and out now, due to arthritis but swims well exercising all muscles; and one who walked for 20 years, but because of wear and tear of the muscles and now arthritis she uses a chair, which she manages herself. She dives in, and all three drive themselves to the twice weekly sessions and pick up others. (5) Two or three people have been unable to swim and are afraid of the water. Now they swim themselves and are teaching others to swim. (6) A spirit cf friendly concern and teasing humor has been built up, which lifts the morale of all concerned. It is one of the warmest, friendly clubs I have ever been a member of without the usual back-biting so often fcund in such groups. We have a program going on by ourselves without United Fund or Federal Funds, and have promise of a pool donated to us, but we need a little help as an initial investment so we can reach more of the afflicted and enlarge our membership. HAVERS: Mrs. Griffin, how many people are in the club? GRIFFIN: About 108. HAVERS: What would you really like the Commission to do? GRIFFIN: We would like very much to have a lump sum of money put down -- money -- money -- money. If we could have this type of a unit, I think it would not only kenefit the preople in the homes -- we now go into several of the southern -- south Phoenix homes and have brought people -- we have brought people who are forced to live in small trailer homes to the club. If there are people around them, we need -- for those who can't come -- some transportation. One man does this regularly, picks up five people. But that's not always possible. HAVERS: What you'd 1like to see, though -- this is a prototype of a (inaudible). 1-85 Tucson, Arizona September 8-9, 1975 GRIFFIN: A prototype for community development in almost any place. We'd like the Commission to consider this style. I shall hand these things in to you. HAVERS: Thank you. Any other questions of Mrs. Griffith? Thank you very much, Mrs. Griffith. GRIFFIN: Pardon me. May I say, in case I've missed some of the ladies -- there was a lady from Sierra Vista =-- and one of the recent ladies that spoke -- I'm not sure whether she's from Tucson or Phoenix =-- I should like to get in touch with both of them because we have a going program that would help all of them. The Sierra Vista people could, I'm sure, find support from the Lion's Club in such a swimming program in Sierra Vista. HAVERS: Very good. Thank you. GRIFFIN: Thank you very much. I'd also like to say there are several of us here from the Club, but our time is limited. HAVERS: Thank you. Mrs. Ellsworth. TESTIMCNY OF COROTHY EILSWORTH PATIENT ELLSWORTH: I'll be very trief. HAVERS: Fine. ELLSWORTH: Because I'm unprepared -- I sent my comments to Bethesda, Maryland -- and being called before the Commission kind of took me back. I'm Mrs. Dorothy Ellsworth, 5449 East 6th Street, here in Tucson. I was fortunate to find out about the counseling program that they have set up here for the arthritics with problems. As you can see, I'm nervous. I need help there in that field, like many arthritics; it's been stressed many times over today, family problems (inaudible). HAVERS: You're participating in the program here? EIISWORTH: Yes; I am. And I was just told recently that some funds, I believe locally, have come through that we can continue with this counseling program. We were fortunate for a while that one of the counselors was making her time available for some of us that still had to stay with it when the funds ran out -- I can't think back now -- probably somewhere in June. And anyone that was interested, of course, we paid for her services with whatever sources we could find. This is one of the points I'd like to stress -- the ccunseling program -- if we can just keep that going, because I find that for myself and many 1-86 Tucson, Arizona September 8-9, 1975 of us -- I have several friends here with me today -- I find this to be very advantageous. Another thing, I think if they can just find some funds available for research. This, too -- many people have kroached on the subject. So I just thank ycu for bringing me fcrward. I appreciate the things I have had made available to me. And -- oh, if I can get back to research. I've a problem. I just discovered =-- or the doctors discovered, along with my arthritis they found out I had epilepsy. They have diagnosed it as vasculitis, which is another thing that I think many physicians, especially the non-rheumatologists, do not, a lot of times, discover in their patients. I was very fortunate, with Dr. Fosdick and a neurosurgeon, to have this diagnosed for me with my five-week stay in the local hospital here. Thank you again. Like I say, if funds can just keep dribbling in, at least, and keep us going. HAVERS: Very good. I take it your vasculitis is part of your rheumatic disease? ‘ EILSWORTH: Yes, it is. HAVERS: One of the things that has impressed me today has been the testimony with regard to the counseling. Is it just you or your family also? Is the total family involved? ELLSWORTH: It's just myself. My husband is a stubborn man. But I feel that if I can just keer going with this counseling, I know it'll be a big boom for me. HAVERS: Very good. Thank you very much, Mrs. Ellsworth. JENERICK: Ma'am. I can appreciate the courage that led you up to talk to us. I think it means that much more tc me, your comments in support of this service. Thank you very much for doing what you did. TESTIMONY CF ALICE SPRCGE PATIENT SPROGE: I have had arthritis fcr four years, after leading a very athletic type of lifestyle. I taught swimming for 30 years, hiked, climbed mountains, taught children beginning kallet, and square danced several nights a week for a number of years. Since becoming arthritic, I have had to give up these activities. Now I have to go to physical therapy at Tucson Medical Center several times a week. I am in a great deal of pain each morning when I wake up. I ache so much it is hard for me to get ur on my feet and walk. This gain has been in my hips for some time, and now is in my knees, too. I do not 1-87 Tucson, Arizona September 8-9, 1975 qualify for free therapy at the clinic at Tucson Medical Center, as some of my friends do, but hope that Medicare will help out. One thing that has helped my morale has been the counseling sessions which I have attended, funded by the Arthritis Foundation. As I had never been around anyone who had arthritis, it has hit me hard. These counseling sessions have enabled me to meet others with similar problems. In talking with these other reople and our counselor, I feel I am not alone with this problem. I live alone and get depressed at times, particularly when I have to go up and downstairs. My apartment is located on the second floor. These sessions stopped for a while, but I hope they will be resumed in the near future. If funds are availakle to help with this service, I for one, will be eternally grateful. HAVERS: Thank you very much, Ms. Sproge. Any questions anyone would like to ask Ms. Sgroge? Mrs. Putnam. TESTIMONY CF EVELYN R. FUTNAM PATIENT PUTNAM: I have had arthritis almost all of my adult life, that is for 37 years. I have progressive rheumatoid in its most damaging form. I have been on ccrtisone continually for 23 years. It has helped me to have greater strength, less pain and more mobility, and many useful years. I began to use a wheelchair five years ago, and, in spite of severe disability, remain useful and active. Arthritis is a devastating disease that places financial and emotional burdens on the patient and their families. Intensive and proper treatment can be of great value to help people to retain or regain their mobility. Physical therapy is the most neglected area of treatment. Intensive and persistent forms of physical therapy can do much to regain use of joints and muscles, alleviate pain, and retain strength. In 1968, in the San Francisco Bay Area, there was only one so-called Hubbard tank, and it had been purchased with Easter seals. I can testify to the value of under-water exercises. Ten years ago, after a rather sudden and paralyzing after attack of arthritis, I could not use my hands or stand or walk. Six weeks of daily exercising under water and other forms of therapy, I regained my mobility, and I have always felt that exercising under water was the greatest factor in my recovery. Physical therapy often invclves problems of distance and transportation. I have only had it in a hospital and traction at a therapist working with an orthopedist. 1-88 Tucson, Arizona September 8-9, 1975 Counseling would also be of value to arthritis patients and their families to help them to cope with the pain, disability, and expense. It could help maintain the family unit through what is not just an illness but a way of life. ENGLEMAN: Thank you. Mr. Shields, do you want to make some comments? We have a physical therapy expert on our Commission. SHIELDS: I would only say that I agree with much of your comments; and I'll try to do my very best to represent your point of view to the commission. PUTNAM: Thank you. ENGLEMAN: May we now ask Helen Revak, Ms. Edith Lee, Clarence Long, and Evelyn Daviduke to step forward. TESTIMONY CF EVA MAE CAVIDUKE LAY PERSON DAVIDUKE: I am Eva Mae Daviduke. (inaudible) with some arthritis of the throat, so I've asked my friend to read my speech; and I'll be very happy to answer questions. ENGLEMAN: Oh, fine. DAVIDUKE: This gives me a bit of relaxation -- she mentioned Libby therapy, the last speaker, and mentioned water therapy; and this is on that subject. FRIEND OF MS. DAVIDUKE: Ladies and gentlemen of the National Arthritis commission: "The libbey Therapy and Arizona Weather A Splendid Prescription for Arthritis Sufferers The Libbey Memorial Physical Medicine Center at Hot Springs National Park in Arkansas is like a glorified spa under the supervision of a licensed therapist. It is not glorified through its appearance or its sturdy well-worn appointments. It's not on the famous Bath House Road but up the hill on an unpretentious side street. It is glorified by the quality of the prescriptions, written by Hot Springs physicians, and by the thoughtful manner in which the staff of therapists carry out these prescriptions. It's in an old building which many tourists may easily have overlooked. Pretend, if you will, that you and I are now entering the treatment room. We paid only $9 (the price is regulated by the U.S. Govt.), deposited our valuables in locked boxes, changed into swim suits and we are ready to climb on tables where we get the steam packs our Hot Springs doctor ordered for each of us. 1-89 Tucson, Arizona September 8-9, 1975 Then we go to the hot pool where a dozen or more stations are equipped with whirlpool apparatus which can ke adjusted to our needs. There an attendant has already copied on his check sheet the number of minutes we are to remain in the pool and enjoy the swirling waters, according to the doctor's orders. I'm the delicate sort who has had very little physical work in her life. I'll be told to leave in seven minutes. You've done a great deal of heavy housework in your life and enjoyed many outdoor sports. You'll be given, more than likely, 12 minutes in the hot pool (the temperature a little over 100 degrees). It's so wonderfully relaxing in the special Hot Springs mineral water that neither one of us wishes to leave. But out we go when the attendant indicates that time is up. We walk to the cooling-off pool where the temperature is that of comfortable bath water. Here the water is quiet and as we sit on the slanting bottom of the pool or on a rust-proof seat in the water, we wait our turn for one of the 8 or 10 tables where operators are treating those patients whc preceded us. Every now and then an operator goes to a small filing box at the edge of the pool to refer to the patient's card for the instructions of the physician. Our turns, yours and mine, come and we climb onto a table where all but our heads are submerged in water. There in 15 cr 20 minutes the operator gives attention to the tense muscles around the joints. I am given instructions in resisting pressure made by the operator. I press against her hand or arm as I am instructed. From the small finger joints she goes to the wrist, the elbow, and shoulder. Then the legs are treated in the same manner, each toe getting its share of attention. We watch with c¢cncern and compassion as a quite helpless patient is strapped to a seat and hoisted over the poolside into the hot pool. Then later some of the patients assist the operators to get her correctly placed on the table in the cooling-off rocl. The patient is made to feel that everyone is rushing to help her. The operator finishes my treatment with some special massage to my neck. She gives ycu some special stretching for your legs which have been bothering you. We can walk about the pool holding to long parallel bars for support. We can do our assigned exercises in the water and continue the exchange of stories with other patients and the operators. After each treatment we feel so exhilarated and grateful that in this medical spa we can have tense muscles relaxed so that more than likely you and I won't have to make a return trip for a year or two. Oh yes, as we go to our individual dressing room, we notice a patient with his arm in a parrafin rath. We also see diathermy and ultra-sound machines and pulleys for special stretching exercises. The most popular prescriptions of the physicians call for steam packs and a whirlpool in the hot water pool to ke followed by the resistive exercises carried on by the operator with the cooperation of the patient. 1-90 Tucson, Arizona September 8-9, 1975 I was told that during one day the Center took care of 97 patients between 8 and 1 o'clock. The afternoon is given over to emptying the pool and cleaning it in preparation for the next day's activities. During the afternoon there are also classes for those being trained in the Libbey therapy by its director, Fred Farmere. Some 10 years ago I started a search for the Libbey system in our area. Fred Farmere did nct know of any place outside of Hot Springs to which his therapists had migrated. I searched from Calistoga, in Northern California, to San Diego, through Nevada and Arizona for such a treatment center with Libbey therary. It has been my great desire in these past 10 years to stimulate someone or some group to bring the Libbey system to Arizona. A list of the physicians and businessmen with whom I've visited on the subject and the institutions I've hoped would investigate the Libbey therapy is very long. They have all given approval but no practical suggestions. Hot Springs has a real drawback for arthritic sufferers - its weather with its high humidity. In certain seasons the rains continue for days. If the Center does as much good as I kelieve it does, what could we not do in our comfortable dry weather which, in itself, seems to grant some freedom from pain for those afflicted with arthritis. I must say that everyone approached on this project has seemed to approve it; but as, in most projects, getting the Libbey therapy to Arizona needs toth money and organization. Both into Tucson and into Phoenix, the tourists come in droves in the cooler months. Many are sufferers in different degrees from the pains of arthritis. We see them limping into our cafeterias or being wheeled in by a dedicated relative. The glorified spa can make available to them the comfort of joints reiieved of much of their pain and the joy of being able to move about more naturally. At home again they will yearn to come back another year for the comkination of Arizona's sunny weather and the Libbey therapy. I'd like to see the Libbey therapy more widely advertised by the U.S. Government and more therapists trained there and sent out to other states. These therapists could be helpful in alleviating some of the suffering from tense muscles. The patients would then be able to use their joints more normally and would avoid the crippling results from the wrong use of them. Today you and I have finished our first visit to the Center. We shall rest on our motel or hotel beds and wish that we might share with thousands of others the benefits of such thoughtful care. The features of the Libbey Center which I do not find in Arizona are the following: (1) The numerous whirlpool stations in the hot pool in which many patients are accommodated at the same time. (This feature cuts costs and permits treatment without an advance appointment 1-91 Tucson, Arizona September 8-9, 1975 whereas the Hukbard tanks in our hospitals as so tightly scheduled that many are denied the needed treatment.) (2) The use of stainless steel tables under water in the cooling-off pool. (3) The specific resistive exercises developed by Dr. Libbey. (4) The benefits gained during the cooling-off period in the atmosphere of "subdued gaiety". During these last few days preceding this hearing, something exciting has happened. It appears that the 16-year-old organization of handicapped individuals, known as the Hi Hopes Club of Phoenix, may be one successful way of bringing Libbey therapy to Arizona." ENGLEMAN: Thank vou. Is there anything that ycu would like to savy, Ms. Daviduke? DAVIDUKE: I just want to be sure that the Commission is aware of this therapy created by a certain Dr. Libby at Hot Springs, Arkansas. This is not in the famous Bath House Row, but everyone in Hot Springs is aware of i Prescriptions are all written by physicians. Many people go once a year in order to get relief that lasts months (inauditle). ENGLEMAN: Mr. Shields, do you have any comment on hydrotherapy? SHIELDS: Well, I think, certainly, that's one of the things that is most helpful, in terms of hot water and in a media where people can move. One of the biggest problems we have, of course, is gravity. It's so difficult to move against gravity. And if we could maybe all move to the moon where we only weighed a sixteenth, then it would be easier for us all to get around. But that, of course -- water is one of the medias. One of the things that -- I think that the problem, of course, is how do you make all those pools available to all those people that really need them? That's a very sericus problem. It's interesting that we have pools available, but all the pools that are available in most of our communities are geared for the normal and for the children; it's very difficult and awkward for patients to go to those types of pools -- to swim and to carry on that activity in. So I think that it's certainly something that we will be trying to look at, and I'm sure we'll be encouraging some type of pilot project to look at how can we have pools made availakle in communities so that people -- it's easier for people to get there, bcth physically as well as psychologically, so they can use them when they get there. DAVIDUKE: The beauty of the Likbey system is that they give the whirlpool bath to 10, 12, or 20 people at one time, and this cuts cost. It is still under the supervision of one of the therapists. 1-92 Tucson, Arizona September 8-9, 1975 SHIELDS: One of the things that we are concerned with is trying to make sure that we are teaching patients how to be independent -- on their own -- and not dependent. We don't want to try to have such elaborate equipment in our facilities that addicts patients, so that they have to come to our places to receive treatment. We would, hopefully, try to make this treatment available so the patient himself can become more independent and not need therarists as often. ENGLEMAN: Thank you. FRIEND OF MS. LCAVILCUKE: Dr. Engleman, could I speak to Mr. Shields for just a minute about an aid for a public pool. We had a gentleman who built us stairs, like a gangway, which are -- it's very slow risers, and we roll it into the pool everyday to allow these people to get in and out, and that can be done to a puklic pool. But the temperature of 90 degrees, which makes it comfortable for arthritics, cannot really be done in a public pool. ENGLEMAN: Is Mrs. Ellsworth here? SHOOT: I'm not Mrs. Ellsworth. Could I make a personal suggestion. It is something that has not been brought up at all, and since this is a Government Commission (inaudible). I mainly want you to get the idea -- I have found, over the years with my mother, something I think will be valuable to many people, particularly in the middle income group that is restricted at this point, and this would apply to anyone that is disabled. If the Internal Revenue would recognize the need for household help, other than registered nursing or actual medical care, in terms of imprcving the quality of anyone that is disabled -- and that this should be income tax deductible. TI think there should be a much broader range; and I would like to see this mentioned. ENGLEMAN: All right. Thank you very much. I didn't get your name. SHOOT: Joyce Shoot. ENGLEMAN: Good. Here in Tucson? SHOOT: No; in Scottsdale. ENGLEMAN: Okay. ENGLEMAN: Clarence Long, I believe, is next. 1-93 Tucson, Arizona September 8-9, 1975 TESTIMONY OF CLARENCE EDSEL LONG PATIENT IONG: I am C. E. Long. I live here in Tucson, Arizona -- been out here 20 years. I live at 4030 North Freemont with my wife; and we have two wonderful daughters. The faith and love that they have shown me in the past 15 years has sustained me. For the past 15 years I have had severe arthritis. The past 12 years have been spent in this wheelchair. If I let my mind dwell on the income I've lost and all the things I had to give up during that time, it would be unkearable. But basically, I don't thing that we arthritics are any different from anyone else. If we look around us today, everybody has their problems; and we have sympathy for other people, it's a source of strength. But we can't afford to have sympathy for ourselves. Here are some of the things that I do each day that have helped me: Each night and morning I count my blessings. They have always outweighed my infirmities. I spend one hour a day in periods of 15 minutes exercising every joint that will move. I spend the same amount of time in getting each muscle to relax. I do everything possible to keep my body and clothes clean at all times. This is the cheapest medicine there is. I try to keep a clean mind at all times, to screen out the trash in what I see, what I hear, and what I think. This is good for the body as well as the soul. I think we should all have a motto to live by, and as long as possible, I intend for mine to be: "I can do." If Congress really knew how many people had this disease, I believe they would do something about it. I think it's time we asked to be counted. If we could join together in this effort, perhaps it would help others in the future, and our suffering would not have been in vain. ENGLEMAN: Thank you very much. Marjory Herring. TESTIMONY OF MARJORY HERRING ARIZONA OCCUPATIONAL THERAPY ASSCCIATION HERRING: I'm from the Arizona Occupational Therapy Association. The material that I'm presenting was written by Joan Fish. Her address is 5307 East Douglass, Tucson, Arizona. My address is 3053 West Anklym Road. The rationale for involvement of qualified occupational therapists in the area program is the topic that we're addressing. Occupational therapy has traditionally included in its body of knowledge the study of collagen diseases. The proper use of purposeful 1-94 Tucson, Arizona September 8-9, 1975 activity to allay and/or prevent disabilities of persons with arthritic disease has been a common role of occupational therapists throughout the world. The fabrication of splints, adaptive devices, and environmental modifications are all areas of occupaticnal therapists! expertise. Work simplification and joint preservation methods are offered in relation to the arthritic client's home, work, school, and play activities by the occupational therapist. In addition, the occupational therapist is particularly suited to give functional treatment for hand conditions which involve surgical intervention. It is felt that the occupational therapist, together with other professionally qualified individuals, should bLe involved in Area 9 evaluations, goal-setting, and treatment planning for area citizens who have arthritis and related diseases. It is only through real involvement of all resources that the intention and purpose of the National Arthritis Act can ke realized for all individuals who qualify for assistance. ENGLEMAN: Thank you. It's obvious, from the testimony that we've heard all day, that the role of the allied health person, including the occupational therapist, is one that just must not be minimized, and must be on a par with the physician and others who are responsible for the patient's care. HAVERS: Where do you work? HERRING: I'm in private practice. I'm associated with Saint Joseph's Hospital as a consultant. We're particularly concerned that we have occupational therapists on committees where decision making is going on within the Area 9. HAVERS: Are you or your group aware of the involvement of the Occupational Therapy Association with the Foundation and their allied health area? HERRING: Are you speaking nationally? HAVERS: Yes. HERRING: Yes; thank you. VOICE: I want to say how wonderful the attention that the Commission has given to the testimony today. Perhaps I'm interested in this because my father was a physician and my mother was what they called a [mechani- therapist?], and did a lot of water therapy. Though I taught French most of my life and wore out my vocal cords, I am very much and very vitally interested in what you are doing. ENGLEMAN: Thank you very much. We'll ask the Reverend Paul Gandel if he is here. 1-95 Tucson, Arizona September 8-9, 1975 TESTIMONY OF REVEREND PAUL GANDEL HUSBAND OF PFATIENT REVEREND GANDEL: I'm Reverend Douglas Paul Gandel. We live at 1360 Avenita, Tucson, Arizona. I am very surprised, possibly shocked a little bit, that we choose even here a disease which isn't really a joint, a one-joint disease. The little toe can cause as much trouble as the head or the headache. I'm surprised that there are no clergymen here to take care of their parishes, their churches, their organizations -- where they have ramps to take in their patients or those who come to church. I wish they were here because what I heard mostly was, "If we only got more money. If we only got..." It was mentioned the word a million. One thing comes to my mind: A doctor led a group of youngsters from school who intended to go to medical school. He showed them different instruments. He showed them a dialysis machine, and then he took and showed different instruments which are used for the arthritic; the different joints, the metallic discoveries, and so on. He said, "Guess where TI got this from?" And the answer was that no one knew. So he said, "I stole it from the cadavers and I put it into human beings who can't afford to pay me as much as they would." Of course, no one asked the question, "Do you tell the patient when you put in this part of the body that you give it to him maybe cheaper because it comes from a cadaver?" I asked myself -- because one of those students happened to be my son, who is now finishing in Rush Medical School in Chicago, and my daughter, who is now in the fourth year in psychiatry after finishing medical school in Northwestern University. I had a great interest in medicine, and I still have. But I want to see that a group of your caliber, gentlemen, that are not confronted with the question only, "How much money can we give you?" but, "How much quality can we bring to you?" I wish somebody would have asked -- what we mostly need is another Salk, a man who took a disease and nullified it; and I refer to polio, of course. We need doctors that would deal not with one part of a body, but the whole body. Polio cripples the whole ody; arthritis cripples the whole body. It isn't the money, it's the dedication. We talk about counseling. The doctor has 15 minutes on his book to talk to a patient. And while he talks to one patient, he has to write out the report to the Government for the Medicare from the fcrmer patient. I'm an observer; I've seen it that kad where negligence was so enormous. Last week there was a program, a two-hour program, in which they said that medicine has become a department store business; a department store business will sell anything. The doctor showed us the different items that are sold only for false hope because relief is needed for the suffering. 1-96 Tucson, Arizona September 8-9, 1975 Gentlemen, why not tell the whole group -- I wish there were more of them here. Why not tell the whole group, "Take an aspirin, or two aspirins every four hcurs." Thus far we hear the word that we have found nothing yet except an aspirin. Save yourself the trouble of going to the doctor for another visit because he cannot give you anything else. If he had discovered a vaccine, the world would know it. Mrs. Gandel had just to go out now. She couldn't take it anymore, the sitting. Last week TI nearly was shocked, and I want you to understand that it is tragic. She bent down, got her a pain in the back, and the strange part was she tried to get out of bed and rolled down, trying then to get up. And I tried to help her. And when I tried to help her, she screamed. I said, "Somebody will think that I hurt you, that I hit you." I've never put my hand on my children even; and Thank God they turned out to be two willing human keings to help those who are in need, in the medical field. What we honestly need is counseling. You have to ask the clergymen to do that. No one, no paid professional in the form of a young man who goes to school learns a few sentences and comes and says, "Well, take it easy. That's all we can do." Tell the clergy; and you have the authority to tell them. Of course, the Government is not supposed to mix in our religion. But who said not? Who established that? Tell the clergy that we need the help, the special help for them. I am shocked that I am here, the only one. And only it happened to me that I happened to have the experience with Mrs. Gandel having this pain. When we get the shock we know it is serious. You are here. We might hear of a successful outcome of whatever we heard here. But will it help; will it help? Research; yes. Finding an answer; yes. But if there isn't any, be truthful. Tell it to the people. We can only answer you with aspirin. If aspirin is too harsh on you because you are bleeding, then take Tylenol. If Tylenol is not good enough, they came out with Datril. Datril -- the only difference being that it's not an aspirin, but it is chearer; you get a dollar refund from the Walgreens. Gentlemen, if that be the case -- I don't want to keep you. I know it took the grace of you to do all this. But if there is no simple answer, and there is none, give us an answer so that when I say to Mrs. Gandel or say to somebody, whoever I meet, "Take two aspirins. If you can't stand aspirin, Tylenol will do. You don't have to go and carry yourself and suffer the consequences of sitting in a waiting room, and so on." Of course, somebody said the doctors do it for the money. I wouldn't want to reduce a doctor's dignity to that level. So, gentlemen, I don't say go and give us money. I would say give us service by telling those who can do something about it to do something about it. Thank you very much. 1-97 Tucson, Arizona September 8-9, 1975 ENGLEMAN: Thank you, Reverend. ANTHROP: I would like to say that I did go to the clergy, but they really didn't understand what I was wanting. It took a combination of a trained counselor whc, too, had rheumatoid arthritis. TI assure you that the clergy has their place, and it's comforting to know they are there. But a trained counselor who knows the ramifications of the disease can truly tack up the clergy, or vice-versa. GANDEL: Oh, by all means, my lady, by all means. If I have to help a patient, 1lift him up, and because I can do it, I would ke glad to do it. But, you see, what I'm talking about is that even the clergy has rejected certain things, and the clergyman sends now his patients to the psychiatrist, and he brags about it; and I believe that was our field to do at least. Once upon a time -- I am 45 years in the mission field. Once upon a time, this was our department, to solve problems which were not physical. Now we have both -- we send them to the different other departments, but we don't do it. The best proof is you didn't see many. We have here quite a big number. You open the yellow pages, gentlemen. Now, maybe I'm barking up the wrong tree. TI know that. But, among other things, take the spiritual factor --we need spiritual help; we need God's help. I'm not trying to preach. We need that, what this gentleman before us said, when he read the fact of meditation. We need these things. But if you don't have a medicine for me, if you don't have a prescription for me, please don't give me a prescription, give me an aspirin. I can buy it for 11 cents per 100 when they have a sale. ENGLEMAN: Dr. Jenerick would like to make a comment. JENERICK: I'm afraid that this little story I was going to tell you has lost its point by one of your last comments, and that was that it's amazing how things tend to work themselves out. I recall reading in the newspaper recently that a number of bartenders in some large city were taken in and trained to become mental health counselors. I was going to suggest that maybe there's -- maybe we could do something with bartenders. We certainly should find some way to work with the clergy. GANDEL: Well, it's tragic; isn't it? JENERICK: Yes; it is. GANDEL: The truth is it is tragic. ENGLEMAN: Reverend, I want you to know that we are grateful to you for your comments. I think it is regrettable that you are the only man of the cloth who happens to be here. I think in the future we will make a deliberate effort to invite members of the clergy and others of the church and temples, and so forth. 1-98 Tucson, Arizona September 8-9, 1975 GANDEL: If I may be of service, I'll do my little bit of duty. When you go out to San Diego -- I was in San Diego; there's a-dime-a-dozen churches in every corner you go -- and the street preachers -- those which they call Youth for Jesus -- and they call them different -- freaks -- there are clergymen around there, many. If you can possibly interest those who are putting up -- the Arthritis Foundation, organizations, to invite the clergy or tell them "We expect you to come there," maybe it will help. ENGLEMAN: Thank you, Reverend. I think with those comments, we will terminate our proceedings, and, again, thank you very much for having joined us here this afternoon. 1-99 SUBMITTED STATEMENTS MRS. RITA ALMATCA August 20, 1975 Tucson, Arizona There are no words I can use strong enough to express my appreciation for what the Arthritis Foundation has done for us. My mother is totally crippled by arthritis and is in a wheelchair. I have it very bad on my hands, spine, shoulders, and neck. It had been quite an effort to care for her, until your people came in and fixed us a ramp on the back of the house and front @f it. They put cement on the sidewalk and changed faucets on the wash basin in the bathroom. They put bars on the toilet bowl and one on the bathtub. So now taking care of mother is so much easier for me, thanks to your wonderful Foundation. May God help you to help others as you have helped us. God bless you in your work. MILDRED L. BAILEY August 18, 1975 Pima, Arizona I came to Tucson from Maine in 1970 and later contacted the southwest chapter of the Arthritis Foundation there. I have had this disease since age 20 and was 54 when the Foundation accepted me for a patient. My treatment has consisted mainly of going to a heated pool where there is also work done by a therapist and taking daily dosages of aspirin. This has helped me a great deal and seemed to keep my condition from worsening. We recently moved from Tucson, but our daughter still lives there and the Foundation sends me to the «clinic doctor whenever I visit there. Since my huskand gets only a small Social Security check the past year, these treatments are one of the bright spots in our lives. Many people are in much worse condition than I am and have had helpful operations on their limbs. This is a wonderful thing the Foundation is trying to do. We hope it can continue here and elsewhere. NELLIE BYALL August 19, 1975 Tucson, Arizona I will not be able to attend the National Arthritis Commission hearing on Tuesday, September 9, 1975, but I do want to give you my, testimony of the Arthritis Foundation and the good it does in our community. I have been helped greatly. In fact, my osteo and rheumatoid arthritis has been arrested for a few years. Through the Arthritis Foundation I was enabled to go through rehabilitation, was taken off disability Social Security, have been able to maintain myself and a 1-100 Tucson, Arizona September 8-9, 1975 (rented) home, am able to help other pecple at times, and am also able to indulge in gainful employment for several years. I am now going into age 65 at end of September 1975, am retiring, but will do some odd jobs. I want to work as long as possible. Through the Arthritis Foundation and the love and help of the Good Lord, I have been helped and kenefitted beyond explanation. EVA CANALES My name is Eva Canales, and I am writing you to submit my statement of the remarks I wish to present to the Commission on Tuesday, September 9, 1975. I want them to know how much I have appreciated the services the County has provided me in the past and present. I am able to get physical therapy from Handmaker's Nursing Home and the Senior Health Improvement Program due to the county funds. They have always given me good treatment and service at the County Hospital, too. My doctors, Dr. Warren Benson and Dr. Storm have made sure I receive such fine service. Without the needed funds, I doubt if I'll be akle to receive this service in the future, which I sincerely need and appreciate. If I can, I would like to present my case to the Commission. Since I have received such fine treatment, my condition has improved considerably and hasn't had any chance to become worse. EDNA D. CLARK August 16, 1975 Page, Arizona I have been arthritic over 20 years. I have osteo and rheumatoid arthritis and did have gout. In order to do for myself and be more independent I have learned some ways of moving that amaze doctors, nurses, and therapists. I call it my scooter or snake hip technique. My licensed physical therapist and I are working to write a booklet to aid arthritics and other handicapped people. When we can get it typed and xeroxed, would you read it and perhaps guide us in the printing of it. We are not out to make money, we want to help others. Would you bring this up at the Tucson meeting and ask for a fund to publish it? It might be a new approach to helping handicapped. LAURA C. CUNNINGHAM August 22, 1975 Phoenix, Arizona I have rheumatoid arthritis. I have had it for 28 1/2 years. I am a white female, 53 years old. My mother had arthritis and my twin sister had arthritis until her death at age 48. 1-101 Tucson, Arizona September 8-9, 1975 I do not consider myself as the usual arthritis case and this is the reason I ask that my testimony be included in your records. My husband was a career officer with the USAF until his retirement. Thus, I lived in many different places, have seen many doctors, experienced the effects of varied living conditions, and have been forced to cope with the disease under favorable and unfavorable conditions. Because I was never able to stay under the care of one doctor for any prolonged length of time, I know how many different ways an arthritic is treated by doctors. It runs from one quick look at a swollen hand and the question, "Have you tried aspirin?" to an all day physical examination and two hours of plain talk from a doctor well qualified to give it. (You appreciate and listen to this one because they are few and far between.) You see doctors who hand out steroids like popcorn and never mention the side effects, and you meet the doctor who says, "We will try an experimental drug," and you end up as one more test case, useful to him only as a statistic for a drug company. Then there are the doctors who are so concerned they become personal friends, and vou see their frustration at not being able to do more for you. I've lived in hot, dry climates, hot humid climates, and cold damp climates. If you can heat a house in the winter and keep it comfortable in the summer heat, it really doesn't matter much where it is located. What you do need is household help when the attacks are most active. When you enter the stage where the disease really starts to cripple, if you are lucky there is a hospital near with a good therapy department. You learn about parafin, hot packs, and hubbard tanks. The heating pad becomes a permanent partner and you wonder why you never bought stock in the company. You use a wheelchair part time, and keep looking for ways to stay independent and not kteccme a burden. Now we come to the heart of it all. There is no one place where you can go to get all the information, see the best doctors, and have the benefits of a large research facility. Unlike a cancer patient, we have no research programs to compare with like M. D. Anderson in Houston, Texas. To my knowledge, arthritis does not have programs funded and grants available so that doctors can make the progress made in open heart surgery. Our information comes in fragments, gathered from an article here, a doctor there, and a therapist someplace else. We need money for research, for public awareness programs, and for large arthritis centers. If it is true, as TI have recently read, that there are only 1,000 arthritis specialists in the United States and 29 of those are located in Arizona, then not only do we need financial help from our Government, we need help from every thinking person in this land. You or your child could be the next victim of this terrible disease. 1-102 Tucson, Arizona September 8-9, 1975 JOHN EICHENANER August 16, 1975 Phoenix, Arizona Dr. Jensen, in his book, Overcoming Arthritis, says eating less cooked food and more raw food helps overcome arthritis. Dr. Paavo Airola's book, There Is a Cure for Arthritis, is also very helpful. Simple remedies are often more effective and less expensive than the more exotic ones from chemical laboratories. Please send any summary of findings from the hearing in Tucson. FRANK S. GARCHER August 26, 1975 Tucson, Arizona I, Frank Garcher, came to Tucson in March 1963. I was in pain for two years. The climate helped but I needed medical help. I lost weight and was beginning to cripple. I started with Dr. Stevens at the Holbrook Clinic. Then after a year with his help, Dr. Fosdick tcok over. He in turn put me on Cytoxan (four a day). Now I play ball, bowl, golf, and enjoy life. I don't have any crippling of hands or legs. My thanks to the Arthritis Foundation for the help I needed. We need more grants to help others as I was helped. My daughter is 43 years old now; she has it also. We can't wait until she gets here and gets help. VIRGINIA GILBERT August 25, 1975 Tucson, Arizona I have had diagnosed rheumatoid arthritis affecting my whole body for 27 years and before. This has necessitated a change of climate, 1living pattern, and work and school situation for our entire family. We moved to Tucson in November of 1961. In Tucson I found the right wedical help, understanding, and encouragement for my problem of arthritis. With a good medical and therapy program I again could gradually handle the activities of daily living for myself and ry family. I am still under treatment. Previously, in other clinics and hospitals in another state, only the statement from doctors and others, "You have arthritis, we can't help you, go home and live with it." I am now the secretary for the Arthritis Foundation clinic here. It is my observation each clinic day (and even as I go shopping) that there is a great and urgent need here for more surgery, medication, home modification, counseling, and total care for the patient with arthritis and for financial assistance for so many who go without daily. 1-103 Tucson, Arizona September 8-9, 1975 ANNE S. HUGHES August 15, 1975 Tucson, Arizona I am one of thousands of rheumatoid arthritis victims now living in Tucson. For more than two years I have been a recipient of services provided by the southwest chapter of the Arthritis Foundation. These essentially consist of bimonthly consultations with a noted local rheumatologist, gold shots, urine tests, and occasional blood tests. However, there are other kinds of help available that I do not get. I have eye problems related to arthritis necessitating additional medical care. I have serious problems finding and being fitted with shoes; I often find I overexercise in an attempt to help myself, for I exercise unsupervised. A large portion of my income is derived from Social Security disability, and as you may well know, I am not allowed to earn even one penny, though, despite my physical handicaps, I am quite capable of writing or editing manuscripts or, indeed, typing those of others. Before the onset of my critical physical condition I worked on magazines, newsletters, and newspapers in and around D.C. for 10 years. My income, obviously, is limited, just as my arthritic problems are being met only limitedly. Because of scanty funding, I and my fellow victims are being partially aided--it could be characterized as a "holding pattern." We would 1like a chance to struggle toward more normal living, something we can't do, because the facilities are simply not available. But the skills are here and the methods are known. DIANNE KNOBLOCK August 26, 1975 Tucson, Arizona Thirty-nine years ago, at the age of six, I became an arthritic victim. I have bad many "hang-ups" related to my crippled condition. Until this year, I have had to deal with the problems by myself. Because of Dr. Peter Attarian's group counseling for arthritics, I have overcome my self-consciousness for using a cane or wheelchair. Now I will not fall as often and thus be more independent. Tucson has the best climate for an arthritic condition that I have found. In my opinion, it should be declared the Arthritic Center of the Nation. Why has Medicare stopped paying for hydrotherapy? That is the one thing that helps the most to keep my joints moving. There should be funds available to help the arthritic where Medicare stops. 1-104 Tucson, Arizona September 8-9, 1975 Handicapped people should not have such a hard time obtaining food stamps. Because of a few "crooks" they make us all suffer. There are many hungry handicapped people in the U.S. today because they have no way to get the food stamps. And if we do get them, there is no one to go to the grocery for us. This is another service the Arthritis Foundation could provide for those who need it. The Arthritis Foundation of Tucson is very active and has helped many people. If they had more funds availakle, more help in more areas could be provided. Your committees and Congressmen could understand our problems a lot better if you would hire arthritics. EDITH LEE September 9, 1975 Phoenix, Arizona I am Edith Lee of Phoenix, Arizona. I am very happy to have this opportunity to be here before this panel and such a fine audience today. I have been suffering for the past six years with osteo-degenerative spinal arthritis, like many of you here tcday. With the paralizing of the spine at night and the stiffness and pain of the mornings, it's hardly worthwhile to get up these days. Somehow I find we have more determination than the average well person. I have been under several fine doctors the past 18 years. Each have helped me in their own way--through DRUGS. With the many side effects I experienced, I had to search for better ways to get relief. TI have been successful with several ncn-toxic treatments, good nutrition, and plenty of easy exercises. I am now taking osteopuncture which has helped me tremendously and enabled me to make this beautiful trip to Tucson. Tension seems to be my number one enemy. It tightens my neck and back muscles, causing additional rain and even indigestion at times. Foods we eat are mcst important to our well being. I wish more doctors in the medical division would choose to teach us preventative medicine and more nutritional education according to our own body chemistry. Our attitude of mind is important for better health; when we pain constantly it weakens our thinking power. We must be aware of this and ward off anything that may destroy our self pride. I'm looking forward to the day we can help everyone to better health. I hope we can go kack home having better knowledge because we've shared. Be determined to make a better tomorrow--together. 1-105 Tucson, Arizona September 8-9, 1975 MRS. I. A. PHILBRICK October 3, 1975 Tucson, Arizona Hope this helps. God bless you. Dr. William Fosdick, of the Holkrook-Hill Medical Group of Tucson, Arizona, prescribed Cytoxan for my husktand, Ivan N. Philbrick, for his arthritis in arms, shoulders, and neck; three tablets a day. After three weeks my husband became weak. Every week my husband visited Dr. Fosdick and told him of his weak condition. The doctor always told him to keep on taking the Cytoxan--three a day. He also informed him to take four tablets a day; his hair fell out; then he ordered three tablets a day again. After nine months my husband was in a very weak condition. He developed pneumonia and was taken to the Tucson Medical Hospital, July 28, 1971, through August 31, 1971. Dr. Fosdick went on a vacation and left my husband in the care of Dr. Hill and Dr. Holbrook of the Holbrook Hill Medical Group. My husband was very ill and the doctors feared for his life. During one of my visits to my husband, a doctor at Tucson Medical inquired of me how many Cytoxan were given to my husband and how long. I informed the doctor that Dr. Fosdick prescribed three tablets a day and for nine months until he developed pneumonia. This doctor said, "Three a day, too many; and nine months, too long." That was the answer to my husband's illness. After four weeks in Tucson Medical Hospital, he was transferred to Medicenter, a convalescent home, for six weeks. He could not walk; he was in a wheelchair. On October 13, 1971, I brought my husband home from Medicenter. I called Dr. Fosdick to my home and asked him to help my husband; he was in a very weak condition. Cr. Fosdick answered me in a rude way, "Stop chasing rainbows, your huskand is going to die." I answered Dr. Fosdick, "My husband is not going to die. If you won't help him, get me another doctor." After a few days, I received word I was to call Dr. Rothbaum--November 26, 1971. Dr. Rothkaum advised me to kring my husband to Tucson Medical Hospi tal. My husband was depressed Ly then as no help had been forthcoming. After two weeks under Dr. Rothkaum's care, he informed me he could not help my husband. He turned him back to Dr. Fosdick who called Dr. Strong to take over the care of my husband. After six months, I went to University Research Hospital and pleaded with Dr. Boyer to help my husband. He informed me to bring my husband to the emergency room. The next day, after ten hours, he was finally admitted to the University Hospital in the care of Dr. Marcus. After many tests and x-rays for four weeks, I was informed that his system was drained by the medicine Cytoxan. I brought my husband home; his health had not improved. My husband had many sinking spells, and he would call for help. I had an ambulance take him to the hospital. Dr. O'Brien would tell me he did not know what to do. My husband was in constant pain and weakness. He subsequently developed a progressive muscular weakness in his legs. Due to the 1-106 Tucson, Arizona September 8-9, 1975 weakness he was unable to feed himself. I visited Dr. Marcus at his office, asking for help; he gave me none. I asked if there wasn't a doctor in this world that could help my husband. Dr. Marcus said that he did not know of any doctor. Now my husband was in the care of Dr. Cundiff at the University Hospital. I brought my husband time after time to Dr. Cundiff in a wheelchair, and he asked for help. Doctor Cundiff would test his heart, and my husband would plead for help. As he grew weaker and weaker he would ask for help. TI could not find any doctor that would help my husband. May 12, 1975, Ivan N. Philbrick, my husktand, passed away. I can hear his plea, "Please get me help." I must live with these words ringing in my ears. I know my husband could have lived if I could have found a doctor that could help my husband. Can doctors continue to give drug overdoses to patients and have patients die from the effects of the drug? Please stop this way of treating patients for arthritis so that no other patient will have to suffer the agony my husband went through. Thank you for reading my testimony. MRS. IVAN N. PHILBRICK September 15, 1975 Tucson, Arizona I am interested that the Arthritis Commission is coming to Tucson, Arizona, September 9th, for a public hearing at the Braniff Hotel. I would like to register a complaint in regard to medication that was given to my husband, Ivan N. Philbrick, in Tucson. I am interested tc know whether there has been adequate research done on Cytoxan. The medication was started Sept. 28, 1970, and he took it until June 1971; three Cytoxan a day for nine mcnths. Then he became very ill. It appeared to me and some of the doctors who knew him that subsequently he developed a progressive muscular weakness that ended in his death May 1975. This weakness began while he was on Cytoxan, given by a local doctor. I would hope that if the Arthritis Commission is adequately funded that it will supervise the local Arthritis Foundation in regard to medication being used for treatment of arthritis. 1-107 Tucson, Arizona September 8-9, 1975 MRS. ANITA SISNEROZ August 21, 1975 Wilcox, Arizona I will be unable to attend the Arthritis Commission public hearing in Tucson, but I will send in my written statement and hope it will be of some help. In 1961 I went to a doctor with severe pain in both arms. The doctor's diagnosis was rheumatoid arthritis and that there was no specific cure. Within a month I felt pain in the tack of my neck, my arms, and lower part of my kody. During the following years, my legs and neck were stiff and my fingers, hands, and toes were twisting in a grotesque manner. T was unable to do my housework, comb my own hair, and had to use crutches because my legs were so stiff, swollen, and painful. I went to one doctor after another hoping to find one that could help me but with no success. In June of 1969, when my family was shopping for a wheelchair for me, I heard about the Arthritis Foundation in Tucson. The therapy and treatment I have received from the doctors and nurses at the Foundation for the past six years have helped me tremendously and have kept me from becoming a cripple. Today I can walk again, do my own work, and function almost as well as anyone that does nct have arthritis. I have been very fortunate and am thankful for the help the Foundation has given me. In the future I hope the Arthritis Foundation will continue with the work they have been doing. Their work and research is very important to people like me and most important to the many children with this disease. God bless them for their work and help them like they help us. ROSEMARY VALENCIA August 26, 1975 Tucson, Arizona I regret I won't be able to attend the hearing Septemker 9, 1975, so that I may present my testimcny of what the Arthritis Foundation has done for me. I have had a severe case of rheumatoid arthritis for 30 years and have attended the Arthritic Clinic off and on for 9 years. They have tried medication and physical therapy. For the last six years I had been in Cochise County Hospital until February, when I attended the Arthritic Clinic in Sierra Vista. The doctors there requested I be sent to the University of Arizona Hospital in Tucson. I am very thankful and happy to say they did a lot for me there and now I am able to be home again. The Arthritis Foundation bought me a porto-1lift which makes it easier to get on the wheelchair and they also had a sidewalk built from the front of the house to the back where I can go out and enjoy it. I sincerely appreciate everything the Arthritis Foundation has done for me and I am very grateful. 1-108 Tucson, Arizona September 8-9, 1975 It is really a great blessing that President Ford signed the National Arthritis Act. May Congress ke generous with their funds to make it possible for others in need to live a healthier and happier life. MRS. C. WABICK August 26, 1975 Tucson, Arizona Here is my statement in writing about my case as an arthritic patient of the Arthritis Foundation here in Tucson. I've been a patient at the clinic for over five years now and I've found the treatments and care given to me excellent, and I do hope the Foundation gets all the funds necessary to continue their most important work. I was sick a long time before I was able to get to the clinic, kecause of no money to have a diagnosis made, but once I was accepted I have only my gratitude for the good care I get. I have a problem in my transportation kecause I don't drive, but I will make an effort to appear in perscn if I get a ride. I live more than 26 miles out north of town. I am looking forward to attend the meeting at the public hearing. And pray you will be successful in your efforts. ALPHA BLAIR WRIGHT August 18, 1975 Mes, Arizona For several years, thousands of Americans have been crossing the border into Mexico to obtain medications for the relief of arthritis, something they were unable to do in the United States. Perhaps it is time to consult some of these doctors and benefit from their advice. They do not pretend to have any cures, but they have had fantastic results in bringing relief to a great number of people, including myself, and for a very nominal fee in compariscn to our doctors here. I would like to discuss this with the National Arthritis Commission in Tucson on Sept. 9, 1975. MRS. LUDWIG BRUCKMANN August 20, 1975 Tucson, Arizona I would like to speak at the National Arthritis Commission hearing that is to be held in Tucson on Septemker 9, 1975. I have a little granddaughter with rheumatoid arthritis. Her name is Elizabeth Thomas, age 10, whc now lives in Phoenix, Arizona. She has been a patient at the Children's Arthritis Clinic at Tucson Medical Center for 1-109 Tucson, Arizona September 8-9, 1975 the past three years. As they don't have a «clinic such as this in Phoenix, her mother brings her down to Tucson fairly reqularly for checkups. She was diagnosed as having this dreadful disease at the age of two years and three months. She had knee surgery at that time and after having her leg in a cast several times and many hours of therapy, she was finally able to walk withcut limping at age three. At the age of seven she had another kad flare up in the same knee and, because of favoring the weak knee, her other knee became inflamed. She was very stiff and very lame, and became so timid that she was afraid of crossing the street all that summer. You could feel her hand tighten on yours as she crossed for fear that she wouldn't make it. With her therapy of exercises three times a day in a warm tub of water, aspirin, elastic bandages on both knees, a lot of love and prayers, plus a determination on her part, in one year she could roller-skate and ride her bike again. She now takes eight aspirin a day, still has fluid on her knees, but is as active as possible and tries very hard to keep up with the four other children in the family. How long will she be this well? When will she have another flare up? How bad will it ke? These are questicns cnly time will tell. She has to have a special eye check every six months to see if her eyes are affected, as it is known that they could be. I personally knew a girl that had childhood rheumatoid arthritis and became totally blind at 21. I pray that this never happens to my happy, cheerful little granddaughter or to any other child. My husband's brother also suffers from this disease. He was 17 when my husband and ‘I were married and lived with us for nine years. He married at the age of 26 and was a perfectly healthy young man, tall and straight, rode a bike, went horseback riding, and played a very good game of tennis. Two years after marriage his thumbs became so weak he couldn't open his car door and had to get a different type car that didn't have push buttons. Then his knees began to kother him and he started to go to the doctor for this. They tried gold shots and he couldn't tolerate them and aspirin didn't seem to help. He then went on cortisone. It has helped some but he is very lame and one leg is so much shorter that he has special shoes, one built up. They cost $250.00 for the pair. He has developed ulcers, and his skin is so thin from his medication that twice he has been rushed to the emergency room for many stitches after falling and cutting himself. It is heartkreaking to see him the way he is now and to remember him as he was when he married. I hope through more research that they can find a cure for this disease so that little children and young people in their prime of 1life don't have to suffer and give up so much. 1-110 Tucson, Arizona September 8-9, 1975 MARY ALICE CONILEY August 21, 1975 Tucson, Arizona I understand the National Arthritis Commission is coming to Tucson on September 9, 1975, and I hope you have time now to read a few comments from someone who has suffered with rheumatoid arthritis since 1939. I think the saddest thing about rheumatoid arthritis is the fact that while some strides have been made in treating it, for the most part, the people who have contracted the disease the past few years are suffering just as much as those of us who became afflicted 36 years ago! In that length of time, had more of our tax dollars gone into research and education, perhaps it would be a different story. Arthritics like to be as independent as possiktle, but many of us find that we finally have to quit work and ask for Social Security disability payments. By providing more money to educate doctors about arthritis, and by channeling more money for research (remember, we put men on the moon), many can be helped, which will result in fewer having to claim disability payments. Many of us wish that you could put on a campaign to educate offices and stores to provide chairs high enough for the arthritic with bad knees and hips to manage. Many of us can drive, but find ourselves unable to go many places because of the low chairs or architectural barriers. There is also a huge need for transportaticn for those too crippled to drive. I wish the National Arthritis Commission much luck in its work. So many of us are counting cn you. MARJORIE DOUSIS August 22, 1975 Tucson, Arizona I have several forms of arthritis, tut the one that has my doctors and me the most concerned is systemic lupus erythematosis (SLE) in its severest form. I hear researchers are in hopes of finding a control for this disease, but I've not heard of any progress. I've tried to research this form on my own and have found no encouraging news. All the in-depth reports I've read end up with "always fatal" for this severe form. In case you aren't familiar with it, it can and does attack literally all parts of the kody. It always kills the white corpuscles, leaving the patient unable to fight any infections. In my case, I've had considerable heart and kidney damage and also have invclvement of other organs--lungs, skin, diaphragm, joints, muscles, etc. I'm a widow, 51 years old, and mother of three. I'm 10C percent disabled and have nc income outside of $108 a month from the Veterans! Administration. I have severe allergies with constant sinus infections for which I receive weekly antigen shots and daily antihistamines and antibiotics. Even all that doesn't control the infections, so the SLE gets worse with almost constant heart and kidney pains; I'm to stay in 1-111 Tucson, Arizona September 8-9, 1975 bed, especially with the heart pains. I have to have a cleaning lady, air-conditioning, and an electronic air filter. Soon all my savings will be gone--then what? I've written several U.S. Congressmen and Senators trying to get a law passed for 100 percent disabled Social Security for widows, but they just tell me it would be "too costly" to pay disabled widows. But, to the main reason for this particular letter--why hasn't the Federal Government allocated any funds for research in an effort to eradicate arthritis, the nation's number one crippler? Naturally, I'll not ke able to attend the meeting here in Tucson on September 9th at the Braniff Hotel to present my views in person, but you may be sure that I'll be awaiting anxiously for news of that meeting and hope some progress is made to help all arthritic patients. Thank you. MRS, NEWTON J. DUPUIS August 26, 1975 Tucson, Arizona I am an arthritis patient receiving gold therapy. My special interest is research in the hope that less toxic and more effective methods of control or cure of arthritis may be found. Because of the large number of arthritics who move to Tucson in the hope that the warm dry climate will relieve their pain, this seems to me to be an ideal place to have a major arthritis research center. JOHN J. EVANS September 12, 1975 Tucson, Arizona Tn the southeastern portion of Arizona there are 60,000 arthritics suffering from a disease as o0ld as the humran race, a disease that twists, tends, and brutalizes its victims in a way so horrible they become, in many instances, social outcasts avoided and ignored. May I ask you, sir, tc show me in the last 30 years even the slightest dramatic breakthrough in the treatment and arresting or curing of this disease? Surely ycu are aware the suffering is in no way lessened! While vou are hurriedly thinking of cortisone and its side affects, indocine and gold, etc., I will tell you that aspirin is and has been the best and safest treatment. Yet we are told the medical profession doesn't really know why this is so nor what there is in this simple medicine that is so beneficial!! We can remove caffeine from coffee. We can remove nicotine from tobacco. Am TI to believe our research scientists who produced an atomic bomb with all its hecrrifying derivatives, who placed a man on the moon, who are exploring the depths of space, are to ke stopped cold by this one problem? 1-112 Tucson, Arizona September 8-9, 1975 I will grant ycu the privilege of assuming I am bold. But I will at the same time say that the redical profession and researchers should hang their heads in shame. They have failed miserably in their puny efforts to find the cure for this awful affliction. Man built the atom bomb because he set a deadline for completion. Man put one of his kind on the moon because he set a deadline for completion. My God, sir, can these doomed humans ask for or expect an effort any less inspired? Get on with the task. Organize and collect your most brilliant talent. Demand funds. But above all set a deadline, a completion date whether its a year or ten. Get going and meet the challenge head on. It can and must be done. You must find a cure. Shame! Shame! Shame! ELIZABETH HASTINGS August 26, 1975 Tucson, Arizona My physical disability makes it difficult for me to attend the forthcoming public hearing here in Tucson. But I like to «call your attention to the need of all the arthritics whose lives have been changed drastically by this disease. I am well convinced that the medical profession would soon be able to find ways how to control or even cure arthritis if more money was put into research. Being afflicted with the disease for 23 years and having a teenage daughter who also has rheumatoid arthritis, I plead with you to spare further generations the sufferings and pains by providing money for research now and to prevent the «crippling effects of this dreadful disease. VERA HUCK Auwgust 27, 1975 Tucson, Arizona I wish to go on record as favoring Tucson as the arthritis center of the United States kecause of the many advantages offered by this city. More funds should be appropriated by Congress for research on this disease. I speak from experience. My own son developed arthritis at the age of nine. He died at the age of 38. He did go through law school and became an attorney. The amount of work he could do was very limited because of his rhysical condition. He had many young friends who were very talented and intelligent but could not produce to their fullest ability because of this insidious disease. Mankind has been the loser. 1-113 Tucson, Arizona September 8-9, 1975 FRIEDA H. LONG August 22, 1975 Tucson, Arizona The need to discover a cure or control of arthritis is great because of the waste caused by this disease. This disease wastes the personal achievement and contribution to society that a person could make if not afflicted with arthritis. A person with arthritis is limited in all his activities, whether in work, play, or human relationships. These limitations can be overcome through substitution and understanding, but the necessary adjustment is vary difficult. On a national level, there are millions of dollars paid out every year in VA pensions, Social Security disability, and welfare programs to totally disabled people whc would much rather be earning their own way and contributing their share to society in general. When a person has some form of arthritis, and most people dc after #40 years of age, it interferes with working hours and causes lost time from the job. This is frustrating to both employer and emgloyee. Arthritis also contributes to more accidents on the jok and causes decreased output of productivity. Anything that prevents each individual from achieving their full potential is a detriment to the nation and is a waste. If funding could be provided for adequate research to find the cause, control, and cure for all forms of arthritis, this waste of human lives and monetary expenditure for government aid to the disabled and their families could be stopped, and the next generation would be free of arthritis as this generation is relatively free of polio and tuberculosis. The conclusicns expressed above have been gained from years of experience with my husband who has had rheumatoid arthritis for over 25 years, and through my own frustration with "after 40" osteoarthritis. With the help cf VA and Social Security, and also the encouragement of the church, we have reared our daughters and lived a nearly normal life. I hope you will consider these remarks and recognize the need to help all those in similar circumstances. 1-114 Tucson, Arizona September 8-9, 1975 ROSALIE MARTINEZ August 18, 1975 Scottsdale, Arizona My mother has had arthritis for several years and 1s progressively getting worse, We sure would appreciate any help, such as research centers for arthritis. T would like this letter to be placed in the Commission file. WILLIAM AND VIRGINIA SCHINNERER August 19, 1975 Tucson, Arizona My wife and I have a particular interest in the public hearing that the National Arthritis Commission will hold at the Braniff Hotel in Tucson, Arizona on Tuesday, September 9, 1975. We both are afflicted with, so far, minor conditions of arthritis which, while painful and annoying, are not nearly as kad as the thousands of victims of arthritis that we see as we go into public places and doctor's offices in the Tucson area. These arthritis victims have, in general, come to Tucson from other parts of the United States, with the hore that the warm dry climate in the Tucson area will help their condition. As a result of so many arthritic patients being in the Tucson area, many of the Tucson doctors have tried to keep up with the state of the art in the treatment of arthritics and seem to be doing their utmost to help those who are so unfortunate to be afflicted with this crippling disease about which not enough is known. We both feel that the Congress should appropriate adequate funds to implement the prcvisicns of the National Arthritis Act, which has already been signed into law. There is great need for research into the causes and development of Letter medications for the treatment of arthritis. There is also much need for counseling of the designers of public buildings so that these buildings are convenient for use by the many arthritics who must use them in their daily lives. DOLORES SUSKO August 26, 1975 Tucson, Arizona I would very much like to see anything and everything done that is possible to find a cure for arthritis through research, rehabilitation, etc. Tucson is a growing city and much of it due to people with arthritis coming here for relief of pain as I did. I have been helped very much (not cured by a long shot) and although my crippling is slow, it is very painful at times. 1-115 Tucson, Arizona September 8-9, 1975 Our doctors are good and interested keyond their call of duty to help us get relief of pain or cured. They give us much of their time and knowledge. Please, please, please allow them to continue in their good work. I, myself, will work as a volunteer whenever or wherever needed. We need all the helpful prcgrams we can get. MRS. RAY WILDA October 25, 1975 Phoenix, Arizona I've had rheumatoid arthritis for 17 years and it does seem to have gotten worse of late. Anyway, it started in my feet and the doctor put me on cortisone. I can truly say, that and aspirin are the only things that help me. Tried many drugs, but nc good for me. Gradually I got it in my knees and now shoulders, arms, elbows. So now I just take the Aspirin. I can still keep going but it is very painful in the A.M. Left Wisconsin two years ago for here (Arizcna), and the dry heat does help a lot. In fact, sometimes it's just great and then again just so-so. But I know it would be worse back in Wisconsin. Anyway, I think they should do more research and also follow up on this drug that came out of England in July--stating their belief that rheumatoid arthritis is caused by a germ. I guess it needs a lot of testing, but it sure would be a breakthrough. Incidentally, I get along without cortisone here. Thanks for 1listening, and good luck on getting help for all of arthritic sufferers. I surely feel sorry for anyone afflicted in this way. It's such a derressing disease. DR. MARTIN SNYCER * August 29, 1975 Tucson, Arizona Arthritis 1s a disease entity that requires a cooperative effort on the part of many medical disciplines for its control and management. Paramedical specialties also offer contributions that integrate a total health care system. Podiatry and dentistry share, within their field of specilization, in the prorhylactic as well as in the acute care of the rheumatoid patient. The thrust of this summary shall address itself to the role that the profession of podiatry can be included in the effort toward helping the disabled patient. I am sure you are aware of the podiatric profession and its charge in the care and treatment of the human foot. Since many rheumatoid diseases exhibit peripheral symptoms, particularly where the foot is concerned, the podiatrist can and should be an invaluakle aid for the rheumatologist who is the charge physician. Current podiatric training with emphasis on the 1-116 Tucson, Arizona September 8-9, 1975 biomechanical as well as surgical phases of pedal care qualify him to fill a notch in the overall evaluation and treatment of the arthritic patient. His expertise in these limited areas qualifies him to be both a consultant and a part of a team within the treatment regime. There are numbers of rheumatology clinics throughout the ccuntry that do not call upon the podiatrist, and this may be due to a lack of information or communication on the part of the general medical profession. Since the feet are important for ambulation, and activity is generally encouraged to prevent deformities and to increase strength and function, the podiatrist should be a stronger link in the chain of therapy that is extended to the arthritic. The main purpose, therefore, of this summary is to promulgate several recommendations that will correct the akove and encourage a more complete and fruitful explanation of the role of podiatry in the picture of the National Arthritis Foundation. Specifically these are recommended: (1) Request the American Podiatry Association to establish an ad hoc committee and meet with your liaison group to determine and establish the qualifications and expertise that podiatry offers in the area of pedal care. (2) Encourage, through local and regional chapters, a dialogue between the medical and podiatric local associations to promote consultation and conference meetings in special cases. (3) Investigate the effects of pilot programs aimed at a total involvement of podiatry care. (4) Assist the colleges of podiatric medicine in including courses that will establish a curriculum arrived at the enhancement of the podiatry student in the rheumatic diseases. (5) Provide grants tc various colleges of podiatric medicine for research projects that fall within the scope of podiatry as they relate to arthritis. (6) Evaluate and disseminate through your publications and other related agencies, the results of such programs mentioned above. RICHARD LD. UTT August 21, 1975 Tucson, Arizona This letter is written with the intent to put teeth into the National Arthritis Act signed intc law by President Ford on January 4, 1975. As a patient in hospitals around the world: Thailand, the Phillipines, Japan, and the United States; Davis-Monthan AFB, Travis AFB, Chanute AFB, Kincheloe AFB, Lackland AFB, and finally the Veterans' Administration 1-117 Tucson, Arizona September 8-9, 1975 Hospital here in Tucson, it was not until recently that a diagnosis for my arthritis was established. In the course of four years, it was my misfortune to be a hostage at the mercy of wunspecialized doctors using the trial and error methods of medicating, testing, and diagnosing, all in the name of medicine. TI could go into great detail about overdoses by dcctor's prescriptions, but that is not the point I am trying to stress. The point is that there are a great deal of doctors, but just a handful of learned rheumatolcgists. It has been my good fortune, of late to come in contact with some of the best in the field. For instance, Dr. Eric Gall, University of Arizona and VA; Dr. Steven Strong, Holbrook-Hill Medical Square; Dr. Boyer of the U/A and VA; and also Dr. Tretbar, VA. Each of these doctors are well versed in the treatment, testing, and diagnosing of arthritis, as well as instructing undergraduates in the psychophysiological aspects cf treating the uneducated patient. For this reason, T would like to clarify the fact that I, as one of over 20 million Americans with arthritis, would like to see more of our tax dollars spent on fellowships and training grants to obtain a better versed and balanced staff of rheumatologists spread across the United States so people such as myself would not have to relocate to find proper medical care. Thank you for letting me express myself, for it behooves all arthritis patients to receive proper medical attention. ANNA J. CULLINAN, STATE REPRESENTATIVE August 28, 1975 Phoenix, Arizona It has been brought to my attention that the National Arthritis Commission will be here in Tucson on September 9, 1975, to hold a public meeting. I wish to submit a written statement that can be included as a part of the record of the Commission. Your resources are here--medical college, hospitals, university and colleges, research grours, staff. Your climate is here. Arthritic sufferers have been coming here from all over the United States because they find that living is easier here. Your patients are here. One out of eight people residing in the Tucson southern area is an arthritic sufferer. These are the people researchers will need to contact. We have a need for clinical research, basic research, and would like to be considered as your choice as a comprehensive center. We have a need for you and we would like to have you here. 1-118 Tucson, Arizona ' September 8-9, 1975 MRS. RAY B. EENERT August 19, 1975 Tucson, Arizona I'm sorry to have tc miss the arthritis hearing being held here in Tucson. Did want to get my thoughts across to you in reference to our facilities and needs as arthritics. Tucson is a logical center for arthritis education and research. We have a medical school already. We have an active chapter with the Foundation. We have more people with arthritis per capita than anywhere in the country. We feel we do need more and better transportation facilities for people with arthritis. Among the arthritics are many, many children! Since we do have a good foundation for the Foundation, it is imperative that we can further education and research. Thank you. ERIC P. GALL, M.D. August 28, 1975 Tucson, Arizona I am writing to make known my ideas to the National Arthritis Commission since I will be out of town during their hearing in Tucson on September 9, 1975. I am a Board Certified Rheumatologist, Assistant Professor of Internal Medicine at the University of Arizona Medical Center, and Chief of the Rheumatology Service at the Tucson V.A. Hospital. I am also a member of the Board of Directcrs of the Southwest Arthritis Foundation. I wish to direct my remarks not only as an academician but also as an individual vitally interested in the provision of health care to the arthritic patient and to the teaching and dissemination of knowledge of these diseases to the student, young physician, practitioner, allied medical professicnal, and to the patient. Very early in my medical career it kecame evident that the field of arthritis was not emphasized in the teaching of medical students, myself included. It was relegated to a back seat in education and, thus, elicits little excitement or interest. Indeed, I never pictured myself caring for patients with joint diseases despite being educated in a school famous for its rheumatology, a place where I eventually returned for my specialty training. Students were not exposed to the excitement and satisfaction of caring for people with arthritis and related illnesses. Indeed it wasn't until the remarkable advances made in immunology in recent years made the field a more glamorous one, that any significant number of individuals were attracted (albeit through the back door) into caring for rheumatic patients. Still many practitioners of medicine--in fact, the majority, in my own experience, are uncomfortable in the examination of the musculo- skeletal system as well as in the therapy of arthritis. Few good internists would miss an Se3 gallop, yet few would be able to adequately examine the shoulder. Cigitalis and diuretics are the mainstay of treatment of congestive heart failure, and nearly all physicians are comfortable with using these drugs. Aspirin and gold are the mainstays of the therapy of rheumatoid arthritis, and very few clinicians push aspirin to its maximal anti-inflammatory potential or are at all comfortable instituting or maintaining gold therapy. Yet there are few things as 1-119 Tucson, Arizona September 8-9, 1975 satisfying as achieving relief of pain or remission in a patient who has been suffering from rheumatoid arthritis. Drifting from the basics of treating these common illnesses, very few people are actively occupied in looking at more comprehensive problems of the arthritic. The areas of home planning, occupational rehabilitation, modification of appliances, comprehensive physical therapy, and the total evaluation by an interdisciplinary approach for the arthritic are neglected in all but large tertiary care centers in major metropolitan areas. The dream that I have is to make the field of rheumatology exciting and challenging to all physicians, community leaders, and private individuals. We must interest industry into looking at appliance, home and building modifications; to make every place and thing usable and accessible to the entire population, not just those with normal joints. The horrendous job of finding employment for and retraining the disabled person is of paramount importance not only to the patient, but to the community who is supporting an individual on its welfare roles who could be productive and self-supporting. ‘I have been frustrated in my attempts to find jobs for most of my patients. Our social workers, many of whom are not tuned into the special problems of the arthritic patient, throw up their hands in despair. They can easily find a nursing home--but for vocational rehabilitation and/or a job, the patient is sent to an employment agency who can or will do little for them. The answers are not easy to come by, nor will they be quick. I think our first attack must be on the level of education for physicians and other medical personnel and in providing opportunities for comprehensive care and adequate consultation for the patient. Education of specialists in the care of rheumatic diseases is important despite the turning away from specialization and towards general care. The specialist is able to provide consultation and generally is interested in the problems and the temperament of the chronically disabled and painful patient. Specialists located in areas outside of large cities and regionally diversified will be able to economically provide resources for care that the distances between rural towns and urktan complexes make prohibitive. However, more important than specialty training is the dissemination of knowledge amongst people who provide most of the medical care for the family. This means an outreach program. Here in Tucson and in the university we have begun such attempts through the Regional Medical Program. The idea of visits to small communities and medical facilities has been, in my eyes, fruitful, but not frequent enough. To simply lecture to one group about how to aspirate a joint, to another group 100 miles away how to treat RA, and to a third group somewhere else how to approach gout, gives small fragments to each segment. To be able to send a comprehensive care team into a community for a week or two to hold workshops, to see problem patients, tc look at community facilities, to go into the patient's home, to alert the community to the problems which they have is a better approach. This may be coordinated with community representatives and physician visits to a major medical center to spend a period of time observing and participating in the programs of the center. We have planted the seeds of such a program by having physicians spend a week in Tucscn under the auspices of RMP where they observed rheumatologists, crthopedic surgeons, rhysiatrists, and therapists in 1-120 Tucson, Arizona September 8-9, 1975 their offices, clinics, and in a teaching situation. There were problems of organization, but in general the participating physicians felt it was worthwhile. We have learned and perhaps would plan ketter programs in the future. We also made visits (a rheumatologist, orthopedist, and physical therapist) to small communities and saw patients. We were able to identify some proklem patients and plan a comprehensive program. We were also able to solve some simple diagnostic and therapeutic dilemmas in a number of "problem patients" and, thus, teach the physician to recognize the same thing later. Unfortunately, in a brief visit there was no way to reinforce these notions. I envision the concept of regional centers as being important in the eventual care of rheumatic disease. These centers should not care for all patients. They should provide education, outreach programs, training, clinical research, and eventually, in certain patients, the chance for a comprehensive approach to complicated groklems. The centers should be located in accessible areas. They should be directed by a specialist in rheumatic diseases (a rheumatologist) who also has a deep interest in educational programs, in methods of health delivery, and in collecting and disseminating data which would be amassed from these programs. In addition, an administrator (non-physician) should be responsible for the running of such a center and its fiscal control. The resources of a community with strong rheumatologic backup is necessary. The active participation of physicians in the programs of such a center is necessary. The expense of hiring several staff rheumatologists, orthopedic surgeons, etc., would be alleviated by compensating community physicians and academic physicians who are already present for participating in the programs which are run by the medical and administrative director in concert with a committee of interested reople. Further monies for personnel should be spent on specialists in the areas of social work as it relates to the arthritic patient, vocational rehabilitation, nurse practitioners in rheumatic diseases, people interested in architectural and appliance modification in the home and in the community, physical therapists, etc. Such a center should rrovide training for medical students, residents, practitioners of medicine, specialists in rheumatology, and other health professionals to "carry the word" outside the center. It should provide regional programs frequently. It should collect data and improve and update its functions periodically. It should publish its efforts to communicate with other health professionals its successes and failures. Many of these programs could begin without a structure to house it and would utilize the resources of the community. The advantages of an inpatient comprehensive care unit for complicated chronic arthritic problems are important and should be a later goal. Such a unit, which would be a future goal after everything else was working, could well be part of an existing facility built on or reconstructed to take into consideration the complicated problems of the arthritic. Staffing could be through the members of an already active center. Combined programs of training for specialists, allowing arthritis oriented orthopedists to spend significant time in rheumatology, and vice versa, and allowing training in allied areas, are also important. My proposed organizational plan for such a center is attached. Thus, such a center would provide a resource for training of all levels 1-121 Tucson, Arizona September 8-9, 1975 (patient, generalist, specialist, allied medical personnel, and the community) as well as provide comprehensive care. I feel that it should be housed in a university center in cooperation and with the full use of members of the community both in staffing and helping direct the center. Outreach programs would be a major portion of the goals of such a center, but local training and providing of care for a metropolitan and regional rural area should also be an equal concern. Their eventual goals would be in finding innovative methods of health care delivery to the arthritic patient and of training both the general physician and the specialist in the latest methods of diagnosis and care. Clinical and epidemiologic research would be an important byproduct. Our experience is only beginning here in Tucson through the Regional Medical Program and active Arthritis Foundation programs in this city and through our own cooperative attempts at our own University Medical Center. Our early experience shows that these ideas are viable with proper funds, good leadership, and interested and competent professionals such as those that we have here. Excellent care for the millicns of patients with arthritis, along with advances in diagnosis and therapy, will justify the cost of such programs by making viable, active, productive citizens out of dependent, crippled, arthritic patients. BETTIE KING August 27, 1975 Tucson, Arizona As the secretary of the Tucson office of the Arthritis Foundation, I come in contact daily with people who have varied needs for their arthritis. The greatest need is for help with payment for surgery since arthritis is not covered by most insurance policies! The Foundation provides comprehensive treatment for approximately 250 patients per year, but this is only a small percentage of the people who need help. A center for arthritis located here would be of tremendous help. There are rheumatologists, allied health personnel, the University Medical School, and an active chapter cf the Arthritis Foundation working very well together to provide as many services as possible at the present time. Federal funding would make it possible for more people to receive adequate care and perhaps enable a number of them to return to the ranks of the employed. We urge the Commission to look closely at our area in setting up the centers. 1-122 Tucson, Arizona September 8-9, 1975 PAUL LEUNG August 25, 1975 Tucson, Arizona It is my understanding that the Nasional Arthritis Commission is holding a public meeting in Tucson, Arizona, September 9, 1975. As I am unable to appear at that particular day, because of prior commitments here at the university, I would like to express my opinion as a professional in rehabilitation. Tucson, Arizona, represents an unusual situation with regard to arthritis. For whatever reasons, our population probably has more individuals with arthritis than of the general population. In addition, we have had excellent ccoperation ketween health professionals, and a very active Arthritis Foundation chapter will indicate this to be an excellent area for establishment of an arthritis center. I would like to personally underscore the need for this type of program. In addition, there appears also to ke a need for more funds in research and in treatment of arthritis as it affects a significant number of our population. Should the Commission make a final report to Congress, the need for adequate funding should ke emphasized. If you require further comment, please let me know. REPRESENTATIVE MORRIS K. UCALL September 9, 1975 Arizona In reporting the National Arthritis Act of 1974 from committee last year, it was ackncwledged that, "The cause of arthritis is not known." But there is an abundance of factual information pertinent to the problem outlined by Congress in its "Findings and Declaration of Purpose" in the Act. The Commission is at work developing an Arthritis Plan to coordinate the research, diagnostic, training, and treatment efforts needed to combat this relentless enemy and its calamitous impact. Advise from puklic and rgrofessional witnesses is being sought at public hearings such as this. It is fitting that the Commission elected to hold one of its hearings here in Tucson. We have among us both a higher than average number of victims of arthritis and truly knowledgeable persons working to help them and their fellow sufferers across the nation. In drawing up the National Arthritis Plan, the Commission will probably make its recommendations for location of the National Arthritis Research and Demonstration Centers called for in the National Arthritis Act. I urge that Tucson ke recommended for location of one of these centers. We have a rate of victims in the order of 1 in 8 of our population, compared to 1 in 12 nationally. And we have personnel and facility potential for the needed core support programs around which the education, diagnostic, treatment, and research efforts can be built. 1-123 Tucson, Arizona September 8-9, 1975 We in Southern Arizona greatly appreciate the Commission's courtesy in scheduling a hearing in Tucson, and we know you will recieve ideas and advice helpful in laying out the coordinated attack needed to combat the nation's number one crippling disease. MRS. W.C. WARNER August 27, 1975 Tucson, Arizona Thank you for your consideration in this matter. I'm so glad to know a start has been made toward helping arthritics. It is such a horrible disease, often crippling people in their youth. Several friends who came here as a last resort have been helped so much, partly by the climate and partly by the number of medical facilities and specialists available here. I know of no other area that has both. One friend who had not driven for five or six years now drives. Another improved enough to become a teacher in the city schools. Tucson deserves to be a center for arthritics, and I do hope the Foundation will designate it as such. If I can help by testifying, I shall be happy to do so. EDITH A. WINGATE August 20, 1975 Tucson, Arizona Since TI will be working and unable to appear at the public hearing to be held in Tucson, September 9, 1975, I wish to let you know some of my thoughts on the subject of arthritis and the National Arthritis Act. Please include my letter in the official record of the Commission. I have had arthritis since I was a child, and fortunately have been able to maintain my job as a teacher. I seriously doubt that I would be as well off as I am if it hadn't been fcr research efforts of doctors like my own, Dr. William Fosdick, and the Holkrook-Hill Medical Group here in Tucson. As a patient, I see other victims of arthritis who lead a very difficult and painful existence; anyone who sits in the lobby of the Holbrook-Hill Medical Center for a few minutes can testify to that. Since arthritis sufferers numker about 20 million, I think that national efforts to eradicate the number one crippling disease should go beyond establishing a Commission. Well, the Commission is fine for administering activities; programs to deal with arthritis itself are necessary. We have many people who come to Arizona because of arthritis difficulties; proportionately there are more living in Tucson than in any other city. I would think that the National Government could use some 1-124 Tucson, Arizona September 8-9, 1975 funds for an arthritis center here; we have the University of Arizona, excellent research teams like the Holbrook-Hill Group, good hospitals and research laboratories, an active chapter cf the Arthritis Foundation, and we have the victims themselves. I would feel better about my taxes if I knew some were being used to help humanity in a positive, thoughtful way. I submit that allocating funds for a "National Arthritis Center" might be the first ster toward conquering arthritis and implementing the National Arthritis Act of January 4, 1975. Without concentrated national efforts, arthritis will continue to c¢ccst Americans money, pain, and heartbreak; with coordinated national programs we shall conquer our number one crippling disease. JAMES A. BRAZEL September 3, 1975 Tucson, Arizona Because I have had rheumatoid arthritis for the past six years, and because I have served as a vclunteer in the Tucson Arthritis Clinic for the past year, I feel somewhat qualified to write to you. Frankly, the purpose of this letter is to appeal tc you for greater assistance for this area. It is no secret that the Tucson area has become a focal point for more and more arthritis sufferers. During this past year I have seen an ever increasing need for medical treatment and surgery; and the amount of suffering just begs for additional research. I have had previous experiences with medical associations and foundations, but I have never seen one run as efficiently as the Tucson Arthritis Foundation and Clinic. It is a joy to know that the assistance and concern is getting down to where it should--the patient! Yes, Tucson needs more medical care, more surgery, and more research. In my opinion, based on their performance, they deserve it! MRS. DORIS D'ATTILIO August 25, 1975 Tucson, Arizona Count me among the nation's twenty million arthritis sufferers. I have had rheumatoid arthritis for 21 years and have done my best to lead a normal, active life as housewife, mother, and citizen. I understand the Naticnal Arthritis Act was signed into law by President Ford on January 4, 1975. Great! I would 1like to see money appropriated for the following important programs: research into a cure for arthritis, more counseling programs set up for patients and their families, transportation for those wunakle to drive, and consultation service for new buildings regarding ramps and parking spaces reserved for handicapped. I am looking forward to attending the public hearing of the National Arthritis Commission in Tucson on Septemker 9th. 1-125 Tucson, Arizona September 8-9, 1975 RAYMOND N. DOOLEY August 16, 1975 Green Valley, Arizona This is to add my name to those who urge you to use your influence so that money will be voted to adequately fund the National Arthritis Act. I have suffered intermittently from arthritis since I was 15 years old. Adequate funds would help the millicns of citizens who suffer with this dread disease. MARY E. DORSEY August 26, 1975 Tucson, Arizona There are so many people here in Tucson who have arthritis. They are all ages. I have rheumatoid arthritis, so I know what a terrible thing it is. It is also very expensive for the necessary treatment and medicine to treat the many tyres of arthritis. The Arthritis Foundation here is truly a blessing, but the Foundation needs much more funds. There is much more research needed to be done and so many more people need to ke helped. Also, more programs could be expanded if only more funds could be available to the Arthritis Foundation. LILY HUMES August 24, 1975 Tucson, Arizona My husband has had arthritis for almost 10 years and has been on disability for about 11 years. When we moved to Tucson at the advice of our physician 10 1/2 years ago, we applied to the Arthritis Foundation for treatment for my husband. We had to go on the waiting list because they don't have enough money to treat all the patients in Tucson who need help. our daughter has had arthritis for almost 36 years. My husband and daughter are badly crippled with rheumatoid arthritis. My husband also has one leg amputated so it has been a real struggle for him. He is being given therapy to try to enable him to walk on an artificial leg. He had had total knee surgery on his other leg. We really thought they would have a cure for arthritis long ago. They sure need money for many things. They need money for research to find the cause and the cure for arthritis. Some patients aren't able to drive or don't have a car, so they need money to transport their patients back and forth to the clinic. They also need money to run the clinic and to pay for therapy for their patients. It costs the Arthritis Foundation a 1lot of money to run the «clinic because so much lab work has to be done on their patients. The doctors give their time and knowledge to help these poor people, so I know they would appreciate more help financially so they can do more for their patients. I do hope more money will be given to the Arthritis Foundation because they need it very badly. 1-126 Tucson, Arizona September 8-9, 1975 JOHN W. MARNELL August 27, 1975 Tucson, Arizona It is my understanding that the National Arthritis Commission will be holding a hearing in Tuscon on September 9, 1975, to review concerns expressed by organizations who see a need for funds to assist in the implementation of the provisions of the National Arthritis Act signed into law by President Ford cn January 4, 1975. The appropriation of funds can be used to assist in the transportation of the arthritis patient, the development of satellite facilities for housing out-of-town patients referred to the National Arthritis Centers for care, and for the training of hospital personnel in the handling of the arthritis patients. We are particularly ccncerned in Southern Arizona because more people with arthritis reside in this geographical area than in the average community. As president of the Southern Arizona Hospital Council, which represents over 30 health care institutions and agencies in Southern Arizona, I wish to emphasize the need for the appropriation of funds so that we may ccntinue with those programs essential to the care of the nation's 20 million arthritis victims. ROBERTA MAXWELL August 18, 1975 Tucson, Arizona A start has been made-now for the follow-up. The National Arthritis Act is law, but it needs funding. There is so much money can do. Maybe we are close to a breakthrough. We need to stop arthritis before it puts so many of us in a wheelchair from which we may never get up. Do what you can for the follow-up. MRS. EMIL G. NELSON August 27, 1975 Tucson, Arizona I am writing you because there is a great need for funds to be used by the Arthritis Foundation here in Tucson. My daughter Marianne has rheumatoid arthritis. We came here to Tucson three years ago because we felt Tucson, because of its dry hot climate, could be of help tc her. At that time she was in a wheelchair. When she first got arthritis we were living in Duluth, Minnesota, and because of the winter, snow, and bad weather, she was unakle to be out of doors. They put her in a wheelchair and her legs were permanently bent. When we first came to Tucson we went to a private doctor, and the cost for gold shots, therapy, examinations, and tests was very high. She went 1-127 Tucson, Arizona September 8-9, 1975 every week for shots and it got so we were unable financially to continue. The doctor recommended us to the Arthritis Foundation clinic for children. The Arthritis Foundation here in Tucson has been a Godsend for us. They also helped us get financial help for surgery to correct my daughter's bent legs. She is now 17 years old and a senior in high school. She still goes in once a month now for gold shots, but she is walking very well. People come to Tucson from all the 50 states because of the climate, and I believe the Arthritis Foundation needs funding to help all these people, not only Arizonians. I hope you will be able to recommend this help for the Arthritis Foundation here in Tucson. MRS. RUTH O'DONNELL August 18, 1975 Tucson, Arizona I, the undersigned, having had rheumatoid arthritis for the past 10 years, am very much interested in what can be done, and what we can do to help eradicate this very painful and crirgling disease. The funds alone that are spent for disability payments and therapy treatments could go a long way to helping find the true cause of the disease. Is it a virus, an infection, or an hereditary disease? Let's find out. Let's get a serum or some means to prevent it. I have been on two experimental drugs and, fortunately for me, one of them helped, but not before having a crippled right hand. The pain is bad enough, but the crippling is even worse. The most frustrating disease anyone can have. The mind stays clear and wants to do and accomplish everyday chores, but the crippling prevents so many from being able to do so. Medical treatments are costly, so let's all help find the cause so that future generations can live without the fear of arthritis. Not just for we old folks but the young children that are afflicted. My permission is granted to use this letter in any way that will help the cause to find a cure. MRS. K. PARTENHEIMER - August 16, 1975 Tucson, Arizona The Southwest Chapter of the Arthritis Foundation here in Tucson has helped me so very much. If I were tc be required to pay for the services they have given me I would never be akle to finance such, for my husband does not make a lot of money. Through the Arthritis Clinic I receive pool therapy twice a week, ACTH shot once a month, blood tests, regular visits to the clinic to see the doctor, etc. The Foundation has also provided me with "helps for the arthritic," such as: metal crutches, built up bathroom seat, faucet handles, etc. 1-128 Tucson, Arizona September 8-9, 1975 I understand the Arthritis Foundation here is operating by private donations. Lots of people come to Tucson for their health, and arthritis is one of the reascns. If more money were available then more people and children could be helped through this Foundation. Please take this into consideration, for so many of all ages and both sexes suffer unmercifully with arthritis. We need money appropriated for greater progress in conquering this crippler. ALLAN PUCKETT August 15, 1975 Tucson, Arizona I am writing concerning the hearings that will be taking place in Tucson on Sept. 9, 1975. I have rheumatoid arthritis and was treated and mistreated by several doctors before coming to Tucson and the Arthritis Foundation about three years ago. They helped turn my life around by diagnosing and treating my illness. Today I hold a full-time job and take care of my family due to the help I received. I believe more research into the causes of the disease is the most important part to concentrate on at this point. Further training for doctors is needed very ktadly also. There are thousands of people going untreated for lack of funds. I would ke among those if not for the help of the Arthritis Foundation and Dr. Fosdick, who so generously gives of his time and talents. I am trying to make arrangements to be off work on Sept. 9th in order to attend the hearings. I feel it is of the utmost importance that Congress appropriate the necessary funds. MRS. MARY A. RAHMING August 21, 1975 Tucson, Arizona I, along with many other people, had thought that when President Ford signed the National Arthritis Act on January 4, 1975, it would provide financial help for the 20-some million people in the United States who suffer from crippling arthritis. It seems that so far, the Act is legislation without teeth; necessary money for more research and training has NCT been provided. Arthritis is not a "romantic" or even a dramatic disease, as are cancer and heart disease, muscular dystrophy, and polio. Perhaps that is part of the reason for the lack of large amounts of money for research, and for training of medical and scientific personnel in this field. It is an excruciatingly rainful, crippling, and frustrating ailment; there is no quick cure; and millicns of sufferers, added together, spend thousands-- nay, millions--of dollars each year in a vain search for an easy and quick way out of their misery. 1-129 Tucson, Arizona September 8-9, 1975 The plight of the person with severe and chronic rheumatoid arthritis, particularly, is like that of no other. He has suffered from a painful and crippling disease that has not had the mercy to kill, but has only wrecked and disafkled. These people need all the help they can get, but much more money than has yet been available is necessary to train physicians, scientists, laboratory technicians, and physical therapists so that they can be helped. There is a lack of money in large enough amounts for the national battle against arthritis; concentration of effort on other and more dramatic diseases has made public funds insufficient for the fight against it. As you know, the National Institute of Arthritis and Metabolic Diseases at Bethesda and the Arthritis Foundation have provided a great d=al of help, but much more is needed. They are sure that, given the means to do it, the road to the discovery of the cause, and with that, the cure, of this disease can be traveled safely and more rapidly than in the past. This means that innumerable people who now suffer can be helped. As of now, a basic core, a permanent skeleton organization, has been trained for the rresent effort to control arthritic diseases, which, incidentally, cost the national economy millions of dollars in lost man- hours of work each year. This cost alone is conservatively estimated at $1.7 BILLION. The total loss to the nation is about $3.6 billion a year, of which nearly $1 billion is spent in medical care. In addition to the cost, arthritis in its various forms is alsc a major cause of family dislocation because so many arthritics are young men with families and mothers with small children to care for. If a commitment is made to get the job done (and I assumed this was the reason for the National Arthritis Act), a great and wonderful chapter in medical science will have begun; a new era will have come into being. But WE NEED MONEY for the rebuilding of people who are crippled with arthritis, and to stop its increase, which is about a quarter of a million people each year. I myself have suffered from chronic and severe rheumatoid arthritis for 20 years, but am not yet grounded, thanks to the help of fine men and women in the fields of medicine, surgery, and physical therapy. But too many people are not as fortunate as I. MRS. JOSEPH SCHEURING August 21, 1975 Tucson, Arizona I have been informed that the National Arthritis Commission will be here in Tucson on September 9, 1975, to hold a public meeting. I wish to submit a written statement that can be included as a part of the record of the Commission. 1-130 Tucson, Arizona September 8-9, 1975 I am an arthritic. For the past eight years I have had rheumatoid arthritis. I am a wife and mother of three teen-age children. I have tried many different medications throughout the years. Some have helped and some have not. I have had excellent care, kut because there has never been enough money for adequate research programs, most of the time it is purely experimental. We must have more research on cause and cure. This, of course, will take funds and established centers for research. Tucson would certainly be an ideal location for such a center because of the number of people affected by this disease living in this area. Several factors contribute to the total picture here. The weather being moderate attracts reople, and the doctors and the Arthritis Foundation are excellent. We have all the ingredients for such a center. Congress must appropriate necessary money to get this program off and running. We have delayed too long now. If each Congressman could see one child that is affected by this dreadful disease, the money would be there. We must and we will find the cause and the cure. ALMIRA SCHINDEL August 26, 1975 Green Valley, Arizcna ’ I understand that a Committee is c¢cming to Tucson, Arizona, to investigate the need for funds for the Arthritis Foundation. If anyone has a doubt that money is needed for treatment or research, I suggest they spend an hour or two in a clinic or the waiting room of the Holbrook-Hill Medical Group. I have rheumatoid arthritis and have had it for 22 years. Unless you have it you will never know the pain it causes or the heartache the victim and his or her family experiences. It is a very costly disease. There is no hope of a cure and the only relief one gets today is from surgery. Surgery of that type is very expensive. I know because I have had surgery five times on my hands and feet. It is a good business for the surgeons, but it is hard on the patient. It drains the family purse and puts a strain on emotions and family relationships. It costs many man-hours of work, which is a loss to both the individual and the employer. Also, an arthritic has low resistance to infectious diseases, and therefore he usually ends up with complications. I have seen children of two years of age and teen-agers who were badly crippled from this disease; my heart aches for them for they have no future. Also, many families cannot afford the treatment of medication and physical therapy that is involved. As I grow older (I am now 62), my limited income may not be able to afford it either. My only hope is that soon something will be discovered to stop this disease. 1-131 Tucson, Arizona September 8-9, 1975 Therefore, TI urge you gentlemen to be in favor of allocating much money for intensive research to find an answer for this painful and crippling disease. It costs the American public billions of dollars every year, money that could be used for other worthwhile projects. It takes so much money for my own treatment that I cannot afford to donate any to the Arthritis Foundation. It seems people who have had no experience with the disease do not seem to think it important enough to donate, as the disease does not kill, but believe me there are many times one wishes he were dead. It is my firm belief that if an all-out, intensive research program was instigated, as it was in the case of polio, we would soon have an answer for this disease. I appreciate your courtesy in listening to my views and do hope you will give serious consideration to help fight this crippler. MORRIS B. SMITH August 21, 1975 Tucson, Arizona It is my understanding the Naticnal Arthritis Commission will be conducting public hearings in Tucson, on Tuesday, September 9, 1975. I regret to say that due to previous campaign commitments, I will not be able to attend personally. We will, however, have representatives of our organization in attendance. In lieu of a personal appearance, I do wish to go on record indicating the tremendous need for services to arthritics in this community. I am sure you are aware we rrobably have more individuals af fected with arthritis in this community cn a per capita basis of any community of its size in the country. Over the years, the Arthritis Foundation's Southwest Chapter has been providing a tremendous service far in excess of the limited funds they have available. It would seem to me most reasonakle if we were to expect that here in Tucson, funds should be provided for the care of arthritic individuals who come to this community from all over the United States. Tucson alone cannot meet this most important need. We appreciate the Commission's visit to Tucson. I regret I will not be able to join with yc: at this time. 1-132 Tucson, Arizona September 8-9, 1975 MRS. CLAIR STRCUP August 21, 1975 Tucson, Arizona I was thrilled to hear that our President had signed the National Arthritis Act. It is a step in the right direction, but it will be worthless unless funds can be provided to support it. Living in Tucson, Arizona, where many arthritis victims come for relief, I have seen the damage that arthritis causes in all age groups. The heartbreak of one of the little eight-year-old Brownies in my Girl Scout group whc could not play the games with the others, to the misery of the older people in church never knowing when they will have a good day so they can have a few hours of relief from pain. Then there is the agony and grief of watching their hands become crippled and pulled out of shape while they are hoping that something will be found to arrest this while their hands can still hold a pencil or they can still turn on the water to get themselves a drink of water. We need to provide funds to find a way to stop this pain and crippling of all ages of peorle which is many times worse than death. MRS. AMPARO STUART September 8, 1975 Tucson, Arizona How I feel, and millions of arthritis victims who are struck with this terrible disease--that if reople would only realize the agony, the frustration we go through, they would really try to help us. We are in terrible need of funds. Sometimes I go without my medication because of lack cf funds. Where are all the promises President Ford promised? They keep passing the buck while we try tc survive with meager funds and do without. I myself have rheumatoid arthritis, the worst of all, and with five children to take care of. Also, my huskand is blind. I have to take care of him, too. But I do the kest I can. We would like our own clinic, not to be pushed back and forth from room to room. It is a long walk from the clinic to hematology. It is time for some action, not fromises. Heaven knows how the arthritis staff have managed; they're a bunch of beautiful, kind, and understanding people. They always treat you like a human being, not only like a number. I am very greatful for the help and understanding they have given us. These people deserve better facilities to work with. I sincerely hope we gain our goal with God's help. Please. Us millions of arthritics, we're 1-133 Tucson, Arizona September 8-9, 1975 in desperate need of funds. God give you the strength and will to help us. FRANCES TRULOCK August 15, 1975 Tucson, Arizona I would like to say that I feel Congress should provide more funds for Arthritis. I have lived in Tucson, Arizona, since August 1958. I came to this climate on the advice of my doctor in Illinois. I have a lot of friends who suffer constant pain because of this disease. I am to enter St. Joseph Hospital on August 18th to have surgery on my feet, August 19th, for extensive arthritis. I love walking and do so, daily; sometimes three or more miles a day; so you see why I have such a personal interest in the Arthritis Act signed by President Ford, January 4, 1975. I hope you will do all you can to help underline the lack of funds. BETSY EVANS September 19, 1975 Tucson, Arizona I have had rheumatoid arthritis most of my life and have learned to adjust to the many inconveniences of the kusiness world. The employers! understanding of the arthritic employee is really deplorable. However, I have been fortunate enough to find a VERY understanding employer who has me on her payroll. Recently my arthritis "status" changed from stable to active, but my boss was very sympathetic towards my hokbling around the office and even helped me dcwn the kack steps at night! So much more employer education should be done, also better school facilities (I attended normal high school in a converted coat closet with two handicapped teachers--under Special Education), and more emphasis should be placed on learning skills that could eventually lead to gainful employement. I am very proud of the praise my boss gave me for work done recently during my flare-up. Because most arthritics have been too dependent (on doctors, treatments, medicine, and families), it really is music to one's ears to receive praise for a job well done. I was given cortisone with success--now I understand there are serious side effects. Why can't these ke removed so that it can still be given safely? Instead of expensive medications, why don't more physicians advise using the best anti-inflammatory agent available, aspirin or Tylenol? In conclusion, there is a matter of extreme importance that is no closer to being solved than when I got the disease 32 years ago; that of research to find the cause and/or cure. Let's lick this thing in my lifetime. Today I am 34, so you have plenty of time. After all, the polio crisis has been licked, muscular dystrophy has its own telethon which brings in millions of dollars nationally, and the childhood 1-134 Tucson, Arizona September 8-9, 1975 diseases-measles, whooping cough, dyptheria, and scarlet fever--have been conquered. CORINNE FAIR Sierra Vista, Arizona Though I have been privileged to speak earlier, I feel perhaps the following may be useful tc you. The self-help group in Sierra Vista, Arizona, began in January. Programs have included: one on physical therapy, home modification, quackery, and counseling from the RMP Arthritis Services Program. From the local community we have had: fire safety, vacations and travel, family counseling, architectural barriers, medical deductions, and one planned on medical insurance. We have a loan closet that we have collected by donations from citizens and service groups. Several patients attend a physical therapy class once a week with the local PT at Community Hospital. A committee has been formed in the community (architect, persons with arthritis and polic, members of group tc aid mentally retarded, member of Army community service committee for handicapped) to educate the community about architectural barriers and begin programs to reduce them. Other groups will join wus I'm sure--Chamber of Commerce (Toastmasters is providing a speaker's bureau), media, service groups, and medical personnel. We provide patient and community education through available pamphlets at our meetings, through newspaper articles (about one every three weeks since January), public service announcements, and interviews on local radio (4 half hours in 9 months). A six-week set of counseling sessions for couples or families will begin in October with a local family counselor. ASP has provided consultation clinics. These need to be made known to the community so that patients can talk to their physicians and get into the clinic. Our community is the largest in the county (20,000 people) and is a regional shopping center and could be a center to dispense information and education. One program that was very successful was a show and tell about self- help devices at cne of our meetings, and we plan a tour of homes in the future. 1-135 Tucson, Arizona September 8-9, 1975 MIKE HALEK September 9, 1975 Some Needs of the Disabled in Tucson: In behaviorial sciences there is a concept of priorities toward the fulfillment of individual happiness called "Maslow's Hierarchy." The hierarchy is written like this: self-achievement social-interaction safety physiological Let wus agree that each individual must fulfill, to some extent, their needs on the lower levels before attaining happiness with self- achievement. Peorle with arthritis have more difficulty and must spend a greater amount of time to satisfy the needs of each level. People with arthritis usually must spend more time fulfilling physiological and safety needs than the average person. I feel that the objectives of any services for people with arthritis would be to aid them with fulfilling their physiological, safety, and social interaction needs. An example of help with physiological and safety needs would be home and auto modification to aid the person to become more independent and consume less time with these levels. An example of help with social interacticn needs is counseling and supervised group discussions. I was fortunate in attending a discussion group this summer that was sponsored by the Arthritis Services Program. I feel these group discussions led me to a better understanding of my specific proklems and brought out many of the differences and similarities among other people with arthritis. Besides these areas I feel that there should be a greater coordination among all the services and facilities for the disabled in Tucson. SHIRLEY I. CASSATCA August 26, 1975 Bisbee, Arizona Mr. Benson of the Tucson, Arizona, kranch of the Arthritis Foundation asked wus to letter to you. I wrote you a letter I considered a statement because I live 100 miles from Tucson and cannot attend the meeting as I am unable to drive in downtown Tucson. My statement is that I would like to see you do all that can possibly be done for people suffering from arthritis and for further research. At the present time I have arthritis throughout my body, and I am in constant pain and taking expensive medicine. My husktand is a middle-class man that makes about $12,000 gross. After all the deductions are taken out, and my arthritis and other medical conditions are costing us $100 a month, we 1-136 Tucson, Arizona September 8-9, 1975 cannot afford to pay for arthritis care. I would like to see the middle- class family, the elderly, and the poor helped all that they possibly can be helped. TI have had arthritis for 20 years and each year it is getting worse. I am not a deformed arthritic at this time, but just a person that suffers daily, some days worse than others but all days with enough pain that I am only capable of doing part of my own housework. The constant pain is hard on your nervous system. I would like all the aid possible given to all the people possible, and if some people could be accepted and maybe pay $10 or $15 a month I would like to see these people helped. People who are wealthy should be helped but should pay whatever portion they are capable of paying. I would like this to be considered a statement because I am unable to attend the meeting personally. BETSY EVANS August 18, 1975 Tucson, Arizona Between my rheumatologist cousin and the Executive Director of our local Arthritis Foundation chapter I have been talked into writing this. I do not wish to testify at the September 9 meeting, but do wish the following to be included in the minutes. I am 33 years old and have had rheumatoid arthritis most of my life-- having developed it when I was just a few months old. Through medication (which I am now off of) it has been controlled, but I have some minor handicaps which have severely "hobbled" me in my search for a job. I was a medical secretary for two years but then my koss retired and moved to a different state so I was again forced to look for work. Due to my experience I thought this would be no proklem. Today I am still looking-- five years since the time I was employed. My small bank balance prevents my parents from getting any financial assistance from Social Security (as a disabled person living with their parents). Because of my minor handicaps I am forced to lie on application forms; if I stated that I had arthritis TI would not even get an interview! My long-term boss was a former physical therapist and had the utmost respect for both my willingness to work and learn and my need for gainful employment, I also worked as secretary to the Physical Therapy department of one of our hospitals, so have proven myself to be capable in an office. One hears the phrase "Hire the Handicapped," but it has not worked in my case. The only facility that would definitely "Hire the Handicapped" is a firm selling light bulbs by phone. My co-workers would all be severely handicapped. I don't wish to go through life being linked with those who can only sell light bulbs while I can: type, file, fill out insurance forms, answer the telephone, talk with patients, diplomatically turn "detail men" away when my boss is too busy to see them, etc., etc. Cancer has been called the "silent killer" and epilepsy is considered a "silent disease." I think arthritis should also ke called silent, as who wants to declare it and probably lose a job? 1-137 Tucson, Arizona September 8-9, 1975 In closing, let me assure you I don't want to testify but do want the above included in your minutes. DALE E. KRATCHMER August 18, 1975 Tucson, Arizona I am writing this letter because I hope it will help other arthritis patients to receive better treatment and also help with their employment problems. I have been afflicted with rheumatoid arthritis for the past 23 years. On June 14, 1975, I migrated from Pine City, Minnesota to Tucson, Arizona, to see if the drier climate would help me. So far I have not felt too much better because I arrived during the rainy season. After a month of waiting I started treatment with Dr. David Templin of the Rheumatology Clinic at the Veterans' Administration Hospital in Tucson. It is the first time over the last 23 years that I have been treated by a rheumatologist. Since I have been going to the Veterans! Administration here they have lost my old medical records and some x-rays that were taken about three weeks ago. This certainly does not help Doctor Temglin, who is trying very hard to help me. He has started me on gold therapy and I have high hopes that it will help me. I have lived here in Tucson for two months and have been trying to find a bookkeeping job without success. First of all, jobs are very hard to find right now. But it makes it much more difficult when you have arthritis and you are limited in what you can do and accomplish. It Js hard to find an employer who is tolerant of an employee who has to take time off to go to the doctor once a week or one who doesn't feel well all the time and cannct compete up to par with the other employees. How do I find someone who will accept me as I am? My first ambition as a young man back in Iowa was to become a successful farmer. But after being interrupted by a hitch in the Army and then becoming ill with arthritis, I decided to give that ambition up. After being rehakilitated for a bookkeering career in 1953, I have found out that it was not the best thing for me. Sitting at and leaning over a desk for long periods had not been easy. So I have been wondering if I should try to get a job as a bookkeeper or go to school for a new profession. I have been trying to get the Veterans' Administration to help me since last January without any success. 1-138 Tucson, Arizona September 8-9, 1975 MRS. FRANCES PAULY August 25, 1975 Tucson, Arizona I arrived here in Tucson in Aug 1958, and have run the gamut of surgery, from having both knees straightened to two (arthoplastias?) (right and left hips). I was able to cover the surgery and hospitalization costs with my then Health and Accident policies. I have seen improvement in the quality of arthritis care and aid. The thing that puzzles us most is that when I reached the age of 65 and was eligikle for Medicare, the Arthritis Foundation cut me off completely; and we are stuck with a steadily rising medical cost. We are on a low fixed income (my husband and I get $197.50 per month in Sccial Security Disability). T appreciate all the help I have received in the past from the Foundation, but could stand a bit more help for the aging arthritic, low income bracket, geriatric. Suggestion: The Arthritis Foundation needs to have its own hospital, complete with laboratory and therapy department. ELSIE MARIE TESTERMAN August 26, 1975 Tucson, Arizona Regarding our Arthritis Foundation of Tucson, Arizona, I have been in their care for two-and-one-half years and see the patients they treat-how well they are getting along (myself included), then how sick they can be and the care they can get only through the Foundation, and then I see them walking again and without the their crutches. These are all ages. I am so thankful for my help. I have not Leen one of the worst affected patients, but if I had not gone to the clinic when I was bad, I would never ke able to do my hcusework and other things I do. I have osteoarthritis and went to the University of Arizona for therapy the first year. I could not walk and the last day I had worked, July 16, 1970, my hip would not permit me to take another step. The University did all they could. I did walk on two canes and when they had done all possible, they recommended me to the Foundation. I am so thankful TI am as well as I can be. I worked on the election board twice last year. The first thing I had tried because the arthritis had wrecked my nerves. It affects a person in so many ways. Please, won't vou urge President Ford to give the Foundation a grant again. It certainly will save lots of Medicare expense to the Government and so much suffering. Thank you for giving us the chance to show you that we need all the help we can get. My husband and I are in the lower income bracket and I have been receiving disability since 1972. So I can't donate the amount of money I would like to. Please help us. 1-139 Tucson, Arizona September 8-9, 1975 BILL WCODS My name is Bill Woods and I have worked the past year in an Arthritis Services Pilot Project in the southern six counties of Arizona. My function in the project was to serve as the Home Modification and Self- Help Aid Specialist to develop 24 demonstration homes. I think that most everyone would agree that the majority of funding from the Arthritis Act should be channeled into basic research to find the causes and cures of the various forms of the chronic illness that we collectively call arthritis or rheumatism. But since no vaccination exists and no healing treatment, we must also pay attention to the daily maintenance of the arthritis patient in a way in which a minimum of damaging effects occurs to the involved joints of the arthritis patient. This maintenance includes a schedule of therapeutic excercises and proper techniques in using tools in carrying out daily living activities taught and supervised Ly occupational and physical therapists. It is also important from a logistical and psychological standpoint to enable a person involved with arthritis to be as independent and self- sufficient as possible in carrying out their specific living activities, The first and most important step for a person to become more independent is for them to set up goals that they wish to achieve. Often counseling from a trained person or therapy group will help motivate a person to set up their own goals of independent achievement. Then, with this accomplished, the only barriers to greater independance and improved joint protection and safety arise from the physical barriers imposed on them by architectural and mechanical karriers in their homes and in public places. The list of these barriers is very long and specific to an individual's personal handicaps, but there are solutions to all of these problems. Some solutions are very simple and inexpensive, others are more complex and costly. These are the types of problems with which I had first experience with last year. From this experience I would like to suggest a few ideas for you to consider. First of all, I would suggest that you would include in whatever plans you develop for Arthritis Treatment Centers in this country a prcvision for a "Technical Services Staff." I would envision their services to be: i An evaluator with a kackground in both the physiological and technical prcblems who would be able to consult with people as to solutions to specific problems such as: 1-140 Tucson, IT. 111. Arizona September 8-9, 1975 a) Architectural Lkarriers 1) bathrooms 2) stairs 3) chair & bed heights 4) switches to appliances 5) handles and doorknobs 6) appropriate sized and placed doors and halls b) Household organization 1) funiture and tool arrangements 2) clothing & other storage 3) planning of work and daily schedules c) Car and transportation problems 1) loading wheelchairs in vehicles alone 2) getting in and out of bed, on & off toilets Problems in dressing and personal organization and training to relieve stress on joints is traditionally a function of an occupational therapist but a team approach with a technically skilled person would be of value, as we have found in our own experience this past year. A staff of at least two technically skilled people who would be able to install or develop the solutions conceived of in the evaluation of the person's proklems. This staff is necessarily small, should be picked for their having a wide number of technical skills, i.e., plumbing, carpentry, electrical, and mechanical skills. The developed solutions should be sold to the people on some sort of sliding ray scale according to their ability to pay, but I definitely feel that their having to put some money toward the solution will increase the interest of a person in gaining the precise solution that they want and make them more eager and involved in learing to use the device. This also opens up the possibility of the service being self- supporting although non-profit. The staff of this services group should also be actively involved in research in the areas of: a) Finding sclutions to handicapped problems fcr arthritis for which nc sclution has yet been found in the home, car, and public places. b) Designing modifications for appliances and sending the solution to the manufacturers to get the problem solved at the source. c) Consulting with physicians and surgeons in the development of prostheses for arthritis patients with the specific responsibilities of analyzing the devices through application of engineering techniques as to its structural validity, reliability, material selection, manufacturing 1-141 Tucson, Arizona September 8-9, 1975 (production) problems, or any other technical problems involved with the prosthesis design and development. IV. Appropriate shop and transportation to support the above functions of the staff to: a) To build prototypes of soluticns when they are not available at reasonable prices. b) Aid in the design process ky giving empirical data. C) Avoid problem of private ccmmercial industry of not wanting to deal with some problem solution because they are too unusual or too small a job. Finally, I would like tc further suggest that the location of such a staff of technical services would best be situated near a university campus where the additional resources of the institution could Le called upon; both in equipment sense and in consulting with many specialists close at hand as to the solution of a specific problem of design and developemnt, i.e., electrical, mechanical, civil, chemical engineering architectural department, etc. Also, the student population could be used to develop many solutions as thesis and project topics. MRS. RAYMOND ARSNEAU August 26, 1975 Tuscon, Arizona I am writing as an arthritis victim who is in the early stages and who wants to be counted as one who hopes for more money from Congress to help learn more and hopefully find a cure for this dreaded and widespread affliction. Also, I hope to be able to attend the hearing here in Tucson on September 9. However, I do not care to present testimony at that time. It is still comparatively new to me and I'm sure there are many who are anxious to testify and are more knowledgeable and experienced. Good luck to you, and thanks for your efforts. LONA BASON August 27, 1975 Tempe, Arizona This letter is in answer to your article about arthritis in the Tempe Daily News. I would like to go to Tucson on Tuesday, September 9th, to give testimony on arthritis. I have had it very badly and am feeling pretty well now. Thanking you for your kind consideration, I will be waiting to hear from you. Incidentally, I lived in Baltimore, Md., from 1949 to 1963 and I was in very bad shape when I lived there. 1-142 Tucson, Arizona September 8-9, 1975 God bless you in your work. MRS. L. M. BROWN August 27, 1975 Tuscon, Arizona It was a pleasure to have a letter from the Southwest Foundation saying Congress had made a start toward helping arthritics. There are so many helpless ones here. Most are in less pain and at least somewhat improved while scme make amazing recoveries. We have heard so much that has keen done for heart, polio, and other patients, but in Tucson, it is the arthritics who are most in evidence and often short of funds. The climate, the «clinics, hospitals, University Hospital, and many dcctcrs who are accustomed to treating them combine to make Tucson an ideal place for a center. FRED W. CLOUTHIER August 19, 1975 Bisbee, Arizona Am in receipt of your Bulletin pertaining to a meeting of the National Arthritis Commission coming to Tucson on Tuesday, September 9, 1975. If my physical condition remains the same as it is at present, I know definitely that I will not be able to do any traveling as I am too weak and pains in my hip, left leg, and back make it impossible for me to act and to be of any help in a gathering. However, at the conclusion of the public gathering, I would appreciate receiving a copy of the final report covering the entire meeting. I contribute occasionally toward the Foundation. MRS. R. FRASER August 25, 1975 Tucson, Arizona I think there should be something that can be done to help us arthritis sufferers. There are so many sufferers. We think there should be funds approrriated for it. JEAN HCUGH Tucson, Arizona Let's get some money apgropriated so we can make some headway toward wiping out once and for all the nation's number one crippling disease. The disease that has engulfed the last 24 of my 36 years of life (as well as 20 million others). The disease that not only cripples but also causes unbearable pain. 1-143 Tucson, Arizona September 8-9, 1975 MARY L. KEAVENY August 15, 1975 Tucson, Arizon I am sorry we will not be in Tucson September 9th, but know what arthritis is all akout, being a victim fcr over 25 years. I personally know the expense involved plus the pain. Have been treated by both civilian doctors and later by the army. We are fully aware of the tremendous expenses incurred in the treatment of arthritis. Coming to warm climate has helped, but is no cure for me; but even relief helps. Also, realize others are not so fortunate. Want to extend our sincere wishes tc the organizaticn for success in your worthy mission toward helping the victims who are afflicted with this extremely painful disease. BESSIE KING Tucson, Arizona Having been a rheumatcid arthritis victim these past 25 years, I want you to know the expense and suffering I have endured over these years cannot be told in just a few words. And through all these years the medical treatment is pretty much the same that we started with 25 years ago. And in spite of all the medical treatment, I am today a hopeless cripple. I am sure there are thousands cf arthritis victims like myself who will suffer more from lack of medical care due to the severe cutback by Medicare. I, along with many others, do hope our Representative in Washington will consider this problem that has crippled so many people with a generous apgpropriation for research. DAVID LESLIE August 23, 1975 Tucson, Arizona I am a resident of Tucson, Arizona, and would like to tell you my feelings about the lack of funds to help the arthritics of this community. Our city has an Arthritis Foundation with a staff that is capable of educating people suffering from arthritis how to care for themselves, a medical University Hospital that does research in rheumatoid arthritis, also doctors that are specialized in rheumatology. If we could only secure funds tc carry on the effort to eradicate the nation's number one crippling disease. I cannot give you the arthritic population of Tucson but I am sure it is one of the largest per capita in all the states. Anything you might be able to do to help Congress see how Lkadly we need financial help will be greatly appreciated. 1-144 Tucson, Arizona September 8-9, 1975 MARIAN LUPU August 28, 1975 Tucson, Arizona I was delighted to learn that your organization selected Tucson as a site for one of your series of public hearings on the needs of the arthritic person. Our organization has recently completed a study on a "Plan for a Long- Term Care for Pima County," which addresses the needs of all in the community and is based on "hardcore" data of a large segment of the population. Our agency, acting as an advocate for the elderly, has considerable knowledge of the needs of the elderly and the disabled, and I feel that I could present a concise summary of these needs, and how our local requirements relate tc those of national scope. If you feel that I could make a meaningful contribution to your program, I would be prepared to speak for not more than five minutes at a time scheduled by you. T look forward to the meeting and will cooperate in every way possible with Mr. Benson, Executive Director, Southwest Chapter of the Arthritis Foundation, in assuring maximum attendance. Please let me hear from you as to the time I will be scheduled to appear, and advise if you feel my proposed remarks will be appropriate. JOHN H. MARTIN August 20, 1975 Tucson, Arizona Concerning the possibility of my appearance before the National Arthritis Commission on September 9, 1975, I offer the following statement of testimony relating to my personal experience with arthritis: Early in 1970 I joined the ranks of the many thousands unemployed aerospace scientists and engineers. This situation persisted with my being totally unemployed or grossly underemployed until I finally becdme disabled. My battle with rheumatoid arthritis began in April 1970 with its appearance in both feet. By the end of August 1970, the condition had spread throughout my body. Because of the employment problem my family returned to Virginia in August 1970. Soon after the move I sought medical aid, choosing a general practitioner at random from the telephone book. Needless to say, this was a mistake. However, at that time I had no one to advise me otherwise. I lost precious months in the effort to gain control over the disease. Between September 1970 and January 1975, I spent nearly $3,000 in fees to licensed medical doctors and for medicines and treatments prescribed by them. I never yielded to any form of friendly advice or quackery. During the spring of 1971 I learned of the Arthritis Foundation and contacted them for advice. In June 1971 I became unemployed once again and soon after found that I could no longer pay for medical treatment. In the fall of 1971 I sought aid from the Arthritis Foundation in Richmond, 1-145 Tucson, Arizona September 8-9, 1975 Va. Because of the backlog of applications, a direct result of lack of funds, I was unable to attend any of their clinics. My financial situation dictated that I ke unattended by the medical profession again. By this time, January 1972, my desire and ability to work was very limited although I had not yet suffered any known damage to joints or organs. Even with medical care my condition continued to deteriorate. However, during the spring and summer of 1972, I went into a remission and began to see improvement to the point that both my doctor and I felt I would surely overcome the arthritis. By that fall, the deception of arthritis was made manifest. I was forced to retire from any work for which I was trained in December 1972. I tegan to walk with the aid of crutches. I then sought assistance from the Virginia Department of Vocational Rehabilitation for some limited form of work and for medical care. The Arthritis Foundation was yet unable to help me. Upon the advice of the voc. Rehab. office I applied for and received disability insurance from Social Security. In March 1973 I began gold therapy, sponsored by Voc. Rehab. The dosage was built up to approximately 50mg of gold salts every two weeks. I began to have severe flareups and by May 1973 was no longer able to drive a car nor was I able to go up or down stairs. In July 1973, my family relocated to Tucson, Arizona with the hope that the desert climate would be beneficial to my health. Up to that point all medical treatment, which had included 1Indocin, steroids, aspirin and gold, had failed to control my arthritis. By this time I had beccme confined to use of a wheel- chair. Upon my arrival in Tucson, I was thoroughly examined by a reputable rheumatologist. He doubled the amount of gold; that is one injection of 50mg each week rather than every two weeks. In addition, he began a program for my withdrawal from steroids. I had been taking between three to six stero-darvon tablets each day since April 1972. I experienced a second major flare up which appeared to me more related to the gold than to the steroid withdrawal. This flare up, which began in mid August 1973, after about three injections on the accelerated schedule, had pretty much subsided by October 1973, although I was still continuing the withdrawal from steroids. During the spring of 1974 my condition appeared to be stable and the amount of the gold injections were increased from 50mg to 70mg each week. By this time I was completely off all steroids. My knees became virtually locked together. I was limited to a scrt of shuffle walk with the aid of crutches and was not able to lift either foot more than an inch or so. My arms were nearly useless. I had a toxic reaction and the gold injections were reduced to 30mg each week. The flare up subsided and by October 1974, I was making some significant improvement. Most of the arthritis pain and swelling was gone. By this time my funds had Lecome exhausted. I could no longer continue to pay for treatment of arthritis. I applied to the Southwest Chapter of the Arthritis Foundation and kegan to attend clinic in January 1975. I was maintained on 30mg of gold each week and my condition slowly improved. In March 1975 I began to take physical therapy in a warm pool. 1-146 Tucson, Arizona September 8-9, 1975 This was also made possible by the Arthritis Foundation. By April I was able to walk up the ramp of the pool with the aid of crutches. My gold injections were reduced tc two-week intervals. By June I was no longer confined to the wheelchair. I now visit the Arthritis Clinic at three- week intervals for a 30mg gold injection. I can now enter and leave the therapeutic pool via the stairs; about eight steps with six-inch risers. Further, I can comfortably walk about one city block and stand for about 15 minutes with the aid of crutches. Should my condition continue to improve as it has during the past six months, I hope toc begin to drive an automobile this fall. Further, as my stamina, agility, and strength returns, I look forward to undertaking gainful employment within the next six mcnths to one year. This hope would not be mine had the clinic and therapy not been made available by the Arthritis Foundation. Until a few months ago I was faced with the prospect of undergoing an extensive program of restorative surgery which had been estimated to require at least two-and-a-half years prior to my return tc work. My testimony points to the need which even the most educated and the most highly trained people, those who have been accustomed to high income, sometimes have for the services of the Arthritis Foundation and to the rather dire consequences resulting when such service is not available. ROSE MILITELLO August 25, 1975 Tucson, Arizona Will try to express how I feel and prayers for a better future for countless of arthritics. I have been one fcr 27 years and like countless of others had tc work for a living and would still be working if I were able. When pains first started in 1948, I tried not to give in. Little did I know these were just little aches that gradually would travel to other joints and aches turning to gains. Well-meaning friends would tell me of quick cures, tried them all. Then about this doctor who would cure me. He was a quack and I did not find out until even talking was painful; and no funds. A friend took me to a real doctor; he treated me on the "Pay when you can basis." A.C.T.H. started me to walk a little easier. Six years ago I 1lcst my jok and could not find another. My world crumbled. (Had several surgeries that helped some in early 1960s.) My sister sent for me, thinking this climate would help. Was dreaming of going back to work, but instead the hip and knees started bothering me. A neighbor advised me to call Arthritis Foundation. Had not dreamed there were so many arthritics and this was just at the Arthritis Clinic. Oh how they help, but still much is needed, so very much. -1-147 - Tucson, Arizona September 8-9, 1975 My sister had to take on an extra job, with cost of food, rent, utilities, etc. going up. She also has arthritis. She says pains are not bad, but neither were mine when it first started. Am praying it does not get worse. I was once told, "Have respect for arthritis, as you are going to have it for a long, long time." Mr. Wartofsky, please help all arthritics make a liar cut of this person and stamp out quacks through the Arthritis Foundation. MRS. J.E. O'BRIEN August 25, 1975 Tucson, Arizona My 16-year-old daughter had been suffering with pain from joints and a rash for over a year. I took her to two doctors. The first one gave her a few tests and could find nothing wrong with her so he released her. Then I took her to ancther doctor and he also took tests and the same as the first doctor, he found nothing wrong. He told her if she would just forget about it, the rash and swelling might go away. I suspected arthritis myself, so I took her to Holbrook Clinic where she was given numerous tests and examined thoroughly. The doctor found that she had rheumatoid arthritis in the first stages. He recommended her to the Arthritis Clinic where I now take her. She takes 12 aspirin a day and the pain, swelling, and rash have left her body as of now. I think if there was better education on arthritis, physicians could ke better trained tc reccgnize arthritis. I think Tucson is the ideal place to establish a center, because we have a medical school. The people at the medical school are interested "in arthritis, but need more funding. They need funds for education for physicians. MRS. MILDRED PETROVICH August 16, 1975 Scottsdale, Arizcna This may be premature or just a coincidence, but here goes: I am 59 years old, have arthritis in lower back and my left foot. In June, I started taking one taklespoon of miller-ground bran every day. About a week passed, I was akle to turn in bed: without the agonizing, torturous, and difficult task it had been previously. Now, only occasionally do I get a twinge in my lower back as a gentle reminder. Around my left ankle, I occasionally get the tightened band clamp, but not the excruciating, Lkone-tearing pain I formerly had in the foot. I do not take aspirins cr any drugs for arthritis. 1-148 Tucson, Arizona September 8-9, 1975 SANFORD H. ROTH, M.D. August 21, 1975 Phoenix, Arizona This is a written statement for your records for forthcoming hearings in Arizona in relation to the Arthritis Act. As previous State Chairman of the Governor's Conference on Arthritis in Arizona, we should like to note that as early as March of 1967 we assembled medical, paramedical, and lay workers interested and participating in arthritis programs, to evaluate the proper role of Federal, State, and local agencies in relation to the existing medical programs in the management of arthritis in our State. I am enclosing a copy from the report of the proceedings which is also now part of the permanent record of the arthritis section of HEW. To briefly summarize from some of the statements in this report: 1) Patient care. Since the initial statements made in this section there has been a steady increase in manpower and facilities dealing with arthritis. We have also, through the two chapters of the Arthritis Foundation in Arizona, taken clinics and lecturers out to the smaller communities; there is an ongoing Arthritis Foundation Clinic available in both the Phoenix and Tucson areas that all local rheumatologists participate in. In addition, there are private medical facilities, such as our own, which concentrate totally on arthritis with a team effort including: physical therapy, group therapy under psychiatric guidance, orthopedic reconstructive surgical consultations, and in our area, an associated in- patient Arthritis Unit with paramedical wcrkers trained to deal with the problems of the arthritic, a physiatrist who works solely with the arthritic, and group therapy on an in-patient basis under the management of the same psychiatrist that directs our out-patient program. After visiting many facilities throughout the country, we believe that Arizona is in the forefront in measures directed towards patient care. Unfortunately, with the exception of nursing homes and the limitations in their custodial management of patients, we have no "midway" arthritic facilities which would allow the arthritic patient to progress from the major expenses of a major hospital facility towards a low-cost staging center in which rehabilitative care would be available and the patient specifically directed towards stages of self-care to a point where he would be coming in on a daily basis to spend the day in the facility, but be able to stay in his own environment. A Visiting Nurse service helps somewhat to bridge the gap between hospital, home, and nursing home, but because the problem of the arthritic is so major in Arizona and the costs related to disability are so great in the rehabilitation program of the arthritic, we believe that such a specialized facility for the arthritic is warranted in our area. 2) Education and training. Both through the medical school and through our separate postgraduage programs in Phoenix and Tucson, ongoing programs, clinics, and symposiums in arthritis management and treatment are part of our year-long schedule. We believe that we are overcoming some of the training problems reiterated in this section, but continue to need more specialized paramedical personnel. 1-149 Tucson, Arizona September 8-9, 1975 3) The lay public. Quackery and misinformation surprisingly continue to be a problem and even a growing one at that. At our conference we were concerned that we could dc little to control quackery and medical abuse problems across the Lkorder in Mexico other than working with our rheumatology associates of the Mexican Medical Association. However, we are making efforts to remain in close liaison with the mass media to correct misinformation that sometimes reaches them. With the evolving role of third-party insurance and perhaps soon National Health Insurance, funding sources for patients seem to be improving. Nevertheless, it does appear to be especially oppressive towards patients who do not qualify for the very excellent county programs available in our area through our Arthritis Foundation Clinics and at the same time lack third-party coverage for rehabilitation and in-patient programs because of pre-existing arthritis and yet limited income. Since arthritis is a disease that often involves the bread earner or the housemaker, this is an especially relevant problem to be still resolved. The growth of our arthritis clinics and rehabilitation institutes has been sustained as envisioned in the initial conference. 4) Research. Primarily through programs involving the medical school and our major arthritis clinics, investigative efforts both in the clinical and basic science areas related to arthritis continue to be actively pursued. It is hoped that through the Arthritis Act support for such programs will be improved since Arizona provides access to one of the most important arthritic populations in the country. As co-director of the American Rheumatism Association Medical Information System (ARAMIS), we are pleased that the Phoenix Arthritis Center will be a participating member of the initial eight center program constituting a data base for arthritis research in the United States. The support for this is a line item of the Arthritis Act and we strongly feel that these efforts will evolve a better understanding of the nature of the rheumatic diseases that presently afflict our population as well as a critical evaluation of present methods employed in management. As the State Chairman of the Governor's Conference on Arthritis and the Chairman of the Council on Arthritis which subsequently met to implement these recommendations of the conference, I believe we have witnessed a period of sustained progress in our mutual efforts to better deal with this major crippling problem. We shall be pleased to cooperate in every way with your forthcoming efforts. Thank you. 1-150 Tucson, Arizona September 8-9, 1975 SEVEN ARTHRITIC LADIES August 27, 1975 Tucson, Arizona This letter is being written in response to the request that concerned arthritic patients should participate in the survey and discussions planned by the National Arthritis Ccmmission. It is our profound intention to make known some of the needs and problems encountered by the arthritic and offer recommendations to rectify such problems. Tucson prokakly has more arthritis patients per capita than any other city in the United States. Consequently, we are fortunate to have accomodating facilities such as the University of Arizona with its varied medical and rehabilitative programs, excellent hospitals with adequate physical therapy units, a number of medical specialists, many medical centers, a special needs department, and a very fine local chapter of the Arthritis Foundation. Many of these services have been utilized by members of this group. Although these agencies and institutions have provided excellent service and care, there are cther areas of special service that need improving on the City, State, and Federal level. Locally, our concerns are inadequate transportation, lack cf proper home care, unsufficient medical counseling, and public apathy. We shall discuss each problem briefly. (1) Transportation Arthritics whc utilize special needs, cite instances where the City needs to provide a more efficient service to eliminate negative factors that nullify positive aspects of the program. Arthritics who are drivers need help with automotive modification and financial assistance with high-risk insurance premium rates because they are classified as high-risk individuals. (2) Architectural Barriers The City Planning and Code officials have failed to comply with building codes that would aid arthritics and the handicapped. They need to provide convenient ramps and easily accessible entrances and exits for wheelchairs, crutches, canes, and walkers in all public buildings. (3) Lack of Personal Home Care Temporary home care is needed when an arthritic patient, who lives alone, is Letween the stage of hospital care and nursing home, but does not require either. There should be an Arthritis Volunteer Group to aid with grocery shopping, light housework, and other errands. (4) The Apathetical Attitude of Many Public Officials Some public officials are not aware or concerned about the plight of arthritics. We strongly urge that arthritics be placed on 1-151 Tucson, Arizona September 8-9, 1975 committees on the City, State, and Federal level. The public should also be educated about arthritis to help eliminate the stigma for social purposes as well as employment. 1'he negligence of the State is focused at tue State Legislature. "heir refrsal to implement new standards of qualificatin=s +c 2as7i<* arthritics of lower middle and middle income to become eligible for programs such as better medical care, home modification, special education, electric wheelchairs, and other means to help themselves, have placed them in a precarious financial predicament. On the Federal level, the Government has taken steps to reduce and eliminate many of the essential programs for good health care. They have ceased to suprort some critical areas of Medicare, including physical therapy which is vital for arthritics. We feel there is nc valid justification for Medicare to cease payments on physical therapy treatments when the treatment is for a maintenance purpose. It is vital that an arthritic continues therapy at all times. In addition to the aforementioned suggestions, we wish to list some practices and procedures we feel important to the welfare of persons with arthritis. We recommend that: (1) More emphasis be placed on doctor-family and patient counseling. (2) Sessions with counselor, patient, and family be provided. (3) Doctors spend more time with patients whose arthritis is in the incipient state to insure proper psychological adjustment. (4) Doctors consider the psychological affects of arthritis as well as the physiological. } (5) More emphasis be placed on special group therapy session. (6) Programs be instituted that would allow student doctors to deal with practical situations in addition to theoretical. (7) More research be directed at means to prevent severe crippling once the condition has become manifested. (Many members of this group feel that their condition would not be as severe now if intensive and continuous physical and hydro-physical therapy had been accessible.) (8) More funds be given for research to aid in funding the cause and cure of arthritis. (9) Funds be allocated for pilot rrograms for meditation classes, handi-dog classes, and home demcnstration classes. (10) Finally, we hope that Tucson, Arizona, will be declared the Arthritis Center of the United States. (All the components for a successful center are present here. We have the University 1-152 Tucson, Arizona September 8-9, 1975 Medical School, four rheumatologists, and an active Arthritis Founda- tion and the ideal climate.) In conclusion, we hope our suggestions will serve as an incentive and guide to enlighten the Commission about the essential needs of arthritics and will be some help to the other 20 million arthritic sufferers. We wish to thank the Commission for allowing us to express our opinion about this matter. We would also be willing to appear before the Commission and testify in person. Lillian K. Mardon, June Richmond, Jean Hough, Doris I. Altilia, Hattie P. Brcwn, Marjory Walsh, Diane Knoblock. 1-153 — — | ROYAL INN AT THE WHARF SAN DIEGO, CALIFORNIA September 10, 1975 T= ET TE == fj ——— § —— — — TEST ge Be =p == mmm = TABLE OF CONTENTS CHRONOLOGICAL LIST OF WITNESSES SAN DIEGO, CALIFORNIA SEPTEMBER 10, 1975 ZVAIFLER, Nathan, M.D. Professor of Medicine, University of California - San Diego CONVERY, F. Richard, M.D. Associate Professor of Surgery, University of California - San Diego VAUGHAN, John, M.D. Chairman, Department of Clinical Research, Scripps Clinic and Research Foundation WILSON, Peter Mayor of San Diego, California GRISSOM, Lee Executive Vice-President, San Diego Chamber of Commerce WILSON, Bob Congressman, San Diego, California, read by Marge O'Donnell DOOLITTLE, Carol Patient CLARK, Donald Patient JESSOP, Joseph Patient KING, Karen Koster, M.D. Children's Hospital of Los Angeles COOVER, Maxine Executive Director, Combined Health Agencies Drive GOEBEL, Louis President, Arthritis Foundation, San Diego, California - 1-157 1-163 1-165 1-168 1-170 1-172 1-172 1-174 1-175 1-178 1-181 1-182 LISTER, Jack Executive Director, Arthritis Foundation, San Diego, California MONTGOMERY, Jim Personnel Director, Rohr Industries, San Diego, California GREENLEAF, Lee Husband of Patient TREVOR, Claire Motion Picture Industry EPSTEIN, Wallace, M.D. Chief, Rheumatic Diseases Clinic, University of California - San Francisco CHEW, Virginia Liaison Nurse, The Arthritis Services Los Angeles Hospital, Downey MONGAN, Edward, M.D. Medical Director, Arthritis Unit, Rancho Los Amigos Hospital REYNOLDS, Michael, M.D. Assistant Director, Rheumatology Division, University of California - Irvine MOZAR, Harold, M.D. Chief, Chronic Disease Control Unit, State Department of Health, Sacramento, California MASON, Cecile Patient HUGHY, Georgia Patient CONNETT, Karen Occupational Therapist BURK, Nancy Patient WEATHERS, Allison Patient 1-158 1-185 1-188 1-191 1-192 1-195 1-197 1-199 1-202 1-209 1-210 1-211 1-212 1-213 WEAVER, Jo 1-214 Member, Parents of Children with Arthritis FISCHER, Patricia 1-215 Parent of Patient LOCKIE, George, M.D. 1-216 Arthritis Clinic, Children's Hospital CHADWICK, David, M.D. 1-217 Pediatrician, Children's Hospital COFFMAN, Lorene 1-218 Patient 1-159 SUBMITTED STATEMENTS HANSON, Virgil, M.D. REED, Rowland WELCH, Richard B., M.D. 1-160 PROCEEDINGS ENGLEMAN: I would like to express my appreciation to those of you that are here and to many more that I am sure are coming. The National Arthritis Act, as you know, was passed by Congress last December and signed by the President in January of this year. It is a vehicle through which substantial funds may be made available for research, education, and exemplary patient care. The funding, of course, has not as yet been made available. The Act is an authorizing act. The role of the Commission is to draw up a National Arthritis Plan which will establish quidelines and policies with which the hoped for funding will be used. The public hearings which are held, and which will ke held in other cities of the country, are point of the law. This is an obligation, but it is also a unique opportunity to seek to provide a forum for input from professionals, non-professionals, patients, and the public at large, who will offer suggestions and recommendations as to how we may best draw up the proposed Plan. Because of the restriction on time and the rather long list of very excellent witnesses who have expressed a desire to present testimony, there are certain procedures which I must at this time announce. All persons appearing before the Commission will seat themselves at this table in front of us, will state their full name, title, organizational affiliation and address. They are requested to provide a written statement of their remarks so that their comments will appear in the official records of the hearing. Due to the number of persons who have requested and the limited time, I must ask you to limit your comments to three minutes. This will also make possible questions from members of the Commission. I think that we will proceed and I will ask the following to seat themselves at the table: Dr. Nathan Zvaifler, Dr. Richard Convery, Dr. John Vaughan. I think that Dr. Zvaifler will open the presentation. TESTIMONY OF NATHAN ZVAIFLER, M.D. PROFESSOR OF MEDICINE UNIVERSITY OF CALIFORNIA, SAN DIEGO ZVAIFLER: Dr. Engleman and ladies and gentlemen: I am Nathan Zvaifler, M.D. I am professor of medicine at the University of California here in San Diego and currently the director of the Arthritis Division at that institution. The magnitude of the problem of arthritis and related musculoskeletal diseases is well known to the members of this Commission and does not require documentation, but the resources to cope with the problem differ from community to community. I would, therefore, like to take this opportunity to outline for you a conservative estimate of the number of specially trained medical personnel in San Diego County available for the treatment of one of the most serious forms of rheumatic disease, namely rheumatoid arthritis. San Diego County contains approximately one million people. The generally recognized figure for the frequency of rheumatoid arthritis is 1/72 to 1 percent of the population. This means that at the present time there are 5 to 10 thousand people afflicted with rheumatoid arthritis in San Diegp County. What are the available professional resources? 1-161 San Diego, California September 10, 1975 Ideally, the burden of care for such patients should be assumed by individuals with specialized training. We recognize, of course, that this is seldom possible, and that family practitioners, orthopedic surgeons, physiatrists and others provide most of the care. But how do the ideal and current practices compare? Presently, there are approximately 20 physicians specially trained in internal medicine with a specialized interest in rheumatic diseases in San Diego County. This figure, as small as it is, is not limited to practicing physicians. It includes personnel at the Balboa Naval Hospital -- the largest medical facility of its type in the world -- and the large San Diego Veterans Administration Hospital. This number is even more deceptive when one analyzes how much time these 20 or so physicians can actually spend with arthritis patients. Only 3 devote more than 60% of their practice to rheumatology. An additional 9 spend 30 to 60 percent of their time seeing patients with rheumatic diseases--and the remaining 8 -- mainly physicians engaged in research and teaching -give less than 30 percent of their time to this activity. Stated in another way, there is approximately one arthritis specialist for each 1,000 patients with rheumatoid arthritis. I know it is the intent of this Commission and the National Arthritis Act to find ways of dealing with the discrepancy between the magnitude of the arthritis problem and the available professional resources. Obviously, research endeavors must continue since elimination of diseases like rheumatcid arthritis and systemic lupus erythematosus would drastically reduce the need for trained personnel. Until that time, however, I feel that a major emphasis must be placed upon the training of physicians qualified to care for arthritis patients. This training must proceed at all levels -- from medical students to practitioners, to specialists, if we are to help the patients currently afflicted. In this regard, San Diego represents a unique community. First, because it has unusual strength in both basic and applied biomedical research. The scientists of the University of California, San Diego, the Scripps Clinic and Research Foundation, and the Salk Institute are internationally recognized. Second, for reasons of geography and climate, this is a very popular area for practicing physicians. The overall patient physician ratio is low, although as noted above, the rheumatologists are badly unrepresented. Third, and most important, there are personnel and facilities available in San Diego, ready and willing to participate in the training of physicians to provide better care for patients with rheumatic diseases. The Medical School of the University of California at San Diego has recruited a substantial number of faculty with .. strong interest in this area. These include members of both the Departments of Medicine and Orthopedics and Rehabilitation. The University Hospital has inpatient facilities that will be dedicated specifically for arthritis patients. A strong rehabilitation program with emphasis on outpatient management of rheumatic diseases has been developed with funds from the Regional Medical Program. By supplementing these resources with the participation of well trained rheumatologists from the Scripps Clinic and Research Foundation and the San Diego Veterans Administration Hospital, San Diego could become a model for training physicians interested in rheumatic diseases. These would be doctors who would remain and practice in this community. Emphasis would - be placed on teaching such individuals to deliver care -- especially to ambulatory patients, to direct the training of paramedical personnel and to educate their colleagues. The opportunities are almost 1-162 San Diego, California September 10, 1975 limitless. In the service area, for instance, there is currently only one community hospital in San Diego County with an established arthritis clinic. Care for indigent patients is very limited. On the educational front, new and better antirheumatic medications are being developed, but many patients will not benefit from them because physicians unfamiliar with their use are fearful of their complicated nature and side effects. Thus, many sufferers will not even receive the advantage of current pharmacologic advances. In conclusion, I would reiterate that the need in San Diego is great, the resources are available, and it is only the mobilization and focusing of these resources through activities such as the National Arthritis Act that will reduce the suffering of the tens of thousands of individuals in this area with rheumatic diseases. ENGLEMAN: Thank you Dr. Zvaifler. We will solicit questions after we have heard from the other physicians. I will call now on Dr. Richard convery. SUBMITTED STATEMENT OF F. RICHARD CONVERY, M.D. ASSOCIATE PROFESSCR OF SURGERY UNIVERSITY OF CALIFORNIA, SAN DIEGO The metropolitan area of San Diego is urgently in need of a coordinated program of service, education and research directed to the national problem of disability and suffering due to arthritic diseases. The national figures relating to incidence, disability, economics and suffering are well known. The San Diego area is unique for several reasons: (1) There is no one recognized center of institution where comprehensive care can be provided, (2) The area, because of its climate, attracts a greater number of older and disabled patients than the national norm, and (3) Health care services have been developed for the community with a minimum of coordinated effective planning. Arthritis and arthritis disabilities are a complex multi-faceted problem that require multi-specialty and comprehensive paramedical expertise to achieve maximal alleviation of suffering and disability. San Diego has all of the components to provide a program of service excellence, innovative research and progressive education. The resources are, however, widely scattered, totally uncoordinated and completely lacking in any semblance of a comprehensive program. The area does not need new hospital beds, outpatient facilities, educational facilities or research space. The area desperately does need a coordinating focus, an identifiable center around which the activities 1-163 San Diego, California September 10, 1975 of each of the multiple resources available can be directed. From a cooperative effort could come a program of unique care and progress. The professional willingness and interest in developing a coordinated project has been demonstrated this morning. The resources of the community are well known, but bear repeating in an effort to establish the central theme of this testimony. (1) An over adequate supply of acute hospital beds and private physicians in all medical specialties, with the almost singluar exception of rheumatologists. (2) Excellent research facilities at the University of California, Scripps Clinic and Research Foundation, Salk Institute and Veterans Administration Hospital, (3) An excellent teaching facility in rheumatology at the University of California, and (4) An arthritis rehabilitation project of comprehensive patient care at the University of California Medical Center. The need is to coordinate the activities and service capabilities of each of these diverse segments into an effective functioning whole. New facilities are not needed; minimal physical reorientation of existing structures is required; and large expenditures for start-up programs of patient care, basic and applied research and educational programs are not needed. The need is for a coordinating central focus, a center, to bring together the multiple assets, and resources of the community to achieve a common ‘goal. The resources are here, the patient need is here and a willingness to achieve the goal has been demonstrated. The goal can be achieved with a minimal amount of Federal funds. The result would be to create a program of service, research and education that is non-existent in the area, in distinct contrast to the other metropolitan areas of California. TESTIMONY OF F. RICHARD CONVERY, M.D. CONVERY: I would support entirely and enthusiastically Dr. Zvaifler's comments and I would like to reiterate on them in a certain fashion. As he has pointed out, there are an abundance of facilities in terms of acute patient care in the area; there are an abundance of physicians and surgeons as well as internists; there is a minor number of rheumatologic training people. What I would see as being the most essential thing is to bring these components together in an effective way to care for the patients, to stimulate research programs, and to continue educational programs. I see the primary need as being one of an intellectual organization designed to bring together people, facilities, and 1-164 San Diego, California September 10, 1975 institutions that are available to treat the patients that are here and are in need -- in a way that could be productive. This is a disease, as it is well known, that requires many different tyres of special discipline, both on the professional level as well as the allied health professional level. No local institutions with special skills exist. I see the activities of the Commission funding most productive in this area, that is in the formation of programs that will bring these institutions together in a concerted effort to bring the multi- disciplinary personnel that are here and available together -- in a concerted effort that would actually make a combined, a productive and a very efficient system in the San Diego area. This is a very difficult thing to do. It certainly does not mean bricks and concrete. This is not necessary in this area. If there is to be a center I think that it should be an intellectual center in some way. While this is perhaps naive to discuss, I think that it is a very necessary thing. It is a very difficult thing toc bring about. The talent that exists in the area has been well outlined by Dr. Zvaifler, and Dr. Vaughan will speak to it too, I am sure. But there is here a nucleus cf people that are interested and are concerned. If some way all of the various capabilities could be brought together through the stimulus of the Commission and the funding, I think that a really fine thing could be done in San Diego. Thank you. ENGLEMAN: Thank you, Dr. Convery. Dr. Vaughan. TESTIMONY OF JOHN VAUGHAN, M.D. CHAIRMAN, DEPARTMENT OF CLINCICAL RESERACH HEAD, RHEUMATOLOGY IABORATORY SCRIPPS CLINIC AND RESERACH FOUNDATION VAUGHAN: _.Dr. Engleman, ladies and gentlemen: I am John Vaughan, M.D., Chairman of the Department of Clinical Research and Head of Rheumatology Laboratory at Scripps Clinic and Research Foundation, an adjunct to Professor of Medicine at the University of California, San Diego. San Diego, like other communities acorss the country, has great need for aid in expanding and improving its offerings in the area of arthritis. Also, like other communities, there is great opportunity here. My remarks will not, however, be centered on either this need or the opportunity, but to certain principles that we believe ought to guide you in your deliverations. To illustrate my points, I wish to draw your attention to the situation in San Diego. Here, we have several institutions with fine programs in arthritis, but each program goes its own way and does so with little or no organized communication or coordination with the others. There are clinics and there are research laboratories. In the one are offered services to patients. In the other are investigators. In both there are students or trainees. 1-165 San Diego, California September 10, 1975 If our Federal Government is going to allocate sums of money to the development of arthritis programs in scattered locations throughout the country, upon what principles should this be done? And how in communities like San Diego? First principle: Should the Federal Arthritis Program, adhere to the traditional three-legged stool of teaching, research, and patient care? Our answer would be yes. The arguements for this are substantial and need not be reiterated at this time. Principle two: Should the Federal Arthritis Program adhere to a strict "Center" concept, by which we mean support of a sharply deliniated institution operating within closely adjacent facilities? Or should it consider consortia, in which the talents and opportunities of groups functioning in more far-flung locations can be organized into cooperative action? Our answer to this would be half-and-half. Clinics are much the same all over, except for their personalities. It would be redundant for the Federal Arthritis Program to support more than one central clinic in a geographical area. Research laboratories are exquisitely individual, however, and offer little redundancy. We would suggest, therefore, that many communities will, like San Diego, offer their best opportunity to a Federal Arthritis Program in the form of central clinics constructed to be models for care and teaching, overlaid by consortia of contributing research laboratories. Third principle: My third and last point. What should be the determinants in deciding the locations for your Federal Arthritis Program? Total population to be served is obviously one determinant. In addition, we would suggest that you would pay particular attention to whether the professional resources of the community have reached critical mass, i.e., - whether there is sufficient local expertise to support all three legs on the stool, and whether there is a climate of cooperation in the professional community to encourage the Federal investment. An entirely different determinant in selecting locations for investment would be involved if you should decide to support also, with small but significant sums, the opposite end of this spectrum: medical schools in need of start-up funds for arthritis programs they do not now have. This investment would have different goals and would have its own independent merit. Thank you. ENGLEMAN : Thank you, Dr. Vaughan. I would like to ask Dr. Zvaifler and other members of the panel what you see as the low of the primary physician? Your emphasis, Dr. Zvaifler, I think, was on the trained rheumatologists. How are we going to enlighten the primary physicians? ZVAIFLER: I think we have available to us a number of possible ways of getting at them. These have keen tried in various ways in various places with, I think, only limited success. Certainly, the primary place where the physicians should be acquainted with rheumatic diseases is in the medical school curriculum. I think all of us in this speciality area have spent many hours fighting with curriculum committees to try and 1-166 - San Diego, California September 10, 1975 increase the amount of exposure that students will have in this area. We have not done well in the past, in large part because medical education has been focussed on catastrophic inpatient oriented diseases. I think there is some light at the present time in that the medical curriculum and the attitudes of students are changning more and more towards ambulatory care and management of outpatients and family type practitioners. I think as this happens, rheumatology, which represents essentially an outpatient discipline, is going to have more and more to say in the medical curriculum. So I think, number one, we may be getting at medical students earlier. Secondly, I think that we are going to have to do a better job of putting people in the community who are in the practice of rheumatology. I feel badly, but I think it is true that medical scientists and people who work in medical schools do not impact on the communities sufficiently except in very formal educational programs. I would hope that by training practitioners who would return to the community they would become educators. For instance, in this community there is only one private hospital that has an arthritis clinic. This is a community that has a very large number of private hospitals. If each or many of those had arthritis clinics with rheumatologists who could talk and interact with their own professional personnel and their own colleagues, I think this would probably do as much to upgrade the care that could be given. It will never be possible for the rheumatologists to take care of all patients with rheumatic diseases. They have to do it by example and by teaching their colleagues about these diseases. HAVERS: I was wondering whether the health system agency, which was recently mandated, has it been set up in this area? Also, what area has been designated and how do you see that agency interfacing with the type of coordinated effort called a center? CONVERY: Dr. Havers; could you give me that again, I am not sure what you are driving at. HAVERS: Well, in the recent law on health planning, in evaluations passed, there was a health system agency set up. It is obvious that any new type of programs coming into a community will have to interface with that agency. CONVERY: Absolutely. HAVERS: How do you see that type of program that the three of you discussed? Will you be interfacing with them or have you interfaced with them? CONVERY: I think all of us are probably not as knowledgeable in that area as we would perhaps like to be. As I understand it, that is more of a facility type of situation. What I am personally thinking about, and I think that most of us kind of are, is a rrogram that utilizes existing resources and, in addition to a supplementation, a focus on a particular area. I don't believe that there would ke a conflict. There certainly should be cooperation in terms of the health planning resources, but I see 1-167 San Diego, California September 10, 1975 this as an identifiable intellectual resource rather than a facility type thing. HAVERS: You may wish to check that because they certainly have been questioning us with regard to the relationship of the arthritis setup as outlined in the act in relation to their responsbility. If you are indeed going to enlarge upon ycur concepts, it would be good to interface with them early. All three of you have emphasized training, teaching needs, and in all instances, the emphasis has been primarily on the physician. To what extent do you feel there should be additional training for persons in the allied health field and also scme type of teaching or education relative to the patient? I'll repeat again that they have mentioned and emphasized primarily the training of the physicians. My question is: To what extent should there be training for persons in the allied health fields and also for the patient? CONVERY: Dr. Lewis, if we have not emphasized this, it is my fault, because I am sure that Dr. Vaughan and Dr. Zvaifler have both assumed that I would emphasize that point. It is an oversight on my part; I should have emphasized this point. This is an essential component because in a disease in which we many times do not have a cure, and for rheumatoid arthritis we specifically do not have a cure, there are many things that we can do. Already, this is what our emphasis has been from an outpatient paramedical standpoint. In these areas, I feel quite strongly that we do need more people in terms of education and training in the paramedical field. There are many, many things that we can do that do help and that the physician, many times, is totally unaware of in terms of an intellectual center, this identifiable that does produce these things. If I could take off from that a little bit in terms of how do we get to the family physicians providing comprehensive, that includes diagnosis, treatment as well as paramedical treatment. The physician who is not so knowladgeable will consider that as a resource in the community, and the patients in the community will expect that type of treatment if they know that it is available. To sum up and answer your guestion, it is an extremely important ingredient and the cversight there is my fault. ENGLEMAN: Any other questions from members of the Commission? If not, thank you very much Drs. Zvaifler, Convery and Vaughan. At this time, on behalf of the Commission, it gives me a great deal of pleasure and indeed a privilege to introduce the Honorable Peter Wilson, Mayor of San Diego. TESTIMONY OF THE HONORABLE PETER WILSON MAYOR OF SAN DIEGO WILSON: Thank you ever so much Dr. Engleman, distinguished members of the Commission. I am grateful to have an opportunity to welcome you to San Diego. I hope that perhaps as a result of your deliberations and the recommendations you make in your report to the Congress, we may in the future be able to welcome a center here where we feel it would be most 1-168 San Diego, California September 10, 1975 appropriate and fit in very well with the existing health sciences network. A number of different and very distinguished research facilities and treatment centers already exist. The panel which has just left this table represented the distinguished research, teaching and treatment capability cf some of those facilities of which we are most proud; the Scripps Clinic which combines research and treatment in a way that, if not unique, is certainly one of the finest in the field and as a result of which we have, I think, justifiable pride in San Diego. The same thing is true with respect to the Salk Institute. We also enjoyed the presence of a major Veterans' Hospital, one of the newest in the network of VA Hospitals around the nation; and of course, the Navy's Balboa Hospital is a major facility. In addition, we have a great university, if a rather young one; and in particular we are proud of its medical school. We are very much proud and grateful that we have one of the fine teaching hospitals in connection with the university. The university hospital and representatives of that staff and faculty were at this table a moment ago responding to your questions. The Chamber of Commerce, for reasons that are obvious and selfish, has encouraged the development of health sciences in this community. I say selfish; and I think I really should exrand on that. Chambers of Commerce by-and-large are thought to be interested in commerce. This one and some others are interested really in the quality of life of this city. This community, that is the county as a whole -- I am extending my jurisdiction somewhat in this regard -- has a population of seniors -- that is those ages 60 or above -- numbering some 220,000 or more. Arthritis, as we are well aware, is a disease which attacks those of all ages, but in particular I mention our senior population because so many seem afflicted. We are informed by a very active chapter of the Arthritis Foundation functioning in San Diego and Imperial Counties that some 150,000 persons suffer from some rheumatic disease as residents of this county. Many have come to San Diego County, in part, because they thought the climate here would favor their particular affliction. This community is, as well, a home for a burn institute; it is the home of a tremendous amount of research; we are interested, quite frankly, in bringing more here. I have been listening with great interest to the discussion as to what the direction of these centers should be, as research centers or as treatment centers. It would seem that the interests in this community upon combining research with treatment would afford an opportunity for a center of that kind to function in a way that would not only be compatible and in harmony with other research efforts. Mind you, I am not qualified to comment on what cross-fertilization might result in that regard. But insofar as both an outpatient and an inpatient practice can facilitate the research effort is obvious, I think, and we have within the population of this county a resource available to a center the kind that we hope you will be reporting to Congress that they should fund as comtemplated by the National Arthritis Act... beyond that, I really cannot add very much other than the fact that presently, at University Hospital -- as you may have heard from previous witnesses -- we do have a very fine program that is involved not only in physical treatment, but also the rehabilitation of arthritis; one that is concerned with their social, sociological and vocational rehabilitation. They have achieved a very fine staff and very fine results; they have achieved cooperation from local employers. I 1-169 San Diego, California September 10, 1975 think all in all we have in San Diego the setting that would be conducive to the success of the center. Very selfishly, on behalf of the people whom I represent in this county and in this city, we think that a center of that kind would be a tremendous addition both as a research center and obviously in terms of what treatment it might afford to our own arthritis residents in the city and county. I would be happy to answer any questions, although my medical confidence is limited, to say the least; and some would say that that is much too limited a statement, but I might be able to extend it beyond that. If I can answer questions, I would be delighted to do so. And I hope that while you are here you will be able to enjoy the city. If I may suggest that in your serious deliberations you take a break and enjoy what the city offers in the way of diversion, I hope that I won't be suspected of attempting to influence you unduly. ENGLEMAN: Thank you very much Mayor Wilson. WILSON: Thank you very much Dr. Engleman. I would like to thank the members of the Commission. We look forward to the opportunity of welcoming you back several times and hopefully to welcome the Senate. Thank you. ENGLEMAN: Thank you very much for what you are doing. Your service is deeply appreciated. Mr. Grissom is in the audience and I would like to call on him at this moment. Mr. Grissom is the executive vice president of the local Chamber of Commerce. TESTIMONY OF MR. LEE GRISSOM EXECUTIVE VICE PRESIDENT SAN DIEGO CHAMBER OF COMMERCE GRISSOM: Dr. Engleman, distinguished members of the Commission: Let me welcome you to San Diego. On behalf of the Chamber of Commerce I would like to echo Mayor Wilson's delight in your decision to visit our city and to provide us with an opportunity to acquaint you with San Diego's continuing commitment to the health sciences industry. Most of you, I am sure, are aware of San Diego's increasing prominence in the fields of scientific and health care research. The national reputation earned by the Scripps Institute, Salk Institute, Veteran's Hospital, Balboa Hospital and University Hospital speaks for itself. Therefore, let me spend a few minutes addressing the true significance of the health sciences industry to this area. I hope that some of the following statistics, along with my sincere commitment to work with the National Arthritis Commission, will enable you to make the decisions necessary to put an end to the suffering of 20 million Americans who suffer from this dreaded disease. The role of the health sciences industry in San Diego has become more and more obvious in recent years. The total number employed in this field -1-170 - San Diego, California September 10, 1975 is 4,600. An additional 25,400 persons are employed in the health care fields. In total, these 30,000 jobs account for over 6 percent of total employment in San Diego County. But this is only part of the story. Every year, institutions such as Scripps and Salk attract millions of dollars in grant funds from outside the city. They are also attracting associated industry and activities to the area. Most observers feel that the San Diego health research complex is at a low point on its growth curve and that the rate of growth will accelerate dramatically in the period ahead. We are told that more than 200,000 residents of San Diego and Imperial Counties suffer from the nation's number one crippler. Certainly, the fact that a comparatively large percentage of our citizens are elderly has something to do with the high incidence rate. But as you know all too well, the pain of arthritis is not confined to the old. Over 1,000 area children under the age of five are also afflicted. The San Diego Chamber of Commerce, representing more than 1,600 companies countywide, has a deep commitment to the continued growth of the health sciences industry. This commitment is summarized quite succinctly in the policies of the Chamber's economic development division published in 1973. Let me quote from these policies: "The Chamber will encourage development and assist in strengthening San Diego's scientific institutions and science- related business enterprises. The Chamber will support development and expansion of programs which enhance and improve health care in San Diego County." Your Commission has been given a monumental task. One which affects the lives of millions of Americans. We cannot over-impress you with San Diego's desire and willingness to help you conquer arthritis. On behalf of the San Diegc business community, let me assure you that the creation here of a national research center to study the causes and cures of arthritis carries our strongest endorsement. We look forward to the opportunity to help. Quite frankly, we can think of no city in the country which would be a better suited as a National reserach center for arthritis. San Diego offers (apart from the most livable climate in the United States), a number of significant advantages as a research center. ENGLEMAN: Thank you very much, Mr. Grissom. I might say in this context that we have had greetings from Congressman Bob Wilson; his secretary Marge O'Donnell is here this morning. 1-171 San Diego, California September 10, 1975 SUBMITTED STATEMENT OF CONGRESSMAN BOB WILSON SAN DIEGO READ BY MARGE O'DONNELL SECRETARY TO CONGRESSMAN BOB WILSON O'DONNELL: I just want to welcome everybody here this morning on behalf of the Congressman. He is just terribly unhappy that he is not here to welcome you in person as you embark on the formulation of a comprehensive plan to mobilize our nation's resources against arthritis. congressman Wilson has asked me to read the following statement: "The degree of suffering which this dread crippler has inflicted upon people of all ages is immeasurable. Last year I was proud to have been a part of Congressional recognition of the need for a long-range program of detection, treatment and cure through the passage of the National Arthritis Act and the creation of the Commission. As an honorary director of the National Arthritis Foundation, I wish that I could participate in your hearings, but unfortunately the press of legislation requires me to be in Washington." He sends his greetings, and we hope that the sun comes out and shines brightly for all of you and that you have a nice visit in San Diego. Thank you so much, Dr. Engleman. ENGLEMAN: Thank you very much, Mrs. O'Donnell. TI might say that we were in Tucson yesterday and we had a very encouraging message from congressman Morris Udall; and we had a message this morning from Senator Cranston, who has been a strong supporter of the arthritis act, indicating his continued interest and support. These of course are the kinds of messages we just love to hear, because pretty soon, in the next few months, we will be going to these gentlemen in the House and Senate asking for the appropriation. At this time, we are going to call on some patients who are here to testify: Carol Dcolittle, Donald Clark, Joseph Jessop. Thank you. May we hear from Carol Doolittle. TESTIMONY OF CAROL DOOLITTLE PATIENT DOOLITTLE: I am Carol Doolittle. I am not a politician or a doctor, really not an authority on arthritis. I have had arthritis for six years. The disease was diagnosed when I was 25, and so I come from a point where I realize what these young adults are going through when they are hit with arthritis. What I have to say to you today is really, I guess, gut level stuff. I don't have a lot of statistics and, like I say, I am not an authority. Occasionally I get on a band wagon and the only one I have to listen to me is my doctor, so he said, "This is a beautiful opportunity for you to expound." 1-172 San Diego, California September 10, 1975 I have four points that I want to cover. I won't even touch on research because I am sure that there are men qualified here to tell you what is going on in research and I am sure most of you know what is going on in research, probably more than I do. I just take for granted and hope that all is being done that can be done on research. I think there are several needs for people with arthritis. They are living with it day-by- day, and these are the things I think are lacking. I didn't have help when I found out that I had arthritis. You know, for a doctor to tell a 25 year old gal that she has rheumatoid arthritis -- he didn't have the best bedside manner. I walked out of that doctor's office not knowing what was going to happen to me. I didn't know what was happening to my body. I had no one to talk to and I certainly couldn't talk to him. Now I find out that I was not even being treated correctly. And so there are just a lot of things, I think, this Commission could really have a lot of effect on it. How do we meet the needs of people who have arthritis now? You know, there are millions of them. I am sure that you have heard statistics this morning. The first rfoint I want to make, and as I said, I am not a politician and I am not close to Government, so all I can do is talk to you from the viewpoint of an average citizen who has arthritis and knows nothing about what is going on in high places. The first thing: I think there is a need for an AA type organization; and this should get a lot of laughs. I think there are a lot of people wandering around who have no one to talk to, no place to go. I think that new arthritis suffers need to have some people, someone to talk to that has arthritis. I think a person who finds out he or she has arthritis suffers emotionally, tremendously. I think that you really have got to realize this. Those of you who have arthritis, I am sure know this; especially for these young adults or the young teenagers, the young people who have it. I think that the people that have arthritis can explain to these people exactly what is going to happen to them, what is happening to them. It's happened to me and let me explain to you what I have been through. I just want to tell you right now that I have had a lot of phone calls in the last two years from people who have known me or through friends of neighbors crying on the telephone to talk to someone who has been through this. They call because they are scared stiff and they don't have anyone else to talk to about it. So, I speak from experience here. I know that there is a lot of counseling that needs to be done and I really believe this. I think that the Government could get this going through the Arthritis Foundations throughout the ccuntry, although I am not sure. I hate to offer or tell you a problem and not offer some kind of solution, but that is the only solution that I can come up with. There are Arthritis Foundations and if the Government is trying to help out, surely they could work together on it. Number two: There is a need for regional arthritis clinics staffed with rheumatologists. Now, here again I am speaking as an average citizen who has this. If there is such a thing, believe me, it is a well-kept secret. I am not talking about San Diego. We are very fortunate here in San Diego to have so many people who are interested in arthritis, but what about these Midwest small tcwns, what about the small towns? I came from Fresno. Now to this day I don't know if there is anyone in Fresno who 1-173 San Diego, California September 10, 1975 knows anything about arthritis and knows how to handle it. I came here four years ago and I have been through four doctors and I have got a fantastic doctor now. So I am also speaking from that experience. I went through a lot there. I think the public does not have anywhere to turn. I always hear about people going to Mexico. I have a cousin who lives in a Midwest town and she had no place to turn -- she had nowhere to turn so she flew down to Mexico. She feels better -- she is feeling well; and this has been a year ago that she did this. So she had no place to turn, or if there was a place tc turn, she didn't know where to turn to; you see what I mean, she knew nothing. Number three: I think the literature and the publicity on arthritis could really be more effective. I don't think that it meets the needs of the people who have arthritis. ENGLEMAN: Thank you very much, Ms. Doolittle. I will now call on Mr. Clark. TESTIMONY OF DONALD E. CLARK PATIENT CLARK: I am Donald E. Clark. I reside at 621 First Street, Coronado, California. I have arthritis and have had both hips replaced. By the end of this year, Medicare will have paid akout $10,000 on treating me. I am not proud of this at all, but it shows the high cost to the Government of arthritis. For this reason, I am firmly convinced that the only real chance in the future to reduce this cost is through research, specifically in places 1like the UC hospitals all over California, the Scripps Institute, the Palo Alto Clinic, and the Salk Institute. These are places where they are already doing research; and dedicated, successful work is being done. To me the fastest way to get that is to farm out projects to them or endorse and help their projects. I think that way you are not building up a monolith of another Government bureaucracy that would go on and on and on. IT think that vast results are needed. I think that can be done. I also endorse a former statement here. I think that the Food and Drug is really dragging their heels in improving things. For example, this total hip operation that was done in England six years before we could do it in the United States. They were doing it at the UC Medical Center. I waited 11 months to get my first hip done and meanwhile the other hip was deteriorating. I think that same things applied to some drugs. I don't mean that they should go over completely but I think that they can be faster in okaying at least more limited or extended-limited use of drugs. TI endorse other things that have been said. ENGLEMAN: Thank you very much, Mr. Clark. I will now call on Joseph Jessop. 1-174 San Diego, California September 10, 1975 TESTIMONY OF JOSEPH E. JESSOP PATIENT JESSOP: My name is Joseph E. Jessop, age 77, retired. I have been under the care of the Scripps Clinic and Research Foundation since 1934. Mrs. Jessop, who is with me here today, has been a patient there since 1965. For the past 10 years we have both suffered from arthritis. Others in our family have more serious cases than ours. It has reduced our ability to carry on a normal day's activities and has, in fact, changed our life style. From our own experience, and with so many affected, it must take an enormous toll of work days throughout the nation. We would hope that this investigation will bring forth a substantial Government appropriation for research into this crippling and painful disease, and that every effort will be made to determine the cause and cure. Also, we hope that an educational program will be put into effect, informing the public as to the use of the much advertised drugs, the cost of which, I understand, runs into the hundreds of millions of dollars each year. The only comfort one gets today from having arthritis is knowing that so many others are affected. All the more reason something should be done on a large scale to correct this serious problem. Thank you. ENGLEMAN: Thank you very much. Before I solicit questions from the Commission, I apologize to members of the Commission who are getting here for not having asked them to introduce themselves; I am going to do so right now, starting with Dr. Lamont Havers. HAVERS: Lamont Havers, Deputy Director of the National Institute of Heal th. BATCHELOR: Batchelor here, with the National Institute of Arthritis Metabolism and Digestive Diseases. I am Executive Secretary of the Commission. LEWIS: Dr. Lewis, retired professor of kinesiology, and physiology, Wilberforce, Ohic. MELICH: I am Doris Melich, president of the Utah Chapter of the Arthritis Foundation. I am one of the four laymen on the Commission and I have had involvement with arthritis for about 11 years. JENERICK: My name is Howard Jenerick. I am a staff member of one of the Institutes of the National Institute of Health. 1-175 San Diego, California September 10, 1975 SHIELDS: I am Marlin Shields. I am a physical therapist and I am representing the allied health profession of Salt Lake City, Utah. POLLEY: I am Dr. Howard Polley from Rochester, Minnesota. I am a rheumatologist. ANTHROP: I am Mrs. Verna Anthrop. I am a Pima from the Gila River Indian Reservation in Arizona. I am a retired nurse; I have had rheumatoid arthritis for 15 years. Thank you. WHEDON: I am Dr. Don Whedon. I am Director of the National Institute of Arthritis, Metabolism and Digestive Diseases, which is one of the ten National Institutes of Health. ENGLEMAN: May we now solicit questions from members of the Commission? HAVERS: I was going to insure Mrs. Doolittle that indeed this question of counseling, and we heard a great deal from patients yesterday, and indeed there has been a group formed within the Tucson area of patients and they identified themselves as an AA type organization. We have asked them to submit details about their organization. It is a very interesting type of presentation. SHIELDS: One of the comments I would like to make to Carol in this regard, I think that often times we look to the Federal Government to solve some of these problems. I would 1like to suggest the possible solution to this problem here, and perhaps the possibilities of Carol Doolittle as the first Chairman of your AA Program here in San Diego == who would like to keep it going without the Federal Government. DOOLITTLE: What I meant by this, I knew that the Government could do something. I understand that the Government can't come to San Diego and come to every little town, but if the Government did decide that this would be a good idea, as this gentleman suggested, maybe the Government could say to the Arthritis Foundation, "Well, here is a suggested format we could use." I didn't mean that the Government should come to San Diego. SHIELDS: We are sort of here representing the Government. WHEDCN: Mr. Chairman, I would 1like to address a comment to Ms. Doolittle and also to Mr. Clark, who mentioned the problem of new drugs and FDA clearance and the feeling that they are slow. I think what all patients in all diseases really ought to bear in mind is the fact that evaluation of new drugs or their effectiveness and safety is not easy. It is a complex, detailed, serious problem on which many of us feel not enough time and effort has been spent already. I need only mention the word thalidomide, I think, to bring to your attention the real concern that we all have for the introduction into this country of drugs that appear to be effective in other countries, but in effect are of questionable effectiveness and may actually be harmful. Nevertheless, we do realize that you are very concerned about getting new drugs, good 1-176 San Diego, California September 10, 1975 drugs, effective drugs and safe drugs as rapidly as possible. TI think that we should not relax with my comment that I just made. We must do all we can to improve the screening and testing of new drugs for effectiveness and safety. CIARK: May I reply scmewhat on that. I said give them the push to hurry up some of their wcrk on, and not set back and take too darn long, as I feel they have on some drugs. I think all of you know some drugs that they could at least give more limited distribution, maybe not general distribution. And there are some right now in England that have been proven, like this Charnley Hip Operation. It took so long for wus to get it around. WHEDON : The way I think we in the medical research part of the Federal Government would like to interrupt your charge is that we put more effort, funding and peorle into more rapid and careful testing of drugs. CIARK: Yes. ENGLEMAN: Yes, Ms. Melich. MELICH: As a patient, I should 1like to suggest to you that we shouldn't get impatient because our Government tries to protect us in the sense that they want to be sure that the drugs we are taking don't have after effects like the many huge doses of cortisone they are giving in Mexico; it leads to quackery and eventually we have the problems of disintegrating bones. Right in our university hospital in Salt Lake, our doctor, who is head of arthritis research, has three patients now whose hips are literally falling apart from overdoses of cortisone. They had gone to these Mexican doctors who say, "We will cure you overnight." This is the thing that all of us as patients have to be sure of, that we do not accept these hurry-up treatments just because we are all in pain. I sympathize with you, but I am sure that you know that. Clark: It does go to one extreme or the other, but I think there is a happy medium; a little bit over towards aggressiveness. Jessop: While we were waiting I passed a note to Don Clark, who has been a very important man in San Diego; a physical specimen at one time and very active in all events. I said, "Have you found anything that helps your condition; drugs, diet, exercise, climate, rest?" He wrote dcwn under exercise, swimming. I think even at this early stage, if information could be given on what is helpful and what is not helpful. I don't know, I have had arthritis for 10 years, and as I have said, I don't know a thing about it and I have been under the care of the Scripps Clinic. I don't know a single thing that will help me. I think if there is anything, information should be started almost immediately to tell people. Anthrop: Miss Doolittle, I like your idea about the organization similar to AA, because keing an arthritis patient, you never know when you 1-177 San Diego, California September 10, 1975 are going to get ups and downs. It is in these periods that the need arises to verbalize your pain, you know, and what you are going through, the stresses. So, I think if I were you I would enlarge on that and expand your thought. Doolittle: My point is that I feel there is a desperate need for the new people that have arthritis to get help. Now those of us who have had arthritis are going to live with it somehow. The people that are affected today need the help, I think. ENGLEMAN: I simply want to close this discussion by saying that we have certain work groups that have been appointed and one of these work groups concerns education; and under education we are including patient education, so that this is being given very serious consideration and will certainly be included in our recommendations to Congress. Thank you very much for joining us this morning. I would like now to call on Dr. Karen King, Maxine Coover, Mr. Goebel and Mr. Lister. If they are here, we would like to have the pleasure of their presence at the table. Dr. Karen King. TESTIMONY OF KAREN KOSTER KING, M.D. CHILDREN'S HOSPITAL CF LOS ANGELES KING: I am Karen King, M.D. of the Children's Hospital of Los Angeles. I am representing the Handicapped Child Committee of the American Academy of Pediatrics. You have before you the statement of the American Academy of Pediatrics on arthritis in children. In testifying today, I would like to emphasize some of the more important information contained in that paper, and in doing so outline some of the problems we are facing in the care of children with arthritis. It has become apparent over the last 15 years that the scope of the problem of childhood arthritis is far greater than anyone had imagined. The rheumatic diseases affect a large, though unknown number of children under 16 years of age and result in significant disability, morbidity, and mortality. It is estimated, for example, that more children are crippled by juvenile rheumatoid arthritis alone in any given year than by podiomyelitis in any 10 of the pre-vaccine epidemic years. The number of children affected by juvenile rheumatoid arthritis in any one year exceeds the number of children affected by all forms of malignant neoplastic disease. JRA is not the only crippling form of arthritis occurring in the early years. An equal number of children are affected by other forms of rheumatic disease, often with devastating results. It has also become apparent that there are three forms of JRA with definite clinical and serological distinctions. The pauciarticular group of patients is characterized by involvement of small numbers of joints, a relatively high instance of antinuclear antibody, low incidence of rheumatoid factor, and a much higher incidence of iritis than either of 1-178 - San Diego, California September 10, 1975 the other two groups. In contrast, the polyarticular group has involvement of many joints, a high incidence of rheumatoid factor, and approximately equal incidence of antinuclear antibody; but the incidence of iritis is very low. The systemic onset group is characterized by involvement of a variable number of joints, high fever, and rash, adenopahty, and hepatosplenomegaly, with a low incidence of antinuclear antibody and rheumatoid factor; a high incidence of pericarditis, and a low incidence of iritis. Recent studies have added other findings which seem to be related to these modes of onset. Expansion of our knowledge of these three forms of the disease will have significance in understanding the basic disease process. It is known that 30 per cent or more of the children affected ultimately are crippled, due to destruction of joint tissue and bone, resulting in loss of use of extremities and inability to care for themselves. The most devastating extra-articular complications include iritis with visual impairment in 10 per cent or more and, at times, production of blindness. The more severely affected children suffer gross impairment, daily high fevers for months or years, severe anemia, pericarditis, and literal wasting of the body due to the generalized effects of the disease. All of the above aspects plus very rapid progression of the disease in its severest form, distinguish juvenile rheumatoid arthritis from adult rheumatoid arthritis. In addition, the disease in its juvenile form is affecting a growing organism resulting not only in physical disability, but also in psychological problems, destruction of familial relationships, and inadequate education of the child and family. Entire families are disrupted by the emotional, physical, and financial demands made upon them in caring for a child with chronic deformity. At the present time, there is no known cause of juvenile rheumatoid arthritis and there is nc known cure. With the exception of aspirin and gold, there are no non-steroidal anti-inflammatory drugs available for use in children. New medications have been approved only for the treatment of adult theumatoid arthritis and are not available for children because of the lack of facilities to carry out the needed clinical trials. Since the physiology of the growing organism differs from that of the mature state, adequate carefully controlled trials of new anti-rheumatic drugs in children are essential. Likewise, there are inadequate numbers of trained pediatric rheumatologists and supporting personnel to cope with the problem. It is estimated that there are only 30 trained pediatric rheumatologists working in 15 inadequately staffed centers in the United States; a ratio of one pediatric rheumatologist to 15,000 arthritic children. The remainder of the physicians and supporting staff who deal with these children have often had little or no training in the care of the disease, and there is general lack of knowledge of the diagnosis and treatment of other forms of arthritis in children. We have seen this borne out in our experience within the field of rheumatology itself. The Childr~-s Hospital of Ios Angeles is closely 1-179 San Diego, California September 10, 1975 allied with the University of Southern California Medical Center, and we have had the opportunity to work with the adult rheumatology service there for many years. We train their Fellows in our clinics and we have seen over the years that the approach to the pediatric patient differs markedly from the evaluation and treatment of the adult patient. Additional training, therefore, is advisable for any physician who wishes to assume responsibility for the pediatric age groug. It is recommended that a national consortium of arthritis centers be established in major regions to render comprehensive care of children affected by arthritis, and such care would include diagnosis, treatment, patient education, and rehabilitation. Such centers would be specifically for the care of children, but would cooperate with adult rheumatology programs as there is much knowledge to be shared. A primary function of each center would be to pursue basic clinical research in order to better delineate the cause and natural history of the disease, as well as to provide better medication for its treatment. In the long run, study of juvenile rheumatoid arthritis may very well lead to further advances in the elucidation of the cause of adult rheumatoid arthritis. Similar gains have been made in the investigation of adult diabetes mellitus and of immunodifficiency disease by study of the younger age groups affected. Another primary function of each center would be to train physicians and allied health personnel including the «child's physician, physical therapists, occupational therapists, educators, and the patient's family. Additional information would be disseminated to outlying physicians and personnel to augment their role as primary health providers and to foster the growth of secondary centers. With adequate funding this can be done fairly easily. We have already started such a program in Los Angeles by creating a satellite clinic in Bakersfiled, and we are in the process of training the physical and occupational therapists, the educators, and the local pediatricians there tc care for rheumatoid arthritis patients. There is no doubt that arthritis is a major cause of disability in the United States. However, if we can expand our present fund of knowledge and we can undertake the sclution of problems affecting the growing human organism, we will be able to significantly reduce the burden placed upon our entire society in caring for the affected children and eventually the mature individual. ENGLEMAN: I am happy to say that we do have pediatric representation on some of the work groups, including research and education. And, as you know. Dr. Virgil Hanson is one of them. HAVERS: What 1s the American Academy of Pediatrics doing? I mean that I am fascinated that they finally got around to looking at JRA, but what are they doing to improve the knowledge of JRA within their own membership? KING: They are establishing a committee to look into it. We are trying to foster new programs -- postgraduate education programs -- to make pediatricians more aware of the disease. There is some training for them now, but not very much. 1-180 San Diego, California September 10, 1975 BATCHELOR: May I just speak to the special problems evaluating new drugs in children. I think those of you that are concerned about the delays should recognize the ethical problems that are very definite factor in these delays. KING: We are very much aware of the ethical problems and we do not undertake any investigation without parental consent or consent of the children themselves. In fact, our rules are much more stringent than established laws. ENGLEMAN: Dr. Zvaifler has a comment or a question, I am not sure which. ZVAIFLER: One of my other hats is to be chairman of the Arthritis Advisory Commission for the Food and Drug Administration, which, has now among its membership a very famous pediatric rheumatologist who, among her activities, is actually developing quidelines for the use of non-stiroidal inflamatory drugs in children. I would simply like to tell the members of this audience that FDA is acutely aware of these problems and is working with a very distinguished group of medical scientists in every way to facilitate getting drugs out from research, and to see that they are appropriately tested and cut on the market I think that everyone is aware of the problems that have been stated koth for adults and children. ENGLEMAN: Thank you. TI will now call on Maxine Coover. TESTIMCNY OF MAXINE M. CCOVER EXECUTIVE DIRECTOR, COMBINELC HEALTH AGENCIES DRIVE CCOVER: I want to thank you for the opportunity to appear before you today. I am Maxine Coover, and I Lkegan working for the Arthritis Foundation 18 years ago as a happy little housewife type volunteer. I subsequently became an employee of the Southern California Chapter of the Arthritis Foundation charged with the responsibility of carrying out their program here in San Diego. I was very proud to be a part of the chartering of the San Diego Area Chapter in 1963. I am currently the Executive Director of CHAD, the Combined Health Agencies Drive in San Diego. This organization is as the name describes, a combined fund raising effort for corporate and employees contributions via payroll deduction only, for eleven national health agencies. They are the Arthritis Foundation, the American Cancer Society, American Heart Association, American Diabetes Association, Cystic Fibrosis Foundation, Easter Seal Society, Kidney Foundation, Mental Health Association, Multiple Sclerosis Society, Muscular Dystrophy Association, and the National Society for the Prevention of Blindness. Because of the responsibility of raising funds for all these organizations, I have to be a "jack of all trades, so to speak" and know the programs, etc., of all of them. There are some things they have in common, and the center concept for research and patient services is one of these areas. I'm going to depart from my prepared text because of a tour we had yesterday at UCSD and I thought I would share this with you. This tour was held for the volunteers who will be raising funds for us and to educate them to why 1-181 San Diego, California September 10, 1975 funds are needed. These comments were made by the researchers there without the knowledge that I would be sharing them with you. The first area concerned the center concept. One of the researchers cited the example of the sickle cell breakthrough where, because of the closeness of the Medical School Faculty, a researcher was discussing a problem with a fellow doctor of chemistry, and together they identified the sickle cell. He felt this came about because microbiologists, researchers, and chemists work in the center there at UCSD and are able to communicate with one another. Another observaticn by one of the researchers was that while researchers make a financial sacrifice in choosing research instead of private practice, they are also burdened with becoming fund raisers. It appears to me that the time of these researchers would be better spent in basic reserach and that others should be raising the funds for that purpose. Another point that was made is that there is no duplication of effort between the government grants and the independent voluntary health organizations. Rather, that there is a dovetailing of effort to find a cause and eventual cure for these health agencies and expressed appreciation for the funds that are provided by them. I would like to conclude my remarks by saying that there is a continuing need for funds, both from the Federal Government and from the voluntary organizations, not in a duplication of effort, but rather hand in glove, to bring about an answer to the cause of arthritis and to effect a cure. ENGLEMAN: Thank you very much, Ms. Coover. Any questions or comments? HAVERS : I would like to welcome Mrs. Coover. I worked with her 18 years ago as a happy little housewife. ENGLEMAN: Do I understand you correctly, Ms. Coover, when you suggest that the recipient of funds, such as the researcher or clinical investigator, should not be engaged in fund raising? CCOVER: Well, of course he has to make the application for grants and so on and so forth, but I think they have to assume more of a role in fund raising than they should. I would rather see those energies and that brilliance directed to research. ENGLEMAN: But you wouldn't object if they did go out and ask Mr. Jones for $200,000? COOVER: No; I would help them. MELICH: = May I ask you, since I am involved in fund raising also, you say that you do this for 11 national health agencies, is this what you are doing is one combined effort? COOVER: Yes; I do, and I am very enthused and very elated about it. I don't think that we should take the time. MELICH: I am not going to ask you that, all I am asking is do you have a United Way in addition to that? 1-182 San Diego, California September 10, 1975 COOVER: Yes; we do. We fund raise together as two separate entities, but with a common punch card. ENGLEMAN: Thank you, Ms. Coover. I want to express our appreciation to the local chapter of the Arthritis Foundation for the arrangements which have been made and without which this meeting could not have been as successful as it obviously is. And thus, it gives me a great deal of pleasure to call on Mr. Louis Goebel, who is the president of the Arthritis Foundation chapter in San Diego. TESTIMONY OF MR. LOUIS GOEBEL PRESIDENT, THE ARTHRITIS FOUNDATION SAN DIEGO, CALIFORNIA GOEBEL: Thank you, Cr. Engleman and members of the Commission: I am Louis E. Goebel, president of the San Diego Area chapter of the Arthritis Foundation. It 1s a real pleasure to have this Commission in San Diego taking testimony, and it is cur privilege to appear before you. I would like to discuss with vou briefly some of the activities of our local chapter and yield to our executive director Jack Lister to indicate more specifically some of our program needs. As you probably know, the San Diego area chapter is a separate nonprofit cooperation with an affiliation to the National Arthritis Foundation. We do serve San Diego and Imperial Counties with a population in excess of 200,000 persons. As has been alluded to by previous witnesses, we believe that our service area is unique in two measures. First: We believe that the incidence of persons afflicted with arthritis is in a relatively higher proportion in this area than in many other areas of the country for the reasons alluded to; our climate, our incidence of senior citizens, etc. We also believe that we are blessed with a number of fine research and clinical medical facilities and with some fine physicians and scientists associated with those facilities. We as a chapter benefit greatly from this. Now, our chapter operates a central office in a close in area of the city which is readily accessible to public transit and we feel close to the center of our client population. Exactly what kinds of services do we provide? Basically we provide information. We have responded to some 15,000 inquiries from the public within the past year. Alluding to the testimony of a previous witness on our telephone reception, one of our full staff members is a person who is afflicted with arthritis. So we do have some empathy on the end of the telerhone when the first call comes in. We do provide written information of various forms to persons calling in and we provide referral services to treating physicians. We provide equipment on a hardship kasis. We have some 15 wheelchairs, five walkers and a number of other devices in constant use. We spcnsor an annual medical symposium of physicians and scientists in this area. We publish a quarterly newsletter and disseminate information on the subject. We act 1-183 San Diego, California September 10, 1975 as a clearinghouse and a liaison for various programs. I hope that you will hear some more about an occupational therapy program at University Hospital which we have been able to provide some liaison for. In summary, I believe that we have a high degree of visibility in the community, which makes us a potential source for meeting the mandate of the act in terms of public information, referral, and counselling, and would offer to you our services in that regard. At this time I would like to yield to our executive director, Jack Lister -- who is responsible for much of the arrangements that Dr. Engleman has alluded to -- and ask him to detail further some of our program needs. TESTIMONY OF JACK LISTER EXECUTIVE DIRECTOR, THE ARTHRITIS FOUNDATION SAN DIEGO, CALIFORNIA LISTER: Dr. Engleman and Commission members: You have been more than welcomed here, but I will just extend a personal welcome to the Commission and I hope that the information you are receiving from these testimonies here is valuable to you. I am going to touch upon four things. Basically, as I see the program needs, if we had all the needs met we wouldn't have to be having to meet here today. We are short and we have some needs that I want to allude to. Before I do that though, I want to thank, on behalf of the Foundation, all of the people that have agreed to testify here, because I think your appearance here is going to be valuable to everyone. Let me just touch upon the four things. Carol Doolittle, I have talked with her and she hit the nail on the head. We need some kind of psychiatric help in terms of establishing relationships between patient and doctor. I get more calls during the week from patients that say, "What does this doctor mean when he tells me I have this, this and this?" The doctor, and understandably so, just does not have the time to go into all the details. A mother comes home frustrated and this kind of thing and says, "Hey, who do I turn to now to interrupt what I know to be a very bad type of disease?" We need that kind of help. We need transportation facilities of some type to and from clinics, and to and from doctors! offices. People that are afflicted with this painful disease cannot, in all cases, dirve. Our elderly do not have the transportation needs that are necessary to just become mobile and get around. We need home and recreation facilities for the arthritics. I get a lot of calls from young adults who say, "I can't go out to the pool room and shoot pool, but I certainly enjoy getting together with some other people my age in a recreational setting where I can do some of the things that I want to do." 1-184 San Diego, California September 10, 1975 I think there is a need for home facilies of some type for the senior citizen arthritic -- adaptations that are designed with the arthritic in mind. You know that it is a tough thing to just open a door knob, and I think that we have an cpportunity here to make some recommendations to the building industry to make some modifications with the arthritic in mind. I think that we need, in this area and across the country, a drug information clearinghouse c¢f some type. I think that there are such things in existence now, tut I think that we want to expand it in terms of the arthritic. Living close to the border like we are, we are deluged with bugs coming across the border. There are probably -- right today passing by the front door of this hotel -- carloads of drugs that we have no knowledge of; I think that we need some kind of information that we can pass out to the public about it. Certainly we need an expanded therapy clinic of some type; and along with that is the need for more rheumatologists and training grants to train them. I guess that the picture that I am painting here is one of some kind of a center, of some kind of organization in the Southern California area that can deal aggressively with the areas that I have talked about. I thank the Commission and I wish you success in your work. ENGLEMAN: Thank you very much, Mr. Lister; and thank you again for all the trouble that you have obviously exerted on our behalf. Any questions? Thank you. If not, we will now call on Jim Montgomery, Lee Greenleaf, and Fred Mayer. Mr. Montgomery. SUBMITTED STATEMENT OF JIM MONTGOMERY PERSONNEL DIRECTOR, RCHR INDUSTRIES SAN DIEGO, CALIFORNIA The effects of arthritis in the business community are widespread. Most people do not understand the true impact or magnitude of the situation in its entirety. You can comprehend the extent of arthritis by comparing arthritis tc a pekkle dropped into a pool--the encompassing circles are far reaching. Arthritis encompasses some 25 different diseases; among these are osteoarthritis, rheumatoid arthritis, gout and ankylosing spondylitis. Many people are familiar with the names, but lack understanding or comprehension of the disease processes and their effects. This family of diseases, which we call "arthritis", ranks second only to cardiopulmonary diseases as a cause of occupational disability, absenteeism, and financial loss. In its most painful and crippling form, arthritis first strikes the employee in his peak productive years--the 25 to 45 year old age bracket. The total annual cost to the national economy due to arthritis is now estimated at almost $9 billion. On November 9, 1972, there was an "Arthritis Dollars and Sense Seminar" at the Pick Congress, Chicago. It was the first time that a seminar on arthritis was given with the focus on the employee and the 1-185 San Diego, California September 10, 1975 industrial setting. This seminar was an "awareness" seminar. A step at the threshold--but it seems that the path has a long way to be traveled. Our company's viewpoint is just one facet of a multi-prism looking glass. Perhaps, through our experiences with arthritis, we can capture an idea of the dimensicn and scope of the problem. Over the past three years, 10 percent of the Chula Vista corporate and main plant facility employees have been affected by arthritis. So far in 1975, we have experienced a loss of 14 1/2 months due to diagnosable arthritis. Many more emplcyees were aksent due to "joint pains, chronic backaches" and other synonymous complaints. These are broad, encompassing terms and give rise to questions concerning suspected arthritic basis. It is apparent that specific goals to strive for are needed to reduce lost manhours. We have taken some positive steps toward reaching these goals. The combination of medical examinations and health education programs have reduced the amount of lost time. The functions of our Medical Department include pre-employment examinations and "return to work" medical examinations. Through examinations such as these, the "man" and the "jok" are as closely matched as possible--for mutual benefits of the employee and the company. An active preventive health care program has also helped our employees. Patient teaching through the use of visual aids, movies and dietary and drug counseling is of great value to employees. We act as a resource to our employees, making referrals and directing our employees to seek apporpriate medical care. One thing we cannot provide is "in-plant" therapy or physical therapy for arthritic patients. Through company health educaticn programs such as Rohr's, it should be possible to reach workers with the message that arthritis, while not cureable, is not hopeless--if medical care is sought in time. Education coupled with health care rprograms should help to reduce the absent arthritic workers in industry. The experiences shared with you today reflect only our perspective of the problems of the arthritic employee in industry. Multiply our statistics by all industries and we begin to realize the implications and enormity of the situation. TESTIMONY OF JIM MONTGCMERY MONTGOMERY: My name is Jim Montgomery. I am Director of Industrial Relations for Rohr Industries, which is a major employer headquarters in San Diego. We have about 10,000 employees and our primary activity is manufacturing. That is important to what I am going to say, because there is a lot of handwork that goes on in the manufacturing that we do. If I have one request to the Commission as a representative of business and industry, it would be in the area of education. We have a 1-186 San Diego, California September 10, 1975 lot of occupational diseases that cause employees to miss work and lose money. Alcoholism is one of them. It gets a lot of television time with respect to symptoms and causes and possible cures. Cardiopulmonary disease, respiratory diseases, and cancer all receive television time. We are sure that we have employees, and probably in sizeable numbers, with arthritis who are not even aware of it, who are not coming in on Monday or leaving early on Friday. Two days ago I had a female clerk who has worked for the company 15 years; and I am interested in arthritis and know this gal well. She came to me and said, "I am told ky my doctor to go on long-term disability." I said, "Betty, whatever for?" She said that she had severe arthritis. Betty has been there 15 years; I didn't know it. I started looking into Betty's background and Betty has been missing work, which is a very solid citizen, and she did not complain and stayed on as long as she could. How many Bettys are there walking around in the world? I have no idea. My request would be for education for the masses so that they can determine on their own what the symptoms are and seek help. As a sideline, I would like to tell you that Rohr is working with the Arthritis Foundation. We are working on a program to provide employment in the home for homebound arthritics. Small pieces of metal that may need painting or holes drilled or filing, we select the work and by acting as liaison with the Arthritis Foundation we do provide employment -- homebound employment for arthritics on a very small scale. I think that might be something that the Commission could investigate. Thank you very much. ENGLEMAN: Very good. Do you have any specific suggestions as to how we can promote education at the level of industry and the physicians who are directly concerned with industry? MONTGOMERY : Well, there are many organizations of industrial physicians you could go through. My thoughts are that I am a lay person. I can tell you what the seven symptoms of cancer are, and I am interested in arthritis and I can't tell you cone of the symptoms of arthritis -- unless it is pain. Therefore, I guess my answer is national publicity, using television and other media. MELICH: I would like to ask you if you have ever had such a thing as a health fair, where you have groups of industries get together to consider the various tyres of industry related diseases -- like alcohol or cancer or whatever? MONTGOMERY : Well, there are several organizations that sponsor many seminars on an individual basis on the various occupational diseases. MELICH: We have done this in several places and they have been very successful. In fact, right now in Utah they have a Workmen's Compensation National Convention keing held there, and they asked us to put on a scientific approach to arthritis. I also know that they have health cares 1-187 San Diego, California September 10, 1975 that are combining together cther organizations in the health fields for an impact, in a simple way, on industry. You haven't had that down here? MONTGOMERY : No; we have a program at Rohr where once a month we feature a disease utlizing bulletin boards, bulletins to employees, films in the cafeteria during lunchtime and after hours; and we have recently featured arthritis. But, in my mind, there is a limited amount of effectiveness to that campaign. HAVERS : Mr. Montgomery, I would like to ask you a lot of questions, but I am afraid that our time is going. Why is Rohr so interested in arthritis? You have obviously started a home program. Why did you do that? MONTGOMERY: I don't know the answer to that. I am a recent member of the Board of Governor's of the Arthritis Foundation; I have no history in my family. The company has been interested in CHAD, the Combined Health Agencies Drive, and the United Way in supporting those activities for some time. My personal feeling is that there is a recognition amongst top management, particularly our doctor or our industrial physician, of the extent to which employees are afflicted with arthritis. Therefore, there is a lot of work being done in that area by the company. HAVERS: You are saying that at least one of our work groups should explore more in depth the relationship in industry. POLLEY: Let me mention this connection -- that we do have on one of our work groups a man who has gone from industry to health administration, and I am certainly going to bring to his attention your expression of interest in this area and see if we can't get some kind of follow through. ENGLEMAN: Any other questions? Thank you very much, Mr. Montgomery. We will now call on Mr. Lee Greenleaf. TESTIMONY OF MR. LEE GREENLEAF HUSBAND OF PATIENT GREENLEAF: My name is Lee Greenleaf and my wife is an arthritis patient. She is now 65. This started when she was about 60. I kelieve about the only comment that I can make is by citing an example. I was quite appalled trying tc read up on arthritis and to buy the Arthritis Association's books for laymen. About all you get out of reading the whole book is that there is very little known about arthritis. The other thing is the limited treatments we have had any experience with, such as cortisone, prednisone and gold shots, and the aftereffects. The effects have been very injurious to my wife, and I do not think that they were monitored as well as they could have been. It was 3 1/2 years before I became aware of what ill effects could happen. I think that I could cite very briefly the history of those if it would be enlightening to you. I spent 25 years traveling around the world 1-188 San Diego, California September 1C, 1975 in the construction business; my wife went with me once or twice a year. Although not a strong woman, she enjoyed fair health. She lived in the San Francisco Bay area when she acquired a stiffness, and went to her doctor. She learned that she had rheumatoid arthritis, but she was not in any great pain. I was overseas the majority of the time. She took care of her own affairs; I did not know too much about it. I later found out that he gave her some gold shots. We moved to Boise, Idaho in the fall of 1970, and the doctor up there followed through on some gold shots that didn't seem to do her much good. She had some cortisone shots and her arthritis got worse. Then, she fell and broke her hip. The hip mended but the ball went to pieces; she broke her hip just before the ball. That is when I started to get involved in her medical affairs. About a year later she became quite sick and nauseated, and we were several days getting a doctor. It was hunting season; everybody in Boise goes hunting in the fall. We finally got a doctor after #4 days, took her to the hospital that night, and he diagnosed it as pneumonia. I went to see her early the next morning; she didn't look very good. He left and in about 2 minutes she had a spasm, was taken to intensive care, almost dead. 1It took them about 24 hours to find out that she had lost her electric lights, her sodium and calcium, etc. She got slightly out of intensive care and went to Elks Rehabilitation Center in Boise which is a very fine institution for physical therapy. They found that her rheumatoid arthritis had gone to her right lung and were quite concerned about it. They brought in a couple of specialists. They put her on what I understand as a very, very heavy dose of prednisone and they told me it might have ill effects, but they recommended it. About 3 weeks later I retired and moved to this area. I live akout 50 miles from here in the country. She wasn't well; she was in a wheelchair. I took her to a doctor in Los Angeles who is quite famous in this area and treats a lot of my neighbors for arthritis very successfully. He took one 1look at Jane and examined her and immediately insisted that she go to the hospital. He arranged for her to go tc Scripps Memorial in this neighborhood and get off the heavy dosage of prednisone. That took three weeks, and she got very excellent care. After she had keen out about 6 months, I decided we should go to a rheumatoid doctor. He examined her and put her on gold shots. She had the first one the day we went there and the next one a week later. Two days later she started getting nauseated again, and I was unable to contact our doctor who had taken excellent care of her in La Jolla. He was away and I had a little difficulty with his assistant. He thought that I should wait until the dcctcr got back. So, she passed out again and had another spasm. We went to the hospital in an ambulance and it was again the same thing, the loss of electric lights. They took the pin out of her hip and took good care of her. She was home for about a month when we had a reoccurence. I could see the signs coming on because that happened twice before. Her doctor in Escondido was away, and his young assistant insisted that we wait 2 days until he got back. I took her to the doctor and he immediately put her in the hospital across the street. She had been in the hospital 20 minutes when she had another spasm. She was then placed in intensive care for 3 weeks. I was, to put it mildly, a little fed up with the medical profession at that point. I went to Scripps Clinic, to Dr. Palmer, and explained to him that we live in a remote area and that I didn't want to have to argue about whether I got my wife in the hospital or not. I wanted to be able ‘1-189 San Diego, California September 10, 1975 to give him the benefit of the doubt; I wanted her examined, and they did exactly that. She received excellent care. He tock the trouble to explain to us that cortisone and prednisone put you in a position where you could lose your electric lights, your sodium and calcium. They put her on a very light dosage of cortisone which she is still on. She has been on it a year and a half now. They taught her isometrics because she can't get any exercise. We hope that she has a hip replacement operation but they won't do that until she gets stronger. Of course, it is very difficult to get stronger when you are in a wheelchair and can only sit up a few hours a day. ENGLEMAN: Mr. Greenleaf, given your druthers, what would you like to see the Commissicn consider in this context and ... GREENLEAF: I have keen appalled at what appears to be a lack of knowledge in the medical profession -- in general -- about arthritis. I am quite appalled knowing the ill effects of the only few treatments that seem to be available for arthritis. The patients are not warned about them and the doctors don't monitor those ill effects carefully enough. I realize that there are a lot of fine doctors and a lot of fine work being done on this. My own personal experiences, which are limited, lead me to these beliefs. I think that arthritis, what I have heard these other people say and what I have read, is one of the most unexplored fields in the medical history. ENGLEMAN: So you would feel the medical emphasis should be on education, physicians and... GREENLEAF: To physicians and to patients. Better monitoring of these side effects. I think that the rheumatoid treatment my wife has had has been far more injurious than any benefit that she received from them. PCLLEY: TI would just like to say that I think that many patients do not appreciate the fact that probably a large or major part of your complaint can be traced to the fact that the medical school curriculum doesn't have arthritis training in it. Dr. Zvaifler alluded to that earlier, about the emrhasis on acute care in the medical school. So, from our standpoint, in part at least, a solution to your problem is through the medical schocl training. ENGLEMAN: Thank you very much Mr. Greenleaf and Mr. Montgomery. At this time I am very happy and very privileged to call on Miss Claire Trevor. Miss Trevor, I am sure, is well known to everyone not only on the Commission, but also in the audience. We are so happy to have another industry represented, namely the motion picture industry. Miss Trevor. 1-190 San Diego, California September 10, 1975 TESTIMONY OF CLAIRE TREVOR MOTICN PICTURE INDUSTRY ORANGE COUNTY, CALIFORNIA TREVOR: Thank you; it is very nice to be here. I flew down from Orange County this morning. You know there are two sure ways to tell when you are getting old: The first is that you begin to lose your memory, right; and the second is, I forget what the second one is. Anyway, that is why I wrote this down last night and I am going to read it because if Winston Churchill can do it, I guess I can. I don't know if you know that when King Edward, the Duke of Windsor, was a young Prince of Wales he was very nervous about making public speeches. Winston Churchill said to him, "Why there is nothing to it, my boy. Take your brandy glass at the end of the dinner, turn it upside down, put your plate on top of it, prop the paper right there, and read it," which he did. Anyway, this is not a news flash or national emergency; we haven't had an earthquake, a tidal wave, forest fire or even a shark in our county. But, we have had something of great importance to report. The arthritic clinic at the medical center is swamped. Now it is swamped by patients crying for help; by the need for more research; for more trained doctors in the field of rheumatology and orthopedic surgery; by the need for money. Here are a few gcod reasons: The way things are now, we can handle only 700 individual cases each year at the clinic. Do you know how many anxious, needy patients are passed by? Well, you can make a guess because Orange County is growing so fast it is unbelieveable. There are three great doctors serving on the regular slate -- Drs. Rankin, Reynolds, and Bowen. Three additional doctors are on the attending physicians slate-- Drs. Katz, Casey, and Kenyon; and there are four rotating fellows. Dr. Paine is the practicing fellow. They handle 25 or 30 individual cases per clinic session. They are all terrific. I know; I have seen them in action. We just don't have enough of them. I have seen the looks of hope on the faces of young patients; I have seen those same young patients cured. I have also seen cases of unforgettable agony and pathos. Dr. Ancello, a wonderful man, was telling me about a case in point; a 19-year- 0ld girl who is 4 feet 2 inches tall and has had rheumatoid arthritis since she was 18 months old. She has an artifical knee, which was developed through research at UCI, and has multiple operations on her hands, wrists, and knees. Recently, she had a back straighteninoc operation at Childrens Hospital in Orange County. They put steel rods in her back; she now faces two more hip, surgeries. In spite of all of this, she wants to continue her education. Her parents can't possibly afford it. How about you? Even qualified physicians in private practice have a six to eight week backup before they are able to see patients. The demand for qualified rheumatologists and orthopedic doctors is so great that in a way it is like the freeways; as soon as one is finished, it is obsolete. And here we are dealing with human beings who are not getting adequate treatment. 1-191 San Diego, California September 10, 1975 Money is desperately needed to carry cn the research, to train the doctors, and to use these assets to give hope to thousands of brave people for a chance to move withcut pain. It can't be done without you and can't be done without money, now. That is all I wanted to say. ENGLEMAN : Thank you very much, Miss Trevor. I am sorry that one of the members of our Commission is not here to greet you and to respond; Mrs. Rosalind Russell Brisson was with us all day yesterday. She, as you know, was a victim of rheumatoid arthritis and has been very helpful to us. I am sure that she would extend her greetings to you Miss Trevor and agree with you wholeheartedly. Any comment from the Commission members? If not, we will proceed. We will ask Doctor Wallace Epstein, Virginia Chew, Dr. Edward Mongan, and Dr. Michael Reynolds -- one of the physicians to whom Miss Trevor alluded -- to please come to the table. Dr. Wallace Epstein. TESTIMONY OF WALLACE EPSTEIN, M.D. CHIEF, RHEUMATIC DISEASES CLINIC UNIVERSITY OF CALIFORNIA, SAN FRANCISCO EPSTEIN: I am professor of medicine at the University of California in San Francisco. I am also chief of the rheumatic diseases clinic and director of a clinical scholars program supported by the Robert Wood Johnson Foundation. For the past 20 years, I have directed a laboratory in basic and applied immunology and at present am chairman of the Executive Medical and Scientific Committee of the Northern California chapter of the Arthritis Foundation. I believe the central problem being faced by this Commission is to develop an order of priorities among the very large number of commendable activities being advocated for the fight against arthritis and rheumatic diseases. Previously we believed, rrobably incorrectly, that the mobilization of evidence and arguments for training, research or patient care could result in adequate resources being made available without diminishing the potential availability of resources for the other related activities. This clearly is no longer true whether we consider Federal agencies, private rhilanthropies, faculty positions or space for offices and laboratories. You, therefore, must find the be ance of priorities for the next decade of the fight. It cannot be determined by any less knowledgeable group. Although it has been suggested that we are in a period of antagonism to basic research, I feel our greatest need is for fundamental research, but into areas all but ignored up to this point by the leaders of American rheumatology. The urgency fcr continued support of fundamental kiomedical research to find basic etiologic and pathogenetic processes in the rheumatic diseases has been exhaustingly presented and documented in the hearings before the Congress on this Act. I subscribe to these arguments, but I realize that by advocating new areas of scholarly work, I alter our previous priorities. 1-192 San Diego, California September 10, 1975 Academic leaders in rheumatology have only recently begun to recognize that research into the accessibility, acceptability, planning, organization, technology, distribution, utilization, quality and financing of rheumatic disease services is both possible and essential. It has been assumed that professionals in other fields would some day get around to doing this for wus, Fkut I believe these are subjects appropriate to the training of a new generation of rheumatologists. Research into these areas offers as great a challenge and difficulty as those we find in biomedical bench research. Research and training of new rheumatologists in these subjects will not happen without the leadership of this Commission, since the biomedical role model is almost the only one we have for young physicians interested in academic careers in rheumatology. As an examply, my own unit in San Francisco has established an interdisciplinary team of rheumatologists in training and graduate students in economics, regional planning and demography. A recently completed undertaking of this group has been to examine the total arthritis problem of a non-metropolitan area of California, drawing over 110,000 persons. The city is 4 tc 5 hours by car from the nearest university center. After describing the magnitude of the problem by random populaticn interviews, provider and institutional analysis, the group has attempted to apply social sciences computer matrix analysis to identify key facts concerning referral patterns, patient access problems, financial limitations to care and physician attitude to increased consultant services. A survey of local, state and Federal agencies that one would think might have informaticn about chronic musculoskeletal disease in a community of this size, revealed essentially no direct and little extrapolated data. Although we are convinced it is not possible to apply the results of study of this community to another ccmmunity, it is of interest that this non-metropolitan community appears to have very good facilities and personnel for the care of persons with severe musculoskeletal disease, although no resident rheumatologists. The major problem appears to be a block in the referral process. General practitioners refer only 9 percent of their arthritic patients for another opinion, and fully 50 per cent of the most severely limited arthritics cared for by general practitioners have never been referred to any other physician for another opinion. Seventy-four percent of physicians interviewed stated that no additional physicians with special training in rheumatology are needed in the county. The A.R.A. ratio of one rheumatologist for 20,000 population would suggest five or six are needed in the community. An assay of additional information dealing with communication systems, local and State regulations influencing treatment patterns, and the cost of services by different providers and facilities begins to form an information picture upon which options for more medically and cost-efficient services may be developed for this community. The training of new rheumatologists in the research techniques of non- biological disciplines will lead to careers in academic and non- institutional rheumatology that will lead to more meaningful clinical research, organizational research and multidisciplinary studies that will give wus the data we now lack to carry out effective health care planning. As the concept of center of excellence is refined, it will be possible 1-193 San Diego, California September 10, 1975 and, I believe, essential for the Commission to encourage training and research in these non-biological disciplines by designating and restricting resources to these areas. As an outgrowth of other studies of our interdisciplinary group, I would further advocate: (1) The Commission should find ways to encourage regional rather than institutional approaches to planning services for patients with arthritic and rheumatic disorders. (2) The Commission should find ways to encourage, wherever possible, interinstitutional and interagency applications leading to centers of excellence that include rather than exclude the total health care and research resources of an area. (3) Finally, there should be a real investment of personnel and resources in the process of evaluation with criteria determined prior to the institution of prgorams. We have established rigorous criteria for the assessment of new drug therapy, but have been content with studies of process when dealing with the organization, distribution and effectiveness of our rheumatologic care system. The Commission should advocate external evaluative agencies and outcome rather than process criteria. HAVERS: Considering that the study which you described seems to be rather a classical one, how was it funded? EPSTEIN: It was funded to the Robert Wood Johnson Clinical Scholars Program. HAVERS: And what is the follow-up? I mean, you made the study of this community and you determined some real needs and some pressure points on what has happened. EPSTEIN: Well, we are going to do a parallel study of an urban center in which we have found there is non-referral to regional centers. We are going to compare the factecrs in a nonurkan and an urban center that determine referral patterns, cost, transportation and things like that. HAVERS: But, in fact, these are two studies as such without any follow-through to modify what you have found? EPSTEIN: We have been in contact with the California Director of Health, Dr. Lackner, and he has expressed his interest in supporting such studies and assigning a person from his staff to work with us so that outcomes of this conceived in terms of legislation and organization on a statewide level might result. That is the path to possible change that we are pursuing. HAVERS: Is this coming into one of your health system agencies? Is that being referred to them? 1-194 San Diego, california September 10, 1975 EPSTEIN: The level of organization, the health system agency, was one of 14 agencies in the area that we have interviewed. With their knowledge of prevalence of musculoskeletal diseases resources available, they too have essentially no information related to that particular county area. We certainly will feed them any information we develop, but they are looking to us, in a sense, to develop basic information about the problem. HAVERS: These studies have not been published? EPSTEIN: No. HAVERS: Will we get a copy of the studies? EPSTEIN: This is the work completed this summer and the report is being prepared ncw. HAVERS: Will the Commission be akle to get a copy? EPSTEIN: When it is prepared I will be glad to give you one. MELICH: Would there ke any chance of our getting a copy of what you have told us for our meeting? I am on the education committee, and this would be very helpful for our meeting next week in San Francisco. ENGLEMAN: Any other comments or questions? A little later this morning we will be hearing from Dr. Harold Mozar, who is from the California State Department of Health. We will call now on Virginia Chew. TESTIMONY OF VIRGINIA CHEW LIAISON NURSE, THE ARTHRITIS SERVICES _ LOS ANGELES HOSPITAL, DOWNEY CHEW: I am Virginia Chew. I am a liaison nurse in the Arthritis Services Branch of Los Angeles Hospital. I have also been very active in the allied health profession and in the Arthritis Fcundation, nationally and locally, and as such have been very concerned about the needs of the arthritis patient. I have a very healthy respect for true research and realize that this must go on. The allied health prcfession gets very concerned while taking care of people who already have the arthritis, and we are very concerned with the quality of life that they are forced to endure. Everyone who has spoken before me has touched or stolen much of my thunder, and about all I can say is to double what they have said. Some of the statistics have already been thrown out. As per the National Survey in 1969, of the vast amount of people in the country who have arthritis, only 20 percent of the 20 million Americans who do have it are under a physicians care. Three percent of these are under a rheumatologist's care, which brings up the fact that quality care is not available to people. 1-195 San Diego, California September 10, 1975 Now the Southern California Area is a sophisticated health care area as we see it. However, we have the same problems, I think, that the rural areas of the ccuntry have of deficits in care. The availability, for one thing -- and someone has already touched on this -- the fact that availability, quality care being availakle, patients with arthritis have great difficulty getting to places where care can be obtained. The disease, as you know, hampers patients from using public transportation, if public transportation were available. In the Los Angeles area, I am sorry to say, we do not have the best, and this is an extreme problem. Just knowing about available care is another very distressing thing. Patients who live within blocks of health centers are not aware of what can be done for them. The dissemination of information is very poor. I think that we need extensive education of patients, families, and health professionals. As allied health professionals, we feel that we have much to offer in the way of elevating the quality of life for patients. some of the recommendations that I would make to the Commission are the fact that there is a great need for outreach clinics or ambulatory care clinics which can be staffed by allied health professionals under the supervision of rheumatologists. This way, a greater numker of people can be screened and channeled into a good health care system. At this point in time, it is a very comme ci, comme ca, type of thing, the patients who actually can get good quality care. Carol Doolittle brought up the fact of counseling and this sort of thing. The complexity of the disease itself, by patients who are severely involved or those who are even not so severely involved, entails the fact that it cannot necessarily be handled by the physician alone. Once the diagnosis is made, then there is another whole world of what needs to be done with these patients. The registered nurse, the physical therapist, the occupational therapist, the social worker and the psychologist have a very important part to play in the health care of patients with rheumatic diseases. We feel very strongly that there is a great need to promote education and clinics of this sort. While I am talking frcm Los Angeles, which is a sprawling urkan area, our problems, as I said, are much the same as they would be in a rural area because even though it is right around the corner, many times patients «can't get around the corner. Education, as far as patients and families are concerned -- many education attempts have been made and there are no really successful educational prcgrams that I know of. We have tried it. Many places across the country have education programs of this sort for patients and families, and yet we really have no real way of evidencing what patients have learned. There is a great need for this and we feel the allied health professionals can do a great amount in this respect. This could be possikly by some sort of community workshops and this sort of thing that can be sponsored ky allied health professionals. ENGLEMAN: Thank you, Miss Chew. Your emphasis is on outreached programming; and we have Cr. Mongan and Dr. Reynolds, both of whom have participated in this, and I think it would be appropriate to call on them 1-196 San Diego, California September 10, 1975 at this time and then we can ask for comments and questions. Dr. Edward Mongan. SUBMITTED STATEMENT OF EDWARD MONGAN, M.D. MECICAL DIRECTOR, ARTHRITIS UNIT RANCHO LOS AMIGOS HOSPITAL I am Dr. Edward Mongan. I am the Director of the Medical Arthritis Unit at Rancho Los Amigos Hospital, which is an 825 bed rehabilitation hospital run by the County of Los Angeles and staffed by the University of Southern California Medical School. I would 1like to confine my recommendations this morning to the problem of planning for the optimum delivery of care for severely afflicted patients with arthritis. In addition to four weekly outpatient clinics where approximately 600 patients with arthritis are followed, the heart of the Arthritis Service at Rancho Los Amigos Hospital is a 25-bed inpatient service. Because of the well developed physical therapy, occupational therapy and orthopedic programs at Rancho Los Amigos Hospital, most of the patients that are referred to us are the 5 to 10 percent of individuals with the most crippling types of arthritis. While there is no cure for rheumatoid arthritis at present, an aggressive program of rehabilitation can almost always materially imprcve the functioning of all patients with arthritis, regardless of how severe their physical disabilities are. One of the major problems we face is to have the patient maintain the gains made in the hospital after they return home. While adequate follow- up care can usually be arranged for the 2/3 of our patients who live in Los Angeles County, approximately 1/3 of our patients come from other areas of the Southwest. A number of them come from small towns where there are no physicians, physical therapists or occupational therapists particularly knowledgeable or experienced in the «care of arthritis patients. Even in larger cities, there is no readily available way of knowing where health care personnel interested and skilled in the care of arthritis patients is to be found. In 1974, in addition to funding seven arthritic projects in . California, the California Regional Medical Program (RMP) organized a State Arthritis Council. An effort was made to include representatives from the many health groups which are involved in the care of patients with rheumatic diseases. In addition to representatives from the local chapters of the Arthritis Foundation .and such physician organizations as the Northern and Southern California Rheumatism Socieites, representatives from the State Department of Health, Visiting Nurse Associations, the Crippled Children's Society, the Department of Vocational Rehabilitation, the American Physical Therapy Association, etc., were included. The aim of the State Arthritis Council was to assess and coordinate future plans for arthritis care in California. The State Council has formed three subcommittees to accomplish this task. First, there is a Data Task Force which is attempting to gather information ccncerning the number of patients with arthritis in 1-197 San Diego, California September 10, 1975 California, their geograrhic distribution and also to assess the rheumatology manpower needs within the State. At present, a survey of physicians is underway to determine the number and distribution of doctors who have a special interest and training in the care of these patients. While it is easy to identify and locate internists who have subspecialty certification in rheumatology, there is no data as yet on the number of orthopedic surgeons who have similar interests and skills. The problem is even more acute in the field of physical therapy. In my experience, most physical therapists are used to dealing with patients with static illnesses and not with the ever changing joint involvement of many patients with arthritis. Therefore, unless they have some particular training and experience in the care of severely involved arthritics, most physical therapists do not feel comfortable in the care of these patients. It is hoped this data will identify gaps in arthritis care and provide long needed information essential for planning rheumatic disease programs. There is a second task force on health resources within the State. Their focus is not so much on individuals who care for arthritic patients, but rather on organizations and how patients gain access to these organizations. For example, an adolescent patient with severe rheumatoid arthritis may have contact not only with a physician and a physical therapist, but also with the Crippled Children's Society, the California Department of Vocational Rehabilitation, and the Visiting Nurse Association. Indeed, optimum care often can only be obtained if a coordinated program of all pertinent health agencies is arranged. Many times patients and even physicians are unaware of existing programs and how to arrange entry into suitable programs. To learn how referral to such organizations is made, a survey has been conducted in Fresno, California. Cooperation between individuals and organizations providing care to patients with arthritis is desirable not only for optimum patient care, but als» for the best use of financial resources. The third task force of the State Arthritis Council is attempting to assess the quality c¢f care of patients with arthritis. With the cooperation of the California Medical Association, it is sponsoring a patient care audit workshop in rheumatology. Health professionals representing social work, physical therapy, nursing, occupational therapy and physicians will be involved in this workshop. The quality of care task force is also assembling a statewide calendar of educational events and activities. Until now, there has keen no attempt to coordinate these programs. In my opinion, the type of information being obtained by the State Arthritis Council of California is essential if an effective comprehensive arthritis program is to be developed. I feel that the regional medical programs have performed a genuine service by organizing and financing this group and that it should be continued when the RMP program is discontinued next year. The exact makeup of the council, whether it should be on a statewide or regional basis and whether it should include patient representatives, are all questions that must ke addressed. I strongly recommend that the National Commissicn on Arthritis and Related Musculoskeletal ‘Diseases continue the support of the State Arthritis Council which the California RMP originated. 1-198 San Diego, California September 10, 1975 ENGLEMAN: Thank you, Dr. Mongan. We will have Dr. Michael Reynolds. SUBMITTED STATEMENT OF MICHAEL REYNOLDS,M.D. ASSISTANT DIRECTOR, RHEUMATOLOGY DIVISION UNIVERSITY OF CALIFCRNIA, IRVINE Disorders of the musculoskeletal system, of which arthritis and rheumatism are tke main components, are the major cause of chronic disability in the American population outside institutions. They probably should be regarded as the principal prcklem affecting the nation's health. Despite this, they have received a preposterously small amount of attention from the agencies charged with analyzing and improving health. The National Arthritis Act is a tiny initial step toward attacking this group of diseases with the attention, people and money required to reduce the extraordinary burden of ill health it produces. It will be almost impossible for the National Arthritis Commission to overstate the magnitude of medical problems it is to survey or to exaggerate the inadequacy of the response tc this problem up to the present. As the main cause of chronic limitation of activity, rheumatic diseases affect 1.7 times as many Americans as do cardiovascular (excluding cerebrovascular) disorders, and their prevalence exceeds that of neurologic, psychiatric, respiratory, gastrointestinal, genitourinary and neoplastic diseases combined. (1) Not only do musculoskeletal diseases limit the lives of more people than any other kind of disorder, but they affect a relatively young population. Whereas 45% of those with limitation of activity by cardiovascular diseases (the second most frequent cause of disability) are already at or past age 65, 69% of those so affected by rheumatic discrders are under 65 and nearly one-third are under age 45. (1) Most of these people will not have their lives appreciably shortened by their musculoskeletal disease, unlike the victims of other major causes of disability which produce limitation of activity by their effects upon vital organs such as heart, brain and lungs. The Government and press in recent years have paid most of their attention in matters of health to heart disease, stroke and cancer, with an emphasis on the lethal character of these diseases. One does not wish to deprecate the importance of these illnesses. But, it should first be noted that, except for cancer, disakility from these conditions is more prevalent than mortality. For every person who dies of coronary heart disease during the course of a year, five remain or become disabled by cardiac disease; for every person who dies of stroke, three are disabled by cerebrovascular disease. Mistaken emphasis on mortality obscures the true significance of diseases which sometimes cause death but more often cause disability; it also, and of more interest from the Commission's standpoint, leads to neglect of even more common diseases which rarely cause death. For each person dying in a year of ischemic heart disease, there are 96 people whose activity is limited mainly by musculoskeletal disease and 16 who are unable to work for that reason. For each of a year's victims of cancer, there are 200 limited and 34 unable to work because of rheumatic diseases. (1,2) And, once again, whereas most of those disabled by musculoskeletal conditions have years of restricted life 1-199- San Diego, California September 10, 1975 ahead of them, those who die mostly do so at an advanced age. For persons born in 1940, more than half the mortality from cardiovascular diseases is predicted to occur after age 70 for men and age 75 for women; more than half the mortality from cancer is predicted to occur after age 65 for both sexes. (3) In response to a rroblem of immense size, the Federal Government in recent years has allocated, through the National Institute of Arthritis and Metabolic Diseases, somewhat less than 2 dollars annually for each person disabled by rheumatic diseases. This is not merely inadequate, it is preposterous. The amount of money spent on research into rheumatic diseases is less than 1 percent of Federal expenditures for health; it equals 5 percent of the amount spent for the Forest Service, and 7 percent of that spent for research on cancer. The kind of Federal budget item which compares with research into the nation's leading cause of disability is aid to Afghanistan. (4,5) This kind of neglect is particularly incomprehensible when one learns that nearly 10 years ago the Department of Health, Education and Welfare calculated that programs for treatment of arthritis, costing from 50 to 225 million dollars, would be expected during their course to produce savings in wages and taxes of from 2 to 11 billion dollars. (4) Any government which declines an investment with a predicted profit of nearly 50 dollars for every dollar spent certainly needs to alter its fiscal behavior. Neglect of rheumatic diseases is not merely the fault of the Federal Government, but also of State and local governments, the press, the medical professions, and the public. The Commission's effects will be exerted through the National Government, so its failings are emphasized in this presentation. The consequences of this neglect are easy to find in this area where the Commission is now sitting. In Orange County, where I live, practice medicine and teach, there is a single comprehensive treatment facility for those with arthritis and related disorders, for a population of 1,685,000. This facility, the County Medical Center, treats people of all ages, including the indigent. For those able to avail themselves of our services, we can provide the help of rheumatologists and orthopaedic surgeons, of a physican and occupational therapist, and of a social worker. A comprehensive program of education, physical therapy, drug therapy and (when needed) surgery is available to patients. In turn, the patients help us teach physicians and other health professionals about rheumatic diseases. I calculate that the Medical Center is serving akout 0.7 percent of the people in the county who have rheumatic diseases for which they need and desire medical attention. Do the remainder, some 97,000, receive care from specialists outside the . hospital? For a population the size of the County's, the Arthritis Foundation feels that approximately 80 rheumatologists are required for optimum treatment of rheumatic diseases. Counting internists who are practicing rheumatology on a part-time basis, the County has the equivalent of approximately five rheumatologists, or 6 percent of its need. It is easy to describe inadequate facilities in terms of numbers; it is not possible to quantitate the persons who do not seek help for preventable rheumatic disability Lecause of public ignorance, or the 1-200 San Diego, California September 10, 1975 number who received incorrect diagnosis and treatment because of inadequate training of physicians and unavailability of specialists, or the number who cannot be served by the Medical Center because of lack of access to it. It is impossible to even estimate the number who have been afflicted with pain and disability which could have been prevented had adequate attention been paid to arthritis and related diseases in years past. The task faced by those of us who treat rheumatic diseases is of appalling size. The Act which established this Commission is a very small beginning of assistance which already is far too long delayed. It is apparent that the need which the Commission will find can hardly be exaggerated, nor will any recommendations it makes, no matter how generous, be likely to be excessive in proportion to that need. REFERENCES 1. Wilder CS: Limitation of activity due to chronic conditions, United States, 1969 and 1970. Vital and Health Statistics, Ser. 10, Nr. 80, 1973. 2. National Center for Health Statistics. Vital Statistics of the United States 1969. Rockville, U.S. Department of Health, Education and Welfare, 1974. 3. Preston SH, Keyfitz N, Schoen,R: Causes of Death: Life Tables for National Populations. New York, Seminar Press, 1972. 4, Nuki, G, Brooks, R, Buchanan, WW: The Economics of Arthritis. Bull Rheum Dis 23:726-733, 1973. 5. Golenpaul, D, editor: Information Please Almanac, Atlas and Yearbook 1974. New York, Simon and Schuster. ENGLEMAN : “Thank you very much. Questions from members of the commission? BATCHELOR: Perhaps we should hear from Mr. Shields on this. With so much of the emphasis being on the outreach and the allied health, I just want to volunteer the fact that we have had the participation of Dr. Sweezie, whom I am sure is known to the people in the Los Angeles area, and who, from the early meetings of the Commission and the work of the community programs work group, has kept the issues that you have described here very much alive to our consultant groups. HAVERS : Could I ask in regard to the RMP program how much is funded; and by the time those funds run out, will you have a report that will, indeed, evaluate the needs and services in your area? REYNOLDS: That is a good question, I am not sure I can answer it. There are seven regional medical program projects. I am concerned with the one at USC; we will have reports on that. Whether the State arthritis council itself will have a report, I must say that I do not know. MONGAN : I can speak about one part that will be completed very shortly. That is a survey of the distribution of physicians and 1-201 San Diego, California September 10, 1975 recognized rheumatologists throughout California and those expressing an interest in treating patients with such conditions. We have completed a telephone and interview survey of designated physicians; we will have data by ratio-to-population, ratio-to-potential-arthritics, training, and other aspects. If should be ready within a month. HAVERS: The arthritis council of which you speak is tied into the RMP program as such, Am I also correct then, that when the RMP funding finishes the arthritis council finishes? MONGAN: Yes; I think unless some alternate form of funding can be found, say through the motile chapters or something like this, yes, I believe that next June. HAVERS: TI see. ENGLEMAN: Thank you very much. It would be appropriate at this time to ask Dr. Mozar to come up. Dr. Harold Mozar. SUBMITTED STATEMENT OF HAROLD N. MOZAR, M.D. CHIEF, CHRONIC DISEASE CONTROL UNIT FAMILY HEALTH SERVICES SECTION STATE DEPARTMENT OF HEALTH SACRAMENTO, CALIFORNIA Introduction The ever-increasing needs for health services and continued escalating costs indicate that steps should be taken as soon as possible to reduce the burden of sickness in our society through rlanned programs of prevention. This proposal is offered as a framework for a strategy of prevention. Federal and State funds will be sought to support CATCH projects as models in which the private and public sectors combine their efforts to emphasize prevention and control in community settings. The concept of CATCH has been studied by the California Medical Association and the California Conference of Local Health Officers. Both organizations have approved it in principle. The State Department of Health now proposes to find support for three pilot projects for three years (each pilot project to represent a different population density) in which local medical socieities and local health departments will jointly plan and implement chronic disease control programs in the context of total community involvement. The goals of such conjoint action are to maintain the health of individuals, to reduce risk factors in individuals, to reduce the occurrence of chronic disease and to ameliorate their effects in the target population through the coordination of preventive services and matching of health resources with health needs. Reduced hospitalization, sickness and death rates will be reflected in economic benefits including reduced cost of medical care. Local medical societies will provide leadership in developing direction and policy and will encourage participation of members. Local -1-202 - San Diego, California September 10, 1975 health departments will provide overall coordination. Drawing from their own and other community resources, they will provide comprehensive support services to private physicians and their patients. Thus, private patients as well as patients attending public clinics will benefit from the support services. Planning, implementation and evaluation of CATCH projects will require involvement of health care providers, medical specialists in the respective fields, health administrators and directors, consumers, voluntary health agencies and third-party prayers. Determinations will be made of humanitarian and cost benefits of preventive approaches applied in the state of apparent health as well as in the course of such diseases as coronary heart disease, hypertension, congestive heart failure, chronic renal disease, stroke, cancer, arthritis, diabetes, chronic obstructive lung disease, malnutrition and other disakling conditions. It is in this setting the Federal or State funds can best be used (or redirected from less effective use) in order that preventive health services of proven value be provided for the adult and aging populations and for those suffering from cardiovascular disease, arthritis, etc. The Problem Chronic diseases are responsible for 70 percent of all deaths and 80 percent of the total days of disability. Two out of every three Californians 45 years old and older suffer from one or more chronic diseases. A relatively small proportion of the health dollar is spent on prevention. Even for diseases without known cause, there are preventive measures, which when properly applied, can prevent extention of disease or premature disability and death. Inadequate coordination of health services frequently results in frustration on the part of providers and recipients. Health and social services have so greatly proliferated in many communities that it is difficult for physicians and allied health personnel to be aware of all available health resources. Chronically ill persons outside of prepaid health plans are often forced to "coordinate" their own care, and they find it difficult to do so among the numerous medical specialists. (1) The asymptomatic individual at high risk has the same problem. Many screening programs are planned without adequate physician involvement and without adequate plans for long-term follow-up of patients. Too often such programs end up isolated from a truly comprehensive health care system(2) or there is expensive duplication and fractionation of services, resulting from well intentioned screening efforts conducted without arrangement for follow-up care. (3) Improved coordination would enhance the availability and accessibility of health services and resources. It would assure support services of an educational and motivational character. It would provide continuity between institutional, home, and ambulatory care, and would increase the number of persons who would benefit from rehabilitative services. Individualized health maintenance plans based on appropriate assessment are needed for apparently well persons at high risk, ambulatory patients, and chronically ill patients discharged from hospitals. Patients under medical and dietary regimens need assistance, encouragement, and sometimes -1-203 - San Diego, California September 10, 1975 monitoring. Some home fcllow-up care programs incorporating such features have demonstrated marked patient improvement and reduction of hospitalization. (4) The Challenge The need for proper coordination and utilization of health services constitutes an interesting and important challenge to all concerned with the prevention, treatment, and control of chronic disease. CATCH envisions the creation of a support system through the collaboration of the public and private sectors of health care. The local medical society would provide leadership in communities to initiate programs for getting apparently well persons at risk under treatment and to provide comprehensive health care to chronically ill persons who could benefit from such care. The surport of the medical community is essential to assure adequate follow-up of persons identified as needing continuing adherence to prescribed medical and dietary regimens. The local medical society would not only be the prime mover of the CATCH program in communities, but would be an equal partner with the local health department in planning, development and evaluation of activities. Physicians, nurses, administrators of health facilities, and public spirited citizens would be involved in planning and implementing the program. The local health department would be responsible for coordinating support services that include referring persons in need of medical evaluation and/or treatment to physicians or to providers of public care (in the case of those without financial resources); seeing that patients remain under care; education, motivation and emotional support of patients; insuring continuity of care between hospital and home, providing access to rehabilitative services and home visits. These support services can be provided and coordinated by the local health department through the use of multidisciplinary teams made up of public health nurses, health educators, social workers, and nutritionists under the guidance of a physician or public health nurse. The members of these teams can reach patients in their homes and in designated centers. They reinforce and supplement the health teaching and instruction of the patient's physician. Examples of activities that would be undertaken under CATCH are: (1) Coordination of Screening and Referral There is growing interest in mass multiphasic screening and in mass screening for such isolated conditions as high blood pressure, kacteruria in girls, glaucoma, etc. Such programs often get underway without adequate consultation with the physicians in communities or with health departments. Mass screening programs not adequately planned can inundate the medical care system and result in dissatisfactions and frustraticns on the part of screenees, practicing physicians, and referring agencies. There is reason to believe that without adequate follow-up such efforts are of limited value. Conceivably these pitfalls might be avoided to a large degree by medical societies and health departments planning jointly in the -1-204 - San Diego, California September 10, 1975 (2) context of total community invclvement. With proper planning and coordination, mass screening activities may be turned into positive community experiences. Home Follow-up Health Maintenance Health departments are able to respond to requests from private physicians for home follow-up cf selected patients. This service includes assistance in planning diets, assistance with prescribed exercises, teaching members of the family to give injections to the patient, and other nonmedical aspects of patient care. With some financial assistance and/or rearrangement of priorities, some health departments may Le able to expand these kind of services to a larger patient pcrulation. The ability to take large numbers of unexpected referrals would be enhanced by proper planning and coordination of effort. Our studies suggest that well-directed health maintenance efforts are economically feasible. We found that the number of hospital days of private patients with congestive heart failure can be reduced 50 to 75 percent by home follow-up care. Petty and his associates reported a 38 percent reduction in hospital days in the first year of a comprehensive health maintenance prcgram for 85 patients with chronic obstructive lung disease. The program consisted of organized outpatient and home fcllow-up care and required relatively few perscnnel. Hospital facilities were used only for an occasional episode of respiratory insufficiency (10 patients with 17 episodes). Petty, T.L., et al., Ann Int Med 70: 1109-1120, 1969. In Loma Linda, 135 congestive heart failure patients were observed for one year. During that period, 10 of 69 patients who received follow-up care were hospitalized for a total of 166 days, while 35 of 66 control patients without follow-up care tallied 525 hospital days. Subsequently, a home follow-up care demonstration project was undertaken in E1 Dorado County by the local health department without benefit of the richer professional resources of a university. At the end of the first year of follow-up care, the total number of days of hospitalization for 30 patients was 140. In the year prior to home follow-up care, the total number of hospital days for the same patients was 283. The study in Loma Linda revealed that 139 of 359 reduced hospital days--almost half--related tc noncardiac diseases, even though instruction focused on congestive heart failure. This finding suggests that noncardiac patients as well as cardiac patients may benefit from home follow-up care. The benefits of home follow-up care derive from the faithful following of prescribed medical and dietary regimen. The health education, the friendly visits and the continuous surveillance of health status are factors that help patients follow such a regimen. -1-205 - San Diego, California September 10, 1975 (3) Group Health Education for Ambulatory Patients Some health departments are well equipped to conduct group health teaching and motivational activities geared to specific chronic diseases and disease states. With planning, coordination, and possibly some financial assistance, such educational programs could ke extended to serve ratients referred by private physicians. Similar services could be arranged for apparently well persons found to be at high risk. (4) Miscellaneous Joint efforts by medical societies and health departments can spur development of needed health services which may be deficient or nonexistent in specific communities. These services may include diet counseling and other preventive services, home care, rehabilitative services, special therapies, and hospi tal discharge planning. Possible Sources of Funds Funding for pilot projects could be sought through California legislation; a contract with the Department of Health, Education and Welfare; or a foundation grant. Another possible resource may be through contracts between Medi-Cal and selected local health departments which would provide funds for defined home fcllow-up services such as described under Example No. 2. Voluntary health agencies may be able to provide some funds. Should a State Plan for the Ccntrol of High Blood Pressure be developed and funded, it may ke possible to support CATCH projects under such a plan, since it would undoubtedly recommend that local hypertension control activities ke conducted as much as possible as part of comprehensive health care rather than as isolated activities. Evaluation and Long-Term Expectations It is expected that more and more preventive health services will become reimbursable by third-party and insurance payers as program effectiveness and favorable benefit/cost ratios are demonstrated. For this reason, the evaluation of program effectiveness and the cost effectiveness of specific activities would be of great importance in relation to each CATCH project and to the total program. Results and findings would be published in appropriate medical journals. The long-term expectation for CATCH beyond a three-year period of funding would be that conjoint approaches in chronic disease control would have been shown to be of much value and that such approaches would have become the lifestyle of an ever increasing number of local medical societies and health departments. We believe that the participation and contribution of local health departments would be properly seen as supportive of the private sector and that such support would strengthen - 1-206 - San Diego, california September 10, 1975 rather than weaken the integrity cf the free enterprise system of health care. We expect that continuation of this type of collaboration between local medical societies and local health departments would be supported by local government, not necessarily by increased appropriations, but by allowing local health departments to adjust their priorities and to contract with payers of health care for specific preventive health services. Steps in the Development of CATCH (1) Approvals. Approval in principle has been granted by California Medical Association and the California Conference of Local Health Officers. (2) Obtaining Funds. Funds for contracting with local medical societies and local health departments would be sought by the Chronic Disease Control Unit, working through administrative channels of the State Department of Health. (3) Advisory Committee. An advisory committee with representatives from the California Medical Association, the California Conference of Local Health Officers, voluntary health agencies and other organizations would meet with State staff, initially with ad hoc status, to consider the potential financial requirements for the operation of CATCH projects and to make a recommendation of the maximum level of funding for three pilot projects. After funds have been obtained, the advisory committee would review guidelines for proposals, establish criteria for selecting proposals, and recommend for funding those that are selected. Finally, the advisory committee would evaluate accomplishments of the program. (4) Requests for Proposals. When funds become available, requests for proposals from local medical societies and local health departments would be announced. Proposals would be submitted conjointly and on a competitive basis. Following guidelines supplied by the Chronic Disease Control Unit, the proposals would include descriptions of (a) the population and target groups to be served, (b) aims and objectives, (c) methods to be used, (4d) proposed program activities and staffing, (e) proposed organizational relationships, (f) plans for evaluation, (9) extent of community involvement, and (h) budget. To the extent possible, methods used would be such as can be evaluated by demonstrating effectiveness in getting persons at risk under care and in reducing disability and hospitalization. (5) Selecting Projects. Selection would be made by the State Department of Health upon recommendaticn of the advisory committee, taking into consideration the quality of proposals in meeting previously adopted criteria for funding, the apparent potentials for maintaining stable organizational and functional relationships, and the geograrhic areas. (It is believed that the CATCH concept would ke difficult to apply in large -1-207- San Diego, California September 10, 1975 metropolitan areas such as Los Angeles and Oakland without specifying some limits in the types of services to be undertaken and the geographic area to ke served. The optimal population range for CATCH activities is yet to be determined.) (6) Consultation. Consultative assistance would be offered by the Chronic Disease Control Unit staff to applicants in preparing proposals and to project staff during the implementation and operation of rrojects. Conclusions While good working relationships already exist between many local medical societies and local health departments, it is our belief that such relationships should be encouraged by the California Medical Association and the California Conference of Local Health Officers. Pilot projects such as are envisioned would demonstrate what may be accomplished through conjcint approaches in controlling diseases by improved matching of health resources with health needs. The CATCH program would include components of evaluation and documentation to facilitate wide duplication of the most rewarding approaches. I am asking the National Commission on Arthritis to approve the concept of CATCH in principle and to encourage the utilization of this concept in programs that are to be conducted under the National Arthritis Act, and thus, to promote the strategy of prevention through community based coordinated efforts to maintain the individual citizens health and reduce the burden of disease. Thank you. ENGLEMAN: Thank you, Dr. Mozar. Any questions? Dr. Batchelor. BATCHELOR: I would like to thank Dr. Mozar for bringing this material to our attention. One of the assignments to the Commission is to learn and to record information relating to care, coordination of care, the activities at the State and local levels; and you can appreciate that this has been a a slow process. We have learned something with the help of the reporting system developed through the Association of State and Territorial Health Offices. We have made a very modest start in visiting regional officers. Dr. Engleman has keen in touch with Dr. Lackner, here in California. We are very glad to add your contribution to what we are learning and we will look for some opportunity to follow through here. MOZAR: Thank you very much. ENGLEMAN: We will now proceed. I will ask our friends from Las Vegas to come forward: Cecile Mason, Mrs. Georgia Hughy and Karen Connett, please step forward. Cecile Mason. - 1-208- San Diego, California September 10, 1975 TESTIMONY OF CECILE MASON PATIENT MASON: My name is Cecile Mason and I bring you greetings from Las Vegas. I am not going tc take very long and bore you with my success story. I call it a success story in that it seems like when I did finally find a doctor that knew something about arthritis, it brought me from death to life. My depression was so great until I just really didn't even care about living. I have had arthritis about 12 years, 7 years of which were in intense pain. The physician I had in Las Vegas, I don't know whether he didn't know anything about arthritis or didn't care, but he didn't tell me; all he did was give me cortisone and pain pills. It really is a wonder that I didn't become an addict because I had got to the point where I was taking one hundred percodan a month, and then it got to the point where they were not even doing any good. I have had, since finding the proper doctor -- and I did find some wonderful doctors at UCSD -- I have had two total hips and a total knee. It has really made a difference in my life. I feel that I can go on now and do something productively. I really didn't know that we were going to have to make a speech when we got here, but this is mine. I am certainly glad that I did find Dr. Convery and Dr. Zvaifler through a rheumatologist in Seattle; Dr. Wilkins. I want to leave with one question: Is there no Arthritis Foundation or anything in Nevada? I know that there are so many people in Nevada, in Las Vegas, that I have run across that have no help for their arthritis. They figure there is no help. Is there a doctor there? REED: My name is Jean Reed, Director of the Medical Program, Southern California chapter of the Arthritis Foundation. I would like the Commission to know that there are plans underway for forming a chapter of the Arthritis Foundation in Las Vegas. The Southern California chapter has been given a loan from the national office of the Arthritis Foundation to assist them in forming a chapter there. I could give you more information and I would ke very happy to when the meeting is over. There are hopefully some meetings -- educational meetings for the public, as well as some meetings for physicians in the very near future. Unfortunately, there is not a rheumatologist in Las Vegas, but hopefully there will be in the ccming year. ENGLEMAN: Thank you, Mrs. Reed. I am sure that Mrs. Mason and Mrs. Hughy will be delighted to hear that. Mrs. Hughy would you like to make some comments? Whedon: TI think that it is incredikle that you have to go to Seattle to find physicians when there are physicians here so close. I think that speaks more than anything of the difficulties of the referral process. Thank you. -1-209- San Diego, California September 10, 1975 TESTIMONY OF MRS. GECRGIA M. HUGHY PATIENT Hughy: I am Georgia M. Hughy of Las Vegas, Nevada. Of course, I think that Mrs. Mason has covered everything, so I will go on with mine. I have been suffering frcm arthritis for more than 7 1/2 years. I have gone from Texas; Arkansas; Mexicali, Mexico; the Los Angeles area; to the Moore White Medical Clinic; and I should say, nearly every doctor in Las Vegas, Nevada. I went to Mexicali, Mexico for 3 years and was given medication. I really don't know what kind of medication; they didn't tell me. I had after effects with which I was very ill and in the Las Vegas hospital for three weeks. Doctors there didn't know what caused it. Although I told them about my medicaticn, they didn't know what kind of medication. I have suffered; I had given up once. I really felt that I would be better off dead than living. In 1972, I became very ill and came to Scripps Research Foundation and they diagnosed that I had rheumatoid arthritis. So, they recommended knee surgery. I went back home and fortunately, I met Mrs. Mason who had previously had two total hips and a total knee. I met her at a wedding reception, and she toled me of the doctors; Dr. Zvaifler and Dr. Convery, the surgeons here at University Hospital. I don't think that she really thought that I would come, so she brushed me off and said, "I'll talk to you about it later." So, I called and asked her to make an appointment, and she did. On June 11th, I came to the University Hospital; the 13th I had surgery. I must say, since that time I really have a new look on life. I couldn't walk very well, couldn't get up in the morning, and for 3 years I was unable to get into a bathtub; I have had showers. I must say that a week ago I have been taking tuk baths, getting in and out of the tub by myself. I must say that I have a total left knee replacement. Without my therapy I could not have made it. The Therapy is wonderful, besides having the total knee. After leaving here, the University Hospital gave me instructions on how to give myself therapy. I was so afraid that I would not be able to give myself the right kind of therapy, so I went to the Southern Memorial Hospital and had therapy. It is a pity to say that they just don't know how to give therapy. Well, I quit -- I stopped; it was $12 a day. I kegan to do as my therapist instructed me to do at the University Hospital. I think I am doing very well to just have had surgery; a total knee surgery the 13th of June, 1975. ENGLEMAN: Thank you, Mrs. Hughy. Perhaps we can call on Karen Connett, who is a spokesman for the allied people at the University. = 1-210~ San Diego, California September 10, 1975 TESTIMONY OF KAREN CONNETIT OCCUPATIONAL THERAPIST CONNETT : My name is Karen Connett. I am an occupational therapist. I would like to address my remarks to the lack of training for paramedical people in the treatment of rheumatoid arthritis and other forms of rheumatic diseases. When we set up our program at University Hospital a year ago through funds offered by the Regional Medical Program's grant, we had the services of a physical therapist, occupational therapist, social worker, a vocational counselor, a nurse, and other interested persons. However, they were relatively untrained in the treatment of rheumatoid arthritis, and only under the guidance of Dr. Convery, Dr. Zvaifler, the other rheumatologists, and the other physicians were we able to set up an effective program for treatment. We had almost nothing to go on. There were no models for setting up programs for comprehensive treatment that we knew of and that were effective. Since that time we have been able to provide services of physical therapy and occupational therapy on an inpatient and outpatient basis for the patients. The social worker has been busy setting up group programs -- that are monthly programs -- where patients can get together and discuss their problems that they have in common. She is also involved in the problem of sexual counseling for people with arthritis. our vocational counselor has attacked the problem of employment for people with arthritis and has been working on a program of homebound employment for these people. There is information from the American Occupational Therapy Association that reports that less than one-half of one percent of all registered occupational therapists have any experience dealing with people with arthritis, as far as knowing what to do to treat them. I feel that a center such as the one that is being proposed would provide the facilities, as well as the manpower, to offer appropriate treatment for paramedical personnel in this area. Thank you. ENGLEMAN: Thank you very much, Ms. Ccnnett. SHIELDS: I would like to ask you a question regarding this. I agree with you, of course, in terms of the allied health person receiving better training so we will have more of them available to help physicians in the treating of arthritis. Where do you feel that the training should occur; should there be more training in arthritis at the basic level; and in other words, as you were receiving your training as an occupational therapist, should that be when you receive training in arthritis or should it have been in a speciality kind of a program after you had received your kFasic training as an OT? CONNETT: I think that there needs to be training as a person is going through his basic educational program. There doesn't have to be ~1-211~ San Diego, California September 10, 1975 specialized training to a great degree kecause, as you know, there are so many areas to cover that you would not be able to get into real specifics. But, I do think that there needs to be more emphasis on the kasic levels. SHIELDS: I am gathering as much information for myself as well as for anyone else. The point I am getting from ycu and also from previous comments is that not only is arthritis and chronic diseases relatively underrepresented in the medical school curriculum -- which, of course, produces the doctors that are trying to deal with patients -- but also the training of allied health personnel and occupational physical therapy is not deliberately oriented to the problems of the arthritics. CONNETT: That is exactly right. SHIELDS: I am amazed. ENGLEMAN: Well, I thank you ladies very much for coming and joining us. I will now call on Nancy Burk, Alliscn Weathers, and Joanne Weaver. Is Patricia Fischer here? If so she might come forward also. Nancy Burk. TESTIMONY OF NANCY T. BURK PATIENT BURK: My name is Nancy Burk. I am an arthritic and have been for 29 of my 40 years. I got arthritis when I was 11 years old. consider this headline 5 to 10 years from now, "ARTHRITIS CURED BY PROCESS OF TOTAL MIND-BODY COORDINATION AND INTEGRATION" Impossible, you say? TI don't think so. If San Diego is chosen as one of the sites for arthritis research, this can be a reality. Projecting into the future as to how this can be accomplished, I see a better doctor-patient relationship with total communication between the two. The doctor explaining in detail to the patient what arthritis is, what tests and treatment are necessary, their purpose, the results afterwards and the positive attitude of the patient getting well and the patient continuously feeding back information to the doctor about what is going on in his/her body as to the specific positive or negative effects of the treatment. I see a portfolio for getting well made up for each patient where alternate forms «cf treatment would ke considered according to the patient's ‘Programming or conditioning concerning sickness or healthy living. Based on this data, therapy (both psychological and physical) could be prescribed for giving the patient hope and permission to get well. Therapy prescribed would be: acupuncture, Transcendental Meditation, Transactional Analysis, water therapy (jacuzzi pools prescribed for home use), biofeedback, relaxation techniques and mind control. Surgery could be used, if necessary, and drugs would be used as a last resort. More research is needed on the effects of one drug, such as birth control pills that women take, mixed with other drugs used in the -1-212- San Diego, california September 10, 1975 treatment of arthritics. Current data shows that women on steroids over a long period of time produce deformed children, and continuous use of aspirin produces stillborns. The patient's family would know what is going on and would be a part of the treatment to aid and support the patient in getting well instead of the whole family being invested in suffering. Since arthritis is recognized as a psychosomatic illness, the importance of staying away from stressful and emotionally upsetting conditions should be emphasized. San Diego is the focal point for research in the above ghyschological therapies, and it stands to reason that the arthritis center should be located here to work with these other groups. I have had arthritis 29 of my 40 years, and lupus was diagnosed in 1953 from tests given me. During this time, I have had every kind of treatment there is. A dcctor prescribed cortisone for a period of 1 year to overcome a small flareup of the lupus. More and heavier doses were prescribed to take care of the situation. My body reacted to the overdose and I almost died. I have had all kinds of negative effects with drugs, although I have had some positive. The last two years I have been involved with psychclogical therapies and have found them to be much more successful. I am sitll on drugs, but have a well balanced treatment program. From the time my lupus was diagnosed, and for years afterwards, I showed positive on the tests. The last few years have shown no indication of lupus whatsoever. I have given myself permission to get well and so has my doctor, husband, relatives, and friends. I am living a winning life and am a "Get on With It" person. When I was 16 years old, I was told by numerous outstanding San Diego doctors that I would never walk again, I would never finish school, get married, or work. Today I am married, working on a job earning $15,000 a year, and have a Master's degree. What makes the difference between other people, who are unemployed due to arthritic pain and have given up, and people like me, who continue to find new ways of treatment fcr getting myself well? I still have pain, but I believe as TI progress more into these psychological therapies, I will be cured. My fondest dream would be to see this become a reality for all arthritics. For my sake and the sake of all those people who have given up, make a decisicn to locate an arthritis research center in San Diego. ENGLEMAN: Thank you, Mrs. Burke. We have Allison Weathers here next. TESTIMONY OF ALLISON WEATHERS PATIENT Weathers: Hello, my name is Allison Weathers. I am 13 years old and I have had juvenile rheumatoid arthritis since the age of U4. It started -1-213- San Diego, California September 10, 1975 in my left knee and then moved to my left wrist. My mother took me to many specialists; some doctors diagnosed me as having polio and other doctors as cerebral palsy. After a while, my right wrist and ankle became affected. My mother took me to more doctors and specialists. I was then diagnosed as having lupus. One orthopedic doctor broke my wrist and put it back in a cast, thinking that after this I would be able to move it better. But, it went back into the same position. About a year or so later, one specialist diagnosed me as having juvenile rheumatoid arthritis. By that time, I was unable to oren doors or even walk to school. They started me on a medication called prednizone, which made me feel better. The medication, at the same time, made my face very round and I gained a lot of weight. This made me very self conscious. While I was on this medication, I was on a special diet. My mother made me special meals with no salt. I went for many, many lab tests, skin tests, and had a muscle biopsy. I went to all kinds of therapy at Childrens Hospital. They worked with me three times a week; with my knees, wrists and ankles. I sometimes worked in a swimming pool or a gym. They both seemed to help a lot. The last few months have been pretty good, but I assume it is because of the nice warm weather. During the winter I have times I can't go to school. When I go on family outings that require a lot of walking, I have to use my wheelchair. Last year I had to wear a leg trace at night. I am now wearing a hand brace at night. They are both very uncomfortable, but it is something I have to do. I am also wearing a plastic foot support in my shoe. The doctor hopes this will pull my foot into a better position to improve my walking. I hope someday that there will be a research center here in San Diego to help other children so they can do the things that I am unable to do. Thank you. ENGLEMAN: Thank you, Allison. May we ask Joanne Weaver now to speak. TESTIMONY OF JO WEAVER MEMBER, PARENTS OF CHILDREN WITH ARTHRITIS WEAVER: I am Jo Weaver,a housewife and registered nurse. I come today in behalf of many people who suffer with arthritis. My grandmother is crippled with rheumatoid arthritis, my father has gout and spondylitis, and IT have rheumatoid arthritis as well as several other kinds of complications. Mostly, I come in behalf of the younger, generation; my daughters and their friends. Susan is 15 and has juvenile rheumatoid arthritis. Sandra is showing signs and symptoms cf arthritis. Our parent's Group represents many afflicted children; and there are many young people in the San Diego area whose parents are unable to come to our meetings. In our adult Sunday School class alone, there are three families whose teenagers have rheumatoid arthritis. -1-214 - San Diego, California September 10, 1975 Our great hope for these young people is in research. We are very fortunate to have good care available. However, we know greater help and hope will come if a center for research and treatment is located here. Thank you. ENGLEMAN: Thank you very much. Patricia Fischer. TESTIMONY OF PATRICIA FISCHER PARENT OF PATIENT FISCHER: I am Patricia Fischer. I am speaking for my daughter, Becky, who is 14 years old. I am not prepared at all today, I didn't write a speech or anything. We were going to have Becky up here today, but she is kind of afraid, so I am here in her place. Becky started with rheumatoid arthritis at 7 years old. She is now 14 years old. I think we very much need a research center here to help these children. I watch my daughter not be able to turn knobs on doors at times -- different things. Her finger is crooked; she has this disease very mildly, I am told. She is only on aspirin, but I am wondering what this aspirin is going to do to this child over a long period of time. When she goes barefooted or goes to the beach, she has crooked toes. There are these different things, and I would love to see this research center started. I want them to find cause, the cause of this disease, the cure; and I would like to see more done. I have been told since this child was 7 that they are doing as much as they can do, and how well she is getting along, but it is very depressing. It has keen 7 years and it hasn't gotten any better. I am very lucky that it has not gotten any worse. It hasn't effected any of my other children. Becky does have therapy which helps her. She has a finger splint which she puts on at night and sleeps with. But, I still see these little things happening to this beautiful, perfect child that should be normal, and I want to know why they are happening. I want this research center to go through. Thank you. ENGLEMAN: Thank you. All of you that have expressed such concern for arthritis in children should be reassured by the fact that there is provision in the National Arthritis Act for special attention to children. As I indicated earlier this morning, we do have pediatricians who are working in our groups and who surely will come forth with specific recommendations as they apply to arthritis in children. TI wonder if any of the members of the Ccmmission would like to respond to Mrs. Fischer. Yes, Mrs. Melich MELICH: I am very attached by what you say; I should not get emotional myself. I am on the part of the Commission that has to do with educating the patient and the patient's family and the relationship to the community. Our main purpose in this particular part of the committee is «1-215~ San Diego, California September 10, 1975 to find out just exactly how you feel, how you have been treated, and what the system will be to help ycu in the future. In fact, I have just finished a paper called "Patient Advocate." In other words, we want everyone to kncw what the patient goes through and the relationship of how a family can help that patient. I have seen some things that I felt were definitely neglected. So, please, any of you that have had any involvement, just know that we are trying. ENGLEMAN: Any other questions or comments? Thank you again for coming this morning. Your comments and questions will be seriously considered. We will ask now Dr. George Lockie, I'r. Chadwick and Rene Coffman to please come forward. Dr. George Lockie. TESTIMONY CF GEORGE LOCKIE, M.D. ARTHRITIS CLINIC, CHILDREN'S HOSPITAL LOCKIE: Good morning. Thank ycu for the opportunity of letting me come here today. I am Dr. Iockie; I am a pediatrician. I have had extra training in dealing with children who have arthritic diseases and I am in charge of the Arthritis Clinic at the Childrens Hospital here in San Diego. Relief from arthritis comes in three forms. The first is immediate which involves delivery of health care. The second is longer in its goal and concerns the training of medical and para-medical personnel involved in treating children with arthritis. The third aspect involves future goals, which rests upon the knowledge gained through research. Our clinic at Children's Hospital in San Diego stresses the first item. We see approximately 200 patient visits per year in our Pediatric Arthritis Clinic. Our area involves the metropolitan San Diego area, extending as far as El Centro, which is arproximately 100 miles east, and as far north as Fallbrook, which is 50 miles. We maintain a close relationship with the Los Angeles Children's Hospital Pediatric Arthritis Unit. Our patients are usually referred from local physicians. We either assume total care of will direct and assist the patient's physician to deliver appropriate arthritis care. We have a team approach. We regularly have a physical therapist at the clinic to ‘see all children. We can also call upon the occupational therapist, general orthopedist, hand orthopedist, pediatric opthalmologist, and a pediatric dentist. We also stress the needs of social service, family counseling, and financial counseling. Our clinic has a mother's group which voluntarily bands together for a monthly meeting at night where a topic is presented by a lecturer in the field of arthritis. Also, the mothers have a discussion group to talk over their problems, challenges, and successes. At Childrens Hospital we have a rehabilitation floor geared to treating children with chronic diseases. =1-216 San Diego, California September 10, 1975 From the best availakle figures, there are probably at least 1,000 children in our area who have juvenile rheumatoid arthritis. As you can see, we are only scratching the surface now. Due to inadequate personal finances, there are many who are not available for our care. I feel that we do need a pediatric center to best take care of these children. As you know, rheumatoid arthritis is different in children. The diagnosis is different. We do see children who present as fever or as a mono-articular disease. The course of the disease is different, especially the complicaticns of the iritis. The peak age is between 1 1/2 and 3 years of age. We put much stress on the dental and hip pathology that can occur. The therapy is different. There are certain drugs used in adults which are not acceptable for children. Also, the physical therapy and occupaticnal approach is different, and is more specialized for these children. San Diego needs a pediatric center, either as a localized group, or as a consortium with the Children's Hospital in Los Angeles or Stanford in San Francisco. I feel that we need a center so we may offer all three forms of relief instead of just one. At the present time, the services are paid for by the patients themselves through a fee-for-service or through the Criprled Children's Services of California. Thank you for your consideration. ENGLEMAN: Thank you. We are going to go on now to Dr. Chadwick. TESTIMONY OF CAVID CHADWICK, M.D. PEDIATRICIAN, CHILDREN'S HOSPITAL CHADWICK: Well, it is hard to know what to say at the end of a long morning when you have all been sitting here now in your fourth hour, probably experiencing severe hunger pains. An awful lot has been said and an awful lot of it has been right; and I have listened to a great deal of it. Perhaps I can make it very brief and hit just a few high spots as I see it from the point of view of a medical director of a Children's Hospital and a pediatrician of 25 years experience; and I guess I have seen 50 to 100 kids with arthritis. I have seen some get well and some that did not. The multidisciplinary approach that Dr. Lockie was talking about was the best we have at the present time. It isn't very good. It is very expensive; it is not always completely effective and preventive in 1long- term disability, as you know. One important goal of centers, as you know, or the center concept -- regional and community -- is to see that this approach is availakle to everybody that needs it. I don't think it is available to everybody who needs it now. I really share Mrs. Fischer's distress with the adequacy of todays means of treatment and prevention of arthritis. We are in the medieval stages of our medical development here. The things that we are doing here now will look to us 20 years from now like the leech looks to you looking -1-217 - San Diego, California September 10, 1975 backwards. We are primative and have a long way to go. I really feel that one of the major benefits of developing centers will be to provide foresight for thought and action in the research area =-- to develop a better means of approach to this. This is one of the reasons I feel so strongly that it should happen. As I have to say, finally, I feel so strongly that it should happen, especially for children. ENGLEMAN: Thank you, Dr. Chadwick. Before we call on Ms. Coffman, I wonder if there are any questions from the members of the Commission to both of these gentlemen? POLLEY: By and large, do you take the radius of influence of Children's Hospital, what, at about 50 tc 100 miles from San Diego? LOCKIE: It is about 100 miles east and about 5C miles north. CHADWICK: And about 50 feet west. ENGLEMAN: All right, Ms. Coffman. TESTIMONY OF MRS. LORENE E. COFFMAN PATIENT COFFMAN: As an arthritis patient for more than 30 years, I am keenly aware of the availability of treatment and concerned about the future. From Minnesota to California I have had the good fortune of receiving excellent care from many fine physicians. The principle medication in my treatment over the majority of years has been cortisone derivatives, until earlier this year when a change was made to Chlorambual. I have had the privilege this past year of also rparticipating in various tests as a research patient at the Scripps Foundation in La Jolla. My suggestions for the budget justification and expenditure of Federal funds in behalf of arthritis suffers centers around three basic concerns: (1) Improvement of treatment facilities throughout the country by the establishment of specialty centers such as those existent for treatment of burns and tuberculosis. (2) Hand-in-hand with treatment would be monies spent for education regarding arthritis diseases, meaning early detection as well as teaching people how to cope with their problem. (3) Finally, and equal in importance to the first two concerns, would be research funding for a brighter tomorrow in the form of grants to physicians/institutions and subsidation of the treatment of meaningful cases to benefit others. I am personally heartened by the possibility of financial assistance to the problem of arthritis. Thank ycu for the opportunity to provide input to this most important effort. I trust that your judgment will -1-218 San Diego, California September 10, 1975 confirm the need for increased attention to the matter, and I wish you God's strength in your deliberations. ENGLEMAN : Thank you, Miss Coffman. Since Dr. Polley is here from Minnesota, would you like to respond? Polley: Well, I thank you very much. I guess he wants me to tell you that we have seen Mayo patients wherever I have been. ENGLEMAN: Any other comments? Well, fine. I thank you, and thank everyone else; and we will now adjourn the hearings. -1-219~ San Diego, California September 10, 1975 SUBMITTED STATEMENTS DR. VIRGIL HANSON, American Academy of Pediatrics August 29, 1975 The American Academy of Pediatrics recognizes arthritis as a major health problem in the United States affecting both adults and children. As the seriousness of arthritic afflictions are often overlooked in the pediatric population, the following information concerning arthritis in children is submitted for consideration in planning a national program for arthritis: Number _1 _-- Definition. Arthritis in children, as in adults, is characterized by acute and chronic inflammation in the tissues lining the joint cavities. Symptomatically it is characterized by pain, swelling, and limitation of motion, and in its chronic form results in the destruction of cartilage and bone adjacent to the joints, deformities, and inability to move the affected joints. Number 2 --Prevalence. Juvenile rheumatoid arthritis is the most common form of arthritis in childhood and affects an estimated 250,000 children in the United States. There are probably equal numbers of children who develcp arthritis from other causes and a list of these is attached (Appendix A). Many of these diseases are closely related to juvenile rheumatoid arthritis, and crippling may result from these diseases as well as from juvenile rheumatoid arthritis. Their consideration is essential in planning an arthritis program for children, but much remains to be learned concerning these related conditions in the pediatric age group. According to Dr. Jane Schaller, the number of children affected by juvenile rheumatoid arthritis in any one year exceeds the number of children affected by all forms of malignant neoplastic disease and is larger than the total number paralyzed by poliomyelitis in a total of any 10 of the pre-immunization epidemic years. Juvenile rheumatoid arthritis begins most commonly between the ages of one and five years. More than half the children will ultimately recover, but many thousands will reach maturity each year severely crippled. Number 3 -- Clinical considerations. The effects of Juvenile Rheumatoid Arthritis are: (1) Crippling due to destruction of joint tissue and bone and the formation of scarlike repair tissue in 30 percent or more of the cases. (2) Visual impairment occurs in 10 percent or more due to inflammation of the eyes, which may lead to blindness. (3) Impaired growth. (4) Daily high fevers lasting months or years are common. -1-220- San Diego, California September 10, 1975 (5) Inflammation around the heart (pericarditis) occurs in one-third or more of the children. (6) Early diagnosis and treatment are helpful in preventing disability, but no cure is yet available. Number U4 -- Differences from Adult Rheumatoid Arthritis. Juvenile rheumatoid arthritis differs from the adult form of the disease in the frequency of high fever, greater tendency to recovery but a more rapid progression of the severe forms, growth impairment, and a higher incidence of severe eye involvement. Psychological problems, familial relationships, and the need for education differ from the psychosocial problems of adult rheumatcid arthritis. Number 5 -- Problems. (1) There is no cure for juvenile rheumatoid arthritis and the related disorders, as the cause is not known. The result is severe crippling for thousands of children each year. (2) Medications have been approved for the treatment of adult rheumatoid arthritis but are not available for children because of the lack of facilities to carry out the needed clinical trials in children. Hence, we find ourselves extremely limited in the medications we can use for treatment. Since the physiology of the growing human crganism differs from that of the mature state, adequate carefully controlled trials of new antiarthritic drugs in children are essential. (3) Informaticn is lacking concerning many of the related arthritic disorders in childhood. These conditions need study and further definition. (4) General knowledge of the diagnosis and treatment of arthritis in children is lacking among physicians and allied health personnel. Here at Children's Hospital in Los Angeles we may take a child into our rehabilitation program for a prolonged period of time. Upon returning that child to his home community, we find that the result of our rehabilitation care has been lost, not due to the indifference of the local professional people, but due to their lack of information as to how to treat the arthritic child. (5) There are inadequate numbers of trained pediatric rheumatologists and supporting personnel to cope with the rroblem. It is estimated that there are only 30 trained pediatric rheumatologists working in 15 inadequately staffed centers in the United States, a ratio of one pediatric rheumatologist to 15,000 arthritic children. Number 6 -- Recommendations. (1) The estaklishment of arthritis centers for children in all major regions in the United States is recommended. Specific centers for children would be particularly advantageous for centers -1.22]1 - San Diego, California September 10, 1975 serving large populations, as the problems of the pediatric age group have many specialized characteristics. In less populous areas, centers capable of treating both adults and children may be tte only practical means of handling the problem. (2) The functions of the arthritis centers serving children should include: 1) comprehensive care; 2) basic «clinical research related to arthritis in childhocd; 3) training of physicians and allied health personnel; 4) dissemination of information to professionals concerned with the care of children in the adjacent and outlying areas cf the center's region. (3) These centers should encourage and aid the development of secondary centers or «clinics in other institutions or new facilities where none exist. (4) The ultimate goal of the program should be the establishment of at least one major center for children with arthritis in each region of five million people in the United States. Number 7 -- Discussion. Care requires not only improvement of medical, surgical, and physical of treatment, but improvement in knowledge where the patient lives. The responsibility therefore should be to provide constantly updated informaticn in a meaningful way to the professionals in the local treatment area. The physical therapist, the occupational therapist, the educators, and the child's family, as well as the physicians, all need to receive information provided in such a way as to emphasize what is really known and what is speculative. Such an educational effort would require the development of new educational programs, but the technology is availakle for the rapid dissemination of information and the educaticnal aspects of the center! s function should have priority. It is important that research ke an integral part of the program of the arthritis centers and particularly is this true in childhood arthritis. Many of the childhood syndromes of arthritis remain to be thoroughly defined and the physiolcqgy cf the growing human organism gives rise to problems distinct from those seen in the nature state. Furthermore, the discipline of research provides the needed critical approach required for the development and evaluation of new modes of therapy. There can be no doubt that arthritis is a major cause of disakility in the United States, but improved knowledge and treatment can substantially reduce this burden on our population. 1.222 San Diego, California September 10, 1975 APPENDIX A Diseases Associated with Arthritis in Children Juvenile Rheumatoid Arthritis Rheumatic Fever Lupus Erythematosus Dermatomyositis Scleroderma Systemic Anglitis Polyarteritis Nodosa Ankylosing Spondylitis Psoriatic Arthritis Reiter's Syndrome Regional Enteritis Ulcerative Colitis Chronic Active Hepatitis Periodic Fever Familial Mediterranean Fever Palindromic Rheumatism Hemophiliac Hypertrophic Osteoarthropathy Fakry's Disease Reflex Dystrophy Toxic Synovitis Infectious Arthritis Psychogenic Rheumatism 1-223 San Diego, California September 10, 1975 ROWLANLC REED Preventive Medicine on Wheels Call on every school in the U.S. once a year with trailers, manned by technicians -- not doctors. Give free physical examination from cradle to death. Work south in winter and north in summer. Doctor that tells you to eat what you please is earning his fee by promoting disease. You dig your grave with your teeth; you are what you eat. The enzyme in the saliva changes starch to sugar so that your body can use it. The average man will take a piece of whitebread, spread with butter and jelly, chew, and wash it down with coffee, tea, milk, or water; and it goes into the intestines undigested and causes gas and fermentation which hits the nerve. If not taken care of then it will hit the joints like it did with me in 1932. Those days they took you to the hospital and removed tonsils and pulled your teeth, looking for the infection. The only thing digested in the stomach ty hydrochloric acid is meat and proteins. Use ground lean beef or turkey as the first thing you eat, follow with fruit or vegetable salad. Eat as many raw vegetables as possible, no desserts. Fats are digested in the small intestine; eliminate all starches. Use two slices of wholewheat bread per day, no sugar, salt, tobacco, or alcohol. I walk four miles to the Senior Citizens' Club, dance three hours, and walk home. When I was four years old, in the spring, I sat on wet grass under the maple trees in Springfield, Ohio; I got rheumatic fever. when I was born, mother couldn't feed me. I almost died before they found out that the neighbor's cow was fed on table scraps. My father paid $45 for a thoroughbred Jersey cow and made 25 pounds of butter the first week after she came fresh the first time. I was let out of the army in 1917 due to T.B. The axmy doctor snapped me out of it in two months on raw eggs and goat's milk. In 1919 I got the flu and an ostecpath cured me in one treatment after four days of 103- degree fever. RICHARD B. WELCH, M.D. November 8, 1975 San Francisco, California I have not had the opportunity to attend one of the public hearings that have been held throughout the ccuntry. In your letter of October 6, 1975, we are urged thus to write to you with reference to any recommendations that we would have regarding the expenditure of monies allocated to the National Commission on Arthritis and Related Musculoskeletal Diseases. I am sure that you have heard and have read much testimony that would be considerably more erudite than what I would have to say on this matter. In recognition of this fact, then, I will make my remarks rather brief. 1-224 San Diego, California September 10, 1975 I would hope that some of these monies are earmarked to benefit those people who are not clinic type patients or welfare clientele. There is a large segment of people in this country with arthritic diseases, whose insurance policies are totally inadequate to cover the basics of a debilitating disease such as rheumatoid arthritis. These patients, unfortunately, have the option of either going without or reducing themselves to the point where they qualify for welfare programs. They have maintained their pride, and thus they do not take advantage of the welfare programs in paying for various aspects of their disease. I would hope then that these patients who are considered private patients in today's medical framework would be in some way kenefited by these monies. I would hope that this benefit would be of a direct one and not totally indirect such as research would offer. I feel that in some way, much as we have done in our program at St. Mary's Hospital, that some monies have to be allocated to the private patient who is inadequately insured and unable to pay for the costly examinations and treatment programs that are required in this disease. Thank you for reviewing my remarks. I cannot tell you how much. I appreciate all your work that you have done in securing consideration of the arthritic on a Federal level. 1-225 SEATTLE HILTON HOTEL SEATTLE, WASHINGTON April 12, 1976 SEE =————r——r— = = = m— mee cep e=pgpe——— = =p E— ———— B E—— rE — El - TABLE OF CONTENTS CHRONOLOGICAL LIST OF WITNESSES SEATTLE, WASHINGTON APRIL 12, 1976 CATO, Stewart C. President, Washington Chapter, Arthritis Foundation SCHALLER, Jane, M.D. Professor of Pediatrics, University of Washington School of Medicine BARRETT, Leonard Patient, Lynnwood, Washington JOLLEY, Mrs. Mother of JRA Patient, Seattle, Washington DOCTER, Jack, M.D. Chief of staff, Children's Orthopedic Hospital DONOVAN, William H., M.D. Assistant Professor, Rehabilitation Medicine, University of Washington School of Medicine WEISS, Paul Father of JRA Patient, Bothell, Washington CHAPLIN, David M., M.D. Assistant Professor of Orthopedics, University of Washington School of Medicine ESQUIBEL, Regina Patient, Seattle, Washington SPARLING, Nancy, R.N. Staff Member, Children's Arthritis Clinic ARAKAWA, Fuki, R.N. Nurse Practitioner, Seattle, Washington SCHIMONDLE, Ruth Hospital Teacher, Children's Orthopedic Hospital, Seattle, Washington 1-229 Page 1-234 1-236 1-238 1-240 1-243 1-245 1-246 1-249 1-250 1-251 1-252 1-253 WEDGWOOD, Ralph J., M.D. Professor of Pediatrics, University of Washington School of Medicine HANSON, Virgil, M.D. Head, Department of Rheumatology and Rehabilitation, Children's Hospital, Los Angeles, California WILKENS, Robert F., M.D. Clinical Professor of Medicine, University of Washington School of Medicine SAMPSON, Melvin Senior Member, Yakima Indian Tribal Council, Toppenish, Washington HEALEY, Louis A., M.D. Clinical Professor of Medicine, University of Washington School of Medicine ASHAR, Kenneth Patient, Seattle, Washington SIMKIN, Peter A., M.D. Associate Professor of Medicine, University of Washington School of Medicine RIDGEWAY, Barbara Patient, Lynwood, Washington ANDERSON, David W., M.D. Clinical Associate Professor of Orthopedics, University of Washington School of Medicine LEHMANN, Justus F., M.D. Professor and Chairman, Rehabilitation Medicine, University of Washington School of Medicine BARBER Esther Patient, Neah Bay, Washington MATTHEWS, Carla Patient, Seattle, Washington WILSKE, Kenneth R., M.D. Clinical Associate Professor of Medicine, University of Washington School of Medicine 1-230 Page 1-259 1-261 1-267 1-268 1-272 1-273 1-275 1-277 1-279 1-280 1-284 1-285 1-285 SMITH, Gayle Green, O.T.R. President, Washington Occupational Therapy Association, Kent, Washington MORRILL, Kent W. Director of Athletics, King County Department of Parks, King County, Washington SKEITH, Maurice D., M.D. Clinical Associate Professor of Medicine, University of Washington School of Medicine MANNIK, Mart, M.D. Professor of Medicine and Head, Division of Rheumatology, University of Washington School of Medicine RYSEFF, Mrs. Joanne Clinical Dietetic Student, University of Washington HUMPHREYS, Beverly Patient, Seattle, Washington SQUIRES, James Patient, Bellevue, Washington CUDHIE, Bernice E. Patient, Seattle, Washington PETERSDORF, Robert G., M.D. Seattle, Washington 1-231 1-288 1-289 1-290 1-202 1-294 1-296 1-297 1-299 SUBMITTED STATEMENTS BUDLONG, John Seattle, Washington DORSEY, George P. Seattle, Washington WALKER, Joyce M. Renton, Washington TIGHE, Cordelia J. Renton, Washington PHILLIPS, TT. J., M.D. Seattle, Washington BRADLEY, Alice Seattle, Washington DEGA, F. J., M.D. Great Falls, Montana ARMSTRONG, Michael B., M.D. and SCHLOSSTEIN, Lee, M.D. Anchorage, Alaska LA PRATH Bremerton, Washington RAINS, Blanche Tacoma, Washington WEST, Charles E. Marysville, Washington FORDYCE, Ph.D. Seattle, Washington HARDIN, Ruth Walla Walla, Washington SHRINER, Grace A. Port Angeles, Washington 1-232 1-304 1-305 1-306 1-306 1-307 1-308 1-308 1-309 1-311 1-312 1-313 PROCEEDINGS ENGLEMAN: I would like to call this meeting to order. As you all know, the President signed into law the National Arthritis Act in January of 1975. The Secretary of Health, Education, and Welfare appointed a commission which was to establish guidelines and policies which would apply to what is referred to in the law as a National Arthritis Plan. This Commission, among other things, is charged to create the Arthritis Plan; and in its deliberations, among other sources of information, we have used the input from people like you who have kindly participated in public hearings such as this. And, in behalf of the Commission, I welcome all of you to this discussion. I am going to ask the members of the Commission to introduce themselves. I will start with the person on my left, Mrs. Florence Mahoney, who is a highly respected individual from Washington who has played a very important role in the development of health policy in Washington. Mrs. Mahoney is a consultant to our Commission. Now we can go on with Dr. Whedon. WHEDON: I am Dr. Donald Whedon. I am the Director of the National Institute of Arthritis, Metabolism, and Digestive Diseases in Bethesda, Maryland. ENGLEMAN: Bill? GAY: I am Dr. William Gay, Associate Director of the Allergy and Infectious Diseases Institute, also at the National Institutes of Health in Bethesda, Maryland. SHARP: Dr. Gordon Sharp. I am a rheumatologist at the University of Missouri in Columbia, Missouri. MELICH: I am Doris Melich from Salt Lake City, Utah. I am one of the layman members of the Commission. DONALDSON: I am Dr. William Donaldson. I am Clinical Professor of Orthopedic Surgery at the University of Pittsburgh. SHIELDS: I am Marlin Shields. I am a physical therapist and I represent the allied health professions on the Commission. ANTHROP: I am Ms. Verna Anthrop. I am a Pima Indian from Gila River, Arizona. I have had arthritis for 16 years, and I am a nurse. JENERICK: I am Howard Jenerick, a Science Administrator at the National Institutes of Health in Bethesda. LEWIS: I am Dr. Vivian Lewis, a retired university professor from Wilberforce, Ohio. POLLEY: I am Dr. Howard Polley, a rheumatologist in the Mayo Clinic, Rochester, Minnesota. ENGLEMAN: Several of the members were unable to be here today. They include Dr. Austen of Boston, Mrs. Brisson of California, Dr. Felts of 1-233- Seattle, Washington April 12, 1976 Washington, Dr. Iamont-Havers of Bethesda, Dr. Lawless and Dr. Otchin, both of Washington, D.C. I think at this point I am going to ask Mr. Cato, President of the Washington Chapter of the Arthritis Foundation, to come forward, please. We will ask all witnesses to identify themselves before presenting their testimony. I must also call your attention to the fact that we have a very full schedule and must therefore ask each witness to speak for no longer than 5 minutes. This will allow time for members of the Commission to ask questions of the witnesses. TESTIMONY OF STEWART C. CATO, JR. PRESIDENT, WASHINGTON CHAPTER ARTHRITIS FOUNDATION ALSO PRESENTING ON BEHALF OF THE HONORABLE WARREN G. MAGNUSON U.S. SENATOR, WASHINGTON CATO: Thank you. Good morning to the Commission members, and welcome to the Pacific Northwest. On behalf of the arthritis sufferers of our medical community and the board of directors of the local chapter of the foundation, welcome. We are pleased to be able to share with you, the committee members, our concerns on a local basis with the overall problem of arthritis. We are proud of the fact that your committee has selected the Northwest--and, specifically, the city of Seattle--as a place to hold one of your hearings. We are pleased to have the opportunity to tell our story. We are sorry that Senator Magnuson was not able to accept our invitation to be here today. However, this is one of his busiest times, he explains. And, at this point, I would like to read to the audience a copy of a letter sent from the Honorable Senator Magnuson, who is the Chairman of the Subcommittee on Labor, Health, Education, and Welfare. He directed this letter to Dr. Jane Schaller and Dr. Mart Mannik in response to an invitation to be here today: "Dear Drs. Schaller and Mannik: I certainly appreciate your taking time to invite me to the Pacific Northwest public hearing of the National Arthritis Commission. Unfortunately, your date of April 12 is just before the Congress breaks for Easter recess, and this will prohibit me from getting back to the State of Washington. Our workload at this time of the year is tremendous. "I would, however, like to take this opportunity to express my firm commitment to arthritis research programs. As you know, in fiscal 1975 Congress provided $161 million for the National Institute of Arthritis, Metabolism, and Digestive Diseases. Over the President's veto in 1976 we allowed $175.4 million, while the President requested only $157 million. The President. has requested $174.9 million for the Fiscal Year 1977. Obviously, this will not provide for any new initiatives. We are 1-234 Seattle, Washington April 12, 1976 presently hearing testimony on this request, and you can be sure it will be reviewed very carefully. "There is just one more point I would like to touch upon, and that is children with rheumatic diseases. I have felt for some time that this area needed much more attention than it is presently receiving. I recall your testimony 3 years ago speaking just to that area. I am hopeful that more funds can be provided for this in fiscal 1977. Your continued interest and that of your colleagues in arthritis research is very informative and helpful. I am looking forward to receiving the results of your meeting in the Pacific Northwest. "My best regards to you and everyone in attendance. Sincerely, Warren G. Magnuson, Chairman, Subcommittee on Labor, Health, Education, and Welfare." As is evident from Senator Magnuson's letter, he has a keen interest in arthritis. We thank him for his best efforts toward seeing that the recommendations regarding the funding of the National Arthritis Commission will get the endorsement of the Senate Subcommittee on Labor, Health, Education, and Welfare, and the Senate Committee on Appropriations. I might touch on one program here that we have sponsored locally as the Washington Chapter of the National Foundation, and that's a program we call the Artho-Therapy Program. The reason I bring it up is that we have lost our funding for this program. It was through the Regional Medical Programs that we received money to run this, and that, on June 30th, expires. We've been very proud of this program. Over the last year and a half we've brought in over 100 occupational therapists, physical therapists, and interested registered nurses, to bring them up to date in the best methods of helping arthritis sufferers, and they come in for a 1-week period. That's over 100 professional people we've seen in the last vear and a half. We have tried to fund this program locally through various foundations and through our general fundraising cause; and, to date, we have not been successful in keeping that as a continuing program. We obviously are disappointed. We take great satisfaction that your Commission now exists and is preparing a comprehensive plan that attacks arthritis from all angles, and, hopefully, will achieve three goals: the first is to make available to arthritis suffers nationwide the most advanced knowledge in existence today; secondly, to increase and coordinate research activities into the causes and cures of arthritis on a nationwide basis; and, thirdly, to provide the trained manpower to get the job done. ENGLEMAN: Thank you very much, Mr. Cato. Any questions from members of the Commission? (No response.) I might say that we are especially grateful for the comments of Senator Magnuson. We did appear before his committee a few weeks ago; and, of course, we hope that our testimony will receive favorable attention. I would like to say at this time, in acknowledgement of Senator Magnuson's interests, that if it were not for his committee this Commission could not exist. It was his committee that initiated the appropriation which made funding of this 1-235- Seattle, Washington April 12, 1976 Commission possible; and without the work of the Commission, presumably, there would be no National Arthritis Plan. So our special greetings to Senator Magnuson. Thank you very much. CATO: Thank you. ENGLEMAN: We would ask the following to please step forward: Dr. Schaller, Sean Barrett, Jonathan Jolley, and Dr. Docter. Dr. Schaller? TESTIMONY OF JANE SCHALLER, M.D. PROFESSOR OF PEDIATRICS UNIVERSITY OF WASHINGTON SCHALLER: It's a great pleasure to be here today to speak to the Commission on the needs of children with arthritis and rheumatic diseases. Rheumatic diseases in childhood have been a generally neglected topic in the United States, although they really exist as a relatively common chronic disease of childhood now that so many other health problems in children have been solved. I'd like to remind you there are more children with rheumatic diseases in this country than there are children with leukemia and malignancies; there are more children with rheumatoid arthritis alone than there were children stricken with polio in 10 years of epidemics. So I think you can see that this is not really a rare problem, although it's, unfortunately, so considered in general medicine. We estimate there are about 200,000 children with rheumatoid arthritis in the United States, although figures are hard to come by at this point; and there are at least as many other children that are affected with other kinds of rheumatic diseases such as lupus. To care for these children the facilities in our country are pathetically inadequate in educating family doctors, in providing specialists who know about rheumatic diseases of childhood, in providing any sort of a place which might be considered a center for the care of such children, and for doing research into causes of rheumatic diseases. We have here several children and their parents who will tell you about their disease. Sean, Jonathan, Melissa, and Regina will all speak about the problems they have had. Arthritis, as you well know, causes swollen, stiff joints. This makes it difficult for children to run and play and even to do ordinary things like writing and getting dressed. Very often, the arthritis in children goes away after a time, which is a very nice phenomenon. We figure that about 75 percent, at least, of children with rheumatoid arthritis will eventually get well. However, if they're neglected early in disease, or if they're overtreated with harmful drugs, their prognosis may not be as good as it might otherwise have been. In a few patients, however, the arthritis does not go away, and the children are left with deformed, damaged joints which will never again work properly. This is an ever- present reminder that until we find the basic causes of diseases we will find no truly effective cures. 1-236 Seattle, Washington April 12, 1976 Now, children with rheumatoid arthritis have other troubles, too: some of them get a good bit of fever in what we call systemic disease--and Sean had this kind of trouble when he started out--and some of them have iridocyclitis--as Jonathan has had--and have a great deal of trouble with vision, even more trouble than with joints. There are severe troubles with medical care for children with these diseases in our country today. To care for these, say 200,000, children with rheumatoid arthritis, the best we could muster is that there are probably 30 people who might be considered pediatric rheumatologists, and these are mostly not pediatricians. They may be people from other fields who have special training in rheumatic diseases of childhood. Perhaps there would be six places that could be considered centers where there are multispecialty people who are interested in rheumatic diseases to take care of these children. And, even worse, there is little realization on the part of either the public or family physicians, who, of course, see us first when we are ill, that children even get rheumatic diseases in the first place. This ends up often in a rather sad situation of lack of early diagnosis. Many of the children we see in our clinics have not had a proper diagnosis made for quite a while; and, of course, this puts a terrible burden on both the child and on the family. The other thing that can happen to. these children is that they can be inappropriately treated. They can look very, very ill and sometimes fall prey to the use of harmful drugs, such as corticosteroids which are rarely needed in this disease, or perhaps they just get ignored with the thought that nothing can be done for them anyway, and then unnecessary cripplina results. There is a lack of realization that children get iritis with rheumatoid arthritis; so presumably much of the blindness that occurs in this disease could have been prevented, perhaps, by early recognition. And, finally, there is a lack of appreciation of the needs of the whole child. This is one of the things that we consider most important. Children with chronic illnesses need to be treated as normal children as much as possible: they need to go to school; they don't need to be put to bed; they need to be encouraged to find something that they can do well which will give them a full life. For optimum care of all these children it's very important that we should have enough physicians in this country who recognize these diseases so that early diagnoses can be made. i children have severe rheumatoid arthritis it's probably important that they be seen in a place where there is a team of physicians qualified to care for them, and also a team of allied health personnel who have the expertise in working with such children to provide them the necessary support. This includes a primary doctor who could be a pediatrician, could be a rheumatologist, could be most anything, who knows about these diseases. We also need orthopedists. We need physiatrists. We need people in physical and occupational therapy. We need nurses and social workers and teachers, and, of course, we need ophthalmologists; and you are going to hear from most of these people in a minute. There are other rheumatic diseases in children, too, and I am not speaking to these but I'd like to remind you that they exist. We see lupus. We have Carla Matthews here who will tell you about lupus from a child's point of view. We see ankylosing spondylitis. We have an Indian boy now in the hospital at the university who is learning to walk again, 1-237: Seattle, Washington April 12, 1976 hopefully. We see dermatomyositis, scleroderma, vasculitis. Almost anything that afflicts adults also occurs in children. At the University of Washington we have a reasonably good «clinic for children with rheumatoid arthritis. We are affiliated with the Children's Hospital. on my left is Jack Docter, who is the Medical Director at the hospital, and has graciously consented to come and speak about the needs of children. Although, in a sense, we have one of the better known groups in the country, we really operate on our bootstraps. There are many things that we could do if we had more help, and there are many things that we would like to do. We take care of children over a six-state area, which again points out that there aren't very many physicians around this part of the world who are interested in these things. I would like now to have you hear from some of these patients; and I believe that Sean, who would not speak but asked his father to speak for him, is next. TESTIMONY OF LEONARD BARRETT FATHER OF JRA PATIENT BARRETT: My name is Leonard Barrett, residing at 5630 - 173rd Place, S.W., Lynnwood, Washington, speaking on behalf of my wife Barbara and son Sean, age 6 years. I would like to thank you for this opportunity to address you on a subject which is very close to the heart of our family. I find it regrettable that conditions such as juvenile rheumatoid arthritis exist and bring me to the point of testifying today. Our son Sean was born a healthy and happy baby and developed quite normally until the age of 2 1/2 vyears. At that point in time, Sean developed a very persistent, high fever which was accompanied by a rash. our family physician was perplexed, as were we, as to the nature of the problem. After a period of approximately 3 weeks, Sean started complaining of stiffness and soreness in various joints. At that point, our physician referred us for consultation with Dr. Jane Schaller of the Arthritis Clinic at the University of Washington. Unfortunately, Dr. Schaller confirmed the suspicions of our family doctor, and we were advised that Sean had become a victim of juvenile rheumatoid arthritis. Initially, our reaction was one of shock. After all, rheumatoid arthritis is a disease which affects older people. While it was recognized that rheumatoid arthritis had its own problems, it was not considered a disease which crippled children. After all, Sean was only 2 1/2 years old and had been a very active child. We were quickly informed that JRA is not the result of a number of things. We learned that JRA is not hereditary; that it is not the result of climatic conditions, nor is it aggravated by climate. We also learned that there were some medications currently in use which might produce relief from the symptoms of JRA. We were advised that results from these medications could not be guaranteed. -1-238 Seattle, Washington April 12, 1976 After a period of 3 1/2 years, Sean has undergone a 1-year program of treatment with gold salts, which produced no relief from the problem. It did produce liver symptoms which indicated that Sean was experiencing an adverse reaction and cessation of the gold salts was called for. We then started on a program of using the drug Chloroquine, an anti-malaria drug. This, too, produced no change in symptoms. During the entire period of time, Sean has been receiving large doses of aspirin on a daily basis. The number of aspirin taken varies based on results of blood tests which indicate salicylate levels. This aspirin dosage is also dictated by changes in respiration which in Sean has gotten to the point where he has had difficulty in breathing. Aspirin has also produced ringing in the ears. Also, during the past 3 1/2 years, Sean has been receiving daily dosages of Prednisone, a manufactured steriod. The Prednisone has produced some relief from symptoms which, in itself, would lead one to say, "At last, HOPE." Unfortunately, Sean has developed a cataract in his eye, a direct result of Prednisone. The result of all of this has been a balancing act of trying to find and use different levels of medication in the hopes of controlling the disease and keeping possible side effects to a minimum. What result? As I have mentioned, Sean had been a very active child, and when first diagnosed as being arthritic, was experiencing stiffness in various joints. During the past 3 years, Sean has been affected by the destruction of arthritis in all joints. His jaws, neck, back, fingers, feet, and knees have all been affected. Sean's major area of difficulty has been in his hips. At the present time, his only means of mobility is the use of a big wheel toy. This toy is really a substitute for a wheelchair. While this may seem ridiculous on the surface, it is a means of helping Sean maintain his self-esteem. If you can recall your own situation when going to school, you must recall how strong peer pressure can be, especially when it comes to being like the rest of the kids. Well, since Sean can no longer walk, we must do what we can, especially since Sean knows that he has faced hospital stays which have extended up to 2 months at a time. One of the primary purposes of these hospital stays has been for extensive physical therapy. In addition, Sean has, through the facilities available in the local school district, received physical therapy on a daily basis when not in the hospital. These exercises have included some very painful procedures designed , to help straighten out Sean's hips. Unfortunately, the destruction which has taken place in the joints has been total, so even if a cure were found for this dread disease, Sean would still be crippled. At his age, surgery does not appear to offer much help. In spite of all of this, my wife and I have worked to maintain Sean's spirits to the point that he, like you and I, can wake up each morning and look forward to the new day. Gentlemen, we ask for your assistance in providing funds which can be used to develop a cure for juvenile rheumatoid arthritis so that perhaps other children will not have to 1-239 Seattle, Washington April 12, 1976 experience the same heartache as we. Thank you for your time and patience. ENGLEMAN: Thank you, Mr. Barrett. Before we have questions, we will call on Jonathan to speak briefly. TESTIMONY OF MRS. JOLLEY MOTHER OF JRA PATIENT JOLLEY: I am Mrs. Jolley, and this is Jonathan Jolley here. I am going to give a little rundown on the arthritis and what we've experienced in this, and then a little more in depth on his eye condition. First, the arthritis: Jonathan's arthritis first appeared in the fall season of 1965 after entering kindergarten. He complained of persistent pain in his hip (the left one, as I recall), but his pediatrician found the arthritis to be active in his left knee. The doctor promptly referred Jonathan's case to the Juvenile Arthritis Clinic at the University Hospital where he has been receiving care and treatment ever since. During the next 5 or 6 years, the arthritis continued to be fairly active, but was controlled with large amounts of aspirin. A number of joints have been involved with arthritis at different times and with differing intensity. The joints which have been the most troublesome over the years have been both elbows and the left knee. Other joints involved include his neck, jaw, ankles, and a toe or two. During the last few years, the arthritis has been relatively quiet. In order to insure that it remains under control, Jonathan is still taking 45 grains of aspirin daily. During the earlier years of Jonathan's arthritis, a number of devices and exercises were used to keep his joints from becoming permanently crippled during the times when the disease was actively flaring up. We spent several sessions in the Physical Therapy Department being taught specific exercises for all the joints, and we performed those exercises for quite some time. Jonathan's elbows showed the most tendency to tighten up and, at one point, he could not bring his hands up to his ears or the back of his neck except with much pain and determination. During this time Jonathan was encouraged to graduai.y unbend the elbows by carrying buckets of sand or water around in comfortable but increasing amounts. Following this, splints were made for his arms which he wore at night and which helped a good deal to straighten the elbows again. Dr. Schaller has mentioned to us at different times that there are different types of juvenile rheumatoid arthritis and that Jonathan has the type in which joint involvement is not severe. However, with his type, the eyes are often attacked by iritis and uveitis and then serious complications can result. This has been the case with Jonathan's eyes. The inflammation was first discovered when an eye examination was made at the University Hospital when Jonathan was about 6 years old. Treatment was begun including drops and pills of various kinds, but the inflammation did not respond well to treatment. Cataracts gradually developed in both 1-240 Seattle, Washington April 12, 1976 eyes until by the time he was 8 he was completely blind except for light and some color. At this point, he began learning Braille and was entered in a special education program. A few days after his 9th birthdav, surgery was performed on his right eye. The cataract was removed and sight restored with the help of a corrective lens. A year or two later, the cataract in his left eye was removed, but there was very little sight left in the eye and that only on the far left side. The loss of sight was due to chronic high pressure, or glaucoma, which would not respond to treatment. The glaucoma was caused by many, many dead cells floating around inside the eye and blocking the minute ducts. The dead cells were caused by the iritis inflammation. Later on, the remaining sight in the left eye gradually disappeared. Six months or so after surgery, I took Jonathan's case to a private eye doctor who had treated him previously. He confirmed my fear that the pressure was building up again in the right eye and that his field of vision was deteriorating. He tried treatment for one month; but when no improvement was evident, he referred us to the eye «clinic at the University of California at San Francisco. They were unable to handle Jonathan's condition and promptly referred us to a glaucoma specialist in San Francisco. On the third return trip to San Francisco in as many months an extremely delicate operation was performed on the fine ducts of his eyes. The operation proved successful. The pressure came down to the normal level and has remained so since that time. A slight flareup of the inflammation occurred in December of 1975, but fortunately it responded to treatment. Because of a number of injuries due to soccer ball accidents, etc., Jonathan's left eye suffered several hemorrhages and would not heal up completely. Thus, in 1974, during summer vacation, he had the interior part of his eye removed and a plastic ball inserted in its place. Some time later, a plastic eye piece was made and painted to match his right eye. Last summer he began wearing a hard contact lens in his right eye and has 20/20 vision in that eye, for which we are very grateful. Today, Jonathan seems relatively free from the effects of arthritis, although he is still taking aspirin as I mentioned previously. He enjoys good health, has a strong, sturdy body and specializes in track, soccer, and skateboarding. We feel obliged to thank the Lord for His mercy to Jonathan for providing just the right medical help when he needed it and trust He will continue to do the same through Jonathan's years ahead. Thank you. ENGLEMAN: Thank you, Mrs. Jolley. I wonder if we «could ask for questions from members of the Commission? Dr. Polley. POLLEY: Dr. Schaller, do you have any clubs or groups of parents who have children with JRA? We've heard about this in other parts of the country. SCHALLER: This is one of the things we'd really like to do but have not had the sources of doing it. We have no funds to employ any paramedical personnel to help us with things like this. I think they'd be very nice to have. 1-241 Seattle, Washington April 12, 1976 POLLEY: Also, I'd 1like to know, how many JRA patients are there in your immediate area, and are they all getting care or are there some that are around that are still not getting care in your area? SCHALLER: Well, this is a hard question to answer. We've seen about 500 JRA patients here since the clinic opened about 12 years ago. We do not follow all of these patients because a lot of them get well and don't come back. But there still are children in the Northwest, and in states around, who are really getting no care or abysmal care, and they often come in very late. We see this all too often. SHARP: I'd like to ask Dr. Schaller--you mentioned that there are approximately 30 pediatric rheumatologists in the country, and perhaps six centers give special emphasis in childhood arthritis--could you give us an estimate of how many medical schools or institutions have a reasonable program, not maybe special emphasis but have some specialists who are familiar with childhood arthritis? SCHALLER: These are hard things to come by. There are very few medical schools which are teaching very much about rheumatic diseases in children. One of the problems with this is the kinds of physicians who see children very often in our country are of two types: they are either pediatricians, or they are family doctors, general practitioners, or family medicine specialists. And I am afraid that there are perhaps five or six pediatric departments that teach very much about these diseases; and I think in family medicine they are probably rarely met at all. So, unfortunately, the physicians who are going to go on to be primary physicians caring for children I'm afraid are not learning this at all. We owe a great debt of gratitude to the internists and also orthopedists, who have really shown a lot more interest in childhood rheumatic diseases than have the people who I think should be caring for them. But it doesn't do a lot of good to train an internist in childhood rheumatic diseases, not that that's being very much done either, because internists don't usually, in practice, see children like Sean who come in with fevers of unknown origin at the age of 2. I think this lack of education of primary physicians is one of the worst things that we have to combat. SHARP: Let me follow up my question, then, with another one. If there are so few centers where emphasis on childhood arthritis is present, what is the solution to training many more physicians who have these capabilities? Is there some special means of having to accomplish this task? SCHALLER: Well, yes. It's a tremendous manpower problem or power problem. The only solution that I can see is that I think every medical school that's training physicians ought to have somebody who can teach about rheumatic diseases of childhood. Now this doesn't always have to be a pediatric rheumatologist, although I think that would be very nice. But there ought to be somebody somewhere who can tell people that these things happen and to point out what should be done about them. It's not realistic to think that every kid with JRA is going to live next door to -1-242 - Seattle, Washington April 12, 1976 Virgil Hanson's Hospital in Los Angeles or in the vicinity of Children's Hospital in Seattle. That simply isn't so. ENGLEMAN: We are running short on time, but I must ask Mrs. Jolley or Mr. Barrett if you have any one thing that you feel is most critically missing in your experience? BARRETT: The one thing I'd like to see, perhaps, is a medication which may not provide a cure but at least some relief. Aspirin, Prednisone, gold salts aren't doing it. ENGLEMAN: Mrs. Jolley? JOLLEY: I don't believe I have a comment on that area. Thank you. ENGLEMAN: Yes, Dr. Schaller. SCHALLER: Could I just make one Comment? Both Jean and Jonathan are not--I'm very proud of them as children, but I'm not very proud of what we were able to do for them with medicine. I think they are both children who had an early diagnosis and were appropriately treated, and they really stand witness to the fact that we need to do more research in these diseases and find out what causes them so that we can effectively treat them. ENGLEMAN: Thank vou very much, Dr. Schaller, Mrs. Jolley, Mr. Barrett, and Sean. And, Sean, I apologize for having mispronounced your first name. I'll never do it again. We'll now call on Dr. Docter, Dr. Donovan, and Melissa Weiss. Dr. Docter? TESTIMONY OF JACK M. DOCTER, M.D. CHIEF OF STAFF CHILDREN'S ORTHOPEDIC HOSPITAL AND MEDICAL CENTER DOCTER: Yes, sir. I'm Jack Docter, the Chief of Staff and Medical Director of the Children's Orthopedic Hospital and Medical Center, and Clinical Professor of Pediatrics at the University of Washington Medical School. Arthritis and its related diseases represent one of the commonest and most expensive chronically handicapping conditions in the world today. Although arthritis includes diseases and related disabilities that occur throughout life from infancy to old age, I'd like to emphasize and reemphasize the importance of this problem to children and the importance of children to the problem. An educated estimate indicates about 500,000 children in the United States with rheumatoid arthritis, rheumatic fever, and other related collagen diseases. I represent The Children's Orthopedic Hospital and Medical Center, which, by its very name, pays obeisance to the magnitude and importance of -1-243 - Seattle, Washington April 12, 1976 the problem of arthritis to children. Ours is not an orthopedic hospital but a pediatric hospital, treating all acute and chronic disease in children from birth to 21 years of age. The name orthopedic was given to this hospital some 69 years ago, indicating the predominance of bone and joint problems existent at that time that greatly influenced a group of benevolent ladies who recognized an unmet need and organized the Children's Orthopedic Hospital. Although we do draw patients from even more than six states, as Dr. Schaller mentioned, this hospital now is recognized as the major pediatric facility in a four-state area (including Washington, Idaho, Montana, and Alaska), and it receives referrals from a geographic area that includes almost 25 percent of the continental area of the United States. The COHMC is the major teaching affiliate for pediatrics of the University of Washington Medical School and the Pedatric Arthritis Clinic of the Medical School is located at the hospital. All pediatric arthritis patients requiring hospitalization are admitted to the wards of COHMC. All patients are charged on an ability-to-pay basis and no patient is refused care because of inability to pay. The hospital has an open medical staff and accepts referrals of children based solely on medical need. Through an intensive public subscription and fund drive, we are in the process of building a new, modern wing which will double the square footage of our present hospital and is being built to modernize and increase our facilities for the care of acutely ill and chronically handicapped patients. A strong emphasis is being placed on facilities for rehabilitation medicine, and this includes a therapeutic swimming pool, whee lchair-adapted training modules, special occupational and physical therapy equipment, and rooms and facilities specifically adapted for and available to children with all types of arthritis and other chronically handicapping problems. The staff of the COHMC recognizes the importance of early diagnosis, intensive treatment, long-term rehabilitation and educational and vocational training, and preparation for self-care and independence of arthritic children regardless of their degree of handicap. As medical care is improving, as newer drugs and other treatment modalities are being discovered, more children are surviving, and although some are being cured and their disabilities are being prevented or minimized, many are surviving with varying degrees of handicaps. These children require extraordinary effort and extraordinary money in order to be given maximum opportunity to achieve a relatively normal existence. These are the children who need help, and these are the children we try to help. The importance Qf children to arthritis is that, like in so many handicapping diseases, the problem begins in childhood; actually, it may begin prenatally and manifest itself anytime from birth through adolescence. The chances of preventing many adult diseases are best if they can be discovered, studied, and treated in children. Prevention of handicaps is much preferable to treatment of handicaps. Without intending to negate the importance of adult problems and adult diseases, I'm sure it's true that money spent on research and treatment and diagnosis of disease in its preclinical state or in its early stage of development is 1-244 Seattle, Washington April 12, 1976 much more humane and much more economical and much more logical than beginning after the fact--than trying Lo correct fixed deformities in adults. Money spent on research and treatment on infants and children will return dividends in better adult health on an exponential basis that can never be achieved by study and emphasis on the same diseases in adults. ENGLEMAN: Thank you, Jack Docter. Dr. Donovan? TESTIMONY OF WILLIAM H. DONOVAN, M.D. ASSISTANT PROFESSOR OF REHABILITATION MEDICINE UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE DONOVAN: I'm Dr. Donovan, assistant professor at the University of Washington. I lead one of the rehabilitation teams at the University Hospital and consult at the Pediatric Arthritis Clinic at Children's Orthopedic Hospi tal. The incidence of juvenile rheumatoid arthritis in the United States, based on a survey conducted by the United States Public Health Service, National Center for Health Statistics in 1966-67, was estimated at 100,000. Yet this is only one of the diseases that can cause destruction of the joints of children. Arthritis can lead to serious deformities and disabilities in children even if they are given optimal medical © management. If treatment is neglected, lives can be ruined, and an otherwise bright mind can suffer from the lack of stimulation of peer contact, school attendance, and physical achievements, as well as from aberrations in family harmony due to poor psychological adjustments. The National Arthritis Act of 1974 (P.L. 93-640) recognized the need for a multifaceted attack on arthritis. It emphasized the need for investigation into etiology, prevention, and medical treatment advances. Some mention was also made concerning the need for improvements in: 1) research, 2) training, and 3) service delivery in the area of rehabilitation. It is to this area that I would like to address myself. It has become apparent that there is an increasing need for all three in children's arthritis. In the area of research, development of improved plastics for splint fabrication has greatly enhanced our ability to provide joints with adequate rest, but further improvement in material and design needs to be developed. Design of splints needs improvement to better prevent dynamic deformities; development of methods and materials to provide easy shoe modifications that could be used in a clinical setting for patients with pain when walking is needed; investigation into the effect of isometric strengthening on arthritic joints; and the effect of therapeutic heat treatments on disease activity should be investigated. In training, it is mandatory that education of all physicians--but particularly orthopedists, and rheumatologists--as well as physical and occupational therapists and allied health professionals be expanded to include a full competency to recognize and deal with the early signs and 1-245 Seattle, Washington April 12, 1976 the complications of arthritis in children. They must be exposed to all phases of the disease in their training so that they can cooperate in helping the patient and family comply with treatment regimes that may change as the clinical picture changes. School teachers should also be acquainted with the problem of arthritis in children since, in many cases, these pupils will not be candidates for special education yet will be limited in their activities and will require some special treatment in phyyical therapy at school, or at a nearby school, particularly if pool therapy is available. Recently, House Bill 90 was enacted in Washington, and this has brought entitlement to all children of physical therapy treatments if they are prescribed by a physician. Since this therapy is likely to become a part of many students! daily routines, it is important that school officials know of its value and the reasons why it is necessary. Finally, in the area of service delivery, there needs to be more support for programs currently in existence and expansion of services to meet present needs. In addition, the expenses incurred by the family of a child who is severely affected by arthritis should be 1lifted to some degree when they become burdensome. Frequently, optimum physical therapy, occupational therapy, and psychosocial counseling cannot be given because of inadequate funds. Frequently, because of this (and in some cases because of lack of adherence to medication schedules) the patient develops complications which later place an even greater financial burden on them. I would emphasize that, as you have heard, the optimum management of arthritis in children requires the optimum medical and physical treatment, and occasionally surgical treatment, and that the services that can be provided by a rehabilitation team should be an integral part of the management of a child with arthritis. Thank you. ENGLEMAN: Thank you, Dr. Donovan. May we call on Melissa, or Melissa's father. I'm not sure which. TESTIMONY OF PAUL WEISS FATHER OF JRA PATIENT WEISS: Good morning. My name is Paul Weiss. This is my daughter Melissa. Melissa developed juvenile rheumatoid arthritis at the age of 14 months. We were fortunate enough to have as a {amily pediatrician a man who was in tune with looking for and recognizing juvenile rheumatoid arthritis and directed us to the University of Washington and Children's Orthopedic Hospital where tests were done and confirmed his diagnosis. As I imagine with many parents with children who are told that their child has JRA, the first question they ask is: "How could this be happening to our child? He is so small." And I suppose like many parents we looked to many avenues of relief for our child--diet, folk medicine, and so on--but finally we came to the realization that only through medical research could Melissa be helped. The initial tests at the university determined that Melissa's joints-- many joints were affected, the knees, the neck, the jaw, and also an 1-246 Seattle, Washington April 12, 1976 iritis condition. Fortunately, working through the university and the Children's Orthopedic Hospital with Dr. Donovan and Dr. Schaller, using exercises, leg braces worn at night, ana some participation in several nationwide studies, Melissa's condition has remissed to a point where she leads a very active and normal life. I think the most important thing that I would like to talk about is the confidence that we've had in knowing that in the area here, in Seattle, there are highly qualified, highly efficient people at the University of Washington, at the Children's Orthopedic Hospital. I4's reassuring to know that you can find somebody that does know what there is known about juvenile rheumatoid arthritis. I feel sorry for people who do not live in an area like we do: their communities do not have the money to finance doctors, research clinics, young doctors to do research in juvenile rheumatoid arthritis. Obviously, the main thing that is needed to enhance the knowledge about JRA is money. Without it, new doctors can't be trained. Without it, hospitals such as the university and Children's Orthopedic cannot hire the people or buy the equipment to do the job. Eventually, I'm sure a cure will be found for arthritis. It's going to be a while, but somewhere there is somebody working on it that may come up with it very shortly. But still, these people working on the discovery of whatever cure might be found, obviously they need money to do the Jjob. Thank you. ENGLEMAN: Thank you, Mr. Weiss. Any questions from members of the panel? . Yes. MELICH: I would like to ask both Dr. Docter and Dr. Donovan about your approach to getting over the idea to the parents or families of patients the need for carrying out a regime which is necessary for the treatment of children, and how do you go about it? Could you briefly tell us? DONOVAN : Briefly, I think you have to individualize. Education and explanation of the needs for the program in some cases is enough. In other cases, sometimes for one reason or another, education is not the whole thing; and still, carrying out of the entire package of the program is not accomplished. There may be many reasons for this. Oftentimes, though, using such techniques as asking the family or the child himself, if the child is old enough, to record what they're doing--to make a chart, make a graph--so that when that's brought back to the clinic that can be appraised and the child can be given the attention and reward that often makes a difference. This same technique is used when the child is in the hospital to get him to carry out his exercise programs--wear the splints, for example. None of these things are very enjoyable; they are not enjoyable to adults, and they are less enjoyable to children, I feel. So these kinds of techniques sometimes are useful and helpful in getting the child's cooperation for the entire rehabilitation program. DOCTER: I have one more point I'd like to add. one of the recent developments or ideas that we're putting into effect, not only in the treatment of this type of patient but others with chronic diseases, is the 1-247 Seattle, Washington April 12, 1976 training of ancillary people rather than just physicians to carry out the educational program; the chief of these are the nurse coordinators who are being specially trained, for instance, in the «care of arthritis and rehabilitation problems. And, when patients return to clinic, they very often are referred to the nurse coordinator who spends more time with them than the doctor probably would, and they even make home calls and go out and visit the patients in their homes and see what kind of facilities they have at home so they can adapt what is available in the home to the patient's needs and help in the educational process and the treatment process that way. I think this is one of the most effective new modalities that's being used in medicine that's been developed. MELICH: Thank you. That's one of my pet things, too, to have something done in addition to what the doctors themselves are doing. Thank you both, all of you. ENGLEMAN: Vivian, did you have something you wanted to ask? LEWIS: I think he just answered my question. I was going to ask: When your new wing is completed, will you find it possible to locate and hire qualified persons in the field of therapeutic medicine? DOCTER: You can't always find all the qualified ones, but then you can turn around and train them yourself and get them qualified, yes. The answer to your question is ves. ENGLEMAN: Yes, Marlin. SHIELDS: Dr. Donovan, you alluded to a Title 90 or something, some law affecting school systems and therapy. I'd like a little further explanation on that if you wouldn't mind. DONOVAN: Well, to the best of my knowledge, House Bill 90 was passed in the State of Washington and entitled children in the school systems to get physical therapy if it is prescribed by a physician, so that in many cases, for the children we see who live in Washington, they can receive physical therapy services through the schools. In some cases you cannot get the amount that you'd like--sometimes you'd like to have them treated every day--but the most that can be delivered is once or twice a week; but I think at least this is a gain. SHIELDS: Does this physical therapist work for the school district? DONOVAN: Yes, either that or they are contracted and paid by the school district. SHIELDS: And then the services are free to the patient? DONOVAN: Yes. SHIELDS: Thank you. 1-248 Seattle, Washington April 12, 1976 ENGLEMAN: Thank you very much. We'll proceed now and ask the following to step forward: Dr. Chaplin, Reggie Esquibel, Nancy Sparling, and Fuki Arakawa. Dr. Chaplin? TESTIMONY OF DAVID M. CHAPLIN, M.D. ASSISTANT PROFESSOR DEPARTMENT OF ORTHOPAEDICS UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE CHAPLIN: I'm Dr. David Chaplin. I'm Assistant Professor at the Department of Orthopaedics, University of Washington. I consult at the Juvenile Rheumatoid Arthritis Clinic. Rheumatoid arthritis, be it in the child or adult, commonly results in total destruction of the joint. The end point of this joint destruction may be severe stiffness with pain, severe deformity with pain, simply pain on movement, or absolute stiffness of the joint. Once a certain point in the disease process in one particular joint has been passed that joint is destined to further and further destruction. Curing the arthritis by medical means would no longer help these joints. hus, if a cure for arthritis was found today or tomorrow, we would be left with thousands of people whose joints have already been irretrievably damaged by the disease process. The orthopaedic surgeon has the task of salvaging these destroyed joints. The older and more traditional methods of treatment, including fusion or forming a new joint using the skin, fascia, and artificial linings, have been superseded by the tremendous success afforded by total joint replacements. In this procedure the old joint is surgically excised and replaced with a new joint consisting of an articulation between a metal component and a high-density polyethylene component. These components are individually cemented onto prepared bone using an acrylic cement. The joint replacement is applicable to all forms of arthritis, including rheumatoid arthritis, degenerative arthritis, and has recently been extended to include patients afflicted with juvenile rheumatoid arthritis. The total hip replacement has been the most widely used joint replacement. The results over the last 10 years have been extremely encouraging. A joint which was previously painful and stiff can be converted into what feels to the patient to be a perfectly normal joint which is pain free and has a normal range of motion. This is particularly beneficial in the severely affected rheumatoid arthritic who has multiple joints involved, but unfortunately there is a cloud over the horizon. As these artificial joints are mechanical in nature, and in no way living, they do suffer from mechanical wear and tear and failures occur as time goes on. This failure may be loosening of a component, breakage of a component, or mechanical wear of the articulating surfaces. Should this happen, then the joint has to be surgically replaced, and each operation, of course, carries increasing risks to the patient. Furthermore, as joints are inserted in younger and younger patients, we are likely to run 1-249 Seattle, Washington April 12, 1976 into a significant (servicing) problem. Furthermore, the problem of infection is as yet not completely under control. Should infection occur in a hip replacement or joint replacement, then this is a major disaster for the patient as the prosthesis has to be removed. The success in the hip joint has prompted the development of joint replacements in knee, ankle, shoulder, the elbow, wrist, and the fingers. Many of these joint designs are still in the experimental phase of development, and the various design changes that have occurred in the last 3 of 4 years is a measure of the unsatisfactory nature of some of the models chosen. Much progress is being made in the development of the knee joint, and it seems that, as far as the rheumatoid patient is concerned, it is important not to allow the patient to deteriorate to the stage where surgery becomes technically extremely difficult. This perhaps means performing the surgery earlier in the course of the disease, a decision which is not always easy to accept. Furthermore, with increasing costs of hospitalization, and hospital fees in general, total joint replacements are expensive. The average cost of a hip joint replacement, includinc hospitalization, the surgeon's and anesthesiologist's fees, the use of the operating room, etc., runs around $5,000; whereas the cost of a total knee replacement is close to $4,000. When one considers that the rheumatoid patient may require replacements of both hips and both knees, together with other 1lesser surgical procedures in his upper limbs, the financial investment is not inconsiderable. I feel that this form of surgery, although spectacular in its early results and may produce years of symptomatic and functional relief, is dangerous when applied to the patient with juvenile rheumatoid arthritis; but, at the moment, there is 1little or no alternative. Research is required in the form of cartilage transplants or total joint, living or cadaver-preserved, transplants in order to bypass the total joint replacement. At this point, I would like to introduce Reggie Esquibel, a patient of mine, who, only 13 days ago, underwent a total knee replacement, having some years previously received a total hip replacement. ENGLEMAN: Reggie, will you identify yourself, please? TESTIMONY OF REGINA ESQUIBEL RA PATIENT ESQUIBEL: My name is Regina Esquibel. At the age of 14 I was told by doctors of the University Hospital that I had rheumatoid arthritis. From age 14 to 18 the disease had spread from my knee joint to my ankles, hips, hands, and wrists. I was very crippled so much that it took all my strength to go to the bathroom or just to get up in the morning; and then, even after that, the only time I moved was to go to exercises or to eat. 1-250 Seattle, Washington April 12, 197¢ In 1968 or 1969, after being in and out of the hospital off and on for 2 years on the rehabilitation foor of the hospital, Dr. Convery informed me that I would have to have a synovectomy. I had worked very hard tc strengthen my knees, and then my hips went bad on me. I was very depressed about this. Then Dr. Convery called me for clinic. I talked with him, Dr. Schaller, my pediatric doctor, and many more doctors whose names I can't remember. They all agreed, along with me and my mother, that a total hip joint would be inserted into my right hip. I was also informed of the possible consequences of this type of surgery. At this time it was very new, and I was one of the youngest people having this surgery. I agreed any way. The surgery got me up walking, and I have hac no problems with my hip since then. I am 23 now and the knee, which has been my worst joint, has beer replaced by a total knee joint. I have only had it for 2 weeks so I really can't say how well it is working; but if it works anything like my hip joint has worked, I will be more than happy with it. I also have to say that for a person my age this surgery has improved all phases of my life. I am working, going out dancing, and doing everything a person my age should be able to do. I think the assistance I received from the doctors and the Arthritis Foundation in my recovery has improved my security and my independence, as well as relieving me of pain, at least for awhile. Thank you. ENGLEMAN: Thank you very much, Reggie. We call on Nancy Sparling. TESTIMONY OF NANCY SPARLING, R.N. STAFF MEMBER CHILDREN'S ARTHRITIS CLINIC SPARLING: I am Nancy Sparling. I am a clinic nurse at Children's Orthopedic Hospital for the arthritis patient. The role of the pediatric nurse dealing with the arthritis patient holds many facets. She/he must have a broad understanding of the disease and the effects it can have on children and their families. She/he must use her knowledge to help assist with educating the public as well. The public school the child is attending should be made aware of the necessity of physical therapy and occupational therapy programs for these children. Classroom instructors should know the child's capabilities as well as handicaps and offer assistance when so indicated. A child witb arthritis may not be as agile as his peers, but his mental ability should not be at a standstill because of this. His growth and development should be encouraged by all who are involved with him. Public health nurses are sometimes needed to make home visits when the patient lives a distance from the primary care facility. They sometimes need to be instructed by the clinic nurse as to the need of the family and the purpose for coming into their home. 1-251 Seattle, Washington April 12, 197¢ Education is also very vital to the child's family. Physical therapy and occupational therapy provide instruction and assistance to strengthen the muscles, to protect joints and a range-of-motion program to maintain joint mobility. Sometimes splints are needed to aid in prevention of contractures and atrophy of the joints. The therapist also provides for instruction in daily activities that we take for granted: dressing, opening doors, assisting in the kitchen, etc. Encouragement, teaching, and a certain degree of supervision from the nurse often is necessary for the family to persist in the regimen of exercise, rest, and taking medications. For those patients with monarticular arthritis, eye checks every 3 to 6 months are essential. The patient and his family are not aware of any problems until vision becomes restricted. Iridocyclitis is a chronic inflammation of the iris and ciliary body of the eye which has no overt symptoms. Without treatment blindness can result. This can develop during remission and can, up to adulthood, become acute rather than insidious as in childhood. Financially, physically, and emotionally the problems with the chronically ill patient can be overwhelming. Oftentimes, a social worker is necessarvye. The nurse must be able to assess this and make arrangements. Social workers can provide an objective point of view and assist the family when needed. The nurse is often a vitally needed liaison between the patients and the people who provide the specialty services. It is necessary for all to work as a team in caring for the arthritis pediatric patient. All of the services cost money and are so vital to the successful management of arthritis since there is no cure. Money for research is also needed. Chronic illnesses such as arthritis travel a road of exacerbations and remissions; and since family relationships are dynamic, the frequency and intensity of the need for service varies. During the acute phases the need for service may be intense requiring fulfillment of both physical and emotional needs. Conversely, during quiet phases, the need for service may be minimal, with only maintenance-type activity necessary. The nurse must be alert to changes taking place within the family and must make her services as dynamic as these changes. ENGLEMAN: Thank You. We'll call on Fuki Arakawa. TESTIMONY OF FUKI ARAKAWA, R.N. PEDIATRIC NURSE PRACTITIONER CHILDREN'S ARTHRITIS CLINIC CHILDREN'S ORTHOPEDIC HOSPITAL ARAKAWA: This morning, I want to reemphasize the team approach in the care of the arthritic child, as already discussed. As a nurse involved in the total care of the child and his family, it is important for her as a facilitator to be.a supportive care person for the patient as well as to help the other members of the team, such as the school teachers, 1-252 Seattle, Washington April 12, 1976 occupational and physical therapists, and medical social workers, assess the problems and concerns unique to each patient and family. The team has to work together to be able to give the prescribed treatment, encouragement and support to each individual and family. We have all seen that it is not an easy road for the child and his family. It has its ups and downs as the chronicity of arthritis manifests itself individually. To illustrate one facet of the team, Ruth Shimondle and Kay Beck, our teachers at Children's Orthopedic Hospital, have written their testimony, and I want to introduce to you Ruth Shimondle. TESTIMONY OF RUTH SHIMONDLE HOSPITAL TEACHER CHILDREN'S ORTHOPEDIC HOSPITAL SHIMONDLE: I'm Ruth Shimondle, hospital teacher at Children's Orthopedic. And Kay Beck is the other teacher who couldn't be here. The key to a child's school progress develops long before he enters kindergarten or first grade. His ability to learn depends on his willingness to try, his pride in his accomplishments, and his eagerness to explore his environment. For the chronically ill child the challenges in his environment may be physically painful; mastery may be a long process compared to peers, and the willingness to try may be impeded by the adults! hesitancy to encourage possible independence. For the arthritic child a challenge, physical or mental, may become something to be avoided. If this is not possible, he often attempts to meet it with an attitude that says, "I can't do it anyway. Why are you making me do it?" That is, he wants to be as minimally involved as possible. Because parents are often overwhelmed by the physical burdens of the child's illness, they may be unable to carry out activities which will develop the child's cognitive abilities and a feeling of wanting to try. Therefore, from a teacher's point of view, a psychologist and parent should make out an individualized learning plan for each child. This plan’ would help the parents include necessary cognitive experiences within the child's daily routine. It would also build in experiences which develop a desire to try. Continuous counseling would help the parents view their child's progress in smaller increments than his peers', and, most important, it would make the parents feel successful so they could make their child feel successful. As we view the development of these youngsters, next to the preschool years, the most critical period is adolescence. During this period a young person must begin to achieve a sense of autonomy. He must begin to see himself as a person who will be independent and self-sufficient. However, without support and assistance this vision to an arthritic youngster may seem little more than an absurd dream. He must be given, as part of his ongoing treatment, the opportunity for vocational and personal counseling. Without this kind of intervention the obstacles to self- sufficiency and independence may seem too great to overcome. 1-253 Seattle, Washington April 12, 1976 FORMAL SCHOOLING To improve communication the child's teacher should have release time +03 (1) Attend meetings about the child. (2) Observe his therapy sessions. (3) Work with a year-round tutor for the child to develop an supportive learning program. 1-254 Seattle, Washington 1. O.T. SERVICES FOR THE R.A. PATIENT Splinting Be Resting hand splints 2 provide total joint rest 2 maintain wrist extension for function 3. prevent finger drift 4, prevent finger flexion deformity Knee extension splints April 12, 1976 1. used more with preschool and early grade school children who tend to develop knee contractures more than adults 2. maintain knee extension 3. reduce mild knee flexion contractures Daily Activities A. Dressing 1. provide reaching devices to dress feet, etc., has lost ability to reach 2s adapting clothing fasteners Transfer training and safety 1s tub/shower transfers 2 toilet transfers (raised seat adaptations) Se car to wheelchair transfers Joint protection training; i.e., transferring stress joints to larger joints when possible Household adaptations (examples) 1s door knob extensions i key handles 3. jar openers and kitchen modifications when patient from small 4. wheelchair accessibility to cooking, washing, cleaning 1-255 Seattle, Washington April 12, 1976 Se home visit by therapist 3. Home/Hospital Programs: Strength & ROM A. Strengthen muscles to protect joints B. Range of motion program to maintain joint mobility A. Application of Heat i Hydrotherapy a. Hubbard Tank b. Pool--we use this mostly 2 Paraffin 3. Hot packs B. Followed by Active Exercise 1. Increase and/or maintain ROM of joints 2. Increase and/or maintain muscle strength 3. Trunk activities and functional activities C. Ambulation 1. Independent without aids 2 Independent with aids (such as crutches, walker, etc.) WHY DO THESE PARENTS NEED HELP: (1) Financial burden on top of chronically ill patient. (2) Emotional burden of daily putting child through exercises that probably are uncomfortable. (3) The best of us have difficulty disciplining ourselves to keep fit and we generally don't hurt. (4) They need outside help to relieve as many times as possible these extra burdens. POLLEY: Thank you very much. The services that all of you people have been talking about I presume are provided by the state. Is this an arthritis program, or is this a general state public health program without really particular emphasis on arthritis? SCHALLER: I could speak to that. We don't have any particular program at all. You're looking at the good will of people who are employed by various places and contribute services to children with 1-256 Seattle, Washington April 12, 1976 arthritis. But we have no source of funding to help children with arthritis, or really adults, for that matter. POLLEY: So this is not a state public health program? SCHALLER: No. I wish there were some sort of a program. POLLEY: Thank you. MELICH: To follow that up, I'm very interested in knowing, where do the families of these patients get their funds? I mean, do they have insurance? Do they have special assessments or subsidies given to you through various health agencies, or just where do they do it? Mr. Jolley, over here, was telling about all the different operations and things that his boy had to have. I'm particularly interested in this financial end. Just where are these people getting these funds? ESQUIBEL: Well, I was funded through the Welfare Department and Social Security Disability. MELICH: Social Security. ESQUIBEL: Yes. DONALDSON: It's a bureau of Vocational Rehabilitation. ESQUIBEL: Yes. SPARLING: At Children's Orthopedic Hospital they do have a free care or part-pay care facility there for the children. Arthritis now, the patient can apply for crippled children's service. I think to be eligible the income has to be quite low; it's a little bit higher than what welfare would accept. Personally, I think the children coming into Children's Orthopedic Hospital, financially we usually tell them not to worry. A lot of times their insurance will pay part. If they are not able to, then it's covered. When they get outside in the community, sometimes they have a problem with physical therapy and occupational therapy, getting this done. Public schools are now in the process of trying to be able to provide this, but it has not been accomplished in every county in the state as yet. ENGLEMAN: Yes, Marlin. SHIELDS: Ms. Sparling, regarding training, you mentioned a lot of things that a nurse needs to know to be able to deal with this type of a problem. I was wondering if you'd care to comment regarding whether you feel the basic training in nursing school qualifies you to do these types of things, or if additional training is needed? SPARLING: No. Personally, I think I have learned more from on-the-job training. The Arthritis Clinic came over to Children's last August, and I've been running the clinic. It was previously at the University of Washington. I was going over to the University of 1-257 Seattle, Washington April 12, 1976 Washington before the clinic came to Children's, and I really feel I've learned a great deal. I do need to learn more. SHIELDS: So you picked up most of your skills after training? SPARLING: Yes. ENGLFMAN: Ms. Arakawa? ARAKAWA: I find that a lot of the training is on the job. You have to go out and study for yourself and really try to get the whole family picture and the dynamics of the whole thing about chronic illness and its impact on the family. Another thing, I have come across a lot of professional people in my experience, and there are so many people that have remarked, "I didn't know children had arthritis." And, even among nursing, there are very few nurses who really know the problems of arthritic children and the different kinds of diseases that are considered collagen related. I think we at the university have seen a lot more because we were the referral center, but there's a lot more to be done for education. ENGLEMAN: Verna? ANTHROP: Ms. Arakawa, since you are one of the nurse practitioners and have more training than the ordinary nurse, would you be in favor of changing the curriculum for nurses as an undergraduate, giving some emphasis to rheumatology? ARAKAWA: I think it's an up and coming thing. I think that more definitive course work can be done in the field of immunology, and I think that would include rheumatology because the fields of immunology and rheumatology are just so closely related. There has been so much research and so many new things developing from that that, unless you're really keeping on top of it, it's hard. ANTHROP: The reason I asked you that was because a number of nurses and state association presidents, as we went around, weren't too keen on changing or giving more emphasis to rheumatology or helping this undergraduate or postgraduate in that area. And yet, let's face it, it's the nurse that runs the wheels in a clinic. I don't care what these doctors say. ARAKAWA: That's really true, and you really need a nurse who's well- rounded or is really informed. I think education, the public media, that helps. ENGLEMAN: Yes, Gordie. SHARP: I'd like to ask Nancy Sparling and Fuki Arakawa what attracted both of you into the arthritis field; and, secondly, what will it take to encourage more nurses and allied health professionals to come into the arthritis field where they're so badly needed? 1-258 Seattle, Washington April 12, 1976 ARAKAWA: I'm a pediatric nurse, first, and that's how I got involved with arthritis because I've been involved in all the facets of pediatric nursing and the ambulatory facility. I don't know. I think that if there were some monies available for scholarships for attending some of the workshops, I think that would be helpful because there are a lot of nurses who work in the hospital facilities caring for the patients that have no idea about--well, it's not that they don't know, it's just that they aren't being kept up on what's going on. SPARLING: I was hired at Children's Orthopedic Hospital as a clinic nurse. When the clinic was coming over to Children's I was asked if I'd like to do this clinic. I think my supervisors are aware of the need for more direct care from the nurse. At the time, I was doing a different clinic every day. Now I'm down to two clinics. I'm on them full time. I have the rest of the time to work with these patients if needed. I think the peers around me weren't aware of the needs. I think more or less by observation, by seeing the children, the needs that they have, they may become more involved. I've learned a great deal from the occupational therapists and the physical therapists at Children's. I think the inpatient nurses, they're learning, they're getting more arthritis patients at the hospital, and I think they're learning their needs. I found by going down and just being involved with the patient sometimes their care may be a little bit better. ENGLEMAN: Thank you very, very much. We will now call on Ralph Wedgwood and Virgil Hanson. Before I call on Ralph Wedgwood, I must say that this is the first time I've seen Ralph since a meeting about, what, 8 or 9 years ago of the Surgeon General's Conference on Arthritis, and there's been quite a hiatus. I would hope the next 8 years will be a lot more productive than have been the last. Would you identify yourself? TESTIMONY OF RALPH WEDGWOOD PROFESSOR OF PEDIATRICS UNIVERSITY OF WASHINGTON WEDGWOOD: TI am Ralph Wedgwood, Professor of Pediatrics at the University of Washington. I am grateful for this opportunity to testify before Dr. Engleman and the other members of the Commission. I've been actively involved in pediatric rheumatology for close to 25 years. I began my interests actually as a fellow in Boston, and I began my first pediatric arthritis «clinic at Western Reserve University in Cleveland in 1953 in an attempt to create a multidisciplinary center for the study and the treatment of children with rheumatic diseases and for the education of health professionals to care for those who are afflicted. I think it was perhaps one of the earlier centers of this type. It was started on a shoestring, funded far more by hope than by dollars. But in the almost 10 years in which I was associated with it I think we proved the validity of the concept of the multidisciplinary center and the clustering of children with this particular type of problem together so that they could be appropriately treated, studied, and so that health 1-259 Seattle, Washington April 12, 1976 professionals could receive the necessary education to translate what we might find in the research laboratory into the treatment of the future. Thus, when I came to the University of Washington in 1962, with Dr. Schaller we developed a program to establish another center for arthritis in childhood, this time in Seattle. And, once again, it has been an operation bootstrap. I think the term "shoestring" is far more appropriate because bootstraps have a certain solidity and our shoestrings have been somewhat weaker. And occasionally, I would state, the shoestrings have been in danger by being pulled a little tight around a rather full foot and snapping. It has been a tenuous existence. I think you have seen today, in some of the testimony that has been given to you, the validity of the concept and the impact that it has had upon this area and this community. The productivity of the center, both from the point of view of research and education, and patient care has been nationally recognized; and yet, in the 14 years of its existence, it has been severely handicapped by the lack of money, by the lack of secure funding that one could look forward to in the long term future as a continuing mechanism of support, by the lack of resources--simple resources such as space, appropriate rooms to examine children in--by the lack of personnel, personnel to take care of the children we must treat in a way in which we can obtain the information to improve treatment in the future. Thus, when I look back on these 25 years, while I can see progress, we have in no way been able to cease properly to really optimize the enormous advances that have occurred in biomedical research over this quarter of a century. We could and we should have done a great deal better. In my testimony here today I would like to urge the establishment of a limited number of centers for children with arthritis wherein multidisciplinary teams such as you've seen today may work together to study and treat these problems and to teach others to take care of them, to take care of them better than we have. These centers would, in my mind, constitute an extraordinary national resource, a resource of enormous value. Clinical research is dependent upon such resources. Children are not guinea pigs or test tubes that can be put on the shelf, awaiting the approval of a grant that may or may not be funded in our current environment. Clinical research must be able to seize upon the opportunity of the moment. The solutions are dependent upon the continuing availability of the clinical research resource and the presence of skilled and educated individuals whose prepared minds can, in fact, seize upon these opportunities and put together the information in a meaningful whole. It's only this type of research, which is indeed opportunistic, that can perhaps give some of the answers to some of the people that you see in this room today who've asked for better forms of treatment, prevention, better care. A stable center for the study and treatment of children with arthritis is a vital component to such a program and to such a process. Any why children? The problems of arthritis in children are, in fact, different from those of adults, and the ravages of the disease have different consequences in an infant they they do in an adolescent or in an 1-260 Seattle, Washington April 12, 1976 adult. And indeed, from the long term point of view, the numbers of years of disability for an infant who may, indeed, well have a full life expectancy is a great deal different from the number of years of an elderly person such as myself who might be afflicted with arthritis and does not have so many more years to survive. The study and the care of children require entirely different approaches, and because children are dependent, often the resources for their care are made dependent also. When the need for prioritization comes and the money crunch becomes real, children very often get short shrift in this community as in our nation. After all, children don't vote and they don't have much economic punch when you come right down to it. And so, in rheumatic diseases, as in a great many other facets of our national existence, the rights and the needs of children need special identification and special protection. That's why I now, 25 years later, feel that centers for children with arthritis are necessary, and that the needs and rights and protections of children with arthritis are no exception from the general rules of a nation. I thank you for this opportunity. ENGLEMAN: Thank you very much, Dr. Wedgwood. We will now call on Virgil Hanson. TESTIMONY OF VIRGIL HANSON, M.D. HEAD, DIVISION OF RHEUMATOLOGY AND REHABILITATION CHILDREN'S HOSPITAL OF LOS ANGELES HANSON: For the past 17 years at Children's Hospital of Los Angeles, we have had a clinic specifically organized for the study and treatment of rheumatic disease in children. In spite of the establishment of other clinics for children in the southern California area, our clinic has continued to grow, and at the present time we are unable to keep up with the requests for consultation and service. The active case }pad in any one year is approximately 500 children, and we have an average inpatient census of 10 to 12 children with rheumatic disease; 2,500 outpatient visits yearly are made to our rheumatic disease clinic. These figures are outlined to indicate that experience is not superficial and to illustrate again that there is a very significant number of young people afflicted with one or the other of the rheumatic diseases. About one-half of the children have one of the known, recognized three or four subtypes of the juvenile rheumatoid arthritis syndrome. The other half suffer from other rheumatic diseases which may equally or more seriously affect their lives. I would like to concentrate my remarks on the need for education and training in the area of pediatric rheumatology. The problems are: (1) Knowledge of the rheumatic diseases in childhood is inadequately developed. (2) Children are often denied the benefits of current governmental and charitably-sponsored research. 1-261 Seattle, Washington April 12, 1976 (3) Existing knowledge concerning the rheumatic diseases in children is poorly disseminated among medical and allied health personnel. Let me illustrate these points. (1) The need for more knowledge concerning the rheumatic diseases in childhood. At the recent American Rheumatism Association conference on the Rheumatic Disease of Childhood, it was clear that the syndrome of juvenile rheumatoid arthritis was hardly recognizable as the same disease as rheumatoid arthritis in adult life. Much work remains to be done to clarify the various subtypes which will be of great significance both with respect to etiology and treatment. Similarly, data from studies done on the other rheumatic diseases of children show differences which need clarification and may vield clues to both pathogenesis and therapy. (2) Denial of benefits. The assumption that the rheumatic diseases will express themselves in the same way in the growing human organism as in maturity is unproven and probably incorrect. Objectively, four new drugs have been approved for the treatment of adults with rheumatoid arthritis in recent years, but none have been approved for the treatment of children. Such marked discrimination should never have been allowed to develop in our society. (3) Deficiency of existing knowledge among medical and allied health personnel. The majority of pediatricians and family practitioners are poorly informed about rheumatic disease in childhood. Delays in recognition of disease and beginning of appropriate therapy, and also institution of inappropriate therapy, are therefore all too common. It can be noted likewise that rheumatologists whose training have been limited to adult medicine are also at sea when confronted with children who have rheumatic disease. The newly formed Council on Pediatric Rheumatology of the American Rheumatism Association is composed of an equal number trained in pediatrics or internal medicine prior to specialization in rheumatology. It is the unanimous opinion of this group that casual exposure to pediatric rheumatic disease, or the study of a few children as a secondary interest, is inadequate preparation for serious work in this field either as investigators or educators. It is important to correct these problems. To do so requires that sufficient numbers of physicians be trained in pediatric rheumatology to define the clinical and basic aspects of rheumatic disease in children, to provide the needed education for medical and allied health personnel, and to serve as the resource of expert knowledge for those children with difficult problems. Our current estimate is that there should be 1 trained pediatric rheumatologist per 1 million population, or about 220 in the nation as a whole. With present facilities, it is desirable that about 30 traineeships in pediatric rheumatology be available per vear. Assuming 1-262 Seattle, Washington April 12, 1976 that some fellowship positions can be supported by other means, and an NIH program of training for 20 fellows in pediatric rheumatology per year is recommended. Our experience to date indicates that rheumatology, properly taught, can generate much enthusiasm in students and house officers, and we have many more applicants for fellowships in our program than we can handle. The benefits of such a training program will not be limited to the field of rheumatology alone, but can lead to a significant improvement in child care. Thank vou. ENGLEMAN: Thank you, Dr. Hanson. Any questions from members of the Commission? (No response.) How did you arrive at that figure of one per million? HANSON: One of our trainees was transferred to Hawaii because her husband was sent there by the Army. She was told that there was no work for a pediatric rheumatologist. She is now employed full time by the University of Hawaii and is, in fact, full time busy providing care and teaching in as much clinical research as she can do at that facility. The population in the Hawaiian Islands, if I remember correctly, is about 770,000 people; that is somewhat less than a million. ENGLEMAN: This is the basis for your statement? HANSON: That's the basis, correct. ENGLEMAN: Dr. Wedgwood? WEDGWOOD: I believe there is some validity in the approximation, however, Dr. Engleman. The same applied in Cleveland, Ohio, where the population was about 3/4 of a million when I started; and within 6 months our clinic was swamped. ENGLEMAN : I wasn't questioning the figure. I just was interested in how it was arrived at. I have another question that I would like to ask either Dr. Hanson or Dr. Wedgwood. We have real problems in terms of drug testing in children. The comment was made by you, Dr. Hanson, that there were three new drugs introduced for treatment of adults, and that children have been discriminated against. I'm not sure in this instance that they have been. WEDGWOOD: They may have been protected. ENGLEMAN: What is your comment regarding how we are going to test these drugs in children? HANSON: Through Dr. Earl Brewer, primarily, we have organized a multicenter pediatric rheumatology study group for the testing of new drugs. We have just about completed the study of one of those. At the present time, the drug companies have bequn to approach us to test the others. I think the basic aspect of the problem is important; whether or not these new drugs are significant answers. The basic aspect is important because their position was that the potential financial return from doing studies in children was too small; and I think, through the work of Dr. Schaller and others, pressure has been brought on them. But I 1-263 Seattle, Washington April 12, 1976 think that failure of adequate support for «clinical pediatric research study programs also contributes to this problem and would delay any progress in the future. ENGLEMAN: Well, we have problems at the FDA as well, don't we? Isn't this a real barrier? HANSON: I can't answer that myself. Maybe Ralph can tell you. ENGLEMAN: Jane wants to say something. SCHALLER: The FDA is now quite willing to look at this. As a matter of fact, in May at the advisory committee meeting, we're reviewing all the so-called orphan drugs that haven't been tested in children. WEDGWOOD : Dr. Engleman, although it isn't directly relevant to this Commission, the problems of the orphan drugs of the childhood group for drug testing and drug approval at the present time is, I think, a major problem which should be of national concern, not just for arthritis but for many, many diseases. I think that the economics of it are the critical issue. It is probably not worthwhile in many instances fiscally for a pharmaceutical company to put on a really good study for drugs for children; and, therefore, they can get away with a statement in the package to the FDA that the drug is approved for use in adults but not for children. I think this is discriminatory. I think it could be solved quite easily by making it mandatory that for FDA approval of a drug the drug should have no limitations placed, without data, on the use in any group of any age or any sex. ENGLEMAN: Do you feel the same about testing drugs on normal children? That's a curve I threw at you. WEDGWOOD: That's a very, very important curve. TI think that the problems of informed consent in childhood are very, very major. But I don't believe that societally we're going to really get around them until we do face directly the problems of making it mandatory to test all age groups if you're going to get drug approval; then we can start to face the other issues. We're talking about not even testing in sick people, let alone normal people. I don't see how we're going to even start to approach the curved pitch that you suggested until we've gotten the rest of the plate fairly well straightened out. ENGLEMAN: Dr. Whedon? WHEDON: I'd like to change the subject. Are there other questions? ENGLEMAN: I don't know. It's a good subject we're on. POLLEY: Change the subject. ENGLEMAN: Change the subject. WHEDON: I'd like to direct the question primarily to Dr. Wedgwood, but also to Dr. Hanson. Dr. Wedgwood, you mentioned "centers," and I 1-264 Seattle, Washington April 12, 1976 think this is one of the first mentions of the word this morning. As you well know, the National Arthritis Act authorizes quite a bit of funding for the establishment of centers. For the benefit of the audience, an authorization is merely a license. There isn't money there yet; it has to be appropriated. Obviously, you feel that juvenile rheumatologic diseases ought to be involved in centers. Should there be special pediatric centers separate from centers of a broader nature for adults, or would it be better to have the study of children integrated with the study of adults? I use the word "study" because it's an automatic verb with me. Actually, these centers are thought of not only for research, but for training and education, and SO on. The second part of my question is, what do you think is a proper mix of research, training, education, data processing, and so on, in a center? I really asked you two questions. WEDGWOOD: Dr. Whedon, neither one of them make very easy questions. Perhaps the term rather than "study" that might be appropriate for what might go on in the center would be "the propagation of knowledge," using the term "propagation" in its rather old sense, which is the husbanding of knowledge, the transmission of knowledge to the next generation, and the application of knowledge to the immediate: the propagation of knowledge. Many years ago, I would have said that, optimally, the centers for children and the centers for adults should be joint and combined; and I think in many instances this is probably still the case. But I think that it is absolutely vital, as I hope I indicated in my testimony, that the needs of children be sufficiently protected within the environment. I believe, at the present time, because of the funding problems and because of the special needs of children, it is probably relevant to consider the establishment of special centers for children with arthritis; not many of them. Now these could well be in the same place, or even within the same group that have studies which include adults. But I think the identity for children needs to be distinctly stated because the needs are so very different for children; the diseases are so very different; and because, while a great deal of sharing is possible and is, in fact, beneficial, the programs have to be so very much modulated that they need distinction. Certainly, there are many, many very small issues between the center for the child and the center for the adult that need to be distinguished. Much of the arthritis seen in adults is quite severely crippling and quite frightening to the young child, and the mixing of the populations is not always optimal from the point of view of the management of the child. x think the personalities or the interests of the personnel of the health professionals involved in the clinic need to be very different when working directly with the involved arthritic adult versus working with the child, and with the family, and with the schools, and all of the other ancillary things that must go on in the appropriate care and study of the child. So I would now opt--and I would not have opted this way 25 years ago-- for the establishment of a limited number of special centers for arthritis 1-265 Seattle, Washington April 12, 1976 in children, specified as being for children. I think only in this way can we perhaps get the long term training, the long term research established. WHEDON : Could I follow with my second question? Do you have a guess or a feeling about the appropriate mix of basic clinical research, training, education, all aspects, and other functions in a center? WEDGWOOD: Virtually always, in both the centers that I've worked in, the needs of service are so great, and the demands on the individuals working are so great, that research--and often, teaching--has become a luxury around the edge of taking care of the whole child. So, in looking at balance at the present moment, I would hope that very appropriate consideration would be given for securing the research base and the teaching base because I'm sure that the demands of service are always going to be there, so the balance in service demands will have to be met. It is the needs for the securing of the research base which are most important, and that's where we lose out at the present time. When the patients are knocking at the door and they're ill, you go down and see them. Unless you've got the funding, unless you've got the space, unless you've got the personnel--which we do not have--then the research goes down the tube; and then the opportunity is missed, the chance is lost, and the new knowledge is going to have to wait for another day to come back. HANSON: Can I just make a short comment, Dr. Whedon? I agree with what Ralph just said, very much. As for the proper mix, or balance, I would agree that that would be very hard to figure. We'd have to think of balance in terms of proportion of funding, balance in terms of the number of people, so it would take some planning, I think. But I think it's important that a center have a very sound research program as a significant part of that function because I think the center must always be looking at the problems that it sees in a critical light, and I think that only comes about through a good research program. ENGLEMAN: Bill? DONALD SON: I was just going to ask it a little differently. If centers could be funded for a research effort and for an educational effort, do you think that there is other funding available that would meet patient care needs? HANSON: I think in the State of California the Crippled Children's Program has done well in meeting most of the costs of patient care needs. There always needs to be, we have found, something a little beyond this because there are ways in which specific needs for patient care cannot be identified ‘in categorical programs such as Crippled Children's Services, or in programs such as Medi-Cal. I think there is a small need for what might be called the coordination-overview-treatment-management kind of medical care in the center kind of program. I don't think that's major, in terms of funding. There's a large need for the educational function. WEDGWOOD : I would agree with Virgil. I think that the needs for the research funding and for the training funding are enormous, and I don't know of any good way of getting the support in that end at the present 1-266 Seattle, Washington April 12, 1976 time. To me, the health professionals in a center need to have some time for personal study and for teaching, and unless you can really free up that time, which means money, it'll never get done. I think that when vou start to have a center that studies patients, there is a somewhat slight increase in patient care costs. I think that this is an appropriate charge to the research and education budget, because it is an increased cost. ENGLEMAN: Thank you very much, both Drs. Wedgwood and Hanson. We must go on now. Time is running short. We'll call on Dr. Robert Willkens, and Melvin Sampson. TESTIMONY OF ROBERT F. WILLKENS, M.D. CLINICAL PROFESSOR OF MEDICINE UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE WILLKENS: Dr. Engleman, Dr. Polley, members of the Commission: I would like to introduce myself as Robert Willkens, a physician in the community concerned with the care and evaluation of patients with rheumatic disease, a part-time member of the faculty of the University of Washington who has been particularly interested, as a research and care project, in the arthritis seen among tribes of northwest Indians. I would like to direct my testimony to three general areas: one, the center concept of arthritis care; two, the possibility of developing a mobile unit for the evaluation and care of these geographically dispersed population groups with a high prevalence of rheumatoid arthritis; and then, finally, the concept of supporting some sort of a transportation system to make it more accessible, that is, care for the patient in urban communities. I believe in the center concept of the treatment of rheumatoid arthritis, and I believe that the northwest area would be particularly receptive to such a center which would bring together physicians, paramedical and lay personnel with the primary aim of care and education of the patient with extensive, incapacitating musculoskeletal disease. I believe one of the greatest deficiencies in our attack on these diseases is the failure to educate the patient as to his expectation of the disease and how he can best deal with it. Such a center would provide such educational opportunities for training of physicians and paramedical personnel as well as much needed care for such patients. The further use of such facilities would include the availability of problem patients that would direct investigative efforts in the area of musculoskeletal disease. Second, I believe a coordinated mobile team of physicians, consisting of rheumatologists, orthopedic surgeons, physiatrists, and lay paramedical personnel, could be brought into existence to service remote areas of the State of Washington. There is a distinct need for such a team to visit areas servicing native Americans in the Yakima Valley, along the coast of Washington, and in the north central portion of the state, the Covel Indian Reservation. A primary team is already doing this, and I am part 1-267 Seattle, Washington April 12, 1976 of that team, but it is inadequate to meet the needs of these individuals. The increased prevalence of rheumatoid arthritis recognized in these native Americans has been written about. I don't want to be presumptive, but I think most of you are aware of the reports that we have published on arthritis and rheumatism relative to the finding of an increased prevalence of rheumatoid arthritis among the Yakima Indians. (Beasley, R. P., Willkins, R. F. Bennett, P. H.: "High Prevalence of Rheumatoid Arthritis in Yakima Indians." Arthritis and Rheumatism, Vol. 16: T43- 748, November - December 1973; and Willkens, R. F. et al.: "Studies of Rheumatoid Arthritis Among a Tribe of Northwest Indians," Journal of Rheumatology, Vol. III, 1: 9-14, January, 1976). We found a prevalence of 3.4 percent among young women, compared to a 1.4 prevalence in other female population groups studied in this country and elsewhere. We have also evaluated musculoskeletal disease and found that it probably is distinct from systemic lupus, which has now been reported to have an increased prevalence in the Aberdeen area and other contiguous areas with the Northwest Indian area. We think ours is rheumatoid arthritis. On the other hand, it's somewhat further distinct in that many of the responses of individuals there suggest that it may be a distinct form of rheumatoid arthritis in some way related to the genetic makeup of the peoples in that area. Not only could such a mobile team continue to service the individuals in that area, but it could perhaps further investigate the nature of the arthritis found to be there in greater predominance than it is in other parts of the country. Finally, quite distinct from anything I've mentioned, I believe that it would be important at some point for a resource consisting of a transportation facility to be developed in "urban areas such as the Northwest which would provide expeditious travel to and from medical care facilities. I realize that this is conceivably a very costly undertaking, but it could be interdigitated with existing transportation facilities in a community through their public transportation systems. ENGLEMAN: Thank you, Dr. Willkens. Melvin Sampson? TESTIMONY OF MELVIN R. SAMPSON CHAIRMAN HEALTH AND WELFARE COMMITTEE YAKIMA TRIBAL COUNCIL YAKIMA INDIAN NATION SAMPSON: Thank you. Before I start, accompanying me is Mr. Tom Seidl. He is the Service Unit Director of our Indian Health Service Outpatient Clinic on the Yakima Reservation. As an elected Tribal Council member and Chairman of the Health and Welfare Committee of the Yakima Tribe, I welcome this opportunity to speak to you regarding arthritis and its impact on our community and on our reservation. Studies conducted by the Rheumatology Department of the University of Washington indicate the prevalence rate of this disease among Yakima 1-268 Seattle, Washington April 12, 1976 Indians is perhaps the highest in the world. You are all assuredly aware of the effects of this disease in terms of pain and suffering as well as its impact on the family. I, therefore, will not use my time describing the consequences of this particular disease, but rather identify the areas in which the Commission's recommendations might enable our community and reservation to better cope with its affliction. We support all the testimony you hear regarding the need for additional research efforts. Research is indeed the ultimate factor in attempting to arrive at the still unanswered questions of cause, treatment, and prevention. We do, however, urge you to deal with the problem on a more immediate basis; namely, improving services to those presently affected, and to this end I will concentrate the balance of my discussion. The Federal Government has a unique relationship with Indian people. The Indian Health Service has been delegated the responsibility for the carrying out of programs to improve the health of our people. We recognize that progress has been made, but resources have not kept pace with increased demand and inflation. To be specific, a portion of the recognized treatment regimen, namely, physical therapy and surgical corrections, are often deferred with the rationale that the medical problem is, in fact, nonemergent. Unless the individual has insurance, Medicare or Medicaid, long delays are often experienced. Because of the magnitude of our particular problem, we request that special funding be provided to develop a comprehensive health plan to augment our present health delivery system. Equally important is that funds would be available for implementation. Some of the elements of the plan could be: (1) Establishment of a physical therapy unit on our reservation. Occupational therapy is also being considered. (2) Additional expansion of home health care program with a focus on debilitating disease. (3) A psychological component that would work with individuals and families to assist them in coping with their illness. (4) Contracting for additional physician specialty time for evaluations and followup. (5) Supplementation of Indian Health Service contract budget to eliminate the wait for recommended treatments. The aforementioned represent our thoughts for improving life for a large number of our people. Our thoughts can only become reality with the support and endorsement of this Commission. Again, I would like to thank you for giving us the opportunity to express our concerns, and we sincerely appreciate anything you might do to facilitate our ambitions. Thank you. 1-269 Seattle, Washington April 12, 1976 ENGLEMAN: Thank you very much, Mr. Sampson. Any questions from members of the Commission? ANTHROP: Mr. Sampson, does your tribe carry an insurance policy of any kind, in total? SAMPSON: This year, for our tribal employees, which number about 500, we instituted a group health plan. Now this is exclusive of the Federal Service Employees. This is the first year that's been in effect, which is a cost factor to the tribe. ' ANTHROP: The reason I asked you that is because I know our tribe has had that for the past 6 years, and so many of them will not use it. They're all geared to going up to the hill, there; and yet they have this health insurance that they're paying premiums on and they really don't use it. So I just wonder if they understand adequately what benefits it could bring. SAMPSON : Yes. We anticipate some of this; and, as a matter of fact, we're experiencing some of it now. We've worked out a relationship with the Indian Health Service where total coverage will be realized by the tribal employee, where what's not paid for through the insurance will be covered by the Indian Health Service. But you go through a period and through a preaching procedure to try to get your Indian people to trust the Indian Health Service; then, when you do get that far (they're doing what you want them to do) then, all of a sudden, you come in with a new program, as far as health insurance, and then you've got to reestablish a new trust because it's hard to get some of your more elderly people to go. The whole Portland area and the Yakima tribe is under a CMC, contract medical care. We do not have an Indian hospital in the northwest area. So, consequently, we have to contract to the private segment, which is skyrocketing. It's just terrible. ANTHROP: Dr. Engleman, I think the Pimas have the Yakimas beat in the incidence of arthritis. SAMPSON: I'd gladly let you win. ENGLEMAN: We had the privilege of visiting the Pima Reservation recently and were very impressed by the services t.at are available to them through public health services. I'm sure that you are familiar with these services. If you aren't, I suggest that you become more cognizant of their facilities, and perhaps these can be applied to the Yakimas as well. WHEDON: May I ask a question? ENGLEMAN: Yes. WHEDON: I'm really startled that there is no Indian Health Service hospital in this area. Can you tell me more about that? Why did that happen? Was there one that was eliminated or what? 1-270 Seattle, Washington April 12, 1976 SAMPSON: Perhaps Tom could address that a little more than I could. Historically, they went through an area where they had TB hospitals. Now we had one down here in Tacoma, the Crishman Hospital. In some areas they converted those into Indian hospitals, but in this particular area they closed it down. We do have a Public Health Service hospital here in Seattle that we utilize on a limited and restricted basis, which is the Marine Hospital. But, other than that, we do not have an Indian Health Service (hospital). We're the only area in the United States, incidentally, that does not have an Indian hospital. I'm the Chairman of the Northwest Portland Area Indian Health Board, which covers Washington, Oregon, and Idaho. We're going to try to conduct a survey to see if it's going to be feasible even to have one; and, if so, then we'll construct our efforts to see if we can get one. WHEDON: Does Senator Magnuson know about this? SAMPSON: Oh, yes. ENGLEMAN: Yes, Bill. DONALDSON: I'd like to have Mr. Sampson comment on the effectiveness and the reception of efforts like Dr. Willkens has described. SAMPSON: You mean the outline that he had? I think that's an area that is extremely neglected, especially in a reservation area. You have outlying areas where we had difficulties, and through some of our outreach programs were able to reach some of the people that are afflicted with arthritis. I really think the mobile unit concept he has would be one of the answers to reaching some of our people. Now we currently have set aside a particular day--and Tom can be more specific about it--as far as a set date, weekly, I believe, for people to come in. But then we had a transportation problem, amongst other things, getting the people on a routine and a regular scheduled basis to get them in for treatment. DONALDSON: You discussed the problem of trust; and when Dr. Willkens comes in with a new program like this, is this a significant problem that interferes with it? SAMPSON: I would think not, if it was done in total conjunction with the Indian Health Service and in conjunction with the tribe. I think if the groundwork is laid out properly, you're probably going to get some, but I think the percentage of it would be extremely reduced if the preparatory was made first. WILLKENS: May I comment on that? The history of our involvement with the Yakima Indians was that we initially went over to evaluate the epidemic of "lupus" that was being seen in eastern Washington. When we got there, conceptually to do some sort of research, we were looked at with great reservation and great resistance. As we've stayed there, and been involved with the care of these peoples for something like 71/2 years, we've become, in effect, their physicians as well as their consultants; and now, we are technically not doing any research. We're involved with their care. We're not only accepted, but our advice and 1-271 Seattle, Washington April 12, 1976 counsel is sought. I think the ingredient of long term involvement with people with single physicians is one I can't emphasize enough, not only with respect to the care of these peoples, but with respect to the care of anyone with arthritis. ANTRHOP: Dr. Engleman, I was going to ask Dr. Whedon what possibilities there would be to do like you did with the Blackfeet, in comparison to the Pimas? They should have come to Yakima instead of the Blackfeet. ENGLEMAN: We're asking ourselves questions now, Don. Do you want to answer that? WHEDON: Well, I know that Dr. Peter Bennett, who is head of the Epidemiology and Field Studies Branch of our Institute--main headquarters is in Phoenix--has been involved in some studies of the prevalence of arthritis in the Northwest area. I have the feeling that they have involved the Yakima Indians, but I may not be correct. WILLKENS: That's correct. He's an author on this paper. WHEDON: So, we've done it. ANTHROP: Okay. ENGLEMAN: May we now call on Dr. Healey, Kenneth Ashar, and Dr. Peter Simkin. I might say that the proceedings of these hearings are going to be published as part of the report of the Commission. There will be a separate volume published which will contain all of the proceedings of these public hearings throughout the country. Dr. Healey? TESTIMONY OF LOUIS A. HEALEY, M.D. RHEUMATOLOGIST DEPARTMENT OF INTERNAL MEDICINE THE MASON CLINIC HEALEY: Mr. Chairman, members of the Commission. I am Louis A. Healey. I practice rheumatology here in Seattle as a member of the Mason Clinic. I'm a clinical member of the faculty at the University of Washington's Division of Arthritis. My role this morning would be to give a general statement introducing a discussion by other people about the need for better treatment in the specific diseases of rheumatoid arthritis, systemic lupus, and osteoarthritis. In addition, I would like to share with you some observations of my own from my role in practice. I'm sure it is clear to all of you from previous testimony of the great needs in the rheumatic diseases for further research. The specific diseases will be discussed this morning by other physicians concentrating on the individual diseases. 1-272 Seattle, Washington April 12, 1976 I would like only to mention certain specifics that occurred to me in dealing with patients. I have been struck over the years, in seeing patients with rheumatoid arthritis, that there have been considerable advances. More effective medicines are available and, it seems to me, offer promise that a safe, effective medicine might be in the future. In addition, recent research suggests to me that for the time we might be able, by genetic studies, to identify those people who might develop rheumatoid arthritis and thus hopefully prevent it. From my view, I'm struck that systemic lupus is actually increasing, and this 1s a question that occurs to me: Why is that so? That would seem important to answer. Osteoarthritis, the common problem, is still unfortunately in a situation of not receiving much attention. It has been thought for years, and I think in many ways still is, to be an inexorable event associated with aging; but an important question might be: Why does it occur in different people at different ages? Why do young people get an effect of aging? I'd like for a minute, then, to discuss with you a couple of things that I have viewed from my own experience. I am interested in attempting to provide rheumatologic consultation in areas of the Northwest where there are no rheumatologists, particularly southeast Alaska, northern Idaho. I have been struck by the paradox in the situation that while there is much to be learned, there is much that has been learned and could be done and is not known. Patients are not aware of it, and nonrheumatologists are not either. I view that as particularly unfortunate because it fosters a climate of dispair, the notion that nothing can be done; and, in my particular view, this attitude is what is responsible for the prevalence of quackery. I think that a program of education could do much to change this. I think that that should be directed toward patients and to nonrheumatologic or health personnel who deal with these patients every day. I think in this way much could be done to change this attitude of despair. Thank you for this opportunity. ENGLEMAN: Thank you, Dr. Healey. Mr. Ashar? TESTIMONY OF KENNETH J. ASHAR RA PATIENT ASHAR: I am Kenneth Ashar. I contracted rheumatoid arthritis in the fall of 1967, at the age of 44. At that time I was employed by the Boeing Company as a Senior Instructor Flight Engineer, designated by the FAA as a Check Airman. My basic duties were the training and flight checking of customer airline flight crews all over the world. The disease was diagnosed in April, 1968, at the University of Washington Hospital Arthritis Clinic. Despite what I consider to be the finest treatment available, the arthritis progressed rapidly until I became totally disabled in August, 1970. I was then 47 and had advanced to the position of Flight Simulator Manager, in charge of a $10 million 1-273 Seattle, Washington April 12, 1976 simulator and digital computer complex. My career was cut short when I had to go on medical leave of absence. In terms of my relationship with the government, I was converted from an asset to a liability. I am still totally disabled. Unfortunately, physical limitations and pain are not the only factors. There are psychological considerations. It's very hard to maintain a cheerful and optimistic outlook when you are in constant pain. The cyclical nature of rheumatoid arthritis leads to emotional ups and downs. The financial aspect is equally bleak. If I had not had private disability insurance with a reputable company, I, and my family, would have lost everything we had acquired over the years. Social Security benefits cannot bridge the gap to an upper middle class income. Thus, the arthritis sufferer's family members also become victims of the disease. RECOMMENDATIONS The impact of rheumatoid arthritis on the nation's economy is staggering. The cost in human suffering and anxiety defies the imagination. Therefore, I feel that a substantial increase in funding for arthritis treatment and research is mandatory. Increased funding would expand the following vital areas: (1) Diagnosis and treatment for those who already have the disease. a. More health science personnel with specialized training in rheumatology. b. Development of new and advanced techniques of treatment and rehabilitaiton. Ce Professional counseling for patients and their families on the psychological aspects of this disease. d. Community physical therapy facilities which include heated swimming pools with specially designed equipment suited to arthritics, Jacuzzi whirlpool baths, and exercise equipment. All activities to be supervised by trained therapists. (2) Research. Rheumatoid arthritis cannot be prevented or eliminated until its cause, or causes, are identified. Only intensified research can accomplish this. Obviously, the long range objective is research into the causes of this disease. However, feedback from this effort will speed up the progress of the immediate objective: diagnosis and treatment of those already afflicted. Thank you. ENGLEMAN: Thank you, sir. Dr. Simkin? 1-274 Seattle, Washington April 12, 1976 TESTIMONY OF PETER A. SIMKIN, M.D. ASSOCIATE PROFESSOR OF MEDICINE UNIVERSITY OF WASHINGTON SIMKIN: I'm Peter Simkin, Associate Professor of Medicine at the University of Washington. I'm also the Chairman of the Medical and Scientific Committee of the Western Washington Chapter of the Arthritis Foundation. I would 1like to testify this morning regarding the great need for expanded clinical trials in the problem of rheumatoid disease. This need was recently addressed by Sir Frank Macfarlane Burnet, the Australian Nobel Laureate and elder statesman of immunology. When asked for his views on appropriate therapeutic approaches to this disease, he said, "I wouldn't exclude anything that might possibly be of some good......even copper bracelets......Let's have tests, under proper scientific conditions, of all these things." I fully agree with these remarks, and am here to argue for a greatly expanded program of clinical trials in rheumatoid arthritis. The rub lies in Sir Frank's phrase ‘'under proper scientific conditions." Because of the fluctuating course of rheumatoid arthritis, "proper scientific conditions" require many patients in order to assure that observed improvements result from the agent being tested and not from coincidental spontaneous remissions. Because the disease responds slowly to many effective agents, "proper scientific conditions" means that well- designed trials must often be prolonged over a period of 6 months to a vear. Because there is no simple end point to indicate improvement, "proper scientific conditions" means that each reevaluation of every patient must include many careful measurements, and will therefore be time consuming for both physician and patient. Because of all of these factors, therapeutic trials "under proper scientific conditions" are above and beyond the capacity of virtually all individual practitioners in our field. This is true of academicians, such as myself, who see rheumatoid patients only in the setting of a university hospital. It is all the more true of busy private practitioners. It is now clear that large scale, collaborative trials are the only way to meaningfully evaluate promising therapeutic programs for rheumatoid arthritis. I believe that the NIAMDD should be adequately funded and charged with the responsibility to seek out and evaluate any promising form of therapy which appears. Site visits should be made to evaluate the patients and the records of any therapist whose results are encouraging. In this search, novel and unusual forms of treatment should not be neglected, regardless of their source, including practicing physicians, osteopaths, chiropractors, naturopaths, dieticians, etc. For all of those agents with a plausible claim of benefit, appropriate trials should be designed, and these studies should then be contracted to capable rheumatologists for collaborative study just as pharmaceutical companies now contract for their clinical trials. Such a program would bridge the gap, now far too long, between encouraging observations and definitive studies of both the toxicity and 1-275 Seattle, Washington April 12, 1976 the effectiveness of new agents. To illustrate the problem, let me briefly recount the history of two accepted forms of therapy: gold shots and oral penicillamine. Both of these agents were introduced by responsible physicians who tried them for seemingly logical reasons. Both doctors claimed beneficial results. Small anecdotal trials for and against each agent then kept the water muddy for 30 and 10 years, respectively, until gold and penicillamine were found to be effective in large, collaborative trials of proper, blind design. It is not to our credit that neither of these definitive trials was conducted in the United States. Unless the responsibility for designing and conducting such trials is clearly assigned and adequate funds are provided, we will continue to have agents of some promise which languish in limbo without definitive evidence for or against their use in rheumatoid arthritis. Clearly, most agents evaluated in such a program would be found to have unacceptable toxicity or to be without value against the disease. This, in itself, however, would be a significant service. I believe that a large scale, aggressive program of contracted clinical research is the only feasible way to reduce the unacceptably long lapse between the first evidence that an agent may be effective and the time when critical physicians know enough about its potential toxicity and therapeutic effectiveness to prescribe it wisely. In Drs. John Decker and Alfred Steinberg, the NIH now employs two able and experienced clinical investigators who are well qualified to direct such an effort. If such men were adequately funded and charged with the responsibility of designing and directing appropriate, contracted, cooperative studies, I feel confident that we could significantly accelerate the time between the first appearance of a promising idea and its definitive evaluation. Thank you very much for the opportunity to present these ideas. ENGLEMAN: Thank you, Dr. Simkin. Any question, comment from members of the Commission? Yes, Dr. Whedon. WHEDON: I feel called upon. ENGLEMAN: Good. WHEDON: Thank you very much, Dr. Simkin. I think your points are all very well taken. I'm sure you can imagine very easily that we've been talking and thinking about clinical trials at NIH with increasing intensity over the last year or two particulurly. We are not in a position at the moment to push ahead for a number of reasons: one, of course, is the probable considerable cost of such trials involvina numbers of patients, as it does; numbers of investigative managers; several clinics, and so on, over the period of time; and then also, because of the Freedom of Information Act, we're in a muddle and a mess leading to difficulties of placebo and control patients, and whether we shall be able to get appropriate untreated controls in such studies is very difficult. We may, from here on, be left with having to compare one treatment with another. In that situation, you could have two ineffective treatments and one might appear to be slightly less ineffective than the other. So that's another mess that we're dealing with. But this is only to indicate to you the extent to which we're thinking about this and are very concerned about adequate clinical trials. 1-276 Seattle, Washington April 12, 1976 Let me end on an upbeat by saying that I really think that if added funds were provided for appropriate support nf sizable, well controlled clinical trials, this in the end would be a vast saving to everyone because we would get answers, and proper answers, in, let's say, 2, 3, or 4 years, as compared to the 30 and the 10 that you were mentioning. ENGLEMAN: If you can sufficiently impress Senator Magnuson with the importance of our recommendations, I'm sure that your requests will be fulfilled. Before this group leaves, though, I was interested in Dr. Healey's direction to the importance of education of the patient, with which I'm sure the Commission is in full agreement. In the last several months we've been faced with the dilemma of three or four new drugs, each of which is strongly boosted by its parent company. How do we answer the dilemma of the patient? Do you have any suggestions as to what we might do nationally in order to alleviate this problem? HEALEY: Is the problem you refer to for the patient to know what to make of these new medications? ENGLEMAN: Yes, in general. Obviously, it leads to a good deal of confusion. We've had four new breakthrough drugs in the last few months. What is the impact on the patient, and what might we do about it? HEALEY: I don't see that we have to set up lines of communication directly to patients, unless we were to speak to the press more than we do. I would give appropriate and informed opinion to the primary physicians who deal with most of the patients and dispense most of these medications. ENGLEMAN: Thank you very much, gentlemen. We'll proceed now, and call on Barbara Ridgeway, Dr. David Anderson, and Dr. Justus Lehmann. TESTIMONY OF BARBARA A. RIDGEWAY RA PATIENT RIDGEWAY: I'm Barbara Ridgeway. I have had rheumatoid arthritis since I was 10 years old. Like a lot of youngsters growing up with this disease, I did not understand the nature of it or how to cope. It is hard for any child to understand pain, why he has to use crutches or stay in bed and not run like the other kids. But with the optimism of vyouth he looks forward to the day he will get well. It is the adult with arthritis who soon discovers the continuous shattering effect this disease has not only on himself, but on those he loves. In personal terms, a year after my marriage I became bedridden due to arthritic damage to my left hip. Because of constant pain and further joint disintegration a cup arthroplasty was performed. I was in the hospital 6 weeks, 3 of them spent in traction. In 1970 the right hip became the disease's traget. Again, surgery was necessary. This time the 1-277 Seattle, Washington April 12, 1976 relatively new procedure, the total hip, with its plastic prosthesis, was inserted. Total length of hospital stay: 3 weeks. Since then, I have been in the hospital three times; once, for a bleeding ulcer, a byproduct of two of the prevailing methods of treating arthritis at this time, aspirin and steroids. The other hospital stays involved major surgery on both knees to scrape destroyed cartilage. Called knee synovectomies, they are temporary measures, at best, to check the onslaught of damage. These operations occurred last summer, and since that time I have experienced increasing difficulty in my left ankle. The orthopedic doctor has indicated more surgery will be necessary soon as that joint is almost completely gone. The arthritis has not just relegated itself to the lower extremities. Other joints affected are my fingers, elbows, spine, and shoulders. The orthopedic doctor has indicated more surgery will be necessary as soon as that joint is almost completely gone. The arthritis has not just relegated itself to the lower extremities; other joints affected are my fingers, elbows, spine, and shoulders. Because of this disease we have had horrendous medical bills. The pain and limiting effects have also led me be a less than active wife and mother to our 33-year-old son, which has, in turn, severely strained our family life. Now that has been the effect of arthritis on my life so far. I am now only 34 years old, but, frankly, it scares me to think about the future and further disintegration of the joints. And I would suggest to this panel that my case history and feelings of foreboding are not unique if things continue as they are at present. However, if more money was spent in the areas of research and treatment of arthritis, people such as myself could look forward to a happier future and become active, functioning members of society. Specifically, research should look for: (1) A cure for arthritis. (2) A preventative. (3) Better drugs and surgical methods of treating the crippling effects of arthritis. Treating the arthritic should also provide: (1) A team approach which deals with not only the treatment of the physical effects, but the psychological trauma accompanying the disease, especially in young people and their families. (2) Concentrated skill or job training or retraining to compensate for loss of joint or limb mobility. (3) Finally, a central location where all these benefits can be housed under one roof and with a full-time staff to make it readily and easily accessible to the most handicapped patient. In conclusion, I would like to say that heretofore not much has been done for arthritis; maybe because it isn't a romantic disease like cancer 1-278 Seattle, Washington April 12, 1976 or heart trouble. No, arthritis doesn't usually kill people; it only cripples their lives. Thank you. ENGLEMAN: Thank you, Mrs. Ridgeway. Dr. Anderson? TESTIMONY OF DAVID W. ANDERSON, M.D. ORTHOPEDIC SURGEON THE MASON CLINIC ANDERSON: Mr. Chairman, members. I'm Dr. David Anderson, an orthopedic surgeon... I practice at The Mason Clinic, and am Clinical Associate Professor at the University. Parenthetically, I have been interested in the results of early synevectomy in rheumatoid arthritis for 10 to 12 years. In considering the priority of needs, as far as what I was going to speak to you people today about, I included the following, but not necessarily in the order of importance, and this is somewhat redundant from what you've already heard: (1) Patient education--utilization- of the existing community facilities. (2) Patient education--understanding the disease and, hopefully, prevention of deformities. (3) Patient education--eliminating quackery and unproven or misguided treatment. (4) Arthritis centers--this is somewhat patterned in the CARE program in Canada which basically is a centrally located outpatient facility which is combined with transportation facilities, and it's also combined with roving mobile specialty teams which will visit the smaller communities. It acts as a source for both patient and paramedical as well as physician education, and it should include enough patient numbers to make clinical research studies meaningful. (5) Basic science research--in medical schools; and, of course, I don't feel this can well be done in clinical practice situations, such as I have. But we need a concept of what Peter Simkin was talking about, clinical result studies, controlled studies for clinical research. (6) Training of arthritis specialists--particulary those that I see on a one-to-one basis, where the orthopedist works with the rheumatologist in his years of training. I think this is terribly important because my feeling is that surgery is still indicated in cases prior to the advent of total joint replacement. If we can see the younger rheumatologist and show him, particularly in surgery, some of the disease states, he has a much better understanding of the disease. 1-279 Seattle, Washington April 12, 1976 (7) Refresher courses--for general practitioners, primary care physicians, as well as community-sponsored courses for nurses, therapists, paramedical personnel, and patients. (8) Money for patient care--that includes both hospitalization and surgery. Thank you. ENGLEMAN: Thank you, Dr. Anderson. Dr. Lehmann? SUBMITTED STATEMENT OF JUSTUS F. LEHMANN, M.D, PROFESSOR AND CHAIRMAN DEPARTMENT OF REHABILITATION MEDICINE UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE Arthritis is a general term covering many categorical disease entities. Some are "wear-and-tear" diseases associated with age; others strike the working age group; all are chronic and, in the vast majority of cases, lead to a significant loss of function for these individuals. Approximately 4 million Americans suffer from rheumatoid arthritis; anywhere from 5 to 40 million (or 85 percent of the 70-79 year old age group) suffer from osteoarthritis, with 200,000 completely bedridden. Related diseases are systemic lupus erythematosus, gout, and musculoskeletal diseases, which will increase the estimated unmet need. Arthritis is extremely common and is frequently associated with severe disability, loss of work and income, and forces many of its victims onto the public assistance rolls and into nursing homes at a considerable cost to society over and above the primary medical cost. Even with the most vigorous research efforts and a major increase in research funding, a breakthrough in prevention or cure cannot be expected in the foreseeable future. Some of the "wear-and-tear" diseases associated with old age may never be preventable. Therefore, it is essential that appropriate emphasis is placed on maintaining the arthritis victim in a functional state: self-reliant, self-supporting, self-respecting, and living a better quality of life without becoming a financial burden to his family and society. : : That this goal can be achieved through the development of better rehabilitation procedures has been clearly proven in other disabling conditions. Liberty Mutual, a private insurance carrier, covering medical costs and Workmen's Compensation, was akle to reduce the cost of care per spinal cord injured patient by $50,000 through the introduction of the most modern rehabilitation procedures in specialized centers. A study done at the University of Washington on stroke patients showed that the investment in rehabilitation of this entire group of patients.saved money, even after the deduction of the rehabilitation expenditures, by reducing nursing home placement. In spite of this clear proof of cost benefit, the support for research in rehabilitation, not only in the area of arthritis, but overall, is totally inadequate. To be cost effective, research expenditure has to be in proportion to money spent on patient care to render the latter optimally effective. It is estimated that, of money spent through government programs toward categorical disease entities, 1-280 Seattle, Washington April 12, 1976 approximately 6 percent goes to research. In the area of rehabilitation for all categorical disease entities, the amount going to research is estimated to be a fraction of a percentile. If one considers this year's expenditure for research support through the Rehabilitation Services Administration, the major or only source for such research support, the total amount budgeted for research and demonstration is $24 million. Next year's budget proposal is $18 million. This compares with funding of categorical disease research through the National Institutes of Health, where, in most cases, it is on the order of $100 million per year (in the case of cancer an even greater amount); yet rehabilitation dollars have to cover all categorical diseases, including arthritis. At a national meeting of research investigators called to advise the Federal Government (RSA) on research priorities, a resolution was passed which stated: "The attendees at the Denver RSA REE Participatory Planning Conference were pleased to have had the opportunity to assist in the formulation of national rehabilitation research and evaluation strategy. We are impressed with the numbers and magni tude of the problems which impede the rehabilitation process. Although knowledge, evaluation, and service delivery gaps are apparent, it is also clear that many of the tools required to solve identified problems are available. "We are concerned about the substantial gap between our capacity to solve problems and the limited resources which are being provided to conduct activities necessary to improve the quality of life of the severely disabled. We encourage support for legislation and appropriations which will rectify the disparity between rehabilitation need and resources." I therefore respectfully submit that there is an urgent need to markedly increase the research support for arthritis. TESTIMONY OF JUSTUS F. LEHMANN, M.D. LEHMANN: Mr. Chairman, members of the Commission. I'm Justus Lehmann. I'm the Chairman of the Department of Rehabilitation Medicine at the University of Washington. I will address myself only to a few aspects which I think are very important in the area of rehabilitation of the victim of arthritis. As you know, the disease is very common; just naming two categories, rheumatoid arthritis and degenerative joint disease, such as osteoarthritis. You are also very familiar with the problems: that is, rarely is the pathology totally reversible; and we have some, and mostly severe, residual disability. Comprehensive rehabilitation aims at restoration of function, as much as possible in the light of the residual pathology; restoration of physical function; restoration of social, psychological, and vocational functioning as well. 1-281 Seattle, Washington april 12, 1976 The disease has a very severe impact, as you've already heard, not only on the patient, but also on the families. Income is lost because of inability to work. The family has problems; often is forced onto the welfare payrolls. The disease itself is costly, even to maintain the residual functions; and often the patient becomes totally dependent on the help of others. In turn, then, the larger unit, the society, is also burdened by an enormous cost incurred as a result of the devastating effects of these diseases. Now rehabilitation can make a big difference, even though it cannot resolve the pathology as to what the functional outcome may be, if comprehensive rehabilitation is available, if the latest methods, the results from research can be properly utilized. That is not always the case in arthritis. Other disease categories have been studied in this respect, perhaps somewhat better, and even on the basis of cost- effectiveness, which does not consider quality of life, it has been shown that such an approach is very much worthwhile. Presently, the establishment of spinal cord injury centers has been largely based on studies such as those done by Liberty Mutual, insurance carrier, which carried not only the medical costs but also Workmen's Compensation, and they found that the difference in cost to them meant a $50,000 saving per case if the patient was cared for in a specialized center versus in a general type of facility. Similarly, we did a study on stroke patients, and we compared the costs of rehabilitation of a large number of very complicated stroke patients with the reduction in cost saving only in those cases where we succeeded in getting the patients out of the nursing home back into the families. We found that actually there was a saving involved in spite of the cost which involved also those patients who could not be successfully rehabilitated to any great degree. So the model is there, but it is not applied as yet to arthritis. The question of research, specifically, and also research including a health care delivery system, is of great concern, I think, to all of us in rehabilitation because the effectiveness of rehabilitation right now clearly suffers from the lack of research. There's a certain balance between the money spent on research and the care delivery. In most of the categorical diseases--for instance, supported by NIH institutes as far as the research is concerned--about six percent of the expenditures of various government agencies for direct patient care is spent on research. In rehabilitation, this percentage is a fraction of a percent. Or, I can turn around and give you some budget figures. The present Federal budget provides, for all research and demonstration, all categorical disease entities, $24 million nationwide, dispensed through RSA. If you compare that with even the budget of a single NIH institute, you see the enormous discrepancy in a field which goes across all categorical disease entities including arthritis. And, for the next year the Administration requested $18 million, a reduction of about 25 percent. So you can see that really the whole area of rehabilitation of the arthritic patient suffers acutely from maximal under funding in the area of research, which includes research in the health care delivery system. And unless this is changed, I think the most patients will have, as it is at present, is inadequate care in that area. . 1-282 Seattle, Washington April 12, 1976 Now that should not detract from other aspects, which were discussed here before, such as training in many of the areas of the professions involved in rehabilitation--there's a tremendous shortage--and providing the health manpower is equally important. But, as long as we don't have a cure for these disease entities, I think it's important that we make a maximum effort to help the patient to retain or attain as much function physically, socially, psychologically, and vocationally as possible. The models are there, but the funding is out of proportion to the problem, especially in arthritis. Thank you. ENGLEMAN: Thank you, Dr. Lehmann. Any question? Bill? DONALDSON: One of the areas, Dr. Lehmann, that we had great difficulty in identifying types of projects in which research might be pursued was in the area of rehabilitation; in other words, coming up with specific examples of research efforts as related to arthritis. It would be a great help to us if you could identify types of very specific projects that might be taken under the research effort. LEHMANN: Well, number one, I think the reason why you have difficulties is related directly to the present state of funding. As far as specific projects are concerned, I think we need, as was said before for drug therapy, better evaluation of what we are doing, the effectiveness--eliminate those things which are not that effective, and improve methods of treatment which seem to be effective; and, as a matter of fact, prove it beyond any doubt, and that includes all areas, like physical therapy modalities, as well as, for instance, emotional- phychological functioning. I think the testimony was very vivid and very descriptive of those persons who themselves suffered from arthritis. Especially, I think, in general terms, it would be very important to develop quantifiable, if not quantitative, measures so that these then can be used to assess the effectiveness of a given approach, a given modality. And last, I think, coming back to the center approach, it would be important to reorganize and do some research as to how reorganization of the health care delivery in this area should be. All these areas, and I could enumerate more, need research underpinning badly. It's a fairly sad state of the affairs. ENGLEMAN: Thank you very much, Dr. Lehmann, Dr. Anderson, and Mrs. Ridgeway. We'll proceed now, and ask the following to come forward: Esther Barber, Carla Matthews, and Dr. Wilske. May we hear from Esther Barber? 1-283 Seattle, Washington April 12, 1976 TESTIMONY OF ESTHER L. BARBER SLE PATIENT BARBER: Mr. Chairman, and members of the Committee. My name is Esther Barber, age 47, married, no children. I have systemic lupus erythematosus, thankfully referred to as SLE. It was diagnosed in February of 1966, at the time I was living in Sitka, Alaska, and had come to a private hospital in Seattle as I was so desperately ill. On the eighth day of my hospitalization my doctor, who is now a retired osteopathic physician and surgeon, came to my room and told me what I had, based on their diagnostic findings, and requested that I sign papers for my transfer to the University of Washington Hospital; his reasons being the newness in diagnosis and treatment and the access they have to the latest research, drug therapy, and the specialization. He had been our family physician for over 15 years, and although I hated to leave, I knew I'd better. At that time he had told me to be thankful that SLE was diagnosed in 1966 and NOT 3 years before as treatment and care was being developed now that diagnostic means had been improved, where previously so little was known. I have been an outpatient in the rheumatology department clinic since my release in March, 1966. I now live at Neah Bay, Washington, on the Olympic Peninsula. I travel 300 miles roundtrip for each clinic visit but would have it no other way. There are no rheumatologists on the peninsula. The physicians, through careful followup and our patient-physician relationship, have been able to keep the disease under control with a minimum of flareups. I am on a corticosteroid regimen. I have taken immunosuppressants, aziothiaprine, commonly known as Imuran, and Chlorambucil. The first I took for over a year, and the purpose--tapering or lowering steroid without adverse effect--wasn't accomplished and it was discontinued. Approximately 6 months later I started taking Chlorambucil for about 1 year. This was more successful. I presently take less steroid than I have for years. There are still many, many unknowns in SLE, and the answers can only be accomplished through research. Questions as to the assault to the DNA binding: Which antibody or antibodies do the attacking? Why do the antibodies assault one's own tissues? Use of immunosuppressants has helped, but the side effects and disadvantage of suppressing the entire immune system leaving a patient vulnerable to all sorts of infection. Corticosteroid treatment over many years is also undesirable due to the many adverse side effects. I know that NO drug a human takes does not have a side effect, but perhaps with the research of dedicated rheumatologists, isolation of the causative factor or factors will also lead to safer and better treatment. It is one thing each one who has SLE hopes for. It is through and with this hope that we keep going, trying to live a life as normally as possible. Thank you. ENGLEMAN: Thank you, Mrs. Barber. Carla? 1-284 Seattle, Washington April 12, 1976 TESTIMONY OF CARLA MATTHEWS SLE PATIENT MATTHEWS: On May 11, 1975, I had a very bad nosebleed and fainted. Medic-I took me to the hospital. The doctor tested my blood and found out that TI did not have platelets in my blood to make it clot. For about the next 2 weeks I went to the hospital clinic every day for lab and other tests. After that, the doctor told me and my mother that I had systemic lupus. I started going to the arthritis clinic twice a month for treatment and blood tests. The doctor told me that my illness is not hereditary or contagious. I had to go into the hospital in December for a kidney biopsy. Three days after being home, I had to go back because of complications. I am taking a drug called Prednisone. I feel fine while taking the medicine, but it makes me gain weight so I have to watch what I eat. The doctors told me that my illness could be very serious, but I thank God that so far it has been kept under control. I don't know too much about how much money it takes for my illness, but my mom said that our insurance pays for a small amount of my lab tests, which are a big part of my treatment, so that leaves a large part for my dad to pay. The doctors and the nurses at the arthritis clinic are great. ENGLEMAN: Thank you, Carla. Dr. Wilske? TESTIMONY OF KENNETH R. WILSKE, M.D. HEAD SECTION OF ALLERGY, IMMUNOLOGY, AND RHEUMATIC DISEASES THE MASON CLINIC WILSKE: Thank you, Mr. Chairman, and members of the Commission. My name is Kenneth Wilske. I am a practicing physician in Seattle at The Mason Clinic,- specializing in rheumatology. I'm on the clinical faculty at the University of Washington. I would like to address my remarks to systemic lupus erythematosus (SLE) « This rheumatic disease assumes great importance not only because it afflicts approximately one-half million Americans, but in addition serves as a prototype for an increasingly recognized number of "immune- complex diseases" in which antibody and antigen combinations immunologically set up inflammatory reactions in blood vessels throughout the body and affect many vitally important tissues, such as kidneys, lungs, hearts, and brain. As such, SLE may be a killer as compared to the crippling effects of rheumatoid arthritis. In some of the "immune-complex diseases" the offending agent has been identified as a virus or a druag. In SLE the offending agent has as yet not been recognized and, as such, prevention is not possible. Research efforts to date, however, have elucidated many of the pathologic mechanisms which lead to tissue damage and death. With this knowledge, our therapy has been directed to date to interfering with these pathologic reactions in an effort to control and arrest the inflammatory processes. While these medicines may favorably influence the course of 1-285 Seattle, Washington April 12, 1976 SLE, unfortunately, even with the most successful drugs, there are many significant side effects. To meet current needs additional funds are of vital importance in the immediate term to discover new therapeutic drugs and modalities, not only to further improve treatment of SLE, but also to reduce the untoward side- effects of current drugs. In the longer term, further elucidation of the pathologic mechanisms will allow more specific and less toxic therapy; and the discovery of the cause of SLE will allow its prevention. To achieve these goals, funds are of utmost importance, not only to educate current medical personnel in new advances in the field and provide sufficient resources to develop new research capabilities to achieve the ultimate goal of a cure for SLE new advances in the field and provide sufficient manpower to treat and educate patients with SLE, but to make available resources to develop new research capabilities to achieve the ultimate goal of a cure for SLE, which stands as the tip of the iceberg for the whole family of "immune-complex diseases," from which countless numbers of people would benefit. ENGLEMAN: Any question? ANTHROP: Dr. Engleman? ANTRHOP: Dr. Wilske, would you recommend the swine flu shots for rheumatoid arthritics? WILSKE: I think this is a very good one and a somewhat difficult one to answer. We were discussing this at a meeting last week in Spokane in which we had a symposium on rheumatic diseases. I think, on the one hand, whenever one introduces something such as a vaccine, you have the potential of aggravating an allergic reaction; on the other hand, I think many people felt that the flareup of a flu disease superimposed on lupus perhaps would cause more difficulty than a theoretical reaction as far as the lupus itself; and that if a patient were ill and would suffer significantly from an additional disease, that the vaccine would probably be indicated. ENGLEMAN: Any other question? (No response.) I didn't get your age, Carla. MATTHEWS: I'm 12. ENGLEMAN: Fine. Do you live here in Seattle? MATTHEWS: Yes. ENGLEMAN: Good. So you don't have too far to go, then, to the clinic, do you? MATTHEWS: No. ENGLEMAN: Good. Okay. Thank you very much. 1-286 Seattle, Washington April 12, 1976 We'll proceed now, and ask the following to come forward: Gayle Smith, Kent Morrill, Dr. Skeith, and Dr. Mannik. Ms. Smith? TESTIMONY OF GAYLE GREEN SMITH, O.T.R. PRESIDENT WASHINGTON OCCUPATIONAL THERAPY ASSOCIATION SMITH: Mr. Chairman, members of the Commission. My name is Gavle Green Smith, and I'm an occupational therapist at the Mason Clinic here in Seattle. I'm also President of the Washington Occupational Therapy Association. Arthritis treatment should be aimed at early intervention and prevention. There needs to be consistent, reliable information provided to the client on a periodic basis. This information should include methods to prevent stress on joints, energy saving concepts, work simplification, emphasis of rest, preventional exercise regime, and a thorough understanding of the basics of their disease process. I realize this type of a program is costly but if accomplished in the early stage of the disease one can hopefully help the client prevent deformities and modify his lifestyle to encompass the disease. This program of client education can be presented by all the team members-- occupational therapy, physical therapy, physicians, nursing, psychology, social service, etc.--to enable the client to have a better understanding of his disease. The cost of surgeries, hospitalizations, etc., hopefully can be cut down by preventative techniques and increased client awareness. Many times I have treated clients with arthritis who are quite disabled and have wished for a time machine to take us both back to when they originally manifested symptoms. In summary, occupational therapists and other health professionals feel that seeing arthritis clients early in the course of their disease is preferable. Optimally, involvement in a program of education and prevention is of more benefit to the client than treating deformities at a later stage. Thank you. ENGLEMAN: Thank you, Ms. Smith. Mr. Morrill? 1-287 Seattle, Washington April 12, 1976 TESTIMONY OF KENT W. MORRILL DIRECTOR OF ATHLETICS KING COUNTY DIVISION OF PARKS MORRILL: Thank vou. Mr. Chairman, members of the Commission. I'd like to present my feelings on the lack of recreation for the arthritic patient. ENGLEMAN: Would you tell us your affiliation and your name? MORRILL: Yes, sir. I'm Director of Athletics for the King County Park and Recreation Department. I'm also a patient of Dr. Wilske's with rheumatoid arthritis. Today in our swiftly moving society it is extremely difficult for the average individual to pursue outside interests of stimulating effervescence. If you are to multiply the normal difficulty with detrimental disorders, such as arthritis, the pursuant becomes a non- participant in extracurricular activities. Recreation is a must for the psychological enrichment derived by participating in a nonmandatory activity for one reason: self-satisfaction. From my observations, the void of self-satisfaction is one of the most disturbing factors surrounding the arthritic patient. I, therefore, strongly recommend that a study be conducted encompassing the productive utilization of leisure time by individuals afflicted with arthritis. Areas of Concern: (1) Lack of encouragement by physicians who treat only the physical conditions of the disease. (2) Clarification of activities by degree of affliction encompassing each area of recreation; i.e., outdoor activities, athletics, games, music, visual arts, performing arts, aquatics, social, hobbies, etc. (3) The importance of exercise for the arthritic patients is a must; however, new methods of building old muscles need to be pursued. In closing, may I submit: Arthritis is a disoruer of the ego, as well as a disease of the body. ENGLEMAN: Thank you. Dr. Skeith? 1-288 Seattle, Washington April 12, 1976 TESTIMONY OF MAURICE D. SKEITH, M.D. RHEUMATOLOGIST SKEITH: Mr. Chairman, members of the Commission. My name is Maurice Skeith. I'm a physician in the private- practice of rheumatology in Seattle. Osteoarthritis is the most prevalent of all arthritides.. To many, physician and layman alike, it is the least threatening, considered to be an expected result of aging. It has not captured the imagination and enthusiasm of rheumatologists, and research on its causes and treatment is less intense. Effective treatment, for the most part, does not exist. Training of physicians and education of the public about this disease is often desultory. Only the manufacturers of the over-the-counter analgesic nostrums seem to appreciate the magnitude and importance of osteoarthritis, as evidenced by the barrage of television commercials for their products. Literally millions of people have this disease, however, and for many it is a source of pain, and for some a cause of significant disability. I believe that progress in the treatment of osteoarthritis is hampered by two things, both of which I hope this Commission will move to correct. The first is the lack of understanding we have about the causes of the problem. I hope that research in this area will be funded generously enough that more gifted investigators will be attracted to the study of this disease. I believe that laboratory research aimed at explaining the biochemical changes known to take place in osteoarthritic articular cartilage is essential if effective pharmacologic agents capable of preventing or reversing this deterioration are ever to be develop=d. I also think that intensive clinical research to identify "risk" factors, similar to the "risk" factors leading to coronary artery disease, is necessary if the practicing physician is to be able to advise patients on the prevention of this problem. Finally, since I am pessimistic about our ability to discover new forms of pharmacologic treatment without new knowledge about cartilage metabolism, I feel that more intense research into the application of present techniques, especially in physical medicine, is needed. Secondly, I believe that patients with osteoarthritis could better be served by education, both of physicians and the public. Means currently exist to alleviate some of the symptoms and disability of osteoarthritis, but they are not always applied by the patient's physician. Imperfect understanding of the disease, the pharmacology of drugs used in therapy, the use of physiotherapy, and the timing of reconstructive surgery all lead to real or potential problems of unnecessary pain or disability or complications of treatment. I believe that innovative approaches to professional education are needed to remedy this. Patients, too, need more information. In fact, they usually avidly seek it, but often are unable to adequately evaluate the validity of what they read or hear. The currently popular trend to '"health" foods for treatment of arthritis is ample testimony to this. To this, one could 1-289 Seattle, Washington April 12, 1976 also add the willingness of patients to believe sensational news accounts about new treatments for arthritis. In Seattle I hope funds are made available for education, not only for osteoarthritis, but for all types of arthritis. I can envisage this being done in several ways: a newsletter for arthritis patients; television spots to counteract the advertising; development of classes where patients could learn about their illness (similar to classes for diabetics); or the production of audio tapes where patients could hear a programmed course about their illness. The final need that I see in Seattle is a patient service which I feel is not available to great enough numbers of patients: greater availability of physiotherapy. Physiotherapy for disabled persons often makes the difference between maintaining independence and not. For some, this service must be available in their home; for others, who can come to a physiotherapy center, funding and innovative approaches to therapy (such as group physiotherapy) should be made available. Thank you. ENGLEMAN: Thank you, Dr. Skeith. Dr. Mannik. TESTIMONY OF MART MANNIK, M.D. PROFESSOR OF MEDICINE HEAD, DIVISION OF RHEUMATOLOGY UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE MANNIK: Mr. Chairman, members of the Commission. I'm Mart Mannik, Professor of Medicine, and Head, Division of Rheumatology at the University of Washington. The extent of the arthritis problem in this nation has been pointed out many times. The magnitude of economic loss due to arthritis has been expressed. The human suffering by persons afflicted with these diseases and the hardships caused to families of the affected individuals has been demonstrated during the hearings of this Commission. The pain, discomfort, suffering, and hardships caused by these diseases cannot be expressed in quantitative and analytical terms. A correct diagnosis and proper treatment can help many patients with arthritis. However, too often the best available treatments do not suffice to halt the progression of many forms of arthritis, the economic loss due to these diseases cannot be avoided, and the suffering by many individuals cannot be alleviated or prevented. These failures result from the lack of knowledge of the cause of many forms of arthritis. The hopes of those who will be afflicted with arthritis in the future and the hopes of those who have these disorders now lie in research, development and dissemination of new knowledge. The federal support of research in arthritis has not been in vain. The diagnosis and treatment of many forms of arthritis have improved and new promising leads are available. For the benefit of the current and future generations of those with arthritis, a major increase should be made in arthritis research. 1-290 Seattle, Washington April 12, 1976 The expanded research on arthritis should be directed to improving diagnosis of these diseases. Better methods are needed to predict the outcome of diseases and their response to therapy so that time would not be lost by ineffective treatment. The search for more effective druas should be intensified. Knowledge on the mechanisms of action of currently available drugs and understanding of the disease processes will assist in the design of drugs that can suppress or prevent the progression of joint damage and disability. The success in replacement of selected damaged joints points to the need for design of artificial joints that are not yet available. The methods of physical, social, and economic rehabilitation of patients afflicted with arthritis should be improved. As new knowledge is gained for the treatment of patients with arthritis, this information must be disseminated to those who deliver health care throughout the country by proper education of students and by continued education of practitioners at all levels of expertise. The ultimate objective of the increased arthritis research should be the identification of the cause and the development of prevention and cure for rheumatoid arthritis, osteoarthritis, systemic lupus erythematosus, and related disorders. This should be achieved through expanded research on the existing leads of immunological mechanisms in rheumatoid arthritis and systemic lupus erythematosus, and by intensive search for the suspected microbial etiology of these disorders. The basic research in the relevant areas of immunology, inflammation, genetics, and microbiology, should be expanded to fill the gaps of existing knowledge and technology. The basic knowledge of structure and function of cartilage, synovial membrane and connective tissue should be extended, and epidemiologic studies of trauma, anomalies of joint structure, and other factors should be conducted to elucidate the causes of osteoarthritis. When the cause, prevention, and cure of these forms of arthritis are known, then the suffering and economic loss due to these arthritides can be avoided. To achieve these objectives the researchers in arthritis should be provided increased financial support, and more researchers must be trained and supported. In Seattle, as well as throughout the country, researchers in arthritis are not adequately funded. Capabilities for training of new researchers exist here and in other parts of the country. Thus, the research in arthritis can be increased and more manpower can be trained when adequate funding is provided. Thank you. ENGLEMAN: Thank you, Dr. Mannik. Any questions from members of the Commission? MELICH: Dr. Engleman? ENGLEMAN: Yes, Ms. Melich. MELICH: I would 1like to ask Mr. Morrill about the awareness of arthritis among coaches of Little League teams and athletic personnel in general. Do you think there is an awareness of it that would be enough to let them get into it a little deeper than they are right now? 1-291 Seattle, Washington April 12, 1976 MORRILL: At the present time I feel that most of our Little League coaches actually have not enough background to evaluate whether or not an individual is afflicted with any type of disease unless the parent discusses that with the coach. Then, again, he is not at the point to advise whether a child can take and participate in that sport at all. It's up to the parent, and he is actually aware of whether or not his child is physically capable of participating in that sport. Does that answer your question? MELICH: I was taking the whole group of athletics not Just Little League. I meant high school and college athletics as well as professional. Do you think that people that are involved in these particular programs know that certain types of injuries may lead to arthritis? MORRILL: I think in your school programs, yes, because we do have our medicine institutes for athletic injuries, and it's very well covered in that. As far, again, as your extracurricular leagues under your national organizations that use laymen coaches, I would say no. ENGLEMAN: Any other question? (No response.) We've been impressed by some of the information we've been given on the remarkable incidence of arthritis that follows athletic injuries, which has nothing to do with what you have told us but is of great interest to the members of the Commission. Thank you very much. We'll now ask the following to step forward, please: Joanne Ryseff, Beverly Humphreys, J.C. Squires, Grace Shiner, and Bernice Cudhie. I must remind each of you that your testimony is to be limited to 5 minutes, and we will ask you to please identify yourselves. May we call on Joanne Ryseff. TESTIMONY OF JOANNE RYSEFF CLINICAL DIETETIC STUDENT UNIVERSITY OF WASHINGTON RYSEFF: My name is Joanne Ryseff, and I'm a senior dietetic student in clnical and therapeutic dietetics at the University of Washington. I'd like to thank you for hearing my testimony toaday because I feel it is an area which might have been overlooked. I would like to discuss the needs of persons with rheumatoid disease in relation to nutrition education. In my clinical dietetic training I requested to dedicate some of my training hours to work with patients at the arthritis clinic at Harborview Medical Center in Seattle, Washington. I had visited the clinic and suspected that there might be a need for nutritional services. I felt that it also might offer me some valuable clinical experiences. The number of patients desiring nutritional guidance was overwhelming, but I was unable to help very many of them during the short time I was there. Because of the requirements of my program I had to leave the clinic and move to other facilities to encounter new experiences. There is now no one there to take my place and 1-292 Seattle, Washington April 12, 1976 I have a nagging, unhappy feeling about the unmet nutritional needs of these people with rheumatoid diseases. The special nutritional problems that often occur with chronic debilitating disease include obesity, undernutrition, and misinformation. Overnutrition (obesity) can occur from causes common to all patient populations but can be more prevalent in these patients because of the following factors: (1) Decreasing physical activity due to progressive disease. Obesity itself then further hinders the patient's mobility and if the problem is not dealt with can result in a vicious cycle, each problem promoting the other. (2) The inability of some of the disabled persons to prepare appropriate foods. The patient who finds it tiring or painful to prepare meals will often substitute snack foods or, at best, convenience foods which can supply them with a level of calories inappropriate for their energy expenditure. (3) Limited incomes of the severely handicapped often lead to diets high in carbohydrates and calories. By placing an extra burden on diseased joints, obesity can in time cause or hasten the need for expensive surgery. At the same time their obesity makes these patients higher surgical risks. Of course, obesity may promote development of other diseases as well: heart disease, diabetes, etc. Undernutrition is also promoted by disability and low income levels. Some people respond to decreasing mobility and to pain by a decrease in appetite. Especially the elderly tend to lose interest in food and fall into the "tea-and-toast" syndrome. Pain and fatique may hinder them from preparing and eating adequately. Their diets may be inadequate in few or in many nutrients. Certainly, malnutrition should be dealt with as it can be an important contributing factor in serious disease. It would be helpful if a dietitian could be a part of the clinic team as the nutritional needs of these patients require long term therapy, education, and followup. The clinical dietitian would monitor the nutritional status of all of the clinic patients and identify and work with those with nutritional problems. The clinical dietitian could make home visits for the care of the severely handicapped and to help patients whose environments offer handicaps to good nutrition. For example, the dietitian could help the patient develop recipes and methods of preparation that are within their physical and economic limitations. People who suffer chronic debilitating diseases often fall prey to profit-seeking propagandists who propose "natural cures through nutrition." How these people can do harm is demonstrated by the patient that I talked to who was given a diet deficient in most nutrients (according to the recommended dietary allowances) and encouraged to discontinue taking the drugs her physician was prescribing. I feel that, if nutrition counseling were available in the clinic, the patients would 1-293 Seattle, Washington April 12, 1976 be less likely to seek help from these outside sources and/or fall for false advertising claims. I am hoping that the Arthritis Commission will appropriate funds for the use of providing qualified health professionals trained in clinical dietetics to these people who severely need them. There are still too few private practicing registered dietitians to handle the load; and even if there were enough, it would be difficult for the disabled or the elderly to use their services because they are not yet covered by Medicaid. ENGLEMAN: Thank you, Joanne. Beverly Humphreys? TESTIMONY OF BEVERLY HUMPHREYS RA PATIENT HUMPHREYS: My name is Beverly Humphreys. I am 48 years of age, and I have had severe rheumatoid arthritis for 23 years. I have three special reasons why I am writing this testimony to you today: (1) In 1961 my arthritis became so severe that after spending $9,000 over an 8-year period on medical treatment I was hospitalized for 10 1/2 months. Consequently, I lost my job and my career as a professional Girl Scout worker. For the past 15 years since then I have been unable to work but have been provided living expenses first by the Washington State Public Assistance Program and then by the Social Security Disability Insurance Program. During this period of time I have had nine different orthopedic surgeries which have cost the Federal and state governments approximately $65,000. They have also provided me with approximately $30,000 for living expenses. I figure, with the increase in wages, I have lost over the years about $100,000 in wages. I point this out to you to show just how costly one disease can be for one person. The government and I together have lost nearly $200,000; whereas, if I had been well, think of the taxes I may have had to pay. I'd much rather have paid the taxes. When you consider that, according to the Arthritis Foundation, over 5 million people alone have rheumatoid arthritis, which is the most crippling form of arthritis, and over 45 million more people have other forms of arthritis, a lot of money is being lost on sick leave, medical expenses, and in some cases permanent disability because no cure has yet been found. I believe the government would be astounded at the taxes lost if they took the time to study the whole picture. They'll find more people have some form of arthritis in the United States than any other disease, according to the Arthritis Foundation. (2) I was lucky. I became a pauper. When I had a little over $3.00 left in my pocket, I went on Public Assistance and later Social Security Disability. Many doctors fought hard to get medical grants for my surgeries, for which I am most grateful. I can still walk, although limitedly, and I can live alone, "doing my own thing," with only the aid of a part-time housekeeper. Yes, I 1-294 Seattle, Washington April 12, 1976 was blessed, and I thank my government; but why do we have to become paupers before our government helps us? Why can't governmental medical aid be given to those in need? Most people can earn living expenses but medical expenses added on breaks them. Who is going to pay $65,000 for their surgery? No one. So they go without medical care, and thus their arthritic condition worsens, If only they could have had some help, the arthritic damage may have been minimal, if at all. I would 1like to see some kind of medical assistance given those people who can't afford it, thus saving their health, their bodies, their families, and their jobs. Helping them to be able to continue to contribute their work and their taxes to our society is much better than letting them end up completely consumed by a dreadful disease at an early age. (3) So some of us are permanently damaged and unable to work; that doesn't mean we have to climb into bed and stay there. There's lots we can do if given the right equipment and help to do so. I use several adaptive aids or tools which help me to dress myself, cook my meals, do my dishes, make by bed, etc. But I needed help to do those things. Thanks to very fine physical and occupational therapists I am able to remain semi-independent. However, there are not enough of these professional people. More Federal grants are needed for continual inservice programs for all professional medical people who work with arthritics. Whenever I am admitted to a hospital I am always appalled at the number of medical people, especially doctors and nurses, who do not know what my kit of adaptive aids or tools are for. I've even had one ask me, "What is this junk for?" I always take some of my tools with me so I can continue to do some things for myself. I really feel that the whole area of adaptive aids, their construction, and their uses, need more thrust by the Arthritis Foundation as well as the United States Government funding programs And, one last thought. I would like to see reinstated at the University of Washington the graduate level of physical and occupational. therapy, which, due to government funds, has been withdrawn for the last several years. There is one graduate program for those interested in physical therapy who were not physical therapy undergraduates. It's the undergraduates that are crying for help, and this program doesn't help them. I think this is one area which would really reach down to the patients a great deal. Thank you. ENGLEMAN: Thank you, Ms. Humphreys. J. C. Squires? 1-295 Seattle, Washington April 12, 1976 TESTIMONY OF JAMES C. SQUIRES RA PATIENT SQUIRES: My name is Jim Squires, and I was formerly associated with a Florida hospital in Orlando, Florida, and my principal field has been in cancer research. But I have found more and more that every time I look at cancer, the thing seems to back up and we wind up into nutrition someplace, and that's what I'd like to discuss this morning for a few minutes. I've been to a number of meetings such as this, and different types of groups have gotten together, and at one I was at a little while ago a doctor was speaking about the fact that he had been to a number of health food stores and he hadn't seen anybody that looked too healthy to him. A fellow in the fourth row stood up and said, "Yeah, but you should have seen him before he went to the health food store." The fact remains that this thing about nutrition is very little understood by many physicians, and it should be the overlook of this group to take some sort of action about it. I appreciate the opportunity to address this convention, and I certainly appreciate the views of those who have testified and will testify and can concur with the eclectic approach of all those who will consider the views. Some of the people this morning have indicated that they really don't know what's happening, or they're not too sure about it, and that seems to be the overall fact that has been stated here this morning. TI am here to state that only those who have experienced the pain and torment of this affliction we call arthritis can truly testify to the urgency of salvation. Only those who have spent weeks, months, or years in bed, or sitting, or standing, and trying 24 hours a day to get some relief for a knee or wrist or ankle or toe or finger can comprehend the hell on earth that they suffer. It is time for the medical profession to consider the eclectic approach to solving the problem. One of the keystones in the arch to ultimate success appears to be adequate nutrition. If pushed, I can supply the names, addresses, and in most cases the telephone numbers of more than 500 licensed, living U.S. medical practitioners who agree. I feel the 300,000 who do not agree, and the 10 to 12,000 who do not feel they have adequate information to take a stand, should not be permitted to further jeopardize the immediate relief to hundreds of thousands of arthritic sufferers. This committee should know that more than half, if not all, of the seriously afflicted contemplate suicide, and that only the affliction prevents most from committing the act. This commission should also be aware that the technology to cure, not only alleviate, the disease exists today, and with substances presently permitted by the FDA. The only reason the medical profession has thus far failed to have resounding success with the nutritional approach is that after establishing a good nutritional program, they fail to persevere to find the one final 1-296 Seattle, Washington April 12, 1976 combination of nutrients that turns the trick and unlocks the gate to permit complete relief from the affliction. I ask this commission in the name of God, or any other name it wishes, to consider this plea I make in behalf of as yet unenlightened arthritis sufferers. Thank you. ENGLEMAN: Thank you, Mr. Squires. Whom do we have here? Grace Shiner? CUDHIE: No. Bernice Cudhie. ENGLEMAN: Fine. Thank you. TESTIMONY OF BERNICE E. CUDHIE OA PATIENT CUDHIE: Up until right now, Dr. Simkin was the only one who has even mentioned diet. I welcomed that when I heard it, and I've been very glad to hear this. Here's my testimony. In 1958 I developed osteoarthritis in both shoulders. It was so bad in my right shoulder I was off work and taking eight aspirin a day. Then I heard about a diet to control arthritis. There certainly wasn't anything about it which could harm me, so I followed it carefully. In 3 or 4 weeks my shoulder was easing, and by 6 weeks the pain was gone and I was limbered up. No more aspirin were needed. Ever since, I have followed that diet, and have kept the arthritis controlled. I know it really works because every time I am away on a trip of three to four weeks--and it is difficult to follow the diet while eating out--the aches, pains, and stiffness return. By the time I have been home a week or 10 days, I am fine again. I can give a number of definite examples of bad reactions when I did not stick to the diet. Why do doctors insist on just giving pain-killers and allow patients to suffer more and more? Diet makes such good sense, and it is so logical that food can make the difference. It really works. Thank you. ENGLEMAN: Thank you, Ms. Cudhie. Won't you tell us what this magic diet is? CUDHIE: Well, it's the book written by Dale Alexander. I expect you to laugh or grunt now. He has you avoid acids, sweets, not drink water, or anything made of water, like coffee or tea, with your meal--have it at least 10 minutes ahead of time--so that your digestive juices have a chance to work on your foods and are not washed down by water. He does advocate the use of cod liver oil. I started with that, and then let up on it gradually. I still take a teaspoon about once a week. Also, animal fats, like butter and milk. 1-297 Seattle, Washington April 12, 1976 The most outstanding times that I had an example of when I get off the diet was #4 or 5 years ago, when we were hearing so much about cholesterol. I got to thinking, "Well, gee. Maybe I should be taking 2 percent milk and margarine instead of butter and regular homogenized milk," so I started using those. Well, I can't tell you the exact timing on it--it would be perhaps 3 to 6 weeks, something like that--oh, my shoulder was getting bad and I couldn't figure out why. It went down into my elbow, down into my wrist and into my fingers. The worst I had ever had. Very bad. "What on earth am I doing?" I sat down to read this book again. I came to the place where he says, "Do not use margarines or skim milk or 2 percent. Use your animal fats, your butter, and your regular milk." When I read that I said, "That's what it is." So I went back to it. Within, say, a week to 10 days--certainly within two weeks--I was getting back to normal again. It cleared up. The only time I have any difficulty is, as I mentioned here, if I'm away on a trip for 3 or 4 weeks. By the time I get home I'm getting pretty achy and stiff; and then it'll ease up. Then, last summer, during the hot weather, I was eating quite a bit of ice cream, and this hand got bad. I stopped eating the ice cream. It cleared up. ENGLEMAN: You're not going to be very popular with the ice cream manufacturers. CUDHIE: Well, I can't help it. It keeps away the aches and pains. And I'm so firmly convinced that it does make the difference, and I don't eat sweets. But, when I go out--if I'm invited out or eat out--I just eat like other people do. As Alexander says, after you once get on that routine and follow it at home, it's not going to kill you to break your routine occasionally, and I do that. But I stick to it real well at home, and I believe in it firmly. Thank you. ENGLEMAN: Thank you very much, Ms. Cudhie. Any question from members of the--we have a nutritional expert on this Commission. I'm looking right at him. CUDHIE: May I add that I'll be very happy to cooperate in any way I can if anybody wants to know more about it. ENGLEMAN: No comment, Dr. Whedon? We have a nutritionist there among our witnesses. Do you have any comments? RYSEFF: I've heard testimony from a lot of people with arthritis and SLE, and I know when I first went on this very special diet from the naturopath my symptoms were relieved at first because during that time I was suffering from renal problems. It was a very low sodium diet, and it eased the swelling, the pain, this type of thing swelling, the pain, this type of thing. I think a lot of research needs to be done. I think perhaps individual foods might stimulate an immunological reaction in these people that might trigger their disease. I think it would be very individual and that no diet could be made up that could be handed out to individual persons. I think this is an area that needs to be researched. ENGLEMAN: Thank you, Joanne, and thank all of you witnesses. 1-298 Seattle, Washington April 12, 1976 We'll now call on Dr. Robert Petersdorf. That's a tough act to follow. TESTIMONY OF ROBERT G. PETERSDORF, M.D. PROFESSOR AND CHAIRMAN DEPARTMENT OF MEDICINE UNIVERSITY OF WASHINGTON PETERSDORF: My name is Robert G. Petersdorf. I am Professor and Chairman of the Department of Medicine at the University of Washington. In this capacity I am responsible for the teaching of internal medicine and its subspecialties to 150-175 medical students per year; for the training of nearly 100 interns and residents; for the 120 postdoctoral fellows, and for the administration of a number of postgraduate courses. I have had a particular interest in health manpower, and the issues of primary care as they pertain to internal medicine. At the same time, I head a department with a research budget in excess of $10 million. iT would ask your permission to address both issues: the educational and research needs in the rheumatic diseases. As has been expressed to the Commission many times, the magnitude of the arthritis problem in this nation requires that a sufficient number of physicians and other health care professionals be available to deliver the care available at present, as well as the improved care that can be expected from continued research and development. Due to the large number of people with arthritis, it is not feasible that only the specialists in arthritis, i.e., rheumatologists, should be responsible for the diagnosis and treatment of patients with arthritis. Primary care physicians, including family practitioners, general internists, general pediatricians, and orthopedic surgeons, should be experienced in the diagnosis and management of patients with arthritis. Unfortunately, many physicians in the aforementioned categories are not adequately prepared to deliver primary care to the patients with arthritis. In the 1974-75 academic year, 40 medical schools had no faculty or inadequate faculty (one full-time faculty member) in the field of arthritis. At these institutions, the medical students probably have had inadequate training in arthritis. The interns and residents in internal medicine and family practice, the residents in orthopedic surgery, and the trainees in rehabilitation medicine, physical therapy, and occupational therapy at the hospitals associated with these medical schools probably also have had inadequate training and experience in rheumatic diseases. Furthermore, the continuing education programs for primary care physicians at these institutions cannot offer adequate refresher courses in the diagnosis and treatment of rheumatic diseases. These data warrant the conclusions that as a significant number of new primary care physicians enter the health care system, many will do so ill-prepared to take care of patients with arthritis. Furthermore, because of lack of adequate training in the first place, or because of failure to be exposed to excellent continuing medical education in arthritis, a signficant number of primary care physicians now in practice are inadequately prepared for care of these patients. 1-299 Seattle, Washington April 12, 1976 In order to provide optimal care to the largest number of patients with rheumatic diseases most effectively, primary care physicians and allied health professionals must be prepared to take care of the common, uncomplicated illnesses in the field. For this purpose adequate academic manpower must be provided. All medical schools and their teaching hospitals should have faculty dedicated to this purpose. This body of faculty should engage in appropriate undergraduate, graduate, and continuing education of rheumatic diseases. In order to «carry out the appropriate teaching of medical students, interns, residents, and allied health professionals, and to conduct continuing education, a minimum of two full-time faculty members should be available to staff each medical school and its affiliated hospitals. This number is a minimum because the educational commitments would leave little time for research and other academic pursuits. Ideally, the number should be largely commensurate with the institution's commitment to research. In addition to providing education for future and existing primary care physicians, the education of specialists in rheumatic diseases in internal medicine, pediatrics, orthopedic surgery, and rehabilitation medicine, must continue to provide the specialists to care for the patients who require expertise beyond that of primary care physicians. A continued need for such specialists in this field exists in many parts of this country. Although progress has been made in the understanding of several forms of arthritis, much remains to be learned before prevention and cure of these disorders become available. In order to mount a sufficiently increased attack against the common forms of joint diseases, the manpower for basic and clinical research may need to be increased. In order to meet the educational, research, and patient care needs in all aspects of rheumatic diseases, the following should be implemented: (1) Support should be increased for postdoctoral training programs of academicians in rheumatic diseases, including rheumatologists, orthopedic surgeons, and physiatrists, to fill existing manpower needs. Such support should include stipends for trainees, as well as appropriate support of faculty engaged in such training. (2) Career development type awards should be provided for individuals who have shown talent for teaching and research, and who have a commitment to research and teaching in rheumatic disease. (3) The training of primary care physicians or specialists for practice of rheumatology and related disciplines should not be supported with Federal funds. (4) The needs for academic manpower, as well as the need for subspecialists who spend the majority of their time in the practice of rheumatic diseases should be carefully established. Thank you. 1-300 Seattle, Washington April 12, 1976 ENGLEMAN : Thank you, Dr. Petersdorf. I understood you to say that vou did not feel that Federal funds should be made available for the training of primary physicians. Is that correct? PETERSDORF : Well, I think not in the context of the field of rheumatology. There are, of course, needs for residency stipends in the primary care specialties, but I think that's an issue that's a little bit divorced from this general topic. If one looks at the recent matching plan, the plan that has just been concluded, it is clear that there are not as many training slots for individuals wanting to go into general internal medicine, family practice, and general pediatrics. In order to provide the ever increasing number of graduates of American medical schools with appropriate training opportunities, some more slots may have to be created. Now, where the money for that is going to come from is a moot question. It's difficult to think that the hospitals are going to supply any more than they are already supplying. So that what I've said, really, is that in the context of this testimony, I would say not specifically for rheumatic diseases. In the context of the need for primary care physicians, I think support may very well have to come from the Federal Government. ENGLEMAN: I gather, then, that you mean that these two full-time physicians who you're suggesting at each medical school would not be involved in the teaching of rheumatology of young internists or young orthopedists or young pediatricians? PETERSDORF: Oh, sure. No. That's what I said. ENGLEMAN: I see. But their support would come from where, the support of those two full-time people? PETERSDORF: I think, you know, that the hope is that medical schools will be able to have some support for these people from their own sources. But I think that you know as well as I that the fiscal constraints on our medical schools particularly in this era are extremely severe, and I think many of us have not been able to make do and to build the proper faculties without some sort of Federal support. I think, of the various things that I've suggested, the idea of a career development award type program in the rheumatic diseases, as well as other categorical and occasionally non- categorical specialties, would be important. ENGLEMAN: Yes, Dr. Sharp. SHARP: I wonder what Dr. Petersdorf would think as to why so many institutions have lacked rheumatic disease programs? And, besides training more arthritis specialists who would perhaps staff such programs, how else can programs be encouraged in institutions currently lacking them? PETERSDORF: You know, I think you have certain comparisons, Gordon, between rheumatology and, say, what's happened recently in oncology in the training of academic personnel. The answer is quite simply that in oncology there's been a good deal of money and a good deal of support. In rheumatology, and particularly in the institute with which many of you are 1-301 Seattle, Washington April 12, 1976 affiliated, you have to split a fairly modest pie into a great many thin slices. As Dr. Whedon well knows, each one of the subspecialists, the categorical areas of medicine which the NIAMDD services are competing for what I think can be interpreted as an almost decreased body of funds. I think that the main reason that subspecialties such as oncology have thrived, you know, so drastically has been perhaps in some instances the excitement of the field, but I think in the preponderance it's been the availability of support. So that if there's money, I think there's enough excitement going on in the rheumatic diseases--I don't have to tell you that, in terms of the immunological advances being made particularly--this is one of the exciting areas of biology in medicine--there just hasn't been enough money to support all the people who I think would want to go into it, and a significant number of people would pursue not only research careers, but they'd have the clinical fallout that one gets in an academic medical center. ENGLEMAN: Any other comment? (No response.) So all we need is more money? PETERSDORF: It would help. ENGLEMAN: Thank you very much, Dr. Petersdorf. I think that marks the conclusion of our open hearing, and in behalf of the Commission I thank all of you for your very kind attention. Thank you. 1-302 Seattle, Washington April 12, 1976 SUBMITTED STATEMENTS JOHN BUDLONG March 29, 1976 Seattle, Washington An announcement in the Seattle Times of a public hearing to be held in Seattle on April 12 by the National Commission on Arthritis and Related Musculoskeletal Diseases prompted me to send you the enclosed information on a portable bathtub which I have developed for the care of arthritic patients. I will be happy to demonstrate the function of the Handi-Bath at the hearing and make brochures available to interested participants if you feel this would be helpful. GEORGE P. DORSEY March 18, 1976 Seattle, Washington With reference to the public hearing in Seattle on April 12, 1975 about arthritis, my diet methods have not been investigated although I have previously written letters indicating their effectiveness. These diet methods have been developed and used by myself over the years, but have really only become practicable since about January 1, 1970. For arthritis, they depend in part on following certain management practices which are simply methods to prevent the joints, etc., from becoming injured and to promote healing. Please note that in what follows it has not been possible for me to use these management practices for my feet and ankles. I believe that the same or similar diet methods are useful in preventing or controlling infection, whether of a bacterial or virus nature, but not including fungus infections, on the following basis: It becomes progressively more difficult up the body from feet to scalp, thus requiring stronger and stronger diet methods. Such diet methods are the equivalent of strong medicine, and are not for everyone. Perhaps children would like them best. I want a guarantee of availability of diet ingredients for my own use before revealing my diet methods. I am 63, and for approximately 6 years have suffered from extremely bad varicose leg ulcerations without infection. However, arthritis in my feet and ankles has been locked in by the ulcerations, and so I can move about only with the greatest difficulty and with much pain. I am a shut-in. This statement may be included in the record. JOYCE M. WALKER March 26, 1976 Renton, Washington 1-303 Seattle, Washington April 12, 1976 In reference to Times newspaper article in the summer of 1964, I had a severe attack of joint illness which was diagnosed at the Virginia Mason Hospital in Seattle as possible rheumatoid arthritis. My left wrist and fingers and right knee and foot were badly swollen and very painful. I was admitted to the hospital where I received cortisone shots in the hand and knee and started on a prescription of 15 aspirins a day. I was 35 years old, married for 12 years with 3 children and had had 6 miscarriages. This is a much longer story, but the reason I am writing is because my strong conviction is that my illness was caused by my inability to deal with my own emotions at this time in my life. I was extremely amazed when a neighbor suggested that some arthritis might be emotionally caused. I was desperate and very fearful of being a cripple. I would try anything I could understand. In September I started reading books such as Prayer Can Change Your Life by Parker, Arthritis, Medicine and the Spiritual Laws by Swain, and my favorite, Inner Child of the Past, Missildine. I also attended an amateur but loving therapy group in a local church. The books were my only expense and I borrowed most of them. I started to recognize my own feelings and deal with them. The floor was scrubbed each time I recognized my worse enemy, "Anger". I continued the aspirin and medical tests. In November I started a program of my own to cut down the number of aspirin slowly. At the December medial checkup I had had no aspirin for over a week. The doctor was annoyed but found the blood and urine tests much improved. My joints continued to improve and by the next summer I noticed no skin discoloring or pain. The last 11 years I have been employed in the very physical job of preschool teacher. As absolute proof of my recovery, I have recently been taking belly dancing lessons. This incident was a real turning point in my life. I would like to pass on the benefit to others, if it is in fact of value. Personally, I would 1like more research into a possible emotional cause of some arthritis. At the very least, it seems that better emotional health would benefit victims of arthritis. CORDELIA J. TIGHE March 27, 1976 Renton, Washington It has been my thought for the last 9 years, when arthritis hit me, that research work should be done for this crippling disease. So I formed a club and we named it "Mari Club" which stands for Medical Arthritis Research Inc. Our decision was to play bingo. Our articles of incorporation are on file in Olympia as of 1972, but we have no licenses to operate yet. To make 50,000 annual the license would cost us $500.00. We have to rent a hall and buy a bingo machine and cards. Our club needs a seed grant to proceed. If this were made possible, perhaps many would get in the game to help take away the pain. 1-304 Seattle, Washington April 12, 1976 7.3. PHILLIPS, M.D. March 23, 1976 Seattle, Washington I understand that on April 12, 1976, there will be a hearing at the Seattle Hilton Hotel to seek information about the kinds of programs and services which need to be made available to alleviate suffering from arthritis. Unfortunately, I will not be in Seattle the week of that hearing and so will be unable to appear in person. Therefore, in lieu of personal testimony at that time, I submit this letter as testimony for the Commission. I speak as one who has been an active general practitioner-family physician. For the past 7 years I have been involved in developina educational and training programs for future family physicians. My concern is that such physicians and all other health professionals with whom they work will be faced during their professional careers with many patients suffering from diseases of the musculoskeletal system. Educating and training them about the management of patients with arthritis and rheumatic diseases is a most important activity and one which, I'm afraid, we have not accomplished optimally at the present time. Thus, I see continuing need to improve the resources for teaching health professionals regarding arthritis and the rheumatic diseases. I see a need to make this teaching more readily available to health profession students and practicing professionals in general, my own particular interest being in the education and training of family physicians. In support of the statements I have made above, I would submit some information from various studies of patients presenting to family physicians in this country and in England. In general, problems of the musculoskeletal system always rank near the top in terms of frequency of presentation in the primary care setting. They rank along with problems of the respiratory system and problems relating to reproduction. In a recent study from Virginia published in the Journal of Family Practice, February, 1976, (Marsland, Wood and Mayo, "Content of Family Practice," The Journal of Family Practice, Volume 3, No. 1, 1976, page 38), we find that among the 55 most frequent conditions presenting to family physicians are sprains and strains (item 6); other (undiagnosed) forms of arthritis and rheumatism (item 23); osteoarthritis (item 35); and rheumatoid arthritis (item 54). It should be noted that there are 567 different presenting problems categorized in this study, and these 3 musculoskeletal problems occur in the most frequent 54 of them. These problems accounted for 22,073 visits to 118 family physicians over a 2-year period in Virginia. In the August, 1975, issue of the Journal of the Royal College of General Practitioners, a similar study concerning all problems encountered during a 12-month period in British general practice revealed that 9 percent of all consultations during that year were due to musculoskeletal disorders. Thank you for this opportunity to present this information. I submit it in support of the contention that an important need is to improve the education and training of health professionals who are dealing with arthritis and rheumatic disease. 1-305 Seattle, Washington april 12, 1976 ALICE BRADLEY March 27, 1976 Seattle, Washington This letter may be used as testimony or you may call upon me to say publicly what is written here. It is my intent to make more people aware of the collagen diseases related to arthritis. There are two very serious diseases other than the average person's conception of arthritis. There is lupus which is a rather quick road to death which only the answer to arthritis itself will help. A girl 22 recently died of this in Seattle. There is scleroderma, which I myself have, which is a progressive disease also related. It causes the skin to shrink and all vital organs are affected. I could go into all of its side effects but the main thing is that without more research on arthritis there is no answer. Arthritis and its collagen diseases hit male and female, young and old. People will tell you, "Arthritis is not a killer"; I can assure you that it is. A dear friend of 33 died 2 weeks ago of scleroderma. She suffered terribly but kept saying to the end, "Don't worry, Alice, they will find a breakthrough'. This breakthrough takes money. Please help all of us who are in some way afflicted with this killer. With a breakthrough, many of the people now crippled could be working and off welfare, SSI and Social Security. It is so hard to be told not to give up. We are trying but there is just not enough money for research. F.J. DEGA, M.D. March 26, 1976 Great Falls, Montana I feel obligated to state to you the viewpoint of the Montana Regional Chapter. I would appreciate your consideration of the concept that the major emphasis upon funding should be given to community services as well as to the research center. I feel that a medical center's capability of continuing research in arthritis is essential. It is difficult for patients with physical impairments, such as arthritis and stroke, to be sent to a medical center constantly for reevaluation. I feel that strategic locations within given states (regional centers) for care of patients and training of personnel are essential if a nationwide network for arthritis, stroke and other chronic diseases is to be most rewarding. In our area we have an active local chapter which has been instrumental in setting up programs in outlying communities. We feel strongly that the community resources should be enhanced by increasing ' the educational 1-306 Seattle, Washington April 12, 1976 benefits to the paramedical groups, such as orcupational therapy, physical therapy, and also enhancing the local resource for free clinics in arthritis and education of other physicians in a given area. The outreach efforts, as adjudged by the local group in Great Falls, have met with favorable support from all communities in the surrounding areas. As you well know, there are only 1,500 practicing rheumatologists and 700 researchers, It seems to be an inordinate misconception to provide two-thirds or three-fourths of the appropriated funds to research centers when most of the practice of rheumatology is being done outside of the given centers. The State of Montana is fortunate in having four board certified rheumatologists. Their area covers 575 miles by 275 miles and, hence, the populace is distributed to various centers. It is my feeling that further funding should be given for paramedical personnel, enhancement of occupational therapy and physical therapy, outreach clinics for diagnosis and therapy, and increased formal education. It is my hope that you will consider these local objectives of community practice of rheumatology. MICHAEL B. ARMSTRONG, M.D. March 30, 1976 Anchorage, Alaska I have enclosed a copy of material which I wish to present as a written testimony to members of the National Commission on Arthritis. I am unable to attend the hearing, which is to be held at the Seattle Hilton on April 12, 1976, and it is hoped that this enclosure will suffice. Rheumatic diseases afflicting Alaskans represent a major health problem. Presently there are approximately 400,000 people residing in this state. Of this number, approximately 40 percent reside in the greater Anchorage area. At the present time, there are two practicing rheumatologists (Michael B. Armstrong, M.D. and Lee Schlosstein, M.D.) and two specialists in physical medicine and rehabilitation (Michael James, M.D. and Eric Long, M.D.) practicing in the municipality of Anchorage. We feel that the most urgent unmet need for persons suffering from arthritis is the dissemination of information regarding the availability, here in Alaska, of well trained medical personnel capable of evaluating and treating such individuals. Furthermore, we feel this need could be met most effectively by the establishment of a local chapter of the Arthritis Foundation here in Anchorage. Such a chapter could not only serve to disseminate information regarding available medical resources, but could also represent Alaska in the Arthritis Foundation on a national level. In addition, a local chapter could function as a conduit for charitable donations to the Arthritis Foundation for use nationally and on a local level. Educational goals could also be met. These include increasing public awareness of the socioeconomic import of these diseases which can be treated medically and are not the "hopeless cripplers" as so many people evision. Another problem area is in the realm of physical therapy which sometimes is not available to patients in rural Alaska. Part of this need 1-307 . Seattle, Washington April 12, 1976 is presently being filled by an itinerant physical therapist, supported by the Elks of Alaska. In other instances, physical therapy is not available to patients in the Anchorage area because of the expense involved which may not be covered by insurance or be otherwise affordable by the patients themselves. In summation, measures to provide funds for the establishment and support of a local chapter of the Arthritis Foundation, as well as to provide stuctured physical therapy to needy individuals, would go a long way toward filling unmet needs of arthritis patients in Alaska. We appreciate the opportunity to air our views on this subject and sincerely hope that the eyes of the Commission will remain open in considering the needs of Alaskans who suffer from arthritic disorders. JANETTE LAPRATH March 29, 1976 Bremerton, Washington I am the Handicap Coordinator in Kitsap County. Part of my job involves doing a continuing survey of handicapped individuals and their disabilities. To date 310 persons have been classified as handicapped in our county, and 111 of these have checked the fact that they have arthritis in varying degrees. Many of these arthritic persons have commented that they are unable to use the existing transit system because their condition prevents them from boarding the buses due to the fact that there are not low enough steps or handrails to assist them. Indeed, many are not able to leave their homes for shopping, social activities, etc., because walking any distance causes great suffering. My recommendations to ease the limitations that I have outlined would be the following: 1. Federal and state money should be made available to modify all existing public transit systems to enable arthritic persons to gain easy access to the transit vehicles; 2. The State Overtime Parking Permit now available to those who have lost the normal use of their lower extremities or hands should be made available to persons whose mobility is limited by severe arthritic conditions. I will not attend the public hearing in Seattle on April 12 held by the National Commission on Arthritis and Related Musculoskeletal Diseases, but I would like this statement included in the record. BLANCHE RAINS March 24, 1976 Lacoma, Washington I am writing this to explain the written testimony I have enclosed. Presently I am a patient of Dr. Wilsky at the Virginia Mason Arthritis Clinic in Seattle, Washington. But before I came here and in the vyears since 1960 when I first got arthritis, I made many mistakes in seeking help for my disease. 1-308 Seattle, Washington April 12, 1976 I feel that if I had had proper advice and medical care during the onset of my disease that I would not be as badly crippled as I now am. I hope that others can find this out so that they can be helped in time to prevent crippling and pain. I am writing this letter or written testimony in hopes that it will project a better understanding between the arthritis patient and his doctor, therapist and also the family a person with arthritis has close contact with. * Besides the almost constant pain many arthritics experience, there is fear to contend with--fear of being crippled, fear of more pain and who will take care of you if you become unable to do the many things you have been able to do in the past. It is so disheartening to observe your legs, arms, hands gradually become twisted, stiff, painful and unable to function normally. All of these things seem to cause our thinking to be so depressed that we don't accomplish the things the doctors and therapists have advised us to do. We patients tend to think (when the pain allows us to) that if we don't think about our problem and pretend it's not there, that it will go away. All of these things I have mentioned provide a barrier to the success of treatment for the arthritis patient. I believe if there was some way that we the patient could explain these feelings to a person who is well informed on arthritis that this would help us. I realize that there are too few doctors, therapists, etc., so they haven't time to stop and listen but maybe laymen could be trained to help in this way. It would make me happy if I could in some way prevent someone else from going through all the pain and crippling that I have had. CHARLES E. WEST March 27, 1976 Marysville, Washington Be it known that a person jumped on my head while I was swimming nearly 40 years ago doing considerable damage. This damaged area and a protruding glob of torn tissue remained immobile until 2 years ago due to pain associated with any movement. At this time I started tolerable rotation and isometric exercises. Said exercises did result in an 80 percent restoration of area mobility and a reduction of the glob of torn tissue by approximately 85 percent. I experienced no discomfort in said area but have discovered that the permanent arthritic damage will require a continuation of said exercises. “1-309 Seattle, Washington April 12, 1976 Four years ago, after considerable pain and many examinations, it was discovered that I had a progressively worsening bone deterioration of the upper back and considerable circulation problems. Said condition caused me a great deal of constant pain and by June of 1972 it was very difficult for me to negotiate steps, curbs, and most normal physical functions. All physical exertions were accompained with painful muscle spasms. My nerves were at the breaking point and I was plagued with digestive and most other body functions causing me no end of problems. I had to forego prescribed medication because they were hallucinogenic and too dangerous for me to take, since I was performing emergency services and my department surgeon would not release me from duty. It was in June, 1972, that a neurosurgeon declared me unable to perform my normal profession; also I had by now developed severe cervical spondylosis. In October of 1972 I started daily exercises, intended to increase my mobility and circulation. It was not until the spring of 1973 that I received responsive treatment consisting primarily of drugs for my pain and associated nervous condition. With considerable relief from the medication I greatly increased my daily routine of exercise to the present level of approximately 3 hours each day. During the spring of 1975, my exercises were giving me sufficient relief for me to start reducing my medication. By the end of 1975 I had reduced my medication by 75 percent. For the first time since 1971 I could walk, stand, sit, and sleep with a minimum of discomfort. To be specific: I had arrested the worsening arthritic condition in my upper spine; even forced my body to dissolve the accompanying inflammation and the several dozen spurs that had formed on my upper spine. I also managed with exercises and isometrics to straighten my lower spine sufficiently to relieve much of my circulation and digestive problems and regained most of my lost mobility. I know that the arthritic damage is permanent, but with a continuation of my daily exercises I know that I can retain a great degree of body mobility and remain relatively free of normal arthritic associated discomfort. It is my hope that due credit is given to the importance of exercises. It is also my hope that the proper legislation can be passed so that those that are afflicted with arthritis, such as I was, will be treated in time and responsively, so that they may not suffer the permanent nervous system damage that I have. I also believe I received considerable relief from an accidental, massive or small swarm of bees. on other occasions I believed short charges from electrical fences gave me relief. Since it is known that much of arthritis damage is caused by virus, I do believe it should be determined just what effect shock or poison has on this virus. I will be happy to cooperate with any arthritis research. 1-310 Seattle, Washington April 12, 1976 WILBERT E. FORDYCE, Ph.D. Seattle, Washington The intent of these comments is to «clarify and emphasize the importance of providing research support for the study of more effective ways of helping patients to participate in their self-care and rehabilitation. Chronic illnesses, such as rheumatoid arthritis, require by their very nature that patients undergo systematic behavior change. Once the disease process is established, patients must stop or reduce the frequency of some activities which previously they valued and engaged in consistently. They must also begin to do some things in the way of self-care and adherence to essential medically prescribed regimens which previously they didn't have to do, and which often are burdensome and even noxious. They must also engage in sometimes arduous and demanding efforts directed toward rehabilitation and the restoration of function. The behavior change overtones of that facet of chronic illness are often overlooked or are dismissed simply as problems of motivation. Patients (like all other people) are somehow expected to change their behavior because their physicians have told them they must, or told them how important it is to their welfare to do so. And if patients do not make these behavior changes effectively they tend to be written off as having problems of motivation or as having a personality defect. That view is plausible, but there is an abundance of evidence to indicate it doesn't work very well. The reason it doesn't work well is that it is based on the faulty assumption that information is an effective way of changing behavior. The idea is that one need only inform someone of what to do, and why, and his or her behavior will change. In medical settings the process is known as patient education. Inform the patient, or the family, so that they will know what to do and will do it. But there are examples all around us of the fallaciousness of that assumption. Driver education and publication of the hazards of speeding does not result in a marked decrease in accidents. Information about the health hazards of smoking has produced only a modest reduction in smoking. Information about the dnagers of drinking and driving hasn't resulted in the disappearance of drunken driving and related accidents. Dissemination of information has been tried in each of those cases as a way of changing consumer behavior and has been found wanting. In short, information is often a low power way of changing behavior. Behavioral science has in the past decade or so made vast strides in developing the technology by which to help people change their behavior. The technology is there. What is lacking is knowledge about how to modify the health care delivery system to insure that the technology is applied in ways which will optimize its use in the interests of effective patient care and rehabilitation. The plea here is for research support for studies designed to determine the most cost-effective and result-effective methods for weaving into the fabric of chronic illness management the essential element of behavior change technology. Reliance on consumer education must in this instance be replaced with more effective methods. The methods are known, 1-311 Seattle, Washington April 12, 1976 but the specific ways of delivering or implementing them are not yet well understood. There is much to be learned about precisely how to apply behavior change technology in medical settings and in relation to the management of chronic illness. Rehabilitation is an essential to the chronically ill patient in its own right. In addition, rehabilitation happens also to represent almost a model illustration of the integration of behavior change technology into the management of chronic illness and disability. Rehabilitation has been the pioneer in relating illness and the restoration and maintenance of performance in the patient's natural environment--home, work, and in society generally--and in utilizing behavior change technology as one of its principal tools for accomplishing these ends. If there is to be an increment in our ability to help the severely disabled, such as the rheumatoid arthritic patient, we must provide the research funding by which to study and implement rehabilitation and behavior change technology. Thank you for this opportunity to present my views on this vital subject. RUTH HARDIN March 30, 1976 Walla Walla, Washington I appreciate this opportunity to express my views on the unmet needs for the care of arthritics. Mine is inherited; it became active and crippling 35 years ago. I am now permanently disabled living on social security disability. Thousands of arthritics can repeat my story, and thousands more in the future will be repeating it until our government goes bankrupt trying to support them unless one unmet need is met! The need of physicians who have been trained to recognize arthritis, the different types of arthritis, the complicating factors, proper exam procedures, to read arthtitic X-rays, to evaluate the condition, and have better knowledge of treatment. The average practioner is totally ignorant in these areas. I searched for medical aid for 35 years, in California, Missouri, and Washington. Finally, last year, I found an X-ray specialist and an orthopedist who have enough knowledge to treat me. But too late, the spine is in advanced degeneratin, poratic, complications are crippling tendonitis in shoulders, hips, etc., plaque calcification in iliac arteries and lower abdominal aorta. Ninety-five percent of my former exams were conducted a a search for rheumatoid arthritis because the physicians did not know osteoarthritis was not the same disease. In March, 1974, social security hired an internist to examine me. He examined for rheumatoid, reported that my medical problems were minor and my disability payments were terminated. His medical training was less than 10 years ago. He was totally ignorant. (My payment was reinstated with accrued pay.) It is possible for an arthritic to be examined by 12 physicians within 12 months and the 12 diagnoses would vary from one extreme to the other, depending on each physician's knowledge, his exam procedure and ability to read the X-rays (if he made X-rays). Recommended treatment for this same 1-312 Seattle, Washington April 12, 1976 patient can vary from nothing or aspirin to hospitalization and traction. The usual treatment is aspirin or the latest developed drug. These are being carelessly dispensed to arthritics with ulcers and the results are disasterous. During the year of exams, the arthritic has been subjected to spinal poundings, arm vanking, neck twistings, etc., which usually result in short-term and sometimes permanent injury. It is possible that, during that year the arthritic was medicated or treated without benefit of X-rays; all this happened to me over a 35-year period. It could repeat during the next year if I went for exams. Research must continue, but arthritics need help now. Until physicians are trained my story will repeat a thousand times. I suggest funding be appropriated for pamphlets to be printed and issued to every physician in the U.S., instructing him in how to recognize arthritis, the different types of arthritis, examination procedure for each type, what complication factors to look for, and how to treat. I suggest the medical colleges be made aware of their shortcomings in training. In our modern world of medicine and education, this unmet need is incomprehensible and ridiculous. GRACE A. SHRINER } March 27, 1976 Port Angeles, Washinton I strongly believe that arthritics should be given the same consideration by the Federal and state governments for financial aid, rehabilitation, therapy, and living and medical expenses as is presently given those handicapped by retardation, and the kidney patients, etc. etc. I was born with congenital dislocated hips, and as a result of this, have suffered with arthritis for most of my 65 years, with numerous expensive surgeries and treatments, all paid for by my low-income parents and husband. Now, with the new "total hip" surgery performed on my right hip 2 years ago, I am at last free of pain in that hip. But there is the continual financial worry because: (nH 1 still owe $1700.00 on that surgery. (2) I have not been able to afford the correct therapy (and so do not walk without the assistance of two canes). (3) Our income is only Social Security-- (mine a small portion of my husband's because I have never been able to work. (4) TI still have the left hip to do someday. I am sure there must be other arthritics with similar financial problems. It is bad enough having the pain and disability of arthritis. So, can we please have legislative financial help for us? Thank you for your consideration. 1-313 ET he a REPORT OF THE NATIONAL COMMISSION ON ARTHRITIS AND RELATED MUSCULOSKELETAL DISEASES Volume I: The Arthritis Plan (DHEW Pub. No. 76-1150) Volume II: Work Group Reports (DHEW Pub. No. 76-1151) Volume III: Survey of Current Programs (DHEW Pub. No. 76-1152) Volume IV, Part 1: Public Hearings — Summary Index ) Tucson (DHEW Pub. No. 76-1153) San Diego Seattle Boston Volume IV, Part 2: Public Hearings — Harrisburg (DHEW Pub. No. 76-1154) Denver Volume IV, Part 3: Public Hearings — Milwaukee St. Louis Little Rock (DHEW Pub. No. 76-1155) Volume IV, Part 4: Public Hearings — St. Petersburg Atlanta Houston (DHEW Pub. No. 76-1156) Submitted Statements ARTHRITIS: out oF THE MAZE VOLUME IV, PART 2: PUBLIC HEARINGS National Commission on Arthritis and Related Musculoskeletal Diseases REPORT TO THE CONGRESS OF THE UNITED STATES April, 1976 U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE Public Health Service National Institutes of Health National Commission on Arthritis and Related Musculoskeletal Diseases Report to the Congress of the United States Volume IV, Part 2: Public Hearings April, 1976 DHEW Publication No. 76-1154 U.S. Department of Health, Education, and Welfare Public Health Service National Institutes of Health COMMISSION MEMBERS Ephraim P. Engleman, M.D., Chairman School of Medicine University of California San Francisco, California Verna Patton Anthrop, B.S., P.H.N. James R. Cowan Sacaton, Arizona Assistant Secretary of Defense Department of Defense K. Frank Austen, M.D. Washington, D.C. Robert B. Brigham Hospital Boston, Massachusetts William Gay, D.V.M. Associate Director Rosalind Russell Brisson National Institute of Allergy and Beverly Hills, California BE Pr tr nur Infectious Diseases Bethesda, Maryland William F. Donaldson, M.D. University of Pittsburgh ,'Howard Jenerick, Ph.D. Pittsburgh, Pennsylvania Special Assistant to the Director National Institute of General William R. Felts, M.D. Medical Sciences George Washington University Bethesda, Maryland Washington, D.C. Ronald LaMont-Havers, M.D. Vivian Floyd Lewis, Ph.D. . Deputy Director Wilberforce, Ohio National Institutes of Health Bethesda, Maryland Doris Melich Salt Lake City, Utah + G. Donald Whedon, M.D. Director, National Institute of Arthritis, Howard F. Polley, M.D. Metabolism & Digestive Diseases Mayo Medical School ba Bethesda, Maryland Rochester, Minnesota Alternate: Gordon C. Sharp, M.D. University of Missc uri Lt. Col. Oliver J. Lawless, MC, USA Columbia, Missouri Chief, Rheumatology Science Walter Reed Army Medical Center Marlin N. Shields, R.P.T. Washington, D.C. Latter Day Saints Hospital Salt Lake City, Utah Neil Otchin, M.D. Program Chief for Metabolic and Ex-Officio: Renal Diseases Veterans Administration John D. Chase, M.D. Washington, D.C. Chief Medical Director Veterans Administration Washington, D.C. William H. Batchelor, M.D., Executive Secretary Special Assistant to the Director National Institute of Arthritis, Metabolism & Digestive Diseases Bethesda, Maryland PENN-HARRIS MOTEL HARRISBURG, PENNSYLVANIA October 14, 1975 - . Peer. at 2m 1 Sele ae on Atta af ra goal w 3" mune RE EL ro Co n “+ - - 4h i R Fanny . tt LC . EE oat - « E a aw om Boer ] . . = 1 — el n Lo . is B a = 8 - ’ 1 . frown = = = . oo en wong 13 B i =< = ’ B - - we 2 BN El - . oo a . " # . a = x N a . " a % = y a ——— eli i ll BR I “IAN = =» oo - TABLE OF CONTENTS CHRONOLOGICAL LIST OF WITNESSES HARRISBURG, PENNSYLVANIA OCTOBER 14, 1975 HOLLANDER, Joseph L., M.D. Professor of Medicine, University of Pennsylvania KUNKEL, George, M.D. Medical Director, Central Pennsylvania Chapter, Arthritis Foundation PODGORSKI, Sophia, R.N. Director of Nutrition Services, Pennsylvania Department of Health COSTELLO, Madalon Executive Director, Central Pennsylvania Chapter, Arthritis Foundation NICHOLSON, Janice, P.T. Project Administrator, Regional Arthritis Services Project, Arthritis Foundation LEOPOLD, Marx President, Central Pennsylvania Chapter, Arthritis Foundation STRAWSER, Norman Patient, Layperson PFEIFFER, Mildred, M.D. Director, Division of Chronic Diseases, Pennsylvania Department of Health BALLANGEE, James M. Chairman, Eastern Pennsylvania Chapter, Arthritis Foundation GLAUSER, Felix, M.D. Plant Physician, Bethlehem Steel SHULMAN, Lawrence, M.D. Staff, Johns Hopkins University School of Medicine, Johns Hopkins Hospital 2-3 2-21 TOURTELLOTTE, Charles D., M.D. Medical Director, Greater Delaware Valley Regional Medical Program, Arthritis Control Project and SALMON, J. Warren Director, Greater Delaware Valley Regional Medical Program, Arthritis Control Project GARRY, Cynthia Vice-President, Chairman of Women Volunteers, Central Pennsylvania Chapter, Arthritis Foundation NEISWENDER, Heidi, R.D. Pennsylvania Dietetic Association RODNAN, Gerald, M.D. Professor of Medicine and Chief, Division of Rheumatology and Clinical Immunology, University of Pittsburgh School of Medicine BACHMAN, Leonard, M.D. Health Services Director to Governor Milton Schapp; Secretary, Pennsylvania Department of Health MYERS, Allan, M.D. Director, Division of Rheumatology, University of Pennsylvania DONSEN, Charles B. President, Arthritis Friendship Club, Central Pennsylvania Chapter, Arthritis Foundation DECKER, John, M.D. Chief, Arthritis and Rheumatism Branch, NIH/NIAMDD RICHARDSON, Robert Ww. Western Pennsylvania Arthritis Project, St. Mark Memorial Hospital; University of Pittsburgh School of Health-Related Professions EHRLICH, George, M.D. Professor of Medicine, Temple University; Director, Arthritis Center and Department of Rheumatology, Albert Einstein Medical Center and Moss Rehabilitation Hospital EISENBEIS, Carl, M.D. Medical Director, Comprehensive Care and Rehabilitation Program; University of Pittsburgh, St. Margaret Memorial Hospital 2-4 Page 2-43 WHITE, Joanne, R.N. Rehabilitation Coordinator, St. Margaret Memorial Hospital WINGER, Barbara Staff Occupational Therapist, St. Margaret Memorial Hospital VIOZZI, Francis J., M.D. Rheumatologist, Geisinger Medical Center, Danville, Pennsylvania STEGMAN, Olivia Patient, Member of Leanon and the National Organization for Lupus BURNSIDE, John W., M.D. Director of Ambulatory Services, M. S. Hershey Medical Center 2-109 2-111 2-113 2-115 SUBMITTED STATEMENTS GOTSHALL, Germaine, R.D. Camp Hill, Pennsylvania GRUEN, Hanna Pittsburgh, Pennsylvania CREADY, Joyce Pittsburgh, Pennsylvania GRANICK, Risa, L.P.T. Philadelphia, Pennsylvania MARTIN, Jerome L. Pittsburgh, Pennsylvania CARTER, Sue, L.P.T. Pittsburgh, Pennsylvania MOLLINGER, L.P.T. Pittsburgh, Pennsylvania CONRAD, Paul, L.P.T. Pittsburgh, Pennsylvania SOLEM, Louise McLean, Virginia SCHWEIKER, Senator Richard S. Washington, D.C. ABRUZZO, John L., M.D. Philadelphia, Pennsylvania BOOK, Inga M. Hershey, Pennsylvania BROWNELL, John E. Pittsburgh, Pennsylvania KUHN, Margaret E. Philadelphia, Pennsylvania 2-6 2-122 2-122 2-122 2-124 2-125 2-126 2-128 2-131 2-132 2-134 2-134 2-135 PROCEEDINGS ENGLEMAN: The Commission solicits testimony which, hopefully, will be constructive and helpful to those of us who are charged with the responsbility of creating what is referred to in the Act as a National Arthritis Plan. While we are interested in your present situation, we are much more concerned with your ideas--how they apply to improvement in the present situation. The question is: How may the Arthritis Act provide this improvement, not only locally but nationally? What are your recommendations for implementation of a National Arthritis Act? How would you have them included in our report to Congress in the creation of this Arthritis Plan? I will now ask the members of the Commission to introduce themselves. I am Eph Engleman, San Francisco, University of California. POLLEY: Howard Polley, rheumatologist, Rochester, Minnesota. SHARP: Gordon Sharp, rheumatologist, Columbia, Missouri. LAWLESS: Oliver Lawless, rheumatologist. FELTS: Bill Felts, rheumatologist, Washington, D.C. GAY: William Gay, Associate Director at the National Institute of Allergy and Infectious Disease. MELICH: Doris Melich, President of the Utah Chapter of the Arthritis Foundation. ANTHROP: Mrs. Verna Anthrop. I have had arthritis for 15 years. I am just a citizen. DONALDSON: Dr. William Donaldson, orthopedic surgeon, Pittsburgh. BATCHELOR: Dr. Bill Batchelor, on the staff of the National Institute of Arthritis, Metabolism and Digestive Diseases, and the Executive Secretary of the Commission. JENERICK: I am Howard Jenerick, Staff Assistant at the National Institute of General Medical Sciences, part of the National Institutes of Health. SHIELDS: I am Marvin Shields, a‘ physical therapist from Salt Lake City, Utah, representing the allied health professions. LEWIS: I am Vivian Lewis, retired professor of kinesiology and physiology, Wilberforce, Ohio. ENGLEMAN: Now, we will ask all persons appearing before the commission to identify themselves, stating their full name, title, organizational affiliation and address. 2-7 Harrisburg, Pennsylvania October 14, 1975 We assume that you will have a written statement. This statement will be enclosed in a volume which will accompany our report to Congress. Due to the number of persons who have requested appearance before the Commission, I must ask you to limit your testimony to five minutes. This will permit, hopefully, an additional few minutes for questions from the members of the Commission. It is now my pleasure to introduce a former president of the American Rheumatism Association. Well, I should not be identifying you. You go ahead and do it yourself, Dr. Hollander. TESTIMONY OF JOSEPH L. HOLLANDER, M.D. PROFESSOR OF MEDICINE, UNIVERSITY OF PENNSYLVANIA HOLLANDER: Members of the Commission: It is a privilege to be here. I come before you as a veteran of nearly 40 years of treating arthritis patients, teaching physicians in rheumatology, conducting research in this field, writing and editing papers and books on arthritis and organizing and conducting a large arthritis center. I ask for nothing for myself as I have retired as administrator of my arthritis center and from doing research, but I am continuing in the fields of teaching and patient care, and in this capacity plead for increased support in several areas. The cutback in support of research in arthritis-related conditions during the previous administration resulted in curtailment or an ending of worthwhile research, including our work with the controlled climate chamber in which we studied the effect of climate on arthritis. I plead with you to urge that clinical research once more be supported, not just in a few cloistered, chosen centers of the elite, but in any institution that has the ideas, the equipment and the personnel to do the job. Cutting off of training grants by NIAMDD has seriously jeopardized the production of experts in patient care for arthritis. At least two extra years of specialist training are now required to become a trained rheumatologist . and a certified rheumatologist, and few can afford this without financial aid. To care for the millions of arthritic patients in the United States, we need many more experts. Before a physician can carry out research in this field, he needs adequate specialized training not now supported. Special centers are needed to do research, for training arthritis specialists and for exemplary patient care, both medically and surgically, as well as for arthritis rehabilitation programs. I would plead that such centers be supported in numerous areas, not just in a very few places. 2-8 Harrisburg, Pennsylvania October 14, 1975 Several functions have been outlined in the National Arthritis Act which cannot be performed by a relatively few, elite arthritis centers. These public health aspects of rheumatology will vastly improve our delivery of good patient care through public education programs, family awareness programs, education of paramedical personnel, arthritis screening or case-finding programs in which I am particularly interested, and arthritis demonstration clinics for training of general or family physicians. These latter functions have been started by the Arthritis Foundation and furthered by regional medical program arthritis projects. You will hear from Dr. Tourtellotte later about these. I plead also that funds for enlargement and continuation of such projects be made available. Thank you for your attention. I would be happy to answer questions if time permits. ENGLEMAN: Thank you Dr. Hollander. Are there any questions from the members of the Commission? LEWIS: What is your definition of a center? HOLLANDER: A center is a place that is made up of a number of people collaborating to deal with research, with training and with patient care. I think unless it serves all three functions it cannot be truly called a center. We have treatment centers, of course, in many hospitals where there may be two or three people, but a real center would involve research as well, and it would also involve training in these fields, rheumatologists, orthopedic surgeons in rheumatology or whatever. ENGLEMAN: Any other questions? I gather that you, I am sorry, did you have a question? ANTHROP: Yes, Dr. Engleman. Dr. Hollander, what would you include in your family awareness program? HOLLANDER: We have made up one that we are administering this year, particularly as a model one to our regional medical program. This is for dealing with the patients themselves and particularly with their families to teach them how best to care for a patient with arthritis within their family group, in other words, avoidance of oversolicitious care, but proper comprehensive day-by-day care, such as home physical therapy and various other things involved in it. How to live with the person with arthritis is really our family awareness program in a nutshell. ENGLEMAN: Thank you very much, Dr. Hollander. VOICE: How do you actually carry on these programs? Do you have specific types of individuals that do the training in family relationships? HOLLANDER: Well, many of us, as physicians, take part in this. Some of our paramedical personnel, for instance, are our physical therapists. One of these, who we call our arthritis rehabilitation instructor is very 2-9 Harrisburg, Pennsylvania October 14, 1975 active in this and acts as my right hand in this particular program. These people have been dealing with the problems for years and are, therefore, very helpful in getting our ideas across to the patients, to their families, and to their friends. ENGLEMAN: Yes, Dr. Felts. FELTS: Dr. Hollander, you are indicating that you believe the centers should come in, in part at least, as training sites for rheumatologists. As you are well aware, there is quite a lot of pressure nationally to develop more primary care physicians rather than specialists or subspecialists. Do you have any comment regarding how numbers of rheumatologists on a national basis might eventually get into the equilibrium of what is needed without excessive numbers? HOLLANDER: We are trying very hard, Dr. Felts, to train our medical students to have a greater interest in this field. We are also trying to train all of our interns and residents to be better grounded in the fundamentals of rheumatology. We are doing this through our medical schools, and we are trying very hard to enlarge the number of medical schools in this country to give this training as a part of the core curriculum. At present, most of it is given purely as electives. Therefore, there are a good many students who go through and have no exposure to rheumatology at all. Of course, as crusaders--that is all of us who have been in this field a long time really are--we try very hard to proselytize and steal the interest, if we can, of our students, of our house staff, and so on. We cannot expect to have all of the people who take care of arthritics to be trained rheumatologists. As you implied, it is impossible. But if we can broaden the base of knowledge, at least to the practical point of diagnosing and treating patients with arthritis, I think we will have accomplished our purpose. ‘IT am hopeful that with many centers' support, such as that of the Arthritis Foundation, we can get more and more students interested; we can get more and more physicians interested; and we can train more and more general practitioners to have awareness in this field. VOICE: Dr. Hollander, do you have an outreach program within your center? And what percentage of the peripheral communities do you get from the center? HOLLANDER: I didn't get the original connotation. What kind of program? VOICE: Well-- HOLLANDER: The training program, physicians- VOICE: Outreach, yes. HOLLANDER: Oh. 2-10 Harrisburg, Pennsylvania October 14, 1975 VOICE: The question really pertains to the centers which generally are in high-density population areas. The patient frequently is out peripherally. What percentage of the communities supply this sophisticated support that is city-based? HOLLANDER: Well, in addition to our own personal lectures and appearances at various medical meetings in Allentown, Reading and all the area of our community or outreach program limits, we have, through our Greater Delaware Valley Regional Medical Program Arthritis Project, arthritis demonstration clinics in many small communities. In hospitals, we see the patients with the local doctors in attendance. You will hear about this later; I don't want to be redundant. ENGLEMAN: I think we should go on. Thank you very much, Dr. Hollander. Dr. George Kunkel? TESTIMONY OF GEORGE KUNKEL, M.D. MEDICAL DIRECTOR CENTRAL PENNSYLVANIA CHAPTER, ARTHRITIS FOUNDATION KUNKEL: I am Dr. George Kunkel. I am a practicing rheumatologist in the Harrisburg area. I was the first to return with formal training in rheumatology some 7 years ago. I am on the staff of various local hospitals, and Medical Director of the local chapter of the Arthritis Foundation. Dr. Hollander has already expressed in detail many of the things that I would say in general in terms of our local deficiencies. Specifically, I consider the deficiencies to lie essentially in three general areas. The first and perhaps the most important of these areas is the very keen need to improve the awareness and skills of diagnosis and management of the family practitioners and all the other medical professionals to whom the arthritis sufferers first present. Far too many times, in my experience, misdiagnosis or inadequate or inappropriate treatment results in needless suffering or significant deformity. These problems could be eliminated or reduced with the modalities already available. Additional inducements in the form of local and nonlocal medical seminars and or training courses to increase the recognition of the various types of arthritis, and basic medical management are needed at all levels of medical practice and education in this community region. Secondly, we need to increase the public, and therefore the patient awareness, of the fact that there are many different types of arthritis and that something, sometimes a great deal can be done for all of these various types if the appropriate skills are availalbe. Patients also need to know that we do have established arthritis clinics, and other rheumatologists besides my -~f in this area who can provide this instruction and service in cuoperation with the individual's own private physician. And, of course, the third area of need--and this is not just a local one, but is national and international, and Dr. Hollander has already 2-11 Harrisburg, Pennsylvania October 14, 1975 expressed this, is that more efforts are assuredly necessary to identify the causes of the different forms of musculoskeletal disease, and, of course, to find more effective measures to cure or to treat this collection of difficulties. Therefore, the support of research programs in the institutes of qualified investigators cannot and should not be abandoned, and certainly should be increased, if these diseases are ever to be controlled. The similar need to support the training of additional medical and paramedical personnel in the fields of rheumatolagy should continue to be a major part of this effort to increase the overall benefits to the patient. This is a general statement of the deficiencies which I believe are national in scope, without any specific suggestions as to particular programs. ENGLEMAN: Dr. Kunkel, do you have any personal bias as to the priorities? That is, you have given us a very nice statement as to where the needs exist. Are you willing to indicate which is the greatest need at this time? KUNKEL: The greatest need at this time certainly is the area that I first mentioned, and that is increasing the awareness and the abilities of the family practitioners to whom the patients first present themselves. This is where the greatest immediate deficiency lies, The skills of many of our practitioners are not the equal of the individuals coming out of internal medicine and other residencies in the hospitals today. ENGLEMAN: Dr. Batchelor? BATCHELOR: May I ask Dr. Kunkel whether he would care to indicate how to go about this. Perhaps some start has keen made. What do you see as the promising needs in getting this important job done? KUNKEL: Well, we have had various programs with the attendance of local interns for the purposes of education and exposure. Various programs in this area have increased in the last few years. However, it seems that the majority of individuals who come to hear and learn seem to be the same physicians. The problem is how to reach those who do not want to or do not have the time or the interest, And I believe that this will require more field work clinics, the sort of programs that we do not now have set up in this region. Dr. Hollander referred to these clinics--where the family practitioner in outlying hospital participates with a consultant who has rheumatological training on the needs of a given patient. ENGLEMAN: Any other questions? Thank you very much, Dr. Kunkel. Sophia Podgorski. 2-12 Harrisburg, Pennsylvania October 14, 1975 TESTIMONY OF SOPHIA PODGORSKI, R.N. DIRECTOR, NUTRITICN SERVICES PENNSYLVANIA DEPARTMENT OF HEALTH PODGORSKI: I am Sophia Podgorski, Director of Nutrition Services for the Pennsylvania Department of Health. I am the past president of the Pennsylvania Dietetic Association and also past president of the Association of State and Territorial Puklic Health Nutrition Directors. In my opinion, there is a need for a strong, coordinated approach to nutrition research in relation to arthritis, to the development of the training opportunities for physicians and allied health personnel, such as dieticians and nutritionists as well as others in relation to the nutrition implications in the care of arthritics. There is a need for the collection and standardization of arthritis patient data, including data in regard to nutrition needs and the effects of nutrition modification in the total care of arthritic patients. In reviewing some of the nutrition education materials for arthritic patients, I note that there is considerable emphasis on the fact that "there is no special arthritis diet" and on the importance of a well ballanced nutritious diet. In my opinion, this is not enough. The nutritional care of an arthritic patient should include a carefully detailed assessment and evaluation of the patient's nutritional needs, his or her attitudes and deepest concerns, and family history. The importance of weight control, is, of course, obvious. However, much more care and attention is needed to help the patient attain desired goals, whether these goals are weight loss or, in some cases, the prevention of weight loss. Although nutrition research in arthritis is scarce and fragmented, there appears to be evidence that suggests the need for diet modification in conjunction with the use of aspirin as well as other drugs as therapeutic agents to prevent or minimize its effect in causing gastric erosions and ulcerations and hemorrhage. Equally important is diet modification in the prevention or correction of iron deficiency anemia, which also occurs frequently among patients who take aspirin over long periods of time. No less important is the need to consider the diet modifications necessary to insure optimum plasma ascorbic acid level and vitamin B-12 absorption, and a comprehensive diet aprroach to the total treatment of atherosclerosis, diabetes, the various hypirlipedemias and renal disorders which apparently share complex associations with arthritis and the treatment of its various forms. In arthritic children, nutritional care must include consideration of nutritional needs for physical and mental growth and development, as well as previously mentioned factors. 2-13 Harrisburg, Pennsylvania October 14, 1975 In view of these important considerations in the treatment of arthritis, I strongly recommend a wider use of registered dieticians and nutritionists in the gathering of pertinent data in research projects and in nutrition and diet counseling at treatment centers. Only by careful attention to the patient's needs, concerns and beliefs, and continuous support of the patient, can there be any hope of resisting the blandishments of food faddists fad diets and fad diet books which add so greatly to the already high financial burden of the arthritic patient. I thank the members of the Commissicn for the opportunity to present this testimony today. ENGLEMAN: Thank you Ms. Podgorski. Any questions? Yes, Dr. Polley. POLLEY: I presume your services cover the whole state. About how many people are involved? Do you have anybody who is concentrating on arthritis, on the treatment, as such? PODGORSKI: Actually, in the past few years our staff has been drastically reduced, and we have approximately 14 people for the entire State of Pennsylvania who are considered generalists in the area of nutrition and, on occasion, they are called in to work with arthritic patients. My own experience with arthritis goes back to the period of my grandparents, when I saw them afflicted with arthritis. Later, my parents became similarly afflicted, and I now see this developing in my brother, my sister and myself. ENGLEMAN: I am quite naive regarding this question, but do most states have this kind of service? PODGORSKI: Yes, Doctor, they do. It varies greatly from state to state as to the number of people that they have in the specific areas. ENGLEMAN: Thank you very much. Madeline Costello. TESTIMONY OF MADALON CCSTELLO EXECUTIVE CIRECTOR CENTRAL PENNSYLVANIA CHAPTER, ARTHRITIS FOUNDATION COSTELLO: Thank you, Dr. Engleman. Ladies and gentlemen: I am Madeline Costello, the Executive Director of the Central Pennsylvania Chapter of the Arthritis Foundation. I feel privileged to have been associated with the activities of the Arthritis Foundation for almost 20 years, both as a volunteer and as a paid executive director. This chapter's 23 county area serves a population of 2,235,188 of which an estimated 223,518 are victims of some fcrm of arthritis. 2-14 Harrisburg, Pennsylvania October 14, 1975 our fundraising efforts have progressively increased. Thirty-five percent of the monies go to national research, but it is not enough. It is mandatory that sufficient Federal funding be appropriated to assist the Arthritis Foundation in developing stronger research programs. The current situation in one-third of the nation's medical schools is deplorable. A properly accredited medical school should be required to have a department of rheumatology with more hours of teaching in this field available to the students. You understand this is a layperson speaking. We are fortunate to have a competent medical school in our area, the Pennsylvania State University, M. S. Hershey Medical Center. During each of the past 5 years the chapter has been providing a visiting professorship in rheumatology to the Medical Center. Presently, the professorships are of 1-year duration, but we are hopeful that our preliminary efforts may ultimately develop into a full-fledged department of rheumatology. Although the fact that 1 out of every 10 persons is believed to be afflicted with arthritis, and 1 out of every 5 families is said to be affected, the medical schools appear to be very reticent about establishing such a department, although the incidence of the disease is greater than that of any other disease. There are three arthritis charters in the Commonwealth of Pennsylvania. We have initiated steps toward the formation of a state task force on arthritis. As of this writing, this had not been accomplished. I could be pleasantly surprised. The writer and members of this chapter feel that consideration of sufficiently appropriated funds channeled through state health departments and local Arthritis Foundation chapters could materially assist in achieving screening, detection and control programs and standardization of arthritis patient data to facilitate the collaborative clinical research program for improving arthritis patient care. This chapter has recently been awarded a grant to implement a much needed patient-family education program. It is hoped that consideration will be given furtherance of the RMP's or a similar vehicle for the continuance of such programs. This Chapter can boast of only 10 members of the American Rheumatism Association in this area. One is an orthopedist; the others are limited to 5 counties of the 23. Similarly, there is a great lack of clinical facilities. These are available in only 4 of the 23 ccunties. Thank you. ENGLEMAN: Thank you, Ms. Costello. Any questions? I thought I heard you make the comment that you hope that the funding which might come out of this Arthritis Act could be used to assist the Arthritis Foundation. Would you just elaborate on what you mean ky that? COSTELLO: The thinking was, Dr. Engleman, that perhaps through state health departments working cooperatively with the local chapters, this collective concentration on the problem might accomplish something in the areas that are in such great need. 2-15 Harrisburg, Pennsylvania October 14, 1975 ENGLEMAN: Do you have such an arrangement in this state now? COSTELLO: Unfortunately, we don't. ENGLEMAN: Yes, Dr. Polley. POLLEY: Why do you think there is such a shortage of rheumatologists in this area, I mean in the medical schools? COSTELLO: Well, there is definitely a shortage of rheumatologists in the area, Doctor, I think perhaps because we are out in the boondocks, so to speak. We are not near the medical schools. It seems that most of the rheumatologists are concentrated in the larger cities. Perhaps someone else would have a better answer for that. ENGLEMAN: Yes. SHARP: I would like to follow ur your comment about trying to get a rheumatology unit at the medical school where one does not now exist. Could you elaborate a little more on what you see as the nature of the difficulties preventing that from happening? COSTELLO: I guess, just off the top of my head, it is my understanding that this is not given a very high priority. SHARP: So you feel it is a slowness of the university system to respond to this as an important need? COSTELLO: Yes. SHARP: Let me ask you one other question, too, if I may. You talked about a patient-family education program, and this was funded through an RMP grant, was it? COSTELLO: Yes. SHARP: Could you give me some idea of how those grant monies were utilized? What were the aspects of the program that required that kind of support? And, secondly, could that have been done with community support, without any RMP support? COSTELLO: You will be hearing from our administrator of this project about implementing the patient-family education program, which I think will give you a better explanation. SHARP: But there was some funding ky the RMP? COSTELLO: Yes. SHARP: Since there are so many important things that will need to be funded under the Arthritis Act, I was wondering whether you feel that any part of this program might have been carried out even if that RMP grant had not come across? 2-16 Harrisburg, Pennsylvania October 14, 1975 COSTELLO: Well, it seems that on the small scale on which we were able to do it, Doctor, it wasn't too effective. We needed the manpower, the necessary manpower to effect this. ENGLEMAN: Yes, Dr. Felts. FELTS: Ms. Costello, I know that you represent the Central Pennsylvania Chapter. I wonder, though, again following up on Dr. Sharp's questioning slightly, if you would perhaps tell us how many medical schools there are in the State of Pennsylvania and how many of them do have divisions of rheumatology? Do you happen to know that? COSTELLO: I am afraid you have me there, Dr. Felts. ENGLEMAN: Dr. Hollander might ke able to answer that question. Can you Doctor? HOLLANDER: There are five in Philadelphia, one in Hershey, and one in Pittsburgh, but only the five in Philadelphia and the one in Pittsburgh have rheumatology centers. FELTS: Thank you. ENGLEMAN: Thank you very much, Ms. Costello. I think we should now go on to Jan Nicholson. TESTIMCNY OF JANICE NICHCLSON, P.T. PROJECT ADMINISTRATOR REGIONAL ARTHRITIS SERVICES PRCJECT, ARTHRITIS FOUNDATION NICHOLSON: I am Janice Nicholson, rhysical therapist and Project Administrator "of the Regional Arthritis Services Project under the Arthritis Foundation which is sponsored by an RMP grant. Since becoming Project Administrator of the Regional Arthritis Services Project in central Pennsylvania, my awareness has become intensified for the need of quality, comprehensive management to patients with rheumatic diseases. The project is attempting to address itself to the needs which exist in our region in the area of: (1) Increased dissemination of quality instructional procedures and techniques for effective patient-family education. (2) Broadened educational programs for professionals and paraprofessionals to ameliorate the delivery of care in the area of rheumatic diseases. (3) The development of a regicnal clinic for accessibility and comprehensive management to patients with arthritis. Central Pennsylvania consists of 23 counties with approximately 16,371 square miles, and a combined population of more than 2.2 million. It is 2-17 Harrisburg, Pennsylvania October 14, 1975 known that 1 of every 10 individuals has some form of arthritis, and it can therefore be extrapolated that in central Pennsylvania alone there are nearly 225,000 individuals suffering from arthritis. Central Pennsylvania currently has five established outpatient clinics in four counties which are staffed ky paid rheumatologists, and which offer services to the adult population afflicted with rheumatic disease. The five facilities were queried as to the total number of patients. This was tabulated on a regional and yearly kasis. The annual visitation total varied between clinics from 106 patient visitations to 5,200. The summation of the 5 facilities was approximately 7,200 annual visits, two- thirds of which were patients involved in follow-up care. In addition to the five clinical facilities, there are four rheumatologists in central Pennsylvania who offer services through private practice. A query was again made in reference to the total number of patient visitations, and the data collected revealed that 8,344 annual visitations are being made to private practitioners specializing in rheumatology. Again, approximately two-thirds of these services are being rendered to patients under previous care. With the increase in consumer consciousness has come the need for increased patient-family education. However, a review of the educational instructions rendered to the patient ky professionals or paraprofessionals reveals a dearth of quality instructional procedures, techniques and materials. Of the five clinics and four private practices offering services in central Pennsylvania, only two utilize didactic group instruction and provide written literature. The current mode of patient- family education has been informal verkal instruction primarily on a one- to-one basis with occasional demonstration as to technique and procedure. Without the development of curricula this instruction becomes piecemeal and therefore ineffective. I am requesting that the Commission give consideration to these needs and to the funding which is essential to alleviate these deficits. With all nine facilities being located in only four counties of central Pennsylvania, an extreme void is keing produced in the majority of our rural regions. It is suggested that with the providing of educational programs for professionals and paraprofessionals will come an increase in expertise in delivery of quality patient care. This quality care will manifest itself not only in the area of disease management and treatment, but also an improvement in instructional procedures and techniques for sophisticated patient educational programs. To increase the dissemination of instruction and ultimately the quality of programs, serious consideration needs to be given to the development of additional clinics. Accessibility of services is imperative for the comprehensive approach necessary to manage the complexity of problems encountered with rheumatic diseases. Thank you. ENGLEMAN: Thank you Ms. Nicholson. Any questions? Yes. LEWIS: To what extent are minority ethnic groups involved in your projects? 2-18 Harrisburg, Pennsylvania October 14, 1975 NICHOLSON: In reference to? LEWIS: Any project. NICHOLSON: As staff or as recipients of the services? LEWIS: Staff, recipients, consumer of the services. NICHOLSON: At the moment there are four staff members on the project, none of which are minorities. Minority groups will be recipients, though, of services offered, and will be offered to any patient and family involved with rheumatic diseases, if that is an adequate answer to your question. I am not sure I quite understood. Did you mean in reference to services being rendered? LEWIS: I meant both, those who are administering the services and those who are recipients of the services. NICHOLSON: Minorities will be recipients of it. The staff of the project itself is small and only consists of four. ENGLEMAN: Yes. LAWLESS: Ms. Nicholson, just a question in relation to the numbers you quoted. I think a total of 18 cr 15,000 patients were seen. Do you have any breakdown as to what percentage were first-time arthritic presentations to these services versus what happens to them? Are they referred back to primary care physicians or do the rheumatologists become the primary care physicians? NICHOLSON: I do not have a breakdown as to the total number. These were patient visitations, not patients themselves. Approximately one- third of that number were new patients. In reference to who delivered follow-up care, it was a combination of koth the primary physician and the rheumatologist working in conjunction with one another. SHIELDS: One of the things that was alluded to was the fact that a potential way to have all doctors trained in rheumatology is to have more rheumatology departments in medical schools. It is obviously not possible for two or three allied health people to treat all the people with arthritis. How do you see allied health people receiving the kind of training they need to better treat patients with arthritis? NICHOLSON: I voted for this in my testimony. And I think this one comes back to the developing of educational programs. Presently, they are few and far between in central Pennsylvania for both the professional and the paraprofessionals. We have many more paraprofessionals than we do professionals in central Pennsylvania. As you say, they will be seeing the majority of the patients. There is a need for not only more programs, but accessibility to these programs. Most of these programs are keing offered in the larger cities and counties within central Pennsylvania. The project is attempting to take these educational programs out tc the paraprofessionals who, up until 2-19 Harrisburg, Pennsylvania October 14, 1975 this time, have not had the opportunity to attend continuing educational programs. Many of these paraprofessionals are the only professionals within their hospitals--maybe just one PT--and, up until this time, could not take two or three days off to come to the Harrisburg area or to the Philadelphia area for these inservices, so the project would like to take the programs out to them. SHIELDS: So you can see it mainly as training physical therapists after they have graduated from physical therapy school in their specialities in arthritis, or would you see more done at the basic level when they were in training. NICHOLSON: Yes, I prefer to see it done while they are getting their training in the schools and universities themselves. ENGLEMAN: Yes. LAWLESS: Can I just follow up on that point? Did you say that there were more paraprofessional people in this area than professionals? NICHOLSON: Right, because right now there are only seven .rheumatologists in central Pennsylvania. LAWLESS: In your experience, what integration-coordination exists between the private practitioner, the primary care physician, and the paraprofessional in relation to patient care or is the contact directly to rheumatologists? NICHOLSON: Up until this time, it has been primarily back to the rheumatologist. Unless the primary care physician is going to the hospital or the «clinic where the patient is being seen, there is very little written correspondence or telerhone correspondence back to the paraprofessionals, and unless, of course, the primary physician is at the facility when the patient is being seen either as an inpatient or an outpatient. ENGLEMAN: Time doesn't permit a detailed answer to this question, so you may answer it yes or no. Do you have an ongoing system of evaluation of what you are doing? NICHOLSON: Yes. ENGLEMAN: Will you be sure to include it in your written testimony? NICHOLSON: The project is only one-month old and-- ENGLEMAN: Oh, but you do--you have an ongoing prospective mechanism by which you can assess what you are dcing? NICHOLSON: An evaluative tool is Fkeing developed prior to the services and programs being developed. 2-20 Harrisburg, Pennsylvania October 14, 1975 ENGLEMAN: Will you include whatever you can in your written testimony? NICHOLSON: Yes. ENGLEMAN: Thank you very much. NICHOLSON: Thank you. ENGLEMAN: Marx Leopold? LEOPOLD: I have my own statement, and I have been furnished a statement by a patient from the central Pennsylvania area who can't be here today because he is in the hospital. And I would like to present my statement and answer any questions that you may have, and then this statement is a relatively short one. ENGLEMAN: How much time is this going to take? LEOPOLD: Well, my statement only takes three or four minutes, and this will take less than a minute. ENGLEMAN: Would you identify yourself, please. LEOPOLD: Yes. TESTIMCNY OF MARX LEOPCILD PRESIDENT, CENTRAL PENNSYLVANIA CHAPTER ARTHRITIS FCUNDATION LEOPOLD: I am Marx Leopold. I am the President of the Central Pennsylvania Chapter of the Arthritis Foundation. I am a lawyer by training, and formerly was the general counsel of the Pennsylvania Department of Public Welfare. Currently, I serve as a consultant to the Pennsylvania legislative committees concerned with health and welfare issues. On behalf of the Central Pennsylvania Chapter of the Arthritis Foundation, I want to give you an official welcome to the Harrisburg area. My remarks, however, should not be considered to be the official position of any of those committees or of any individual legislator, nor should they be considered the official position of the arthritis chapter with which I am affiliated. We feel honored yet somewhat perplexed by your choice of Harrisburg for one of your national hearings. Honored because I know you are going to only a few areas, but perplexed because, although there is a great reservoir of concern and interest by the people of central Pennsylvania, there is little concern shown by the entities that could help if they indicated a modicum of interest. I refer specifically to the Hershey Medical School and the decisionmakers responsible for the chronic disease activities of state government. 2-21 Harrisburg, Pennsylvania October 14, 1975 Hershey Medical School, which holds itself out as a medical school catering to the needs of the family physician, does not have a rheumatologist on its staff, and does not, so I am told, train students to deal with rheumatic disorders. Within the Department of Health there is a Bureau of Adult Preventative Health Programs with a Divisicn of Chronic Diseases. Yet the budget presentation to the General Assembly for the current fiscal year for that department, bureau and division contains no reference to arthritis or rheumatic disease. Unfortunately, Pennsylvania is not unique. States do little concerning arthritis, and medical schocls generally ignore the problem. Millions of work days are lost in this country due to restricted activity, bed disability or occasional sick days because of arthritis. In addition to disability benefits paid ky the Social Security Administration the country is paying the expense for medical care for arthritis sufferers, yet the National Arthritis Act provides little in terms of monetary incentives to states or medical schools. As much as I dislike saying it, it is undeniable that money establishes priority in health care. We may not be able to change the system of priority setting, but we can work within that system by prividing appropriate funds for health services to arthritics, administered by the states, and by providing funds as incentives to medical schools to teach about a condition that directly affects 20 million Americans. If the country were willing to annually spend $100 per person directly affected by arthritis and related diseases for the purpose of research grants to the states for services and incentives to medical schools to produce practitioners knowledgeable in the field of arthritis, there would be a $2 billion fund which might make the National Arthritis Act really meaningful. Inasmuch as the cost of lost work productivity due to arthritis alone or the cost of direct medical care to arthritics alone more than likely exceeds the cost of such a program, this would be money will spent and for which the country would ultimately secure a return. I know you are directed by the law to establish a long-range arthritis plan. However, without sufficient funds ycur plan will be meaningless. Thank you for giving me the opportunity to present my personal views this morning. LEOPOLD: This is a statement of a person who has been a patient for many, many years, who has been active as a helper to the Arthritis Foundation in the central Pennsylvania area. His name is Norman Strawser. 2-22 Harrisburg, Pennsylvania October 14, 1975 TESTIMONY OF NCRMAN STRAWSER PATIENT-LAYPERSON PRESENTED BY MARX LEOPOLD "Honored guests, ladies and gentlemen, and to the most dedicated and gracious lady I know, Madalon Costellc: "I would like to tell you what arthritis means to me: constant pain 24 hours a day; inability to participate in family activities, sports, travel, etc.; curtailing all activities; yearly trips to the hospital; erosion of life savings; early forced retirement with little or no income; the loss of many friends; and the end of my music career. "What the Arthritis Foundation means to me: In 1964, the late Robert Cook diagnosed my illness as rheumatoid arthritis, informing me that it doesn't kill you, it just makes you wish you were dead. "Through Foundation money, Dr. Cook asked if I would like to be a volunteer for drug studies. My first drug study, I am happy to say, was a drug called Indocin, which is now helping millions of patients, but this takes millions of dollars. "TI continued on drug studies for the next 5 years, many of which failed, but the studies still cost millions of dollars. "At this point, I am more concerned about the very young than for myself. When you see an 18-month-0ld child suffering from a disease with no known cure, then I think the government should appropriate funds for the research of arthritis the same as they do for other diseases. "Ladies and gentlemen, in all the past 11 years every type of assistance that I required was freely given with no questions asked or the amount of money involved mentioned. I am most grateful for this. "nTt is with regret that I am unakle tc be present at this hearing. But once again I am a patient at the Harrisburg Polyclinic Hospital involved in a new technique of surgery. I am encased in a body cast attached to a halo with four screws emkedded in my skull. Without the help of my chief physician, the Lord, Jesus Christ, I know I would not have made it. "If our government would allocate funds for the research of arthritis, it could prevent our young children from having to endure this type of surgical procedure." ENGLEMAN: Thank you. LECPOLD: Thank you on behalf of Mr. Strawser and myself. ENGLEMAN: Any questions from the members of the Commission? I think some of the questions you raised may ke answered by our next witness, Dr. Pfeiffer. 2-23 Harrisburg, Pennsylvania October 14, 1975 SUBMITTED STATEMENT OF MILDRED PFEIFFER, M.D. DIRECTOR, DIVISION OF CHRONIC DISEASES PENNSYLVANIA DEPARTMENT OF HEALTH I am licensed to practice medicine in Pennsylvania, have a master's degree in public health, and am board certified in internal medicine. I am a member of the American Rheumatism Association, a recipient of a Distinguished Service Award from the National Arthritis Foundation and a Governing Board Member, having also served previously as a member of the Community Service Committee and Paramedical Professional Committee. I am a charter memker of the Central Pennsylvania Chapter of the Arthritis Foundation, former president, and continue to serve on the Board of Directors and Medical and Scientific Committee (former chairperson). I also served as the first chairperson of a Pennsylvania Arthritis Coordinating Committee. After engaging in private practice, research and teaching (e.g., Clinical Associate Professor of Medicine, Woman's Medical College of Pennsylvania, currently Pennsylvania Medical College, I was asked, in 1952, to set up a new Bureau of Chronic Liseases for the Pennsylvania Department of Health when that department became reorganized professionally. Since then I have set up planning and other units and have returned to the Division of Chronic Diseases. During this period of time, arthritis has been one of my ccncerns because so little public and private support was given to this common, painful collection of joint, collagen, connective tissues and supporting structure diseases that are painful, crippling, and costly but doc not appear high in "causes of death", like cancer, heart disease and accidents. This is not intended to be a personal recital but is meant to support a point of view as to some needs in the arthritis field today, exclusive of specific basic research areas. I. As one of the national alerters to assist in the passage of the National Arthritis Act, it was gratifying to know that arthritis had become an official part of the National Institutes of Health. As broad in concept as the Act is, from the standpcint of community health and the consumer-patient-family, there needs to ke more specific recognition of state (and local) health departments. National health insurance is not yet here and comprehensive health planning, review organizations, RMO's, primary care centers, and enough specialized rheumatic disease centers are still in the stage of development. The voluntary arthritis agencies are doing noteworthy and useful work, but a few million dollars so raised will not take care of the needs of arthritics or arthritics to be, or the education of those providing services. II. Because arthritis was not generally looked upon as a public health problem in the fifties, I supported the creation of the voluntary arm of public health, the Central Pennsylvania Chapter of the Arthritis Foundation, in order to obtain resources for doing something in the arthritis field (a little less complicated then, since chemotherapy, immunotherapy, enzymes, hormones, surgery, and improved diagnostic techniques were not so advanced and the related collagenous or connective tissue diseases and more subtle systemic diseases related to arthritis, were not generally included in the suksgpecialty of rheumatic diseases). 2-24 Harrisburg, Pennsylvania October 14, 1975 In serving as its volunteer Medical Director, it was possible to plan and initiate programs that could be implemented by the Chapter in cooperation with various units in the Pennsylvania Department of Health, the Medical Societies, the National Institutes of Health, the National Foundation, and the other Arthritis Chapters, Dietetic Association, Health Councils, Bureau of Rehabilitation, Nursing Associations, physiotherapists, social workers, etc. The Chapter itself benefited by the wider contact with the public and special groups in its growth so that now it is carrying the ball and has received an RMP grant on its own. Thus was executed the following: ° Two Governor's Conferences on Arthritis ° A Rheumatic Disease in Industry Seminar ° An educational seminar for nurses, physical therapists, social workers, occupational therapists (with an NIH grant) ° a series of nutrition and arthiritis seminars held throughout the State on a regional basis ° The creation of an Arthritis Coordinating Committee which brought together the then Pennsylvania chapter and representatives of the State Medical Society, State Department of Health, others. A grant from the State Health Department, Division of Chronic Diseases, was made to Dr. Ehrlich, Einstein Medical Center, Philadelphia, for a demonstration, multidisciplinary clinic for the diagnosis, treatment, and rehabilitation of the arthritic patients. This involved social work, nursing, educational and vocational counseling, rehabilitation and home care. It was very successful but had to be terminated because of austerity needs. It served to coordinate the thinking and objectives of the various agencies represented by the Pennsylvania Arthritis Coordinating Committee. Educational materials were prepared or bought and distributed in cooperation with the Arthritis Foundation and the health department. The publications, such as Strike Back at Arthritis prepared by the Public Health Service, were purchased and distributed in connection with home and family care, patient education, as well as to professionals. I and II, then, lay the groundwork for further remarks. The prevalence, incidence, costs, distribution, lack of rheumatologists and centers and relative scarcity of funds for research are well known to the Commission, since the National Foundation has done so well in publishing these national data. Therefore, I will not repeat them. Instead, I should like to briefly refer to some of the activities in Pennsylvania connected with arthritis at the present time. The Regional Medical Programs, of uncertain futures, have awarded grants to the Philadelphia area (project directed from Hahnemann Medical Center), St. Margaret Hospital, Pittskurgh, and to the Central Pennsylvania Arthritis Chapter. These have been, or are being, used to 2-25 Harrisburg, Pennsylvania October 14, 1975 counsel and educate arthritis patients and their families in how to carry out their physician's plans, and to teach self-help. Outreach programs have been set up to teach other physicians, both family or primary, and other specialists, the fundamentals of diagnosis and modern treatment, by a team faculty (rheumatologists, surgeons, radiologists, interns, etc.) going once a week or, at most, once a month, to community hospitals in order to evaluate patients, suggest treatment and to observe results. This is a continuing education program and will help to set up rheumatology clinics or services in hospitals not now having them. It should also be useful in future PSRO relationship. Also, many different types of seminars have been set up for murses and allied personnel as well as physicians in treatment and rehabilitation. The whole field of rehabilitation is emphasized. The medical schools are cooperating. The State Health Department has helped to support some evaluation and rehabilitation at a mid-state community (Williamsport), but has not had the staff nor funds for an expanded program. The Governor has shown interest in naming a state task force on arthritis and the three chapters have cooperated in suggesting possible members, and to focus on the top priority needs in various parts of the state. Research, of course, has had some support at the universities, but this has come mainly from the National Foundation or a branch of HEW. No registry of patients exists, but a grant for this had been arrlied for some years previous. A 1-week 1lectureship in arthritis by an outstanding rheumatologist for Hershey Medical Center, and hospitals in Danville, York, Lancaster, Harrisburg and Hershey has been funded by the Central Pennsylvania Arthritis Foundation from independently obtained funds but no rheumatology clinical unit has been established there. On the basis of the above, I should like to enumerate without detail the needs as perceived from my vantage point up to the present time (excluding specific laboratory or clinical research). (1) Provision of funds directly to state health departments for staff, state and local programs, as evaluated by the department, and for greater coordination and/or awareness of activities in the arthritis field. (2) Assistance in supplying a full range of rehabilitation seminars to all patients and as early after diagnosis as possible. This includes children and adults cof all ages. (3) Training for more personnel and existing personnel in teaching patients and families and providing the physical and occupational therapy and home care needed, especially for nurses, skilled home health aides, etc. (4) Support of outreach teaching programs from medical teaching centers to community hospitals, HMO's, neighborhood health centers, community nursing associations, etc., in order to develop rheumatology expertise and interest in physicians. 2-26 Harrisburg, Pennsylvania October 14, 1975 (6) (7) (8) (9) (10) (11) (12) (13) (14) Develop statewide coordinating committees in order to facilitate the flow of information as tc needs, projects, and plans. Staff time is important to keep such a group useful. Assist in the development of rheumatology services and teaching in all medical (including ostecpathic) schools, including the new Pennsylvania State University Medical School at Hershey. Subsidize fellowships in rheumatology for physicians so that more will concentrate on getting, using and sharing new knowledge or applying more broadly their present knowledge. Continue to investigate ways to find arthritis that is asymptomatic or of finding individuals who have some form of arthritis but have not been included in the mainstream of what can really be done today to help them. Counseling and follow-up are important. Widespread use of media and other informational channels, including public forums, to include the awareness of the public regarding self-help, recognition of personal or family needs, the meaning of the treatment can helr to obtain definitive help. Volunteers can also help here. Convening of leaders in insurance, industry, agriculture, labor and rehabilitation to provide more coverage for arthritics, job training and placement, home and at work support. Communication with public providers (Medicare, Medicaid, VA, potential national health insurance representatives, EMO's, PSRO's comprehensive health planning agencies, hospitals, medical societies, etc., so that the kroad needs, over a considerable length of time, and involving the cost of diagnosis, continued treatment and follow-up are given attention via the hospital bed, outpatient department, health center, occupation-connected medical department, schools, transportation means, home care, and underwriting of costs are all included in community or regional planning and implementation (not all can afford $200 for just one muscle biopsy alone). Develop consumer advocates to assist the patient and family, and to listen to him, in recognizing self-needs and sources of help, and in bringing to the attention of elected representatives the need for public, social, political and economical concern for this leading group of costly disorders. Support the development of special centers equipped to study the newer intersystem relationships of disease and wellbeing, as exemplified by chemotherapy, immunotherapy, etc., as well as specific mechanical-electrical aids and surgery. Encourage group projects utilizing the voluntary arthritis groups and those associated with puklic health and preventive medicine. 2-27 Harrisburg, Pennsylvania October 14, 1975 (15) (16) 17) (18) Emphasize to preventive medicine, community medicine, or public health departments, and puklic health schools, that chronic disability need not be complete, needs specified attention in quantity and quality, may ke prevented or arrested, and the quality of life improved for over 50 million residents of the U.S.A. Use of "carrot" or "club" psychological approach to state and local departments of health so that they give rheumatic and allied diseases a higher priority. Money seems to be the answer and is proven by the puklic still supporting emotionally the diseased or injuries which affect them, e.g., cancer, heart disease, lupus erythematosus, epilepsy, Huntington's chorea, multiple sclerosis, hemophilia, klindness, diabetes, Tay-Sachs disease, sickle cell anemia, Women Against Rape, Women's Lib, etc. The categorical approach is still with us and has consumer meaning in spite of comprehensive, esoteric, objective planning and primary care notwithstanding. Encourage PSRO, utilization review groups, health service area councils, hospital and nursing home licensure agencies to include specific standards and evaluation of how rheumatic disorders are cared for in continuum on a community basis, and not just within the walls of one facility. As is encouraged in the National Cancer Social and Rehabilitation Plan covering 17 comprehensive cancer centers in the U.S.A., assist in setting up WATS lines or other mechanisms for providing accurate, fast information tc patients or other public as to the value of certain remedies, safety and accuracy of tests, referral to adequate quality sources of diagnosis, treatment, rehaktilitation, and sources of assistance for social, emotional and financial problems related to the rheumatic diseases. With time, comprehensive, on-line information centers, with proper training of personnel, could ke set up for many chronic illnesses as part of public health education, continued education and self- help toward personal health maintenance. TESTIMONY OF MILDRED PFEIFFER, M. D. PFEIFFER: Members of the Commissicn: It is a priviledge for me to be here and to try to present the needs >f our regions as I perceive them. I am a physician, and I am currently the Director of Chronic Diseases at the State Health Department, but I have also been very active and involved in the Central Pennsylvania Chapter of the Arthritis Foundation. I have tried to work with them all these years, but, unfortunately, as has been already stated, we have had very little in the way of specific budgetary or state support in our own department. The needs and recommendations, as 1 see them, are: 2-28 Harrisburg, Pennsylvania October 14, 197% (1) (2) 3) 4) (5) (6) “) (8) (9) (10) (1) Provision of funds directly to state health departments for staff, state and local programs as evaluated by the department, and for greater coordination and cr awareness activities in the arthritis field. Assistance in supplying a full range of rehabilitation seminars to all patients, and as early after diagnosis as possible. This includes children and adults cf all ages. Training for more personnel and assistant personnel in teaching the patients and families and providing the physical and occupational therapy and health care needed, especially for nurses, skilled home health aides, and so on. : Support of outreach teaching programs for medical teaching centers, for community hospitals, HMO's, neighborhood health centers, community nursing associations, and so on, in order to develop rheumatology expertise and interest in physicians. Develop statewide coordinating committees in order to facilitate the flow of information as to needs, projects and plans. Staff time is important to keep such a group useful. Assist in the development of rheumatology services in teaching in all medical (including osteopathic) schools, and including the new Pennsylvania State University Medical School at Hershey. Subsidize fellowships in rheumatology for physicians so that more will concentrate on getting, using and sharing new knowledge or applying more broadly their present knowledge. Continue to investigate ways to find arthritis that is asymptomatic or of finding individuals who have some form of arthritis but have not been included in the mainstream. A lot can really be done today to help them. Counseling and follow-up are important. k Widespread use of media and other information channels, including public forums, to improve the awareness of the public regarding self-help, recognition of personal or family needs, the meaning of the treatment, and help tc cktain definitive care. Volunteers also can help here. convening of leaders in insurance, industry, agriculture, labor and rehabilitation to provide more coverage for arthritics, job training and placement, home and at work support. Communication with public rroviders, Medicare-Medicaid, VA, potential national health insurance representatives, HMO's, PSRO's, comprehensive health planning agencies, hospital and medical societies, so that the broad needs over a considerable length of time and the ultimate costs of diagnosis, continued treatment and follow-up are given attention via the hospital bed, outpatient department, health center, occupational-connected 2-29 Harrisburg, Pennsylvania October 14, 1975 (12) (13) (14) (15) (16) (17) (18) medical department (that is in industry) schools, transportation needs, health care, and underwriting of costs are all included in community or regional planning and implementation. And certainly not everybody can afford $200 just for one muscle biopsy. Develop consumer advocates to assist the patient and family and to listen to him or her in recognizing self-needs and sources of help and bringing to the attention of elected representatives the need for public, social, political and economical concern for this leading group of costly disorders. Many arthritics do not seek or continue under long-term care because they cannot afford it. Support the development of special centers equipped to study the newer intersystem relationships of disease and wellbeing as examplified by chemotherapy, immunotherapy, etc., as well as specific mechanical-electrical aids and surgery. Encourage group projects utilizing the voluntary arthritis groups and those associated with puklic health and preventive medicine. Emphasize to preventive medicine, community medicine or public health departments and puklic health schools that chronic disability need not be complete, needs specified attention may be prevented or arrested and the quality of life improved for over 50 million residents of the U.S.A. Use of carrot or club psychological approach to state and local departments of health that they give rheumatic and allied diseases a higher priority. Mcney seems to be the answer and is proven by the public still supporting emotionally the diseases or injuries which affect them; for example, cancer, heart disease, lupus erythematosus, epilepsy, Huntington's Chorea, multiple sclerosis, hemophilia, blindness, diabetes, Tay-Sachs disease, sickle cell anemia, Women Against Rape, "Women's Lib," etc. The categorical approach is still with us and has consumer meaning in spite of comprehensive, esoteric, objective, planning and primary care notwithstanding. Encourage the PSRO, the utilization review groups, health service area councils, hospital and nursing home licensure agencies to include specific standards and evaluation of how rheumatic disorders are cared for in continuum and on a community basis and not just within the walls of cne facility. As is encouraged in the National Cancer and Social Rehabilitation Plan covering 17 comprehensive cancer centers in, the United States, assist in setting up WATS lines or other mechanisms for providing accurate, fast information to patients or other public as to the value of certain remedies, safety and accuracy of tests, referral of adequate quality sources of diagnosis, treatment and rehabilitation and sources of assistance for social, emotional and financial problems related to the rheumatic disorder. With time comprehensive, on-line information centers 2-30 Harrisburg, Pennsylvania October 14, 1975 with proper training of personnel, could be set up for many chronic illnesses as part of health education, continued education and self-help toward personal health maintenance. (19) Encourage the development of a governor's task force on arthritis for Pennsylvania. (20) Develop data banks of use to the consumer and with privacy of information regarding the patient. (21) Expand support for basic research in rheumatic and allied disease. ENGLEMAN: Any questions from memkers of the Commission? Yes. MELICH: I am particularly interested in your development of consumer activity programs. How would you do that? How would you recommend that? PFEIFFER: Well, there are a numker of ways that this might be provided, but I think the one starting point would ke the kind of a project that has been started in my own chapter. There could be members of a local council or a local health department--and this certainly should be done on a local basis, even though, for example, in Pennsylvania we have a governor's number where anybody can call in free, where anybody can call for information, lodge a complaint or get assistance on a state-wide basis. But I think in terms of having individuals in some type of agency setting, it could vary. The health department would Le a perfectly possible place if there are health departments around. The voluntary arthritis agencies would be a source. local planning agencies would be a source. If people called in and said they couldn't afford a certain type of treatment, or they didn't know where to go for physical therapy or rehabilitation, or they couldn't find a job because they were being discriminated against on the basis of having arthritis, or they couldn't get insurance, the person on the other end of the line would be able to put that individual in touch with somecne who could help him. It's somewhat related to the WATS line idea where trained individuals are given quite a broad spectrum of information, and then they write down the questions they can't answer and see to it that the proper authority furnishes the inquirer with this information. MELICH: (Inaudible) PFEIFFER: Well, and such advocates tc lead the activists in terms of increasing the amount of awareness both in the political sector as well as in the community in terms of what arthritics need and various kinds of concerns. 2-31 Harrisburg, Pennsylvania October 14, 1975 MELICH: Yes. I was wondering--you're talking sort of as a hotline, in other words, (inaudible) particular places and other additional information. PFEIFFER: That's one form, but, of course, there are many other ramifications, that is, short of extreme activism. ENGLEMAN: Dr. Sharp. SHARP: Dr. Pfeiffer, I wonder if ycu could give us your own feelings about what one recommendation or program you believe would have the greatest impact on the care of the arthritic patient in central Pennsylvania? PFEIFFER: So far as the care of the patients are concered, I believe that the greatest deficit is in the area of providing home help, particularly physical therapy, occupational therapy, and seeing that transportation is provided, and getting these individuals also under the care of a rehabilitation center. We have one rehabilitation center at Bloomsport which is very good. And in my own program we have given them some money for scope evaluation and rehabilitation. And some of that mcney goes (inaudible) in the community and helps provide some help for arthritics. But being in a rural area, once a patient goes home, that's the end of it. There's nobody to follow up a person into the home to provide education or family support. SHARP: In terms of really changing the situation, though, dramatically, I guess what I was getting at is, do you feel that establishing a rheumatic disease unit at the medical center or bringing in more rheumatologists as leaders in this region, do you feel that that would be the most important first move, or do you feel that the non- rheumatologists, other professionals could go ahead and make considerable progress in this region without having that type of leadership? PFEIFFER: Well, I don't think it's a question of either/or, and one can't get these other helpers overnight either. So I think the profession itself needs to be upgraded and made more aware of what the potential is for the treatment, and for earlier treatment of p~tients with arthritis, and that they, in turn, could help to meet certain demands with other paraprofessional personnel. ENGLEMAN: Thank you, Dr. Pfeiffer. Let's go on. Mr. Ballangee? 2-32 Harrisburg, Pennsylvania October 14, 1975 TESTIMONY OF JAMES M. BALIANGEE CHAIRMAN, EASTERN PENNSYIVANIA CHAPTER ARTHRITIS FCUNDATION BALLANGEE: Thank you, Dr. Engleman. My name is James M. Ballangee. I am the chairman and president of a large industrial and utility corporation in the Philadelphia area, and I am Chairman of the Eastern Pennsylvania Chapter of the Arthritis Foundation headquartered in Philadelphia. I should like, however, to make my remarks today from the viewpoint of business and industry and from the rersrective of one who has been afflicted with rheumatoid arthritis fcr more than a dozen years. I take this direction because I know in the course of your hearings across the country you will hear the viewpoint cf many of those from local chapters of the Arthritis Foundation, and I seek to avoid some redundancy in what you must necessarily hear in the course of these hearings, and also because so many of our leading physicians have been active in our Arthritis Foundation in Philadelphia, and leaders in the country--indeed, you've already heard from Dr. Hollander--and Dr. Tourtellotte and Dr. Ehrlich will be here later today, as I understand, to make their statements. It seems to me that one of the most overlooked aspects of arthritis, which has been alluded to by a speaker earlier this morning, is its effect on the productivity of labor and management in our industrial system. It's strange to me that the emphasis in our local foundations, indeed, even in this Commission, avoids the kusiness aspect: rheumatoid arthritis and arthritis generally, in all its forms, has just been left to the rheumatologists and the members of the Commission. I think business and industry need to be involved as they are in so many other programs. It's strange to me because the founder of our Arthritis Foundation is one of the great business leaders, at this stage of his career, in this country. The chairman of our national chapter is a top officer in one of the major investment banking firms on Wall Street. And there are business people involved in various chapters, not as many, I think, as we need. And I think the reason is we have not pcinted out to them their loss. I've never been made aware of any study--despite the fact that people say "1 in 11" or that there's 20 million--any specific study that tells us how much productivity our nation is losing as a result of the debilitating effects of the various forms of arthritis. Even with the highly expert treatment that I continue to receive, I could not, were I so talented, be productive as a typist, a surgeon, a musician or in any number of other lines of work. Fortunately, I happen to have a position in which I can maintain my productivity. I hope so. At least the stockholders seem to think so each year. 2-33 Harrisburg, Pennsylvania October 14, 1975 How many are there in that situation? I think we need to know. What is the cost, specifically, to this country, in lost production, lost wages and lost taxes? I believe the dcllar amounts we are losing are substantial. I think we need to know for two reasons: 1. Once the corporations understand the dimension of the loss to them, I believe they will put strong emphasis on company programs for arthritics. They continue, as we do in our company, to support programs related to alcoholism not only kecause lives are saved, but it's strongly because costly absenteeism in industry is significantly reduced. And I think the same thing could be proven for arthritis with a sufficient study, and we could get support. We won the award--in a hotel of this same name in Harrisburg in my company 2 years ago which I was privileged to accept--for employment of the handicapped. Arthritis was never mentioned at that time--never heard of. And I know we have a number in my company--in various companies, other than myself, and that we're losing productivity and time. But there's never been a study in my company, or any other than I know of, that specifically tells us what it's ccsting us. 2. I suspect that the loss of wages and taxes is enormous. If that is the case, then this Commission would ke in a position to demonstrate to the Congress that any appropriations--whether for education, for treatment or for research--will almost certainly ke returned over and over again in the form of taxes. But no matter how valid my reascning may prove to be, we still nf our company's Criss Award and continues with us as a consultant in this program. Your outlined activity for the near and long term is impressive, but Jue to a slightly different perspective we feel it may be desirably expanded. We would ask your consideration of a broadening of your future activities to include: (1) The adoption of unequivocal positions with public and private disakility entities opposing those who seek to pervert the process of financing genuine disakilities. (2) Promoting the use of the forthcoming Comprehensive Arthritis Centers as definitive determination points of the existence and degree of claimed arthritic disability. This work, made available to both public and private entities could become the greatest guarantee of properly and appropriately spent monies. Protection of the legitimately disabled from those who would seek to pervert the intent of kenefit programs is something you can help greatly with - and - we ask that help. (3) Finally, we need to find some way to develop information to go with our numerical statistics to tell us about the severity of the arthritis or the degree of disablement as well as the treatment needed. For example, it is not too helpful, and may be misleading, to find and emphasize in publicity releases that there are 20 million people seeking nedical care for arthritis, of whom 12 million have osteoarthritis. How nany of the latter really need any significant amount of treatment? How iisabled are they really? How many are housewifes over the age of 55 or 50 who are not otherwise employed and are quite akle to do their rousework? We need a better breakdown ky age group and employment status as well as severity and need for treatment. ° TESTIMONY OF ROBERT S. ICNG, M.D. LONG: Mr. Chairman, and members of the Commission: I am Dr. Robert Long, from Omaha. I am an internist in private practice there, with a particular interest in arthritis. I am also a part-time Associate Medical director and consultant for Mutual of Cmaha. In the latter capacity, I am 1lso a member of the Council on Consumer and Professional Relations of the 2-366 Denver, Colorado October 28, 1975 Health Insurance Association of America. That is a trade association of 300 of the largest health insurance companies. I want you to know that my company, Mutual, as well as other companies in the industry certainly endorse and applaud the work of this Commission. I think you know that the industry, through its individual companies, has always supported the work of the Arthritis Foundation and arthritis clinics, both on the local and the national level. I want to give you a quick illustration of something going cn now in that regard. We have what is known as an Insurance Medical Scientist Scholarship Fund, which came into existence about three years ago, at akout the time NHI had to drop a good many of many of its M.D. and Ph.D. scholarships for lack of funds. This fund that we have organized in the industry now is. supporting students in the M.D.-Ph.D. scholarship programs at various universities. As most of the members of the Commission know, I'm sure, these are men who are committed to a lifetime of basic research and teaching. Of course, a fair number of these will wind up in rheumatology, as well as in other areas and endeavors. I want to report to you that the situation with respect to arthritics and insurance has improved remarkably in the last 10 years. This has come about largely through the increased availability and widespread use of group insurance mechanisms. Again, this has become more widespread so that the great majority, or virtually all, employed persons, in groups of five or more, are covered by some kind of hospital, medical, surgical insurance, and at least limited disability income insurance. This insurance is not only more widespread, but the aggregate benefits have been increasing from a former average of around $10,000, now to in excess of $20,000 on the average. Many plans are now going at $50,000, $100,000, and even $250,000 aggregate benefits. As you know, this is important under conditions like arthritis, particularly rheumatoid, which is a long and expensive illness, as you've heard here this morning many times. Additionally, disability income protection has now become more widely available through the group mechanisms. Within the last six years, the increase has keen in coverage for long-term disability. I am speaking now of something that goes for the working lifetime of the insured and his dependents. This has increased from more than 4 million families to more than 16 million families, which is an appreciable increase. There remains, of course, much to ke accomplished. I would like to mention one suggestion, and that is that the private insurance industry is ready, willing, and able to undertake the insuring of uninsurable persons, of unemployed persons, and of the poor and near poor. To accomplish this remains only for enabling legislation at the state level. Through the formation of pools for each of these groups of people, which, of course, would = include many permanently crippled arthritics, this could be accomplished. We believe that this can be accomplished much more economically and more efficiently by that mechanism than going through the Federal route entirely. We would like to keep the control close to home. Traditionally, insurance regulation has keen carried on by state insurance 2-367 Denver, Colorado October 28, 1975 departments, and is now being regulated, to a great extent, at the Federal level. I want to call attention to one factor, which is something new and different that you've not heard here this morning, I think; that is, that there is a significant problem in the insurance mechanisms, both in the Social Security Administration and in private industry, with respect to the abuse of the diagnosis of arthritis. This may come as some surprise to you, but Social Security figures are roughly the same as those of private industry. We have had, in Sccial Security, for example, in the last decade a 258 percent increase in Federal disability applications, and a 321 percent increase in ultimate awards, but only a 48 percent increase in eligikle people. You know, I'm sure, from the statistical data, that a third of this disability is in the field of osteoarthritis. I am not speaking of rheumatoid arthritis, which presents no real problem either in Social Security determinations or in private insurance. This, as you know, is more easily and readily measured objectively, and it's quite apparent, the degree of disability that these people have. ; With respect +0 osteoarthritis, which, as you know, is characteristically a disease coming on and affecting the middle-aged, and apart from the traumatic arthritis, which was mentioned earlier, a disease of getting older and stiffer: it's a little harder to get up and get going in the morning. A surprising number of these people in their middle life, in their late forties, early fifties, and late fifties, are applying for and getting Social Security disability on the basis of osteoarthritis of the spine, based many times on an x-ray picture and subjective symptoms of pain. This occurs also in private industry, in which these people then, by combining their disability from their group insurance, plus their Social Security, have a pretty good income; sometimes, tax-free, about as much as they had when they were working. This is a problem I think you ought to be aware of because it's a very real problem. If it gets very much bigger, the private insurance industry may have to retreat, to some extent, in the underwriting of such cases, as far as disability income protection is concerned. I think that one place that your arthritis centers could be a very real help in this would be in the evaluation of these people, both for government agencies and for private industry, to determine objectively, scientifically, and with the force and support and reputation and prestige that such a center would have, the degrees of disability that these people have and what their needs truly are. I don't want to make a mountain out of that problem, but I want you to know that there is a very significant and real problem in this. One other thing that we need is some more and better statistics, and I think you've heard that repeatedly this morning. It's not too much help to know that there are 20 million people under treatment for arthritis, and 12 million of them have ostecarthritis. How many of those with osteoarthritis are really sick? How much treatment do they really need? How many of them are just housewives and not employed? It might be a very modest or a minimal amount. Some of them, I'm sure. So I think we need 2-368 Denver, Colorado October 28, 1975 to know not only how many there are, kut how sick are they, and how much care do they need, and which ones need the care? I think this is something , that can come out of our arthritis research centers. Thank you very kindly for your attention. ENGLEMAN: Thank you very much, Dr. Icng. BATCHELOR: I would 1like to acknowledge the usefulness of this presentation and to place it against the kackground of the expressions of interest and concern in some of the consultant groups working with the’ commission. The need for a forum in which there can be exchange between concerned medical groups, such as we have associated with the Commission, and knowledgeable people in the insurance industry is a great one. Any background information that you could provide us to indicate where these avenues are located and how we can gc akout fostering this exchange would be very much appreciated. LONG: There is some of that information in the written material I gave you, and I will supply you with more. BATCHELOR: Thank you very much. ENGLEMAN: The referral of patients to the centers, I believe you suggested, for evaluation of their disability, this is done now by private, well-qualified physicians, is that not so? LONG: Yes, to some extent, but not nearly to the extent that it is needed. ENGLEMAN: Let us go on now and hear Dr. Walter Norton. TESTIMONY OF WALTER L. NORTON, M.D. CLINICAL DIRECTOR, INFLAMMATICN AND ARTHRITIS MERCK SHARP ANC DOHME RESEARCH LABORATORIES NORTON: I am Dr. Walter Norton, presently the Clinical Director for Inflammation and Arthritis, with Merck Sharp and Dohme. I am a trained rheumatologist. I have been in a private practice of rheumatology in a small community, and I have taught and was the chief of the section on clinical immunology and professor of medicine at the University of Tennessee. As an industry representative, I am grateful for the opportunity to testify on the question of clinical centers in the National Arthritis Plan. Testimony before this Commission and during previous hearings on the National Arthritis Act has clearly established the significance of arthritis in terms of human suffering, as a national and individual economic burden, and as a scientific enigma. 2-369 Denver, Colorado October 28, 1975 Merck Sharp and Dohme Research Laboratories, like other representatives of the pharmaceutical industry, has a long history of involvement in the arthritis field, and is actively engaged in clinical and basic research in arthritis. Because cf our extensive experience in clinical trials, and our ongoing attempts to develop effective therapeutic agents for rheumatoid and other forms cf arthritis, we feel that it is appropriate to comment on the need for clinical centers, and we feel that we can do so from an important vantage point within the national and international framework of activities directed towards the control of rheumatoid arthritis. Several types of compounds are known to have an ameliorating effect on rheumatoid arthritis. They include aspirin and other salicylates, indomethacin and phenylbutazone, with a large number of related newer compounds, such as ibuprofen and naproxen, referred to as nonsteroidal anti-inflammatory agents, corticosteroids, D-penicillamine, soluble gold salts, antimalarial compounds, and cyclophosphamide and other "cytotoxic" or "immunosuppressive" agents. It is fairly typical in the history of medicine that effective treatments have preceded the basic understanding of disease processes or an understanding of the mechanism of action of the treatment, and it has been this way in the field of arthritis. Of the classes of compounds referred tc above, only one, indomethacin, followed by the other nonsteroidal anti-inflammatory agents, was developed "rationally," in the sense that it began in the laboratory and progressed in a logical fashion to its predicted clinical application in rheumatoid and other forms of arthritis. Most cf the other types of compounds were developed for other applications. Gold salts were first used in the treatment of tuberculosis, D-penicillamine in Wilson's disease, the cytotoxic agents in cancer, and chlcroquine and related compounds in malaria. These drugs were found subsequently to have antirheumatoid arthritis activity. Corticosteroids were developed during the second World War for a predicted use in shock. Their partial synthesis was achieved by Kendall of Princeton in 1944, and in 1946 hydrocortisone was synthesized by Sarett in the Merck research laboratories. The application of steroids in rheumatoid arthritis was based on the incisive clinical observations of Hench and others at the Mayo Clinic. For these activities, which resulted from support by a private academic institution, a private medical foundation, the Federal Government, and industry, a Nobel prize was awarded in 1956 to Hench, Kendall, and Reichstein. It should be emphasized that no matter how much basic research and theoretical justification, no matter how profound or superficial our understanding of arthritis, we inevitakly come back to the patient to find the answer to efficacy of both the new and the old treatments, both medical and surgical. Hence, irrespective of the origins of new drugs and treatments, whether scientifically designed or not, they must finally be tested in human, disease. 2-370 Denver, Colorado October 28, 1975 This is not to belittle the role cf laboratory research in gaining control of rheumatoid arthritis. It is to recognize the fundamental clinical orientation of therapeutic research and to appreciate the necessity for a balanced approach to the problem. It is also an attempt to specifically recognize the difficulties in doing good clinical assessments in arthritis. Contributing to the difficulty is the fact that agents which affect rheumatoid arthritis may take months to manifest their beneficial effect. This delayed onset of response probably accounts for some of the difficulties in the evaluation of Lkoth gold and D-penicillamine in rheumatoid arthritis. D-penicillamine was first found effective in small studies in the United States as early as 1962, although several academic centers subsequently failed to confirm this effect. It was only by large- scale, long-term studies abroad that it was finally determined to definitely be effective. The extraordinary difficulty in determining treatment efficacy in rheumatoid arthritis is also illustrated by the history of the Combined Clinics Committee in the United States, which was described during the hearings on the National Arthritis Act. The evaluation of gold salt therapy, a major treatment form in rheumatoid arthritis, resulted in only 24 patients completing a trial lasting two years. To compound the problem further, the therapeutic agents now used in rheumatoid arthritis are, without exception, capable of serious adverse side effects. Because of the asscciated dangers and difficulty in management, antimalarials are rarely given, cytotoxic agents are given to only a small percentage of patients, and D-penicillamine and gold are given only under very carefully controlled conditions. Because of the serious problems, all of these agents are generally restricted to the use of specialists. Add to these facts the personal Lkurden of pain, disability, and deterioration of the quality of life for many of the individual patients; we may begin to appreciate the degree of difficulty in implementing improved management of rheumatoid arthritis. In accord with this view of the arthritis problem, we feel that strong clinically oriented centers must be a fundamental part, if not the keystone, of the comprehensive approach to arthritis. Such centers must provide continuing care, in addition to being referral centers. They should be judged on the excellence of their professional clinical care and their akility to meet the personal needs of their patients. These centers, if they achieve excellence in the quality of care, will become powerful instruments in providing direction and ethical assessment of the fruits of arthritis research. A national network of centers would provide a new and greatly needed resource which is now lacking. These centers should be free to interact with voluntary agencies, industry, and other involved segments of society. Such a network would be able to evaluate its experience and convert that experience to ethically designed tests of the value of ongoing 2-371 Denver, Colorado October 28, 1975 management and assessment of new modes cof therapy, as well as providing a much needed basis for defining the epidemiology of arthritis. Such centers would hopefully be efficient in minimizing patient risk while promoting continued improvement in the techniques, drugs, and surgical approaches to arthritis. If successful, they would make an important contribution to the reducticn of the suffering and economic burden of rheumatoid arthritis and related diseases. Thank you. ENGLEMAN: Thank you, Dr. Norton. Lo you want to make any comment with regard to the statements that were made by Mr. Poole as to how we might speed up drug testing in general? NORTON: It's a very complex issue. I think that the one I've touched on here is perhaps the one that's most approachable, and that is by having highly skilled clinical centers in which compounds can, in fact, be tested under well-controlled conditions. As it stands now, there are really surprisingly few competent places where drugs can be tested on any sort of a volume basis. ENGLEMAN: Is this going to accelerate approval from FDA? NORTON: I think it would. I would suppose it would have to. If, in fact, good studies can be completed faster, then this must inevitably, I would think, lead to a quicker approval. It would also, I think, allow a participation by the clinical scientist, which, I think, would also be reassuring to the FDA. Rather than locking at the manufacturer as an enemy, he would be looking at the clinician as a scientist. ENGLEMAN: Yes, Dr. (inaudible). VOICE: In relation to what you've just been saying, I'd like to go back to a question that I asked much earlier in the morning, and I think it really wasn't answered. In general, it has to do with what I think would be the tremendous cost involved in a large number of centers, even in a modest number. When you get into some core support for administrative staff, some small amount of funds for early research, beginning research, for example, and then when you get into training, continuing education of physicians, patient education, public education, and allied health training, and so on, you get up into a tremendous cost figure. Of course, if clinical research is going to be a significant part of that, why then there is the whole matter of the care of the patient while under study. Obviously, I think the Federal Government--the Appropriations Committees Of the two houses of Congress are just not going to provide the total cost. There isn't that much money in the U.S. Treasury, I don't think, hardly, to be exaggerative. What do you think about the sources of cost for all of these? Can we look to state governments for help? Can we look to local communities? Can we look to private sources of income to any significant degree? Finally, to what extent can or should drug companies contribute to the cost of these rather expensive but very important--I agree with you on their great importance--clinical trials of new drugs? 2-372 Denver, Colorado October 28, 1975 NORTON: I'm not making any plea that the funding of clinical trials be changed. At the present time, the drug industry spends approximately, I believe, $160 million a year on clinical trials, which is a considerable sum, and this is not an attempt to shift that burden. What I'm suggesting is that this could be done more efficiently, faster, and with greater safety for patients if it were formatted by a network of clinical centers which were competent to undertake this type of study. I don't envision that as necessarily requiring enormous sums from the Federal Government. The funds ordinarily paid for health care would, obviously, support a great deal of this. The additional costs would be related, really, in establishing the format, establishing the responsibility, and, of course, there would be costs involved in getting competent people in these centers. But, so far as funding the study, per se, I wouldn't imagine that there would be any change in that. VOICE: So, in response to the broader aspects of my question, you would look to multiple sources for funding; and, when it comes to direct clinical trials, you would 1look to improved cooperation between the universities and medical centers and cther institutions that would have such centers--with the drug companies in there--and that they would continue to support these activities? NORTON: Yes; certainly. The drug companies would continue to support clinical research, hopefully, in an optimal setting where the results would be more desirable and more reliakle than they now are. VOICE: Thank you. NORTON: Could I make one other comment? ENGLEMAN: Yes. NORTON: I would also 1like to emphasize for the Commission the very strong impression that at this time it is very difficult to get good evaluation of drugs, and I think the examples that I gave are valid ones. It took 13 years to determine that C-penicillamine had an effect in arthritis after the first positive rerort. I think that it is conceivable that someone could find a very effective drug in rheumatoid arthritis, and it could be missed under the present circumstances. ENGLEMAN: Mr. Poole. POOLE: Just one more comment from me. I concur with what Dr. Norton has said. I also concur with what [Cr. John Ward said this morning, earlier, and I think the two opinions klend very well. We would not like to go to so many diagnostic centers that we would cripple the individuals that were working within those centers, or by not being able to properly fund them. The good criteria for a diagnostic center should not be compromised ‘in any way, and we should not go so far in the division of funds that we do cripple those centers. I think Dr. Ward's statement and Dr. Norton's statement blend very well. VOICE: You are saying, "Keep the standards high." 2-373 Denver, Colorado October 28, 1975 POOLE: "Keep the standards high," yes, sir. ENGLEMAN: It is my pleasure now to call on Mr. Porter Nelson. TESTIMCNY OF PORTER NELSCN CO-CHAIRMAN GOVERNMENT LIAISCN COMMITTEE ARTHRITIS FCUNDATION NELSON: Thank you, Dr. Engleman, and members of the Commission: I just first want to say how much we all appreciate the time that you people are taking to hold these meetings across the country and in your deliberations. I know that it's a great personal inconvenience to many of you to make these trips and to spend this time, and that you're all taking time away from your own professions, and so on. We, all of us who are interested in arthritis, are deeply grateful to you for this. We're very hopeful that when your report reaches Congress it will be well received, and that we can move on in many of the areas that have been discussed here today. I am the Co-Chairman of the Government Liaison Committee of the Arthritis Foundation, and we have an adjunct, which we call the Arthritis Volunteers. We are not technicians, or anything like that. We are merely citizens. We were very much interested in seeing the National Arthritis Act passed, and we worked hard in our local areas to make sure that it did pass last year. As you know, it squeaked through right at the very end of the session. It had us all very worried that we were going to have to wait another year, and that we might get fouled up this year and not even get it through. So, when the Act was passed, we were very, very happy, and we thought it was a big step forward. Obviously, it was because if it hadn't been passed, then you people would not be together as a Commission; you would not be holding these hearings; we would not have the benefit of these excellent discussions and presentations that we've had today covering almost the whole field of arthritis. I think ‘one thing that becomes evident as we go along here is that it's a complex problem; no question about it. The one thing that I hope is not going to be a hindering factor is the lack of funds. It has been pointed out here by several people that we don't have the funds now. All we have is the National Arthritis Act which authorized the funds, but they have to be appropriated. If we don't get the money under the next appropriations bill and in succeeding years, then everything that this Commission has dcne, or most of the things that this Commission has done, or will have done, is going to go right down the drain. So, that's where we come in, the Arthritis Volunteers. I might say, before I comment on that, that when I first became interested in this, it was as a result of hearing Dan Button, who was then head of the Arthritis Foundation, make a talk to our local chapter here, in which he indicated that funding at the Federal level for arthritis at that time, this was several years ago, was actually declining rather than increasing. In addition to that, of course, the inflation was robbing the 2-374 Denver, Colorado October 28, 1975 dollar of its purchasing power, so the scope of the programs was actually going down instead of up. This came as a great shock to me kecause I had assumed, not knowing any better, that we were all dcing everything we could to find the answer for arthritis, and that it was merely a fact that we were up against a very stubborn problem. I didn't realize that we weren't really doing everything we could. So what came into my mind at that time was sort of a Manhattan-Project-type of approach. You recall, during the war, when we were trying to develop the atom bomb, the Manhattan Project was started, and nobody even knew it was going on. Put it was an all-out scientific effort to solve the problem of the atom komb, and it was solved. We have a problem here which, of course, is not perhaps comparable to the problem we had during war time, but from all the discussion today it's obvious as to how broad a problem it is, and how many people it affects, and how it creeps into the lives of so many, many people in the United States and all over the world, for that matter. To me, I think if we do anything less than an all-out effort, we're not doing justice to the problem. So I'm very, very concerned that we get the appropriations in Congress, and that we get adequate funds tc do everything that can be reasonably done to attack this problem not only in the field of treatment, but also primarily, in my mind, in the field of research. If we get the answer to rheumatoid arthritis, and in my own mind I've felt that there is an answer to it, then a lot of the proklems we're talking about are going to fade right then and there. So research, to me, is the thing that we really should be going on. But, on the other hand, let's face it. It doesn't make any sense to sit around when we know how to treat people with arthritis already and not bring the highest state of the art to all people everywhere within the limits of our akility. So what we really have, in addition to a question of funding, is a question of execution. If we had the funds immediately, how would we do it? Well, we've already heard today how we're lacking in trained research people, we're lacking in trained rheumatologists, and so on. It isn't something that could happen overnight, kut it is something that could happen much faster than it's happening now if we would devote more funds to it. Now what I'm concerned about, I'll say it again, is that our organization, representing, really, the citizen, you might say, is standing by. We're waiting for the Arthritis Commission to make its report, and then we want to know what we as citizens should do to bring this report, to bring the results of this study, to the attention of the people who can do something about it; primarily, that would be Congress. That's what we did last year when we, through our organization of Arthritis Volunteers clear across the country, worked to call to the attention of our Congressmen and our Senators what a serious thing arthritis is. You would be amazed, or perhaps you wouldn't because most of you are familiar with arthritis. Let's say the average person would be amazed at 2-375 Denver, Colorado October 28, 1975 how rudimentary a knowledge many of our Congressmen and Senators had of arthritis until we brought it to their attention. And it was through calls, discussions, and so on, on a gerscnal basis that we were able to, I think, get the support that was necessary to get the bill through Congress last year. Now, we are a volunteer organization, and we're all over the country. Our headquarters happen to be here in Denver. We have some very dedicated people here in Denver who have been giving of their time. We are strictly volunteer; nobody gets paid for anything, not even his own personal expenses when he's following this thing through. Everybody across the country has just done it because he wants to see this problem solved, and he's convinced it can be solved, and that's the approach that we would take in the future. So we're ready to go. There's only one other comment I want to make, and that is that you've heard many speakers quote it here today, as to how many people have arthritis, how severe, and so on, what the cost is, cost of hospitalization, and so on. I've got a figure here of «close to $13 billion a year as the overall cost of arthritis in terms of lost productivity, disability payments, hospitalization, et cetera, et cetera. That's a lot of money; $13 billion is an awful lot of money, and I think that's probably a reasonable figure. This is a 1974-1975 figure. As a businessman, it certainly seems to me that any investment that we can make which would cut that figure down, let's say, by 10 percent, that's over a billion dollars right there; 20 percent and you've got two and a half billion dollars, and that's real money. So when you talk about $50 million, which is authorized in the National Arthritis Act, it's really very, very little. Perhaps we need to increase that authorization; perhaps the results of this study will indicate that we could utilize more funds. We don't want to see money thrown around, we don't want to see it wasted, but we do want to see our medical-scientific community geared up to the extent that it seems reasonakle to come up with the solution of these various problems we've talked akout today. Again, let me say thank you very, very much for all that you fellows are doing. ENGLEMAN: Well, Porter, I can tell you that with the knowledge that you and your volunteers are standing Ly, the work of the Commission becomes much easier, and we know that it will not be in vain. We're very grateful to you and to all the citizens of Denver who have done so much to make possible the National Arthritis Act. With that, I think we can close. Thank you very much. 2-376 Denver, Colorado October 28, 1975 S URMITTED. STATEMPNTS DEBBY DOOLITTLE, R.P.T. October 28, 1975 Denver, Colorado Jodene Weeter, case worker for Jefferson County Social Services; Ruth Austin, retired person; and I, Registered Physical Therapist, represent the Supportive Device Committee of the Jefferson County Advocacy Council for the Aging. The objective of this ccmmittee is to determine what the existing needs are in Jefferson County for supportive devices, home modifications, and professional services that would enable many older persons to remain in their homes and function at a more independent level. We have the endorsement of the Council to pursue this objective. We plan to collect the data by teaching key individuals, through a series of training sessions, improved data gathering . and documentation techniques that will better illustrate the specific needs for supportive devices, such as ramps, elevated commode seats, grab rails, bathtub benches, orthopedic shoes and corrections, hand splints, prophylactic cushions, specially prescribed wheelchairs, as well as visual, hearing, and dental devices. These key individuals represent agencies that are actively involved in going into the homes of many older persons and providing services, such as Community Homemakers, Visiting Nurse Services, Adult Services Team from the Jefferson County Social Services Department, Home Health Aides, Senior Volunteers, Senicr Companions, Outreach Workers, etc. They will be asked to complete forms on specific cases and submit these to the committee for compilation. From this data, we will project what the overall needs are for Jefferson Ccunty. After compiling the data on the existing needs of older persons in their homes in Jefferson County, we plan to prepare a grant proposal to obtain funding to meet some of these needs for devices and services. We are presenting our program to this Committee today because we feel that many older persons are debilitated due to arthritis and other medical problems and can be helped to achieve a ketter life style if we can better assess the specific needs and have the funding to provide the devices and services. It is strongly felt and will be supported by documentation that if supportive devices and professional services can ke secured, the incidence of complicating factors, such as psychological problems, physical illness and disease, social isolation, and unnecessary dependence in self-care, can be minimized. When one thinks cf the cost of treatment of the afore mentioned factors, it seems only logical that prevention or minimization of these problems should lower the cost of health care. When we have completed our needs assessment, we may apply to the Arthritis Foundation for help in funding our project if your Committee sees the validity of our proposal. 2-377 Denver, Colorado October 28, 1975 ROBERT H. PERSHING, JR. October 28, 1975 Lakewood, Colorado : Being one of the millions throughout these United States of America suffering with one or more of the several types of arthritis, I am taking this opportunity to express my thoughts along with many others in regard to securing funds for the National Arthritis Act. Each and every one of us has a vital interest in this situation. That it's being passed on to Congress will cpen a program for extensive research, a scientific study of this afflicting disease, for the young as well as the elderly, which could save many from unnecessary pain and handicaps throughout their lives, and permit them tc progress in a productive livelihood in the goal of their lives. I repeat, our vital interest in this program is that you and your board members will hopefully support us and the medical profession in this worthwhile cause. HARRY B. LEVIN October 28, 1975 Denver, Colorado I strongly urge you gentlemen to disregard the remarks of Dr. John Leidholt, M.D., about using some of the $50 million to research injuries or aches and pains of pro athletes. Pro sports, with their large incomes to management and players plus all of their fringe benefits, can use their own means to research their proklems . When will $50 million give us a good start to help people who are suffering untold hell, and who have not financial means to help themselves. We should have at least ten times $50 million to get started. If we can spend billions to send men to the moon, $50 million is like giving. a penny to a suffering arthritic person, and telling him to find a doctor and do his own research. ROY L. CLEERE, M.D. Denver, Colorado I am Dr. Roy L. Cleere, Administrator of the Colorado-Wyoming Regional Arthritis Program. This is an outreach, professional education program, sponsored by the Rocky Mountain Chapter, the Arthritis Foundation, ‘University of Colorado Medical Center, and the Arthritis Treatment Center, General Rose Memorial Hospital, and funded by the Colorado-Wyoming Regional Medical Program. The purpose of the program is to upgrade the quality of the diagnosis and comprehensive care of the arthritic patients in this two-state area and to make this improved medical service more widely available. The faculties for the regicnal «clinics are comprised of a rheumatologist, an orthopedist, and a nurse-practitioner. For some of the clinics, a psychiatrist also serves as a team memker. Lectures are given and cases are presented by local physicians and discussed by the faculty. The nurse-practitioner conducts a workshop for allied health professionals 2-378 Denver, Colorado October 28, 1975 and participates in the clinics. A local practicing physician is designated to serve as medical coordinator for the clinics. During the fiscal year ended June 30, 1975, twenty-seven consultation- teaching clinics were held in communities in thirteen different regions in the two states. The attendance has keen excellent at the clinics by both physicians and allied health professionals. Cne hundred thirty-three patients were seen at the clinics last year. In addition to the clinics, postgraduate opportunities in the field of rheumatology at the University of Colcrado Medical Center and the Arthritis Treatment Center are offered to physicians from rural and semirural areas. Free laboratory services are extended to practicing physicians by the lab of the Arthritis Division, when these services are not -available locally. A "hot-line" telephone consultation service is also offered to rural physicians. A two-day workshop for allied health professionals and a one-day postgraduate seminar for physicians have been held at the Arthritis Treatment Center. Two one-day refresher courses were conducted for the local medical coordinators at the University of Colorado Medical Center and the Arthritis Treatment Center. During this fiscal year, ending next June 30, the Consultation- Teaching Clinics will be extended to eight additional regions in Colorado and Wyoming. Workshops are being organized for laboratory technicians so the routine diagnostic tests can be rerformed on a regional or local basis. Consideration is being given to organizing a workshop for Orthotists. There is considerable enthusiasm for regional workshops for allied health professionals. More attention will be given to organizing patient education or public forums, in collaboration with the Rocky Mountain Chapter, the Arthritis Foundation, when the faculty teams are in various communities. A public health nurse, with visiting-nurse experience, will soon be added to the staff of the Arthritis Treatment Center to conduct a home health-care program for patients discharged from the center to their homes. : Based on the regional arthritis program experience to date, it is strongly recommended that the Commissicn, in the development of a plan to implement the National Arthritis Act, consider as high priority items: (1) Continuing education in the field of rheumatology for physicians and allied health professionals in rural and semirural areas. (2) Allied health recruitment and education. (3) Make laboratory diagnostic facilities more widely available to physicians and patients. (4) Establish «clinic services in strategically located centers where they are presently nonexistent. These «clinics «could serve as professional education centers as well as diagnostic and treatment facilities." 2-379 Denver, Colorado October 28, 1975 (5) Expand public and patient education programs, in collaboration with Arthritis Foundation chapters. (6) Promote and develop home health care services for arthritics. (7) Establish a national data system to assist in long-range planning for arthritis control services and in evaluation of effectiveness of programs. LLOYD R. EVANS, M.D. October 28, 1975 Laramie, Wyoming My name is Lloyd R. Evans, and 1 practice internal medicine in Laramie, one of seven Wyoming communities where health professionals participated in "Outreach," a continuing education program organized by Dr. Charley Smyth and his associates which was sponsored by the Colorado- Wyoming Regional Medical Program and the Rocky Mountain Arthritis Foundation. Laramie has a population of 23,000 persons who are served by a medical staff numbering ‘21, of which nine are primary-care physicians. "Outreach" was directed primarily at these latter individuals and their allied health personnel including hospital nurses, public health nurses, university nursing and LPN students, rhysical therapists, and medical technologists. I would 1like to Ffprovide you with some insights into "Outreach" in our area. The format of the three visits by the team from the arthritis program was determined by the perceived needs of our locality. The team consisted of two physicians and a nurse-practitioner. The physicians would see patients in consultation. At the same time the nurse-practitioner spoke to all of the allied health professionals in the morning. During the noon hour the physicians lectured to the hospital medical staff. Each consultation was essentially a tutorial session with a local doctor, and the written consultation sent a week later served as a reinforcement of the instructional process. These visits were enthusiastically received for the following reasons: (1) Though we previously had valuable lectures by individuals, the team approach including all the health professionals was clearly an improvement. (2) Visits were patterned to meet local needs. (3) The consultation mode offered a one-on-one type of patient- centered learning experience, similar to the internship and residency and familiar to the physician. The censultation was equally well received by the patient, the primary beneficiary. (4) Because of the large and increasing number of patients with arthritis and allied disorders that one sees in private practice, rheumatology has to be the most grossly neglected field in the medical school curriculum. "Outreach" is a means of remedial action. 2-380 Denver, Colorado October 28, 1975 Another feature of "Outreach" was the opportunity for primary care physicians to visit the center in Denver for instruction. Two Laramie physicians spent two or more days at the Denver center. "Outreach" provided 300 persons hcurs cf instruction for physicians in Wyoming and 478 for allied health personnel. However as mothers, fathers, educational psychologists, and other experts in learning theory know, the measure of learning is not instruction given but rather the behavioral change in the learner. A program like "Cutreach" is difficult to evaluate in behavioral terms; however, I would like to present certain data from our hospital which speak for themselves. Comparing the year before to the year of "Outrearch", there were the following changes in certain diagnostic procedures related to rheumatolcgic disorders: (1) Seventeen percent more tests were made for rheumatoid factor. (2) The year before no diagnostic joint aspirations were done, eight were done the year of "Outreach." (3) Over four times more Antinuclear Antibody Tests were done. (4) There was an increase of 12 percent in the number of diagnoses of arthritis. The National Arthritis Act specifies that centers may conduct consultative services to facilitate referral. I believe that the practice of the Colorado center to consult in order to improve local care is preferable. If the primary-care physician is to regard rheumatic disease as a rewarding intellectual challenge rather than something to be triaged. The Act also specified that a center shall provide continuing education for health care providers. We know that the desperately needed advances will come from the lakoratories of the large centers, but if word of them is to get to the providers, the "Outreach" model is indicated on a continuing and expanded basis. This would fulfill the intent of the authors of the National Arthritis Act. MRS. OWEN L. SADDLER and RICHARD G. PAULSON October 28, 1975 Omaha, Nebraska The Nebraska Chapter, Inc. of the Arthritis Foundation is deeply grateful to the National commission on Arthritis and Related Musculoskeletal Diseases, created by the National Arthritis Act (Public Law 93-640), for the privilege of presenting testimony in our behalf. Various members of the Nebraska Chapter's Board of Directors have expressed their dedication, interest, and desire to further our state's activities in the. areas of research, care, and education by notifying their Congressmen of Nebraska's need to ke recognized as a recipient of funding provided by this Act. Many phone calls were made at personal expense. In addition, letters were written, and cories of such correspondence, along with answers where available, are included in a concise and, we trust, motivating dossier to serve as a written 2-381 Denver, Colorado October 28, 1975 testimonial submission to the Commission meeting at the Brown Palace Hotel, Denver, Colorado, on Tuesday, Octoker 28, 1975. Further, this written testimony is sukmitted in person by Mrs. Qwen L. (Jo) saddler, President, Nebraska Chapter, Inc., and by Richard G. Paulson, Executive Director, Nebraska Chapter, Inc. Either or both parties are also available to serve as verbal witnesses, should time and/or inclination of the Commission allow. Without stating a multitude of statistics of which the Nebraska Chapter is convinced the Commission is already aware, and in an honest attempt to reduce the voluminous quantity of evidence that surely will be submitted by all concerned parties, we would briefly 1l1like to state our position and convictions as relates tc programming, goals, objectives, and use of funds as would be allocated to the Nekraska Chapter through the provisions of the National Arthritis Act. Such declarations are as follows: ESTABLISHMENT OF A UNIVERSITY-SPCNSORED ARTHRITIS CENTER - Omaha, the principal city in Nebraska, is blessed as the home of two nationally recognized colleges of medicine: The University of Nebraska Medical Center (state supported) and the Creighton University School of Medicine (privately supported). Together, the two universities would work cooperatively without detraction of effort produced by competition, as the two schools form the joint university board, the Creighton-Nebraska Universities Health Foundation. The foundation has already established approved combined residency programs in neurology and dermatology, capably demonstrating "umbrella" management akilities of the two universities. 1. Such an arthritis center would be staffed by skilled, fully trained, practicing senior rheumatologists. 2. These rheumatologists would provide medical services for two or more arthritis clinics at each of the university medical schools. The Greater Omaha Metropolitan and surrounding area, to include Pottawattamie County in Council Bluffs, Iowa, delivers a population between 500,000 and 600,000 residents. 3. Present limits of five to ten patient visits per one-half day of clinical care now provided by the university medical schools would increase dramatically and effectively to a major level of patient care capacity per full day of services. 4, The numerous daily requests for care, treatment, and education received by the university medical schools and the Nebraska chapter could then be relayed to a central point of excellence for referral and disposition. 5. An arthritis center would provide for the adequate and professional training of medical students in the area of rheumatology. As there are at present only five rheumatologists in the entire state of Nebraska and the eastern part of, Iowa which the Nebraska chapter serves - three in Lincoln, one in Scottsbluff, and one in Omaha - this obvious dearth of medical professionals would be replaced by an adequate supply of resource people 2-382 Denver, Colorado October 28, 1975 specialized and trained to deliver arthritis health care services to the 1,483,791 Nebraskans and 86,991 residents cf Council Bluffs, Iowa. 6. The arthritis center, with a full ccmplement supporting staff of orthopedic surgeons, opthalmologists, physical therapists, occupational therapists, nurses, fellows, residents, and students would be able to offer to all recognized medical fractitioners licensed in the state training in rheumatology in the form of continuing education programs. These programs would be conducted in Omaha, eastern Iowa, and throughout Nebraska. 7. The lay, professional, and fraraprofessional education programs conducted by the Nebraska chapter throughout its 94 county service area would be greatly enhanced by the availability of additional trained resource people. At present, the resource people engaged in the work of the chapter are overworked and away from their private practices more often than can be reasonably expected of them, despite their extremely high level of dedication and concern. SUMMATION: If the National Arthritis Act would provide adequate funding for the Arthritis Foundation, Nebraska Chapter, Inc., as outlined in the aforementioned areas, the chapter would then be Letter able to provide its own reasonable share of funding through solicitation of private, corporate, foundation, and sgpecial events gifts. The public information program could be expanded tc better inform and to keep abreast of all late, approved medical developments that would be of consequence to the maintenance of viable health standards for arthritis patients. Eventually, all rural and less porulated city and town areas of Nebraska would enjoy the benefit of a fully trained rheumatologist practicing care and treatment in or nearby their hometown areas. Programming would be localized, made more meaningful and beneficial to all local residents, whether they were suffering from the effects cof arthritis or not. Local clinics could then be established and maintained to serve at least a clustering of neighboring towns or counties, thereby saving travel time and expense, and serving human health care needs faster, when it's needed, and proving more keneficial tc the patient. All but one of the eight medical doctor members of the Medical Advisory Committee of the Nebraska Chapter, Inc. have university appointments with either the Creighton University School of Medicine or the University of Nebraska Medical Center. The committee has been and is presently engaged in the development of the stated arthritis center concept, which will be presented in perhaps even greater detail by the Chairman of the Medical Advisory Committee, J. Kenneth Herd, M.D., at the National Arthritis Commission Hearings in St. Louis, Missouri, on Tuesday, November 11, 1975. In behalf of the Arthritis Foundation, Nebraska Chapter, Inc. the undersigned hereby respectfully sukmit with appreciation and great expectations the aforestated proposed recommendations that constitute written testimony to the National Commission on Arthritis and Related Musculoskeletal Diseases at the one-day public hearing in Denver, Colorado, at the Brown Palace Hotel, on Tuesday, October 28, 1975. 2-383 Denver, Colorado October 28, 1975 NORMA CUTLER, M.S.W. October 28, 1975 Denver, Colorado I wish to speak for the many reorle suffering from arthritis who I have known or worked with over the past twenty-five years. As a member of the arthritis auxiliary, I, along with other members, have for over a year interviewed patients attending the Colorado Medical Center's Arthritis Clinic. Our primary purpose was to inform them of the many services provided by the Arthritis Foundation and the auxiliary. In addition we inquired as to his/her understanding of his/her disease and the treatment. Two-thirds of the over 200 interviewed wished more information on "arthritis." Appropriate pamphlets were given, and any specific questions were relayed to the clinic personnel. Education of the medical profession must filter down to the patient and his family for a better understanding of the many aspects of this widespread disease. Today I wish to stress the often overlooked or neglected phase of treatment in the area of environmental, secial, or emotional needs of a great majority of arthritics. As with the medical care, each patient must be individualized as to definitive diagnosis, stage of the disease, age, family situation, type of employment, housing, mobility, emotional stability, etc. I have observed that the problems of arthritic patients differ in several aspects from other chronic diseases. First, there is continual or recurrent pain associated with lack of mobility of the affected joints. The desire to relieve pain leads to often unorthodox methods of treatment as well as depression. Second, the fear of becoming dependent as joints become more and more involved is prevalent. Third, in the rheumatoid arthritic, the phenomenon of spontanecns remission results not only in discontinuation of medical care but the hore that is associated with it brings , on euphoria that will eventually be debilitating, if or when the reasserbation occurs. Fourth, the sensitivity, especially in women, to their . deformities often causes them to withdraw from social contacts and become isolated and lonely. Fifth, family and marital conflicts are an ingredient in many homes of the younger-aged patients due to financial stress, inability to perform adequately as wives, husbands, mothers, or wage earners, This reduces self-confidence and self-esteem, often resulting in feelings of guilt. The above problems point to the need for a qualified social worker to be a member of a medical team in all facilities for the treatment of arthritic patients, whether inpatient cr outpatient clinics. The volunteer sector in this geographic area is doing a yeoman's job of giving individual service but is limited Lky lack of staff and participating members. The Rocky Mountain Chapter of the Arthritis Foundation office could be a more effective agency if a social worker was assigned to evaluate requests for service, act as liaison and refer patients to other agencies for appropriate follow-up, and tc provide direct casework to the home-bound individual. This would, in my opinion, round out the excellent program already undertaken by this and other chapters. 2-384 Denver, Colorado October 28, 1975 MARIANA SETHER October 28, 1975 Lakewood, Colorado I am an arthritic (with other chronic diseases) and would like to pose this question: Why does not the Commission give more publicity to the needs for funds raised by a nationally known personality via a telathon, such as Jerry lewis carries out for muscular dystrophy? We as private citizens get envelopes for all sorts of diseases in which we are kegged to give money to each cause until it hurts. But never have we received an appeal to give them a neighborhood envelope for ARTHRITIS! Why? I was a patient for several years of a recognized physician (rheumatologist) and tried the whole gamut of drugs with loss of weight and little relief. I take DMSO and a muscle relaxant, with no side effects, purchased in Piedras Negras, Mexico, prescribed by a former U.S. physician trained as a medical doctor at Baylor U., did graduate work in San Antonio, Texas, Dr. Salvador Chavarria, M.D. He practiced medicine in Bethesda, Maryland, using DMSO with success until the FDA took this drug off the market. RICHARD A. WALTERS IDAHO'S ARTHRITIS PROBLEMS AND RELATED NEEDS MAGNITUDE OF THE PROBLEM Applying the National Health Survey's (1969) arthritis prevalence rates to Idaho's population of 1970, we arrive at the following calculated datas ? IDAHO ARTHRITIS PREVALENCE BY AGE Age Persons with Arthritis 0-16 years 197 17-44 years 10,064 45-64 years 28,769 65 & over 24,852 STATE TOTAL 63,901 =.8.9% of Idaho's Population has arthritis (1) One out of every four families is stricken by this disease (44,839 Idaho families have at least one member with arthritis). (2) Approximately 7 percent of arthritics are unable to work because of arthritis (4,473 persons in Idaho). (3) In 1970, 232 Idaho workers received Social Security payments because of disability due to arthritis. (4) Idaho averages 14 deaths due to arthritis each year. HEALTH RESOURCES Manpower = Idaho has a severe shortage of rheumatologists. In our state with a population of nearly 800,000, we have only one rheumatologist (1:200,000 is ideal). Medical specialists (including allergists, 2; 2-385 Denver, Colorado October 28, 1975 internists, 71; orthopedic surgeons, 42) are located in Idaho's major cities. Only one physician in Idaho specializes in physical medicine and rehabilitation. The scarcity and uneven distribution of some health professionals, especially physical and occupational therapists, also creates problems with therapy availability for arthritis patients (27 occupational therapists and 57 physical therapists). Funds - State chronic disease rprograms, such as our arthritis diagnostic-evaluation clinics, no longer receive public health service (314d) funds for matching. Idaho has turned to a combination of funding sources (Regional Medical Program, Idaho Arthritis Foundation, and our State's general fund) to continue our limited clinic services. HEALTH CARE FACILITIES Idaho has no medical facility with the capacity for comprehensive arthritis research, diagnosis, treatment, care, and rehabilitation. One general hospital and one rehabilitation hospital in the state provide all therapies and rehabilitation services essential to arthritis care without the benefit of a staff rheumatologist. The burden of arthritis care falls to the practicing physicians in their offices, general hospitals, and nursing homes. Specialized evaluations must be sought in neighboring states having arthritis centers, such as Utah and Washington. EDUCATION For Patients and Families - Education in groups has the potential for assisting patients to deal realistically and therapeutically with their arthritis condition and living. Only a few patient education sessions have been provided in Idaho for arthritis patients through the Intermountain Arthritis Center (RMP funded). This beginning already shows positive behavioral changes in some patients. For Professionals _ A relative lack of up-to-date skills and apparent disinterest among health professionals discourages arthritis patients and makes "quack cures" more appealing to them. The latest methods of diagnosis and treatment must be made available to health professionals who are truly interested in the care of the arthritic. SUMMARY OF NEEDS FOR IDAHO'S ARTHRITIS PATIENTS (1) More rheumatologists are needed in the state. (2) Qualified, skilled, interested health professionals: physicians, medical social workers, occupational therapists, physical therapists, institutional and community nurses are needed in Idaho. (3) Easier access to comprehensive arthritis centers. (4) Satellite evaluation services in rural areas. (5). Statewide patient education sessions taught by qualified group leaders. (Two-page table entitled "Arthritis Prevalence in Idaho by County and Age Group" was also submitted.) 2-386 Denver, Colorado October 28, 1975 (5) Statewide patient education sessions taught by qualified group leaders. (Two-page table entitled "Arthritis Prevalence in Idaho by County and Age Group" was also submitted.) JAMES GELLAN October 29, 1975 Denver, Colorado I had the privilege of attending the public hearing held in Denver yesterday by the National Commission on Arthritis and Related Musculoskeletal Diseases and was surprised that no provision had been made on the agenda for contributions or comments by the general public since they are the ones who will ultimately foot the 50-million-dollar bill. It appeared to me that everyone participating -- doctors, nurses, patients, social workers, etc., and even the Commission itself -- were more concerned with getting a bite out of the golden apple than examining the prime object in establishing arthritic clinics, which is to centralize facilities, research the cause and effects, provide effective medications, and institute preventive measures. I can't see that any extention of existing facilities is going to do much to eliminate this dread scourge from our midst. Certainly those concerned will be more learned and knowledgeable and more able to cope with existing conditions but the position, as it stands, is a black mark against the medical fraternity. They have not taken adequate steps to research the cause of arthritic proklems and thereby eliminate the effects. Most doctors will tell you, when the disease has reached a chronic stage, it's genes, heredity, geriatric, etc., etc. This is just a cop-out for their ignorance. Basically it must be obvious that a great deal of it is due to inadequate diets and possibly malnutrition in the formative years. As another thought for the day, we are all well aware that the body is almost 80 percent fluid, yet nobody has thought to investigate the possibility that the purity of our water supply may affect the entire life cycle of every person in the United States. The National Bureau of Standards is only concerned with providing water that is palatable, which does not necessarily mean an acceptable standard for human consumption. The water provided may be reclaimed, desalted, clarified, deodorized, or processed in other ways but nevertheless could be harmful in many cases. Even slight or minute traces of salts, acids, bases can act as electrical conductors, and we are all well aware that the body is the greatest storehouse of electrical energy known to mankind. These minute electrical impulses in water can have a devastating effect on human life since they are absorbed day in and day out over the whole of our life cycle, provided we stay in the same locality. It would not serve any useful purpose for me tc go into the relationship of physics -- induction, radiation (direct or indirect), atomic residue, or any of the other factors concerned with the body's intake of hydrogen oxide; suffice it to say that I would like the Commission to allot a goodly sum in the research on fluid intakes and their purity. We must be concerned with prevention rather than cure. 2-387 Denver, Colorado October 28, 1975 I wish this letter recorded by the Commission on Arthritis and Related Musculoskeletal Diseases that they make take whatever action they may deem necessary with its contents since this is in the interests of all concerned. May your deliberations result in success. ART GLENN October 27, 1975 Denver, Colorado Two almost simultaneous events here in Denver offer new hope to the millions who suffer from arthritis, and new encouragement to those working in arthritis treatment and research. Today, the Helen and Arthur Johnson Arthritis Research Laboratories were dedicated at the University of Colorado Medical Center. And tomorrow, the National Commission on Arthritis conducts a public hearing on the painful and crippling disease at the Brown Palace Hotel. The two developments are small but encouraging signs of progress in the fight against a disease that afflicts fifty million Americans. Tomorrow's National Commission hearings are part of a Federal effort toward control and improved treatment of arthritis. From the Denver meeting, and others like it throughout the country, will come a recommendation to Congress for appropriaticn and programs. It will take time, and talent, and a national commitment to beat arthritis. But it MUST be done. Fifty million Americans - young and old alike - are counting on it. JEAN OSBORNE October 21, 1975 Salt Lake City, Utah The Utah Nurses! Associaticn is unakle to have a representative attend the National Commission on Arthritis and Related Musculoskeletal Diseases public hearing scheduled for Tuesday, October 28, 1975, in Denver, Colorado. However, as part of the permanent records of the proceedings, the association strongly supports and recommends congressional appropriations for the development of a national plan for programs to combat arthritis. Arthritis has for too long been a neglected health problem, lacking funds for adequate research, supportive ccmmunity programs, and long-term health care management. Numerous persons afflicted with arthritis could lead more productive and less painful lives through improved planning for diagnosis, treatment, and rehakilitation. LAURA WHITING October 3, 1975 Fargo, North Dakota I am concerned about the nation's number one crippler - arthritis. It is a disease that touches almost every American - perhaps not directly, but it involves our friends, relatives, and business associates. My concern is more direct because of the job that I hold. I am a social worker at an arthritis clinic in Fargo, N.D. Through my position, 2-388 Denver, Colorado October 28, 1975 I see the pain and heartache arthritis causes and also the good that clinics such as ours provide. The only way to defeat arthritis is through research and education of all Americans. Therefore, I urge funding of the National Arthritis Act to the highest level possible. 2-389 REPORT OF THE NATIONAL COMMISSION ON ARTHRITIS AND RELATED MUSCULOSKELETAL DISEASES Volume I: The Arthritis Plan (DHEW Pub. No. 76-1150) Volume II: Work Group Reports (DHEW Pub. No. 76-1151) Volume III: Survey of Current Programs (DHEW Pub. No. 76-1152) Volume IV, Part 1: Public Hearings — Summary |, : ; Index Tucson (DHEW Pub. No. 76-1153) San Diego Seattle Volume IV, Part 2: Public Hearings — Harrisburg ) (DHEW Pub. No. 76-1154) - Boston Denver Volume IV, Part 3: Public Hearings — Milwaukee Little Rock Volume IV, Part 4: Public Hearings — St. Petersburg Atlanta Houston (DHEW Pub. No. 76-1156) Submitted Statements | (DHEW Pub. No. 76-1155) GENERAL LIBRARY - U.C. BERKELEY 8000131403