iC EALTH ARTHRITIS: out oF THE MAZE ; | VOLUME IV, PART 3: PUBLIC HEARINGS ses SUL —. National Commission on Arthritis and Related Musculoskeletal Diseases REPORT TO THE CONGRESS OF UNITED STATES April, 1976 Ae 18 1915 U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE ig Public Health Service i National Institutes of Health About the Cover Design: a A According to a legend among the Pima Indians of the Southwest, the great warrior-leader Se-Eh-Ha once constructed a maze with winding, labyrinthine passages, as a refuge from his enemies. That design, shown in the cover of this report, has been used for centuries by the Pima tribe. To them, it also represents a pattern of life, with all its obstacles and frustrations. hep It may also illustrate the problem of arthritis — with all its obstacles and frustrations. : «TI le [LY( . fied AS Je SEP PUBL | 9 1¢ National Commission on Jarthrica and Related Musculoskeletal Diseases 3 ¥ vA ). 7 PUB Report to the Congress of the United States Volume IV, Part 3: Public Hearings April, 1976 DHEW Publication No. 76-1155 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 Co » 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 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. James R. Cowan Assistant Secretary ot Detense 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 MARC PLAZA HOTEL MILWAUKEE, WISCONSIN November 10, 1975 Fe PT rr RT —— fas Shh LAS R » T E : a an Bt ot di Rp lls indi 3. Sip a nie arial dC MS ne SRE We x fh +n BIC brabil de du a. TABLE OF CONTENTS CHRONOLOGICAL LIST OF WITNESSES MILWAUKEE, WISCONSIN NOVEMBER 10, 1975 SCHREIBER, Lt. Governor Martin Wisconsin BERNHARD, Gerson, M.D. Director, Rheumatic Disease Program, Columbia Hospital CARLEY, David, Ph.D. President, Medical College of Wisconsin MELVIN, John, M.D. Department of Physical Medicine and Rehabilitation, Medical College of Wisconsin RUBIN, Lawrence, D.P.M. Coordinator, Rheumatology Unit, Illinois College of Podiatric Medicine SEELHORST, F. Elaine Patient MC CARTY, Daniel, M.D. Chairman, Department of Medicine, Medical College of Wisconsin ZAHORIK, Janet Patient GOLDMAN, Allan, M.D. Chairman, WRMP/WAF Subcommittee; Director, Arthritis Program, Sacred Heart Rehabilitation Hospital GORE, Donald, M.D. Orthopedic Surgeon PACHMAN, Lauren, M.D. Head of Immunology, Children's Memorial Hospital, Chicago, Illinois MC DUFFIE, Frederic, M.D. Rheumatology Research Laboratory, Mayo Clinic HULCE, Ray Vice President, Ford Motor Company; Chairman, Michigan Chapter, Arthritis Foundation HUTCHINS, John and LEVIN, Owen Wisconsin Regional Medical Program SCHAEFER, Werner President, Milwaukee County Labor Council AFL-CIO GELLER, Sam Spouse of Arthritis Patient, North Dakota DE ST. AUBIN, Wilfred Pilot Geriatric Arthritis Project, University of Michigan Medical Center, Ann Arbor, Michigan -JETTE, Alan Pilot Geriatric Arthritis Project, University of Michigan Medical Center, Ann Arbor, Michigan LIANG, George, M.D. Rheumatologist, Gunderson Clinic EDWARDS, Richard Director of Social Services, Methodist Hospital STANDORF, Claudia Milwaukee Dietetic Association LORENTZ, Mary Ann Parent of Children with Rheumatic Diseases LEMKE, Janet, University Student; Patient SUNDSTROM, Walter, M.D. Chairman, Medical and Scientific Committee, Wisconsin Arthritis Foundation SCHMID, Frank, M.D. Professor of Medicine and Chief of Arthritis and Connective Tissue Diseases Section, Northwestern University GRAZIANO, Victoria Director of Physical Therapy, St. Mary's Hospital JACOBSON, Richard President, Wisconsin Arthritis Foundation BJARNSON, David, M.D. Rheumatologist, Marshfield Clinic GRAHAM, David, M.D. Chairman, Department of Medicine, University of Wisconsin Medical School GRUBBE, Arlette Social Worker, Michael Reese Hospital, Chicago, Illinois LOVDAHL, John President, Handicabs of Milwaukee, read by John Reddy PIGG, Janis Smith, R.N. Nurse Consultant, Rheumatology, Columbia Hospital TREACY, William President, Wisconsin Society of Internal Medicine HEISS, Marie, R.N. Nursing Specialist, Rheumatology, Columbia Hospital HOUSE, Charles Patient 3-92 3-95 3-97 3-98 3-100 SUBMITTED STATEMENTS BORG, Ruth Poplar, Wisconsin BROTZ, Mrs. Wilbur A. Sheboygan, Wisconsin BRODACZYNSKI, Joseph F. Milwaukee, Wisconsin COLE, Mrs. James Neenah, Wisconsin FASSBENDER, Mrs. W. Sun Prairie, Wisconsin FERSTL, Lorraine Madison, Wisconsin FLETCHER, Wellington H. Washburn, Wisconsin FRYMARK, Patricia J. Milwaukee, Wisconsin GARCES, Mrs. P. F. Shorewood, Wisconsin GOODRICH, B. GRISAR, Carl Milwaukee, Wisconsin HAYES, Beatrice A. Wauwatosa, Wisconsin JOHNSON, Mrs. L. M. Waupaca, Wisconsin JACOB, Leslie Racine, Wisconsin KALISH, Bernice Viola, Wisconsin KESSLER, Hazel F. Centerville, Ohio 3-6 3-104 3-105 3-105 3-105 3-106 3-106 3-107 3-108 3-109 3-110 3-110 3-111 3-111 3-112 KIRCHENBERG, Mrs. Erwin Milwaukee, Wisconsin KOWALSKI, Mrs. C. Milwaukee, Wisconsin LUECKE, H. E. Appleton, Wisconsin MAIER, Karl, Jr. Milwaukee, Wisconsin MANNING, Donna J. Wyoming, Michigan NAYES, Mrs. Harold Chippewa Falls, Wisconsin NELSER, Adrienne Madison, Wisconsin POKORNY, Edward J. Milwaukee, Wisconsin RAVEN, Mrs. Henry Sheboygan, Wisconsin ROCKABRAND, Betty F. Oconto, Wisconsin RUEPPEL, Eunice A. Green Bay, Wisconsin STAHL, Beatrice M. Milwaukee, Wisconsin THORSON, Mrs. Raymond Elroy, Wisconsin TRACHLUH, Maria BARTELT, Mrs. David West Allis, Wisconsin BOWMAN, Gertrude H. Oshkosh, Wisconsin BRANDT, Adeline H. Appleton, Wisconsin 3-7 3-115 3-115 3-116 3-117 3-118 3-118 3-118 3-119 3-120 3-120 3-121 3-121 3-121 3-122 3-122 BROWN, Mrs. Arthur Siren, Wisconsin BRUNKE, Adeline N. Madison, Wisconsin DEAUCHAMP, Lydia Madison, Wisconsin DE YOUNG, John C. Randolph, Wisconsin ELLEN, Vera H. Cuday, Wisconsin ENNION, Charlotte Berlin, Wisconsin FALTER, Ruth O. Janesville, Wisconsin FRAZER, Mary Lou Oconomowoc, Wisconsin GETTLEMAN, Fred W. Wauwatosa, Wisconsin GOLOB, Laverne West Allis, Wisconsin HANSEN, Mrs. Arthur H. Green Bay, Wisconsin HESS, Evelyn Cincinnati, Ohio HOPP, Harley De Pere, Wisconsin ISAKSON, Mrs. Kenneth Eau Claire, Wisconsin JAGGER, Margaret Milwaukee, Wisconsin -KEVILL, Hazel Oshkosh, Wisconsin 3-8 3-125 3-125 3-126 3-126 3-126 3-127 3-127 3-128 3-129 3-129 3-130 3-131 3-131 3-132 KLAPSTEIN, Mrs. Donald F. Milwaukee, Wisconsin LAATSH, Mrs. L. C. Milwaukee, Wisconsin LINDER, August J. LOHR, Adeline MADLAND, L. F., Ph.D. Milwaukee, Wisconsin MASHUDA, Marcella Brandon, Wisconsin MATTUSHEK, Irma Milwaukee, Wisconsin MEIDER, Elsie Sussex, Wisconsin MEIER, Walter R. Milwaukee, Wisconsin MURPHY, H. Carol NECKERMAN, George M. Madison, Wisconsin NETZEL, Florence Stevens Point, Wisconsin OLTARZEWSKI, Beulah Oak Creek, Wisconsin PAAR, Karen Black River Falls, Wisconsin PATZER, Esther K. Milwaukee, Wisconsin POS, Edward E. Antigo, Wisconsin PUZA, Emil A. Milwaukee, Wisconsin RADOMSKI, Sylvia Milwaukee, Wisconsin 3-133 3-133 3-134 3-134 3-134 3-135 3-135 3-136 3-137 3-137 3-138 3-138 3-139 3-140 3-140 3-140 RATHER, Mary Waukesha, Wisconsin RAUDWER, John and Edith Milwaukee, Wisconsin REITEN, Mrs. Ruber A. Rice Lake, Wisconsin ROSENKE, Mrs. Earl Racine, Wisconsin RUDKIN, Mrs. Gordon Black River Falls, Wisconsin RUFFALO, Mrs. Frank D. Racine, Wisconsin SCHMIT, Audrey Port Washington, Wisconsin SCHWARTZ, Walter O. Milwaukee, Wisconsin SCHOTT, Donna Green Bay, Wisconsin SELZER, John W. SELL, Mrs. Eugene Elm Grove, Wisconsin SMITH, Verle H. Milwaukee, Wisconsin SPANGENBERG, Ed Milwaukee, Wisconsin STUDE, Norma Milwaukee, Wisconsin SWENSON, Gloria Brookfield, Wisconsin TRYTHALL, Mrs. D. Elcho, Wisconsin VOSICKY,, Mrs. C. Geneva, Wisconsin 3-10 3-141 3-143 3-143 3-145 3-146 3-146 3-147 3-147 3-147 3-148 3-148 3-148 3-148 3-149 3-149 VOY, Ruth V. Horicon, Wisconsin WELCH, Kathleen S. West Allis, Wisconsin WELCH, K. S. West Allis, Wisconsin WICK, Arthur G. Milwaukee, Wisconsin ZUEGE, Robert C. Milwaukee, Wisconsin ABRAMS, Juanita S. Wausau, Wisconsin AUSTAD, William R., M.D. Monroe, Wisconsin BAUTCH, Judith L. Madison, Wisconsin CAPE, James F. Racine, Wisconsin GROSSMAN, Burton J., M.D. Chicago, Illinois HARTMAN, Ann Merrill, Wisconsin KIERNAT, Jean M., O.T.R. Madison, Wisconsin KLEIN, Martha Gray Milwaukee, Wisconsin MILLER, Mrs. Clifford POTSCHAIDER, Lois Omro, Wisconsin RUBENSTEIN, Herbert M., M.D. Chicago, Illinois RUBENSTEIN, Herbert M., M.D. Maywood, Illinois 3-11 3-152 3-152 3-152 3-153 3-153 3-154 3-154 3-154 3-155 3-156 3-157 3-158 3-158 3-160 3-161 RUNHOLM, Eugene A. Waupun, Wisconsin RYALL, Mrs. E. V. Kenosha, Wisconsin STARK, Mary Rita STEVERWALD, Viola, R.N. Adell, Wisconsin TORINUS, Jack B. Appleton, Wisconsin YOST, William A., Jr. Wauwatosa, Wisconsin BARTLEIN, Beverly Muskego, Wisconsin DUXBURY, Henry W. and Rosa L. Tomahawk, Wisconsin GINTHER, James E. Akron, Ohio KRYZENSKE, Frank Sheboygan, Wisconsin LOPEZ, Basillio Milwaukee, Wisconsin BREITZMAN, Janet A. Milwaukee, Wisconsin BURKE, Mrs. R. G. Milwaukee, Wisconsin CZECH, Paul C. Wauuatosa, Wisconsin DE BENEDICTIS, Marcia Cedarburg, Wisconsin FRIEND, Henry C. Milwaukee, Wisconsin HAYDEN, Paul W. Slinger, Wisconsin 3-12 3-162 3-163 3-163 3-164 3-165 3-166 3-167 3-168 3-168 3-169 3-170 3-170 3-171 3-171 3-171 HEMMENT, Marguerite, R.N. Lake Geneva, Wisconsin KLOPPMANN, Vera A. Milwaukee, Wisconsin KRUSE, Audrey J. Milwaukee, Wisconsin LINK, John H. Evanston, Illinois MATTIOLE, Mrs. Angelo Kenoshi, Wisconsin MENGEL, Mary Fond du Lac, Wisconsin NELSON, Mrs. Wendel Green Bay, Wisconsin NERO, Doris Brookfield, Wisconsin PANKRATZ, Margaret Sturgen Bay, Wisconsin SUMMER, Mrs. Howard L. Racine, Wisconsin THIELMANN, Dorothy Chilton, Wisconsin VIG, Rosalyn J., R.N. Virogua, Wisconsin VOIGHT, Christine Kenoshay, Wisconsin WILSON, Robert J. Madison, Wisconsin WRUCK, Chris Milwaukee, Wisconsin ZOLORSKI, Eleanor St. Francis, Wisconsin 3-13 3-173 3-173 3-174 3-174 3-175 3-176 3-176 3-178 3-179 3-179 3-180 3-181 3-181 3-182 RITTER, Mrs. Kenneth Cedarburg, Wisconsin SCHLEVENSK, James STARK, Lewis Madison, Wisconsin BERG, Myrtle M., R.P.T. Beaver Dam, Wisconsin BLANK, Lois La Crosse, Wisconsin BOSSHARD, Mina I. Janesville, Wisconsin BULIN, Ann Milwaukee, Wisconsin CHERNOV, Mimi Milwaukee, Wisconsin COLLINS, Lorraine FORBES, Cynde Milwaukee, Wisconsin FRANK, Lydia F. West Allis, Wisconsin GIBBON, Irene Cedarburg, Wisconsin HAMACHEK, Mrs. Frank Keweenaw, Wisconsin DAVIES, Loree and HANSON, Erica Madison, Wisconsin HARLOFF, Helen L. Madison, Wisconsin HAUGEN, Marilyn Edwina, Minnesota 3-14 3-186 3-186 3-187 3-187 3-193 3-194 3-194 3-195 3-196 3-196 3-197 3-198 HOARD, Mary Grace Fond du Lac, Wisconsin HOUGH, Robert E. Greendale, Wisconsin JAKUBOWSKI, Althea Oshkosh, Wisconsin JORGENSON, Eleanor C., R.P.T. West Allis, Wisconsin KANAROWSKI, John Germantown, Wisconsin KAPPELMAN, Mae Milwaukee, Wisconsin KLAMER, Lorraine Racine, Wisconsin KRING, Carol Sturgeon Bay, Wisconsin MEIKLE, Irene Dodgeville, Wisconsin MINOR, Mrs. W. P. Mequon, Wisconsin MORITZ, Mary Milwaukee, Wisconsin MOZE, Frank James Milwaukee, Wisconsin MULLARKY, Mrs. H. Milwaukee, Wisconsin NELSON, Lorraine Milwaukee, Wisconsin OHLSEN, Minna Milwaukee, Wisconsin PETERSON, Douglas Waukesha, Wisconsin POHL, Evelyn Greendale, Wisconsin 3-15 3-199 3-200 3-201 3-201 3-202 3-204 3-206 3-206 3-206 3-207 3-207 3-207 3-208 3-208 3-208 SCHMIDT, Sylvia E. Campbellsport, Wisconsin SEAMANS, Carol Reedsburg, Wisconsin SPIRO, Joanna H. and HAYDEN, Mary Claire Milwaukee, Wisconsin STENGER, John G. Milwaukee, Wisconsin TIVANOVAK, John J. West Allis, Wisconsin WEISS, Mrs. Sandy East Troy, Wisconsin WIEGAND, Annette J. Sheboygan, Wisconsin WIEGARD, Annette J. Sheboygan, Wisconsin FULLER, Jean F. Oshkosh, Wisconsin KUNZE, Winifred Elm Grove, Wisconsin KUNZE, Winifred Elm Grove, Wisconsin KUOLT, Lorraine H. West Allis, Wisconsin SOLBERG, Dorothy F. Wauwatosa, Wisconsin SUNDE, Mrs. Jack River Falls, Wisconsin WICKERT, Mrs. W. CORNWELL, Susan J. Hales Corner, Wisconsin 3-16 Page 3-209 3-210 3-210 3-211 3-212 3-212 3-213 3-214 3-214 3-214 3-216 3-216 3-217 3-218 3-218 3-218 DYKEY, Charles E. Chicago, Illinois GRISAR, Mary Milwaukee, Wisconsin VAN ROSSUM, Marie Milwaukee, Wisconsin SAUER, Reverend W. P. West Bend, Wisconsin ARMSTRONG, Elizabeth BATES, Carol Ladysmith, Wisconsin BERG, Mrs. Eugene Ripon, Wisconsin BETHEL, Rose Oregon, Wisconsin BOYNTON, Mrs. Ardis Beloit, Wisconsin BROOKINS, Bessie Sheboygan, Wisconsin BUSH, Lucille E. Robinson Milwaukee, Wisconsin CALLAN, Phylis Milwaukee, Wisconsin CLARK, Vivian Milwaukee, Wisconsin CLOCHESY, John M. Fond du Lac, Wisconsin ENNIS, Ruby Nelson Sturgeon Bay, Wisconsin EURICH, Mrs. Sheboygan, Wisconsin FOLEY, Eloise G. Sun Prairie, Wisconsin 3-17 3-221 3-222 3-222 3-223 3-223 3-223 3-224 3-224 3-228 3-228 3-229 3-229 3-232 3-233 FORSYTH, Ethel Waukesha, Wisconsin GAROT, Lil Green Bay, Wisconsin HANNI, Arlene Cuba City, Wisconsin HAUGEN, Clarion W. Beloit, Wisconsin HAUGEN, Mabel HELM, Don Oshkosh, Wisconsin HOUSE, Mrs. Frank HUETEL, Mrs. E. A. Wabeno, Wisconsin KOTHBAUER, Joan Eau Claire, Wisconsin MARCKS, Fern Pepin, Wisconsin MATTHIAS, Mrs. Donald Berlin, Wisconsin MILLER, Alma Rose Reedsburg, Wisconsin MORRELL, Iva West Allis, Wisconsin NEUMAN, C. E. Milwaukee, Wisconsin NIEMANN, Carol Winneconne, Wisconsin NILES, Mrs. Richard D. Madison, Wisconsin NUHN, Shirley N. Milwaukee, Wisconsin PELT, Cora V. Wauwatosa, Wisconsin 3-18 Page 3-234 3-234 3-235 3-235 3-236 3-236 3-237 3-237 3-238 3-239 3-239 3-239 3-240 3-240 3-241 3-241 3-242 3-243 PIOTROWSKI, Mrs. Edward Greenfield, Wisconsin RAYMER, Clare Rice Lake, Wisconsin ROGAHN, Florence SAGE, Mrs. John F. Janesville, Wisconsin SAUER, W. P. West Bend, Wisconsin SHADE, Evelyn Lyndon Station, Wisconsin SPINNEY, Viola Hypertus, Wisconsin STECHMESSER, H. STRANDE, Robert Trevor, Wisconsin SUDBRINK, Arlinda Sheboygan, Wisconsin SWEENEY, Mrs. Lester "West Allis, Wisconsin UNDERWOOD, Carl P. Whitewater, Wisconsin WORBY, Evelyn S. Hayward, Wisconsin ROBERGE, Mrs. Donald Rice Lake, Wisconsin ZIOLKOWSKI, Pearl South Milwaukee, Wisconsin MEMBERS OF AN ARTHRITIS CLASS Milwaukee, Wisconsin 3-19 3-244 3-245 3-246 3-248 3-248 3-249 3-249 3-250 3-250 3-251 3-251 3-251 3-252 3-253 pe pa ETT Sit ais PES EE PROCEEDINGS DONALDSON: I would like to call this session of the public hearings of the National Commission on Arthritis and Related Musculoskeletal Diseases to order. There are a few basic ground rules that we have to exist by in order to have the information appropriately recorded so that later on it can be included in the testimony that we will present to congress in our final report. Therefore, I would ask that all persons appearing before the Commission clearly state their full name, their title, their organizational affiliation, and their address. We also would ask that you submit a written statement so that your comments may appear in the official record of the hearings. Unfortunately, we must also ask that you 1limit the amount of time of your presentation to about four minutes, so that the Commissioners may have a chance to ask questions and in order that we may be able to give everybody their time. We are most appreciative that so many people have asked for the opportunity to appear before the Commission, and we are anxious to hear from all of you. 1It is a real pleasure to introduce the lead-off witness, who is the Lieutenant Governor of the State of Wisconsin, Mr. Martin Schreiber. TESTIMONY OF LIEUTENANT GOVERNOR MARTIN J. SCHREIBER WISCONSIN SCHREIBER: Dr. Engleman and members of the National Arthritis Commission: Welcome to Wisconsin. I am Martin J. Schreiber, Lieutenant Governor of Wisconsin. I trust that your visit here today will be both fruitful and enlightening. I am neither an expert in rheumatology nor in the delivery system for treatment of rheumatic diseases. My appreciation for the ravages of arthritis and problems faced every day by arthritic persons is only developing. I feel, however, that I can speak to certain problems which are so basic that they may be somewhat overlooked in the preparation of the National Arthritis Plan. My purpose this morning, then, is to welcome the Commission and touch upon one aspect of rheumatic disease care which must not be neglected. Wisconsin is similar to many other states in that its health care resources are stretched far too thinly. This is especially true in the more specialized and sophisticated health care disciplines. But others here today will speak to this problem far better than I can. But beyond medical resources lies the equally important area of delivery of the many public and private services which affect the treatment and rehabilitation of patients. In the area of service delivery, one of the largest components is state government. In developing a National Arthritis Plan, the Commission must also consider the problem of how best to organize, coordinate, and deliver services to have maximum beneficial impact on patients. For example, State government in Wisconsin has a variety of agencies and services which assist a great many different people. In the area of health and human services particularly, there is a tendency toward 3-21 Milwaukee, Wisconsin November 10, 1975 fragmentation of these efrorts as they deal with people. The result is too often that separate agencies work on the 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 priine example cf this problem. Rheumatology remains an emerging field. The existing structures and programs were developed without benefit of the lessons it now can provide. The person afflicted with arthritis may encounter public health and education programs, medical assistance programs, various acute and chronic institutional programs, vocational rehabilitation, and more. Further, people who counsel arthritics or who actually participate in therapy may represent a variety of public and private entities, often with no sense of continuity between them. Unfortunately, too rarely is the whcle person treated, addressed, and informed in an appropriate manner. Nowhere does there exist today the capacity for such large scale coordination focused on all the resources within any state or region. The Commission would be advised to consider the necessity for funding consortia of agencies and services which would not only represent the vast needs for research and education in rheumatic diseases, but would also pull together the myriad of public and private programmatic resources in the area of rheumatic diseases. State government in Wisconsin has learned this lesson and has attempted to deal with the need for coordination in other long nejlected areas of social concern. The best example was the Governor's Task Force on problems of people with physical handicaps. This outstanding Task Force tackled the problem of civil rights of the handicapped and produced a document which cut across all disciplines and subject areas to identify the specific areas where remedial action by Government must be taken. The results of this task force will help those people afflicted with arthritis to exercise their full rights of access, participation, and growth as citizens. As this coordinated effort has helped raise the sensitivity of State government to new kinds of problems, so should the Commission follow a broad approach in cutting across present categories to confront the entire needs of arthritic citizens. Whether symposia are organized or more structured experiences are offered, a consortium made up of providers, consumers and planners could work to better tie together what currently exists and to plan for using future resources. If there is one message that I wish to present to the Commission, it is that limited resources must be spent where most effective. Attention to the development of coordinated networks of services and programs would be a wise investment for the entire nation. 3-22 Milwaukee, Wisconsin November 10, 1975 I thank you for the opportunity of appearing before you today. DONALDSON: Thank you again. We certainly will take your message to heart, and it is certainly a great way for us to start our hearings here. Are there any questions from the Commissioners? Yes. SCHREIBER: I might add that we have one other additional experience; that is primarily with the elderly, where we are attempting to provide services for them in their own homes. We find out that there really is a great lack of understanding of what current services exist; there is lack of coordination of these services and there is, on many occasions, a lack of awareness that these actual services do indeed and in fact exist. With that, then, not only are they available, but a great amount of human suffering and misery follows because of the fact that people are not aware or that they are not coordinated. DONALDSON: Again thank you very much for taking time out of your busy schedule to come. Now I would like to ask the following witnesses to come down and occupy the chairs at the table; and while you are coming down I will also ask the Commissioners to introduce themselves to you. If Dr. Gerson Bernhard, David Carley, and Dr. John Melvin -- we will take a moment now so that you may be aware of who the individual Commissioners are. I am Dr. William Donaldson. I am an orthopedic surgeon from Pittsburgh, Pennsylvania. MELICH: I am Doris Melich from Utah. I am the president of the Utah Arthritis chapter out there. SHIELDS: I am Marlin Shields. I am a physical therapist and I am representing the allied health professions on the Commission. JENERICK: I am Dr. Howard Jenerick, a staff member of the National Institutes of Health. LEWIS: I am Dr. Vivian Lewis, retired university professor of kinesiology, physiclogy of exercise. SHARP: Dr. Gordon Sharp. I am a rheumatologist at the University of Missouri, in Columbia, Missouri. DONALDSON: And now Cr. Bernhard, if we may hear from you please. TESTIMONY OF GERSON C. BERNHARD, M.D. DIRECTOR, RHEUMATIC DISEASE PROGRAM COLUMBIA HOSPITAL BERNHARD: The primary concern of medicine is the provision of comprehensive health care. In the face of extreme specializations, physicians continue to lock for means to meet the total needs of patients and to bring scientific advances of multiple specialities to bear on a 3-23 Milwaukee, Wisconsin November 10, 1975 single medical problem. The magnitude of the health care problem in rheumatic diseases is such that approximately 10 percent of the population of the United States is afflicted with this group of 87 disorders, covering all types of arthritis, muscle and connective tissue diseases, and in all age groups. : While there are about 2300 physician members of the American Rheumatism Association, the number of practicing physicians devoting the majority of their time to the care of rheumatic disease patients is much less -- perhaps not more than 800. Only a small number (a little over 3 percent) of rheumatic disease patients are seen by these specialists. The majority are cared for by physicians not specifically trained in rheumatology. The problem is to find a means of utilizing the small number of specialized physicians in a manner which will bring to the greatest number of patients not only the best rheumatologic experience, but also the best of other disciplines affecting the course of treatment and rehabilitation in its broadest sense. The challenge is to implement a program for the total treatment of patients, and provide professional education and advance knowledge about these diseases and their management. One . of the goals of the National Arthritis Act must be the education of all health professionals about the care of rheumatic disease patients. In particular, speciality training of physicians, nurses and therapists must be emphasized to expand our knowledge of these diseases, to teach subsequent professionals, and to provide care directly. It is equally important to transfer the most current scientific information to the care of patients with these diseases. We are challenged to provide comprehensive care with the most efficient utilization of our professional resources. Therefore, another major goal of the National Arthritis Act must be the support of programs that will accomplish this end. The care of rheumatic disease patients requires the services of several specialists, including physicians, surgeons, and allied health professionals who may work in different groupings depending upon the medical or surgical problem at hand. This group of specialists cannot replace the primary physician, but must function as consultants even though the chronic nature of the majority of rheumatic disorders necessitates ongoing treatment. Well trained physicians and surgeons can diagnose, treat, and refer to other specialists from their own offices. The medical care delivered may be of good quality, but when separated from other members of the team, the care is fragmented and often inefficient for both patient and physician. Furthermore, the care is not comprehensive because total care depends upon a multi-discipline approach. Each specialist must contribute the most advanced prospectus of his discipline. The frequent and easy interchange between specialists working as a team broadens their purview, improving their capability to meet the patient needs and prevent their own obsolescence. 3-24 Milwaukee, Wisconsin November 10, 1975 The majority of rheumatic diseases are cared for on an ambulatory basis. Outpatients as well as hospitalized patients require the sophisticated and costly diagnostic and treatment capability of a well equipped general hospital. It is in such hospitals that training opportunities may be possible for both general and specialized physicians, general and specialized nurses, as well as physical and occupational therapists. Since physicians and allied health professionals in a rheumatic disease program provide consultative care and a professional teaching service, they must serve in a regional context. Therefore, the hospital in which such a comprehensive program is to be located should be an institution serving a fairly large population. It is a more efficient use of scarce resources to concentrate specialists in a few hospitals of a region rather than attempting to staff programs in all institutions. Collecting specialists in one place provides an atmosphere for professional critique which stimulates excellence. It has been suggested that the care of rheumatic disease patients in the United States has been compromised because it has been predominately outpatient in nature. Yet, for economic and social reasons there has been a progressive trend to provide as much medical care on an ambulatory basis as possible. One of the major challenges of inter-disciplinary rheumatic disease programs, such as I have outlined, is to provide just as complete investigation and intensive applications of treatment for both hospitalized and non-hospitalized patients. This requires careful coordination with home care agencies, the community, and other institutions. Inpatient rheumatic disease units in which exemplary care is provided and taught to both patients and families should be developed as the initial step in implementing the regional rheumatic disease programs. A liaison must then te established with community health services such as Visiting Nurses! Associations, public health nurses, public schools, and outpatient rehakilitation facilities. In this way there can be continuity of care and extension of professional education beyond the confines of the hospital. Funding through the National Arthritis Act can be critical to the growth of this type of health care system. Financial support is required for the inaugural administrative costs. Most of the ongoing costs for services can be recovered from patient care revenues. Therefore, this portion of the program can become self sustaining. Support for education, both professional and of patients, will ke required on a continuing basis. Finally, any experiments in care delivery, especially in relation to home care agencies, need funding on an individual basis. A master formula for these regional programs cannot be applied uniformly throughout the United States. Needs and local situations will vary. Guidelines must therefore remain flexible and responsive to local and regional peculiarities. The primary challenge to implement a program providing comprehensive rheumatic disease care for patients of a region can be met by utilizing the existing resources, by collecting in one location the necessary specialists, and ky helping them develop the administrative and physical structure. This program may not provide total care less expensively than the current fragmented medical care system. However, this program does provide more efficient and effective use of highly skilled, specialized personnel. Hence, a greater number of patients may benefit from their 3-25 Milwaukee, Wisconsin November 10, 1975 skills. Furthermore, the association of teaching and research in a health care delivery setting will insure rapid translation of new information into effective disease management. DONALDSON: Thank you very much. One of the questions that occurs to me as I listen to your presentation -- which certainly is a strong one in support of centers that are located within health care units rather than a separate unit -- can you give us some idea as to how large a geographic population you would conceive such a center might serve? BERNHARD: Depending upon the size of the center in terms of inpatient beds, I would assume that one would need such a collection of perhaps 20 inpatient beds, 2 or 3 rheumatologists to cover an area of 250 to 300--or 400--perhaps 500 thousand population. Therefore, in a metropolitan area such as this, we would probably need, I would say, at least three such centers, perhaps four. BATCHELOR: I would like to ask Dr. Bernhard -- in your presentation you spoke about the need for some central action to the arthritis plan, but the need to keep this properly dealt with to local parenthesis concerned--that you may know, that the same day the Arthritis Act was signed into law that you had another law passed that had to do with the on a regional basis develop and help fill the vacancies, and so on. So that, in fact, Federal support or efforts of this kind, where the impact on patient care will indeed, according to this law, be subjected to local planning. I would like to ask you whether there has been any progress in this region for the development of health care agencies on the rheumatic act? ’ BERNHARD: It is my understanding, and as corporate member of the Comprehensive Health Planning Agency of Southeastern Wisconsin, this will apparently be the agency that will assume and accept that responsibility under the new legislation. This is an organization which is voluntary and has been functioning for the last several years; and it will now gain additional importance. SHIELDS: I would like to ask Dr. Bernhard -- what do you see as the current major problems that interfere with your extending your expertise and influence into a larger region around you? BERNHARD: I think it really comes down to not having enough people in an organized situation to do this. We need a few more rheumatologists, we need more expertise in nursing and physical medicine, and we need the administrative structures to permit us to utilize our physician time more completely. SHIELDS: Early on you would see some type of training.program that would generate more of the professionals as a major need? BERNHARD: I think this is a part of the function of such an -- of such a program, too; not just as trained specialized physicians, but to also train specialized people in the allied health professions in this kind of a health care delivery setting. 3-26 Milwaukee, Wisconsin November 10, 1975 DONALDSON: Well, thank you very much. Now we have the pleasure of hearing from David Carley, who is the president of the Medical College of Wisconsin. TESTIMONY OF DAVID CARLEY, Ph.D. PRESIDENT, MEDICAL COLLEGE OF WISCONSIN CARLEY: My own interest in medical affairs really began when Governor Lucey, of this state, appointed me chairman of the Task Force on Health Policy and Planning in 1971. I appear before you today not only as President of The Medical College of Wisconsin, but also as an arthritic, since I myself suffer from gout. As you know, research in recent years has resulted in the ability to diagnose my disease, gout, with exquisite precision. Not only are there drugs available to completely control the symptoms and rid the body of excess uric acid, but the mechanism of action of most of these drugs is known with pinpoint certainty. Thus I am fortunate in that gout is one of the most treatable diseases in all of medicine. Unfortunately, there are many other types of arthritis which lead to crippling, loss of work, and personal suffering, for which treatment is not so far advanced. Research support for arthritis has been dwindling relative to what it was only a - few years ago. It is imperative that research in arthritis and arthritis- related areas be intensified in order to improve the less than satisfactory treatment for many types of arthritis which exist in such enormous numbers in the population. An even more important priority is the education of more physicians who are skilled in the delivery of arthritis care. It is well and good to speak of a multidisciplinary approach to arthritis care, but any multidisciplinary team requires a leader. The leader unquestionably should be a skilled rheumatologist who has had adequate training and background in general internal medicine followed by two years of intensive work in the arthritis field. In the case of children, expert care could be rendered Ly a team captained by an internist-rheumatologist or by an even scarcer individual, the pediatrician-rheumatologist. There is no way at the present time to deliver in the State of Wisconsin the knowledge that now exists, let alone rapidly apply future advances in knowledge of prevention, diagnosis, and treatment. We are fortunate, here in Milwaukee, and at our Medical School, to have one of the nation's premier scientists in rheumatology, Dr. Danial McCarty, the chairman of our Department of Medicine. There is a comprehensive rheumatology program developing at the Medical College of Wisconsin. The first fellow in the field of arthritis and rheumatism ever trained in the State of Wisconsin began training in July 1975, and will see patients as a fully qualified consultant in July 1977. The University of Wisconsin, at the present time, has only one rheumatologist who is vastly overworked, and by himself cannot mount an effective training program. Thus, for a State of 4.6 million people, we have exactly one physician in training at the present time. There are fewer than 10 qualified rheumatologists practicing in the State, including 3-27 Milwaukee, Wisconsin November 10, 1975 those full time in the two medical schools whose patient service commitment is reduced Ly virtue of their teaching and research responsibilites. I suggest that we need 50 -60 additional rheumatologists in this State. The training mission in Wisconsin appears enormous. I would like to see sufficient resources generated by virtue of the National Arthritis Act to assure a sound academic unit in each of the two medical schools in the State with sufficient training, so that this enormous deficiency in the ability required tc deliver even what is known at the present time to the population can be eliminated in our lifetime. Thank you very much. DONALDSON: Thank you. Do any of the Commissioners have any questions? MELICH: Yes, Dr. Carley =-- you mentioned the training of the rheumatologists with the emphasis on internal medicine -- you used the term internal rhysician. To what extent should the rheumatologist be involved with external or physical medicine? CARLEY: Well, I mentioned, Dr. -- I mentioned both internal medicine, I also mentioned pediatric medicine. I certainly would not limit the application or the education of rheumatology to internal or pediatric medicine. DONALDSON: Rill BATCHELOR: In your introduction, you mentioned that you had a role in 1971 in health policy and planning for the State, Federal -- did that role continue? CARLEY: Well, that particular role didn't, Dr. That Health Policy Task Force started in 1971 and came up with some hundred and seventy-five recommendations to the State legislature, about half of which -- then the subsequent two sessions have been acted. Since then I have been chairman of the Medical Education Review Commission of the State, and from one thing led to another; and I became president of the Medical School. But there are a numker of research rerorts hearings we held all over the State. If your are interested in the puklications of those, we would be happy to deliver them. BATCHELOR: = This is part of our continuing education, as well as saving our time, too; and we would appreciate very much having from you the publication that came from that. CARLEY: Be happy to do that. I would be glad to give them to you. * DONALDSON: Gordon. SHARP: Dr. Carley, assuming that resources, at least initially, may not be too plentiful, what would you consider the top priority in the early phasing in of the programs of the National Arthritis Act? 3-28 Milwaukee, Wisconsin November 10, 1975 CARLEY: Excuse me Dr., you say, what would I consider or what did I consider. SHARP: What would you consider the highest initial priority for funding under the Arthritis Act? CARLEY: Let me say that I probably am not competent to be commenting on the allocation of resources and scarce funds. I have a strong bias and I think I alluded to that with regard to education. I would not be prepared to say that I think education is the first among so many things that need equal treatment, and want to be honest and candid with you on that score. We feel, and as I said, that education is a tremendous and important beginning. Whether or not certain aspects and service delivery systems are more important at this point, I frankly would not be competent enough to say; but I would like to leave a strong implication of necessity in the educational field. SHARP: Well surely you have indicated a great lack of sufficient education manpower to do the job at this point. CARLEY: With only -- right =- with only one physician in training, precisely, that statistic is so alarming. MELICH: I have one other question: Are the medical -- does the Medical College have such a rapport that they are beginning to create more interest among other physicians to go into rheumatology as a practicing field? CARLEY: I would 1like to ke able to say the answer to that is yes. Dr. McCarty and my associates here at the table, both members of our faculty, are probably better able to answer that. I think the answer is yes, doctor. To what extent we can induce other frhysicians in other fields to beccme interested, I myself am not all that aware. But I think that with those who are appearing on the program together with me and others -- I think they will be able to give you a very qualified answer to that. DONALDSON: We have time only for one more question. MELICH: This is just a brief one. I would like to know, is it because of manpower that you only have one person training right now, or is it because they lack the motivation or the need for financial assistance? CARLEY: Well, I think our financial assistance program is the one that is critical. I don't think that there is lack cf motivation. I see in the two gertlemen at the table with me, both esteemed members of our faculty in various fields, and Dr. McCarty, who will follow me as chairman -- I am impressed. I have only been at the medical school for eight months, and I am impressed with the motivation not only by our faculty, but the encouragement in this community toward areas of arthritis. But I think the message and the burden of the problem is the great cost -- comparative cost -- in terms of training physicians of the particular area; and also the lack of funds. Fifty to sixty that I mentioned in my 3-29 Milwaukee, Wisconsin November 10, 1975 comments is a large number, but not anywhere near too large to serve this State. And it is a matter principally financed, not of motivation, or manpower -- I think is what I think you meant or said in fact when you met (inaudible). DONALDSON: Well thank you very much. Now we will hear from Dr. John Melvin. TESTIMONY OF JOHN L. MELVIN, M.D. DEPARTMENT OF PHYSICAL MEDICINE AND REHABILITATION MEDICAL COLLEGE OF WISCONSIN MELVIN: Mr. Chairman, Ladies and Gentlemen: Arthritis to a large extent represents a chronic disease with which an individual must deal for the rest of his or her life. As such, episodic health or rehabilitation care of the type traditionally used in medicine does not serve the needs of this group satisfactorily. What is needed, in my view, is a system of support, medical and rehabilitative, which is continuous and aimed at maximizing the individual's function throughout the course of the disorder. One of the key elements to such continuity is education of the patient regarding his illness and its care. Primary responsibility for learning how to utilize medications and how to function in a manner minimizing stress on involved joints must be transferred to the patient. This ,involves not only initial education early in the disease, but also regular periodic reviews: patient continuing education if you like. To accomplish this, health professionals must be trained in educational procedures which induce the recipients to significantly alter behavior, systems for monitoring success and validity of procedures must be developed, and funding resources must be available to support such activities through usual insurance mechanisms. The chronic nature of arthritis leads to the need for a wide range of maintenance programs to provide a satisfactory quality of life and to reduce the likelihood of institutionalization. An example includes review of and perhaps administration of physical therapy procedures to maintain strength and joint motion. Another would ke the availability of prepared meals and assistance in maintenance of ones living quarters. Another would be the availability of meaningful day activity programs. Such programs can include socialization, recreational, avocational, and even limited vocational elements. At the present time, the allocation cf resources to maintenance programs for physically impaired individuals is quite limited. The physical changes included by arthritis frequently cannot be totally eliminated, leading to the need for adaptive equipment and environmental modifications. This may mean such things as casted shoes, altered eating utensils, special kitchen modifications, or general relief from architectural barriers. To accomplish the needs in this area, similar strategies as outlined above are needed; patient education, professional education and involvement; societal understanding and 3-30 Milwaukee, Wisconsin November 10, 1975 interest, systems development, and availakility of financial support for such activities. The points I have mentioned relate to the ongcing care of one with chronic illness. They are designed to prevent and minimize disability. I feel at present our focus has been episodic and disease oriented without sufficient attention to continuous concern for the problems of the involved individuals. DONALDSON: Thank you very much. Are there questions? Yes. MELICH: I am particularly interested in what you are discussing. I would like to ask you -- what approach do you have to the emotional and psychological problems of the patients that come with definite upsetting kinds of things? What do you do? Do you have a definite program for this sort of thing? MELVIN: well we have what we hope is a team approach which includes people from psychology, social work, in addition to all the other medically oriented professionals. The role of the psychology and social work peorle is not only to work with the patients as needed, but to work with the professionals in terms of helping them learn how to deal with the emotional and psychological problems of these patients; so that we attempt to get a certain empathy and involvement of the entire group of people, each trying to reinforce the other. So, I think that our system is basically encompassing a broad range of professionals with a broad range of objectives. Our objectives are not limited to, for instance, keeping information minimal -- to a minimal level, kut rather to deal with broader role definitions of the individual. Are they working or do they want to work; how are they relating to their family; are they assuming their roles as parents; as mother; things of this nature. MELICH: Thank you. DONALDSON: Yes. SHIELDS: You talked akout patient education and of course the value of it. one of the rprcblems that I can see is that in the majority of cases it is not paid for, and therefore, it becomes a very difficult problem. Do you have any help -- I am sure that we are going to have to convince insurance companies that this will cut costs; rather than just add costs and do you have any feelings in this regard or any help that you would like to talk about? MELVIN: Well, ves, the proklem kasically, as I view it, is that in chronic illness in general and arthritis in specific case, there is too much of a carry over of the tradition of what medicine does to the patient rather than the patient assuming responsibilities for what happenes. Now the reason that I put right after that we have to train professionals in things that actually change behavior of people -- I am not sure we even know what are the Lest educational procedures for this now -- was that we have to have an evaluation component to start to monitor whether we are doing well or not. This goes back into the total need for a system that not only sets up its objectives, but then monitors how it meets those 3-31 Milwaukee, Wisconsin November 10, 1975 objectives; and so I don't have the perfect answer to it. We are trying all sorts of things, like problem oriented records, monitoring, program evaluation of the type that CARF and some of the other organizations are working with; but we have not answered the problem. DONALDSON: Well thank you very much. I am afraid we must move on. We certainly appreciate all three of your being here and giving us this information. Now if I could ask Elaine Seelhorst and Dr. Daniel McCarty to join Dr. Rubin at the table. Dr. Rubin if you will, please. TESTIMONY OF LAWRENCE M. RUBIN, D.P.M. COORDINATOR, RHEUMATOLOGY UNIT ILLINOIS COLLEGE OF PODIATRIC MEDICINE RUBIN: I am pleased to have this opportunity to inform the Commission of podiatry's involvement with the problem of rheumatic disease. I would also like to convey to the Commission the profession's desire to cooperate with it and to contribute to those future programs directed against arthritis and related diseases that the Commission will initiate. The podiatrist is an independent provider of health services whose practice consists of the diagnosis and management of diseases and disorders of the feet. He is educated to render these services through pre-professional and professional academic curricula, and through clinical training which parallel that of medicine and dentistry. There are approximately 8,000 podiatrists in the U.S.A., most of whom are engaged in private practice, and who provide upwards of 24,000,000 patient visits annually. The majority of patients treated by podiatrists are between the ages of 17 and 64 years (57.5%), with a significant percentage being over 65 years (30.75%). In the course of the practice of podiatric medicine, the podiatrist generally sees more foot abnormalities than any other member of the medical team. An especially high percentage of the conditions he sees are either arthritic in nature or related to arthritis. This is understandable when one considers that the feet house approximately 66 of the body's Jjcints, and the major arthropathies of degenerative joint disease, rheumatoid arthritis and gouty arthritis all have a particular predilection for the feet. Persons suffering arthritic foot pain or disability, whether aware of its arthritic causation or not, frequently seek relief from the podiatrist, and therefore a significant proportion of the clinical practice of podiatric medicine is rheumatologic in nature. ’ While arthritic involvement of the feet causes considerable suffering, disability, and economic impact, the prevailing opinion in both podiatry and medicine is that it has received proportionally little attention from the general medical community when compared to arthritic manifestations of other regions of the body. Until virtual crippling exists, it is not 3-32 Milwaukee, Wisconsin November 10, 1975 unusual for arthritic foot complaints to be perfunctorily attributed to other causes such as "flat feet" or "dropped metatarsal arches." Equally prevalent is the situation in which these complaints are handled with little more than the recommendation for a sturdier or better fit shoe. Because there is an extensive armamentarium of effective therapeutic and deformity-preventing measures which could be utilized, this tendency to devote minimal concern and attention to the feet is regrettable. The situation is further complicated by a tendency for the public in general to attempt self-treatment of their foot ailments with medications and remedies bought on the basis of advertising claims, or to follow non- professional advice from shoe clerks and commercial appliance technicians. These factors all too often account for an unfortunate delay in the diagnosis of foot-manifest arthritis and a failure to institute those therapeutic and preventive measures which are available and capable of alleviating unnecessary pain and deformity. The podiatrist, however, can and does render a comprehensive and integrated approach to the foot problems of the arthritic patient and can often obviate the unfortunate sequelae of delayed diagnosis and inadequate therapy. A representative example of the podiatrist's role as a member of the arthritis medical team can be seen in the care of the patient with foot manifestations of rheumatoid arthritis. Because the clinical symptoms of this disease often first appear in the feet, the podiatrist's high index of suspicion in the common complaints of arch and heel pain, "metatarsalgia", bunions, and other seemingly minor foot problems often leads to its early detection. Prompt referral to the medical members of the arthritis team can now result in immediate attention to the constitutional elements of the disease and involvements of areas other than the feet. Meanwhile, using those therapeutic measures which are universal in arthritis management, and those special medical, biomechanical, surgical and palliative means the profession of podiatry has developed through its singular concentration upon the feet, the podiatrist is in a unique position to initiate therapy and measures aimed at preventing future deformity and disability. In conclusion, by virtue of his education and concentration of practice, the podiatrist detects and provides necessary specialized management of foot-manifest rheumatic disease while ccoperating with other members of the medical team in the total care of the patient. The profession of podiatry shares the Commission's vital concern for the welfare of the arthritic patient, offers its full support for the Commission's important undertakings, and requests that it be called upon to contribute in the offensive against arthritis and related diseases. DONALDSON: Thank you very much. Are there questions? LEWIS: One question. In your opinion, is the area of podiatry accepted by other doctors, relative to their ability to do a good job in the medical field? 3-33 Milwaukee, Wisconsin November 10, 1975 RUBIN: Mrs. Lewis, the profession of podiatry is a relatively young one, and has changed dramatically within the last 20 years. I would say that today our relationship with the general medical community is excellent, and we cooperate with them on a very, very fine basis. That would be my answer; yes. DONALDSON: Are there other questions? If not, thank you very much, Dr. Rubin. We will now hear from Elaine Seelhorst. TESTIMONY OF F. ELAINE SEELHORST PATIENT SEELHORST: Mr. Chairman and members of this Commission: Thank you for the opportunity to appear here today. I shall bring you some thoughts about arthritis in rural America where my entire life has been spent. Often arthritis symptoms are tolerated by people and a physician is not seen until the disease is advanced. Since most new developments in the field of arthritis have occurred during the last 10 years or so, most physicians and other health professionals have had little or no training therein. Needless severe crippling, which often occurs, could be alleviated if the public, physicians, and health professionals were better informed. The most direct way to bring immediate improved care is through continuing education for practicing physicians and health professionals located in rural areas. If at all possible the teaching should occur within the rural setting rather than hundreds of miles away in metropolitan areas, even though the specialists are all located there. This would accomplish three immediate things. First: Physicians in rural areas would fully realize that rheumatic disease is very serious, no longer to be considered aches and pains one must learn to live with and that they are being trained in an all-out effort to help their patients lead more productive lives through improved treatment methods. Second: that patients should be referred when necessary and where the specialists and centers are located. Third: These physicians would quickly learn that a team effort is necessary for the successful rehabilitation of severely disabled persons and that they, too, have a place in the team. Hand-in-hand with continuing education cf professionals would be that of the general public via various news media. Every innovative means at our disposal should be utilized. Specifically, your attention is called to Public Law 93-641 National Health Planning and Resources Development Act of 1974, which is to develop centers for health and technology on a regional basis. Millions have already been stent. There is an established and operational two-way audio-visual interactive TV between Ohio State University School of Medicine and Hosritals, Columbus, Ohio, with four other hospitals in southeastern Ohio. This system could be extended along the Ohio Valley into northern West Virginia, Kentucky, and southern Ohio; thence, to the University of Cincinnati School of Medicine. Indeed, it is the "wave of the future." Someone with vision, imagination, and dedication could set up 3-34 Milwaukee, Wisconsin November 10, 1975 marvelous teaching programs on rheumatic disease on all levels. The system seems ideally suited for multifaceted arthritis care and teaching, if we are flexible enough to let it happen. It becomes increasingly so in our area since the Ohio General Assembly passed legislaticn for the establishment of a College of Osteopathic Medicine at Ohio University in Athens. Also, a degree-program in nursing has just been implemented. Ohio University has long graduated excellent pre-medical and pre-physical therapy students who have become doctors-of-medicine and physical theragists. Since the micro-wave system spans time and space, some alleviation of horrendous transportaticn problems encountered by arthritis patients in rural areas could be expected. Another innovation would be mobile units for early detection, screening and diagnosis of those susceptible to rheumatic disease. This would include primary and secondary school students. Home health «care in Athens County is woefully inadequate for those severely afflicted with arthritis. To my knowledge there are no public programs aimed at rehabilitation of arthritis patients. A whole new approach is needed. It is logical to assume the same inadequacy prevails in most other rural areas. Many people who already have destroyed joints do not know about orthopedic implants which would restore joint function and free them from pain. This knowledge would help keep many of our older citizens out of nursing homes. Puklic information about orthopedic procedures, as well as various occupational self-help aids, is needed. People who are contemplating total hip replacement and other such implants need to talk to peers who have had these procedures successfully performed. It is a big decision to make and the most stoical person feels some apprehension. This is not to suggest that the patient be talked into surgery. It does mean informing about things one might expect before and after successful surgery as one has experienced. Video-tape interviews and movies with pre and post operative patients, as well as professionals involved, could Le extremely helpful to potential patients and their families. These interviews should follow through successful rehabilitation and return home. ' Follow-up for persons with joint implants is a must. As those with implants work, rglay, and travel in rural areas, the likelihood of traumatic accidents increase dramatically. What are emergency rooms in rural hospitals to do with such victims? Indeed, what is to be done in metropolitan areas? It is urgent that immediate thought be given this problem before there are several million people throughout the country with implants. Now is the time to find solutions to this problem, not ten years from now. Rheumatic disease is, in my opinion and personal experience, as serious as cancer or heart disease. In 1970 I had a radical mastectomy. The pain following was minor compared to that which I then suffered with RA, continue tc and will suffer into the future where I shall spend the rest of my life. Death, in my view, is not the ultimate outrage or 3-35 Milwaukee, Wisconsin November 10, 1975 indignity. Invalidism and inability to care for one's most primary body needs qualifies for that dubious distinction. One can function pain free after a successful radical mastectomy and no one suspects. Not so with RA. The physical pain is forever; deformity, very visible; imprisonment without bars, a reality; mental agony and frustration, total. To add insult to injury no one understands or cares with the exception of a few rare persons. Persons suffering from severe rheumatic disease, as well as those newly diagnosed, often go through severe trauma psychologically. They desperately need someone to whom they can tell all. Through the last decade I have learned people will talk to a lay sufferer who treats them as equals. Nothing is held back. This includes such topics as sex, personal appearance, loss cf friends and family, and much more. Their credibility and integrity having been shattered by such attitudes and comments as: "It is all in your head." or "say, just what is wrong with you anyway"? Almost all speak of suicide thoughts at one time or the other. I often wonder how many suicide victims commit this last desperate act kecause of arthritis. It would be most interesting data because I have heard this desire for relief through death over and over again from other patients during my own hospitalization periods. A common statement being, "I want to die on the operating table if it can't be fixed," usually referring to pain-wracked hips no longer useable. Frankly, that would get a little rough on the surgical team and fortunately does not happen frequently. The Central Ohio Chapter of the Arthritis Foundation has begun to expand its umbrella into southeastern Ohio counties. When first organized, it served Columbus and Franklin Counties exclusively. The attached map has counties checked which now have organized units, one of the most recent being Athens County where I am a volunteer. Since August of 1974 literature (never before seen by most residents) has been distributed; a public forum teaching about arthritis by specialists from Columbus; and, recently, a seminar for area physicians presented by specialists in the field of rheumatic disease was held in Athens County. There has also been exposure via various media, TV public service spots, cablevision, newspapers, etc. All of this has helped people in our area. Much more needs to be done. Patients are being admitted to clinics in Columbus which are supported in part by the Arthritis Foundation. To my knowledge the Arthritis Foundation is the only source of help available to arthritis patients. The Foundation cannot help with transportation of patients, nor do we envision sufficient funding to do so. } The following are more facts regarding the area covered by the Central Ohio Chapter of the Arthritis Foundation, as well as the tri-state region. There are one million people in Franklin County (Columbus) with one million more in the other 24 counties. There are only eight practicing rheumatologists in the Chapter, all located in Columbus. There are no rheumatologists in all of West Virginia and eastern Kentucky. There is one in Lexington, Kentucky, with several in Cincinnati, Ohio. There is no formal rheumatology program at Ohio State University School of Medicine at this time. The Arthritis Foundation has only three paid staff personnel 3-36 Milwaukee, Wisconsin November 10, 1975 located in Columbus to cover the entire 25 counties. All others are volunteers. These few facts barely begin to point out glaring inadequacies in this field. Certainly our area is not unique in this respect. The need for specialists in every field of arthritis care is so great as to defy description. Not to be omitted here is my pet -- RESEARCH. The cause of these diseases will be discovered and the cure will surely follow. Let us get on with it so that we will be among the last of mankind to suffer these devastating diseases. The following are three typical stories told by patients and/or their families: A 14-year-old boy with JRA. For two years a pediatrician diagnosed him as "growing pains." By the time correct diagnosis was made muscle atrophy had occurred. He took off on a friend's motorcycle one evening with no safety gear. His mother was frantic until he returned. This was not typical behavior. His mother asked why he did it. He knew: it was wrong. He started crying saying, "Mom, I am afraid I won't be able to ride a motorcycle when I am cld enough. I wanted to know what it is like to drive it myself." School authorities paddled him because he and two other boys went to see a friend during school hours. He was badly bruised and marks remained for several weeks. His mother was receiving psychological ccunseling for domestic problems she could not cope with. She was frantic for a source of help for her son. In 1954, a schoolteacher was told she probably had RA when she first visited a physician with symgtoms. He said, "Lady, I think you have rheumatoid arthritis and if you are smart you will go home and sit in a rocker on your front porch and never do another thing as long as you live." She elected to continue teaching. She took so much aspirin daily to ease the pain that her stomach rebelled with massive hemorrhaging. She apparently did not realize aspirin could have these results. She is on some type of medication now and sees a physician now and then. She needs knee replacements. She was delighted to learn about certain aids and devices she needed. A man, nearing retirement age, has suffered from severe RA for many years. One can hardly believe the extreme deformity in his hands and feet. Somehow he manages to work although he barely makes it. He has been advised by a rheumatologist to retire. He fell and tore loose all tendons at both knees. An orthopedic surgeon tried to repair the damage. It was a disaster! Both he and his wife are very alarmed at the thought of further surgery advised for his hands, feet, and replacement of the knees. Prior to the accident he did not have a physician. He did nothing about the disease. He does not communicate well with doctors. His wife is a nervous wreck. She can hardly bear the pain she sees him suffering. She said, "what can I do? I love him deformity and all. I shall surely crack up." There is much more which needs to ke said, but there is no time. I can only call a few pressing needs to your attention. The final decision of what is to ke done is in your hands. 3-37 Milwaukee, Wisconsin November 10, 1975 Thank you. DONALDSON: Well, thank you very much. I can assure you that the Commission has great empathy for the problems you have raised. We are all aware of them. I am an orthopedic surgeon and I know particularly the one you talk about. Are there other questions? Since this is the particular part of the Commission I am interested in, would you tell me what you meant when you said that you felt a patient should talk to a lay person in relation to your problems --would you say as part of the arthritis team, or how did you work that as a structure? SEELHORST: Yes; I implied that and I do mean that. I do think that somewhere along the line there should be someway for a patient to communicate thoughts. I think it would be very therapeutic if there were someone, say maybe that could kind of bridge the gap between the professionals. I am sure that things have been said to me by other persons seriously afflicted with these diseases that they probably won't say to a physician. Possibly they are intimated, afraid to -- and I speak in particular from the standpoint of what I know best, the area that I come from. MELICH: Thank you very much. POLLEY: I would like to ask, do you have adequate medical care in Athens, from your point of view and particularly rheumatologically? SEELHORST: No; we don't. From the home health care point of view it is woefully inadequate. My own experience, this is sc. Now in Columbus, Ohio there are about eight rheumatologists. There about a million people in Columbus. There are a million more in the other 24 or so counties to the southeast of that. Diagnosis -- I have seen it -- we will get people diagnosed by local physicians. They don't know that they have arthritis at all when they are sent to the centers. They didn't even know that there was a place they could go. I have had people call me. By word of mouth they had heard that somewhere I had gotten some help, because I wasn't in a wheelchair and IT am no longer in that. They wanted to know, where did I go. People as far away as Pike County, Kentucky calling me on the telephone! This is what happened. This is how I got involved in trying to help with a situation like this. DONALDSON: Well thank you very much. Our next witness really needs no intrcducticn as far as people involved in the world of rheumatology is concerned, but for the record it is Dr. Daniel McCarty, Chairman of the Department of Medicine, Medical College of Wisconsin. Dan. 3-38 Milwaukee, Wisconsin November 10, 1975 TESTIMONY OF DANIEL J. MCCARTY, M.LC. CHAIRMAN, DEPARTMENT OF MEDICINE MECICAL COLLEGE OF WISCONSIN MCCARTY: Thank you very much Bill. It is a pleasure to have this opportunity to arpear before this unique body. I have been chairman of the medical department at the Medical College of Wisconsin for about 18 months. Before that, for 15 years, I was head of a rheumatology section, first at Honoman Medical College in Philadelphia; for the 8 years prior to my coming to Milwaukee, I was head of the division of arthritis and metabolic diseases at the University of Chicago. I want to make it perfectly clear at this point that I continue to be active in the care of arthritic patients and teaching and research in arthritis, despite my new position. I would like to make five points. one: The ultimate goal of a National Arthritis Plan must be improvement of patient care. That must ke the overriding priority. How to get there. We must develop the ability to deliver excellent care based on current knowledge, which we are not doing -- I think Dr. Carley spoke to that this mcrning; and two, develop new knowledge and research that will lead to better understanding of the many types of arthritic diseases and either to their prevention or to improve diagnosis and treatment. Two: I think it is fair to say that U.S. medical schools have done a very poor jok in educating students in the arthritis field relative to many other areas of medicine; for example, heart disease or obstetrics. Very few medical students cannot rattle off a list of various kinds of congential heart disease, which they will rarely see and never treat; but few residents in medicine, people three or four years beyond this, can intelligently lay hands on a patient with arthritis. I would like to site the fact that I once performed a piece of research which required opening up the knee joints of 215 anatomical cadavers in four of the five Philadelphia medical schools over a 2 year period. These are anatomical cadavers, and this was after the freshman med students were finished with them. Not one knee had been dissected; not one joint had been dissected. This was very nice for the purposes of our study. However, I could find no hearts, lungs, or kidneys that had not been not dissected exhaustively. I just point out this fact because the neglect of the musculoskeletal system begins very early in medical school education. Three: Excellent patient care, I think everyone would agree, is best delivered by a team aprroach with medical people, paramedical people, and surgeons; but all teams require a captain. I believe that the rheumatologist, i.e. an internist with two additional years of intensive training in the field of arthritis, is superbly equipped to captain such a team. Four: How many rheumatologists are there in the United States and where are they? This is a preprint of an article which is in gress in "Arthritis and Rheumatism", a journal close to my heart, since I was its editor for five years--a few years ago. There are roughly 900 such specialists in the United States. As a result of the first two 3-39 Milwaukee, Wisconsin November 10, 1975 examinations given for this purpose in 72 and 74, about half of these are diplomates of the American Board of Rheumatology. Five: How many rheumatologists do we need in the United States? I think this point deserves a lot of study; and my study here is relatively crude. A manpower study conducted by the Arthritis Foundation several years ago in 1972 suggested 4.2 per million population. One rheumatologist per--I am sorry--per hundred thousand population. One per hundred thousand would appear to be a rock bottom figure. Only two states have one per hundred thousand at the present time; that is New Mexico and Massachusetts. The State of Wisconsin needs at least 40 more to reach that rock bottom figure. My conclusions are as folows: One, that the training of the team captains of the rheumatologists be the first crder of priority. Two that the sites of need ke pinpointed; that the job descriptions be looked into; and that the facilities needed for the team care be created in these sites of needs. Third, that centers based in teaching hospitals that have meaningful major University affiliation be strengthened to include: 1) a clinical team that serves as a model of efficient and effective patient care and 2) the capacity to perform meaningful research and postgraduate education. Thank you. DONALDSON: Thank you very much. Are they questions for Dr. McCarty? Yes. SHARP: Dr. McCarty, the recent survey of the Professional Education Committee of the Arthritis Foundation has shown that there are 26 medical schools in this country without rheumatic disease divisions or sections. Even in those institutions that have arthritis programs, medical students and house staff rotate through those programs -- only ten percent of the total rotate through those programs. I wonder if you would speak to why this situation exists; is it tolerable; and how can we overcome it? MCCARTY: Well, I may not have all the answers but I can give you my biases. Number one: Rheumatology is a relatively recent speciality. I think it was growing rapidly until the demise of the training program, the so-called research training programs which were, in fact, training people for practice. The demise of these programs cut the heart out of many of the arthritis programs in the United States. At least it certainly stopped the growth. We are training no more rheumatology specialists now than we did 10 years ago, I don't believe. The reason I site that is because the applications for memkership in the American Rheumatism Association are linear; they have not risen sharply. I think that as a chairman, I can speak to the financial problem in supporting any meaningful critical mass of professionals in a given discipline. In other words, rheumatology is competitive with heart, kidney, gastroenterology, endocrinology, etc. Some of these fields are tremendously lucrative. The american medicine, right now, is based on the ability to earn its way. In other words, the cardiology team and the cardiologist dcing open heart surgery means money in the pocket of the 3-40 Milwaukee, Wisconsin November 10, 1975 hospital; it means money coming in. Arthritis is not a big money-making operation; it is chronic disease. The freople who have arthritis must compete for beds with acutely ill people who are bleeding, and so on; they don't compete well. The fiscal means to develop a critical mass of specialists within teaching hospitals is severely handicagged. I am doing it because I happen to be chairman and also a rheumatologist and I could not stand to have a department without a good rheumatology division. But most chairman are not rheumatologists, and they really don't care very deeply. They are pressured from the larger divisions to add more faculty. So, I think that is a major problem--the space and the funds, particularly salary support-- also for fellowships. There is no ready source of money for fellows. DONALDSON: Bill, do you have a question? BATCHELOR: Dr. McCarty, would you touch particularly on the point that in addition to individuals who have a thorough knowledge as experts in this field, that there is a need. MCCARTY: I think this point came up earlier today, is there any 1lack of interest in the field. TI think not. I think it was an. enormous amount of interest on the part of students and house staff in this area. The interest is spurred, however. There is tremendous amount of interest in our institution at the present time. But, it spurred by a hard core critical mass of people who are dedicated to this area -- being in the medical school -- being represented on the curriculum commitee -- representing their views strongly in ccmpetition with all the other specialities and generalities of medicine. Medical school is a very competitive environment, as you know. SHIELDS: Dr. McCarty, knowing the overall problem as well as you do, I was wondering, if you were in control of the money, what would be your first priority in terms of where you would put it? MCCARTY: If I were the czar of the money, I would make sure that every medical school in the United States had a first rate program. The spin-’ off from that training program will be enormous you see, because the fellows will train the house staff and the house staff will train the students. You get more bang for the buck by putting the money in there -- more than you will get anywhere else. The second thing, I think I would put money into programs that essentially have positions that are on a full time -- or they have some limit on the top of their salary. In other words, I don't think that we should simply stimulate private practice. There is nothing wrong with this, but if good teaching is to be done, the teacher has to have time to teach, and not be totally consumed with patient responsibilities. I think certain criteria, as to the develorment of these programs, has to be worked out -- these guidelines. I would insist that the training of the future consultants be first-rate; that is, on a par with the training of a cardiologist, endocrinologist, or other types of specialists. This means some exposure to research, because if they don't have that, they won't be 3-41 Milwaukee, Wisconsin November 10, 1975 able to read the literature. There is no way that they will be able to educate themselves on into their careers. DONALDSON: Well, thank you very much. I am afraid we must move on. Janet Zahorik. TESTIMONY OF JANET ZAHORIK PATIENT ZAHORIK: Some 16 years ago, I told our family doctor that for the past few months I had been having morning stiffness, swollen hands and feet. He quickly looked at my swollen fingers and said, "You may have the start of 'a little arthritis'." Then he added, "You are lucky. At least it is a disease you won't die from —-- but sometimes you may wish you were dead!." "Try to rest more," he said, "and take some aspirin whenever you have any pain." My doctor, at that time, was as informed about arthritis as I was. Not 1long after, I thought I certainly was lucky. Things began to go better. I thought my "little arthritis" had just gone away. Now I know better. My disease was still active, but I had gone into a remission. For the next few years my arthritis was a kind of on-and-off thing, but I could somehow manage my daily activities. Then I began to feel, once again, the morning stiffness, pain, and tiredness. Only this time it lasted for longer periods of time, and the pain was becoming more severe. I was having a difficult time trying to keep up with simple everyday things. From my hands and feet, the pain was beginning to travel to my knees, hips, eltows, and shoulders. With slippered feet and a shuffling walk, I found another doctor. This doctor took x-rays and blood tests. He confirmed I had rheumatoid arthritis and suggested I go to the hospital for a complete joint rest. I know now that would have been the best thing for me to do. But at the time, with three young, lively children, a husband working two jobs, and a good-sized house for me tc maintain, I felt it was impossible for me to ke away. Yet, my life 'was becoming impossible, too. The doctor's parting words to me were: "If something isn't done for you, you will end up in an institution." 3-42 Milwaukee, Wisconsin November 10, 1975 IT am sure he said this because he wanted me to realize the seriousness of my illness. But my disease still had not been fully explained to me -- no program worked out on how I could cope with it myself. I went home with devastating visions -- visions of crippled hands and wheelchairs. This was all I knew of arthritis. I knew no one who had rheumatoid arthritis. There was no one to talk to about the feelings and fears IT had. Or, would anyone understand them? I felt completely alone and went home feeling not only physically ill, but emotionally ill as well. This was my introduction to rheumatoid arthritis. I have come a long way since that day. I was fortunate in finding an excellent rheumatologist. I have learned about my disease and how to work with it. This takes away much of the fear associated with a chronic illness. As an arthritic, my sincerest concern is with the thousands of people in Wisconsin who need our help. We can help many, with patient and family education, thus saving them from those first painful and frightening steps, I firmly believe, for this to become a reality, we desperately need more funding for: (1) patient and family education (2) the training of more rheumatologists (3) funds-for research (4) educational programs for nurses, O.T. and P.T. Departments, who work closely with the patient and need to relate to their fears and frustrations. All this will take money! But let us help as many arthritics as we can, and they, in turn, will begin to help themselves and others. I strongly urge the National Arthritis Commission to help us utilize these programs with appropriate funding! To give wus the chance--to wipe out the Nation's number one crippling disease. Let's put hope back into the eyes of the already afflicted. let's take the desperate fear -- yes, fear -- from the eyes of any man, woman, or child, if ever they should hear these words: 3-43 Milwaukee, Wisconsin November 10, 1975 "The results of your tests show you have Rheumatoid Arthritis." DCNALDSON: Thank you very much. Yes. SHIELDS: I would just like to ask a similar question to a patient that I asked to Dr. McCarty. In terms of -- from your standpoint, if you were in ccntrol of the funds, where would you feel your priority would be? ZAHORIK: Well, naturally, everyone would like a fast cure; but the results from research will be a long-range goal. We all know we need more rheumatologists, Lkut a rheumatologist can't be stamped out in a year or two; so we have another long-range goal. As an arthritic, I want to see an accelerated action plan that would be of service to the patient now; family, patient, and allied health educational programs. These programs would benefit the patient and their families in learning, in adjusting, and learning to cope and just live with the everyday problems of arthritis until we achieve--and we will achieve -- our ultimate goal. DONALDSON: Obviously you have impressed everybody, including the audience; we thank you for coming here and sharing your thoughts with us. I will now ask Dr. Goldman if he would please come forward. TESTIMONY OF ALLAN L. GOLDMAN, M.D. CHAIRMAN, WRMP/WAF SUBCOMMITTEE; DIRECTOR, ARTHRITIS PROGRAM, SACRED HEART REHABILITATION HOSPITAL GOLDMAN: The importance of conservative therapy using a team approach in a controlled environment has been emphasized by Dr. Engleman. Unfortunately, Dr. Engleman also pcinted out that this type of care is rarely available in the United States. In major teaching institutions, the isolation of patients with rheumatic diseases for extended periods is not always compatible with the needs of medical education programs. ‘A patient whose disease will be with him the remainder of his life, may have difficulty in finding the emotional support in the traditional teaching institution. While we all recognize the need for education, we must also recognize that the patient's needs cannot be compromised. Understandably, the patient needs services of skilled physicians and surgeons, but writing prescriptions or replacing a joint will not permit the factory worker to continue at the production line; the mother to care for her children; or the little leaguer to be like other little leaguers. The patient will not be the only one affected. Family roles will have to be changed and priorities re-established. This 1s the management of chronic disease and this is the challenge that the Commission must face. While research and education must have continued support, more attention must now be paid to delivery of health care. This means not just diagnosis and treatment, but rehakilitation and readjustment. More rheumatologists are needed, particularly in Wisconsin, which is a physician poor State, but many people will suffer if we wait until enough rheumatologists are trained tc care for the arthritics of the State. 3-44 Milwaukee, Wisconsin November 10, 1975 I would like to propose that the National Arthritis Act provide funds for the develorment of rheumatic disease units throughout the State that would serve as regional referral centers. They would have the capabilites to handle all aspects of care, in addition to their own areas of experitse, i.e., rehabilitation, juvenile rheumatoid arthritis, rural outreach programs and training of allied health personnel, etc. These units would be integrated with each other and with the medical schools whose standardization of care, data collection, cooperative studies and clinical evaluation. The long-term benefits Loth for the patient and society for specialized care must alsc be emphasized to the insurance carriers. During the past year there is evidence that they are reluctant to pay for "change of milieu" treatment. This is particularly true of Government programs. The purpose of rheumatic disease units could ke defeated unless this trend is checked. At present, the major thrust of rheumatology is aimed at inflammatory disease, yet the biggest single cause of disability in the United States is osteoarthritis. It is estimated that 20 percent of all patients coming to physicans!'! offices are there because of musculoskeletal complaints; and the majority of these are from non-inflammatory conditions. If for no other reasons than the cost to society, more research should be directed toward these areas. Mr, Chairman, Members of the Commission, thank you for the opportunity to express my thoughts. DONALDSON: Thank you. Are there questions? Yes, Bill. BATCHELOR: (Inaudible.) GOLDMAN: Yes; right now the Regional Medical Program is working with the Arthritis Foundation, the rheumatologists, and other personnel of the State to develcp a comprehensive health care program for the State. BATCHELOR: I just wondered what extension solved the effort through this program as something on which you (inaudible). GOLDMAN: If it was not for this program, these people would not be meeting together; that is the number one thing. The fact that is -- you are talking abcut the Arthritis Act? BATCHELOR: I hold reference here to the RMP, I am not sure whether you can identify from the outreach programs that are needed. GOLDMAN: Yes; I have. I have keen identified with basically coordinating many of the different things which we have, and all the RMP projects have been- aimed at bringing more coordination between the institutions and also expanding care. So this is the type of thing which -- I think -- which we should direct our attentions at. I think this should not be independent, however, of the medical education and research program. What I would suggest is that we attempt to integrate the two. You know, what we have now is two parallel systems; the university systems 3-45 Milwaukee, Wisconsin November 10, 1975 and then the health care delivery systems. And certainly I think both could be strengthened. SHIELDS: Where do you see the initiative for establishing such regional distributions coming from? GOLDMAN: Well, this is what I meant when we talked about the National Arthritis Act. Everybody talks that it is a good idea to do, but until somebody heard there was money availakle, the people from the different institutions didn't really get together. I might also add that the two institutions where I am based both have rheumatic disease units. We talked for a long time that this was the way to treat people, but until RMP funds were available to say here is a project...But the project cannot be done unless patients are on one ward. We have a rheumatic disease unit; those units are now established. The projects are winding down, but nobody would dare disassemble the units. So this is the initiative; something that gces on after the project ends. SHIELDS: Along the same lines, how many rheumatic disease units of this type are there in Wisconsin, in this network? What are some of the more deprived areas even now in Wisconsin; and how do you start a new unit? GOLDMAN: Okay, first we have -- I am going to let that go a little bit to John Hutchins who is from Wisconsin WRMP, and I may even have a chart to show you where they are geographically around the State. We have them -- I will let him comment on that. The impetus must come from the people who are capable of delivering the care. In other words, people talk about it, but unless you have the people capakle of delivering the care there, you can't get it gcing. Once you have the people who can show, in a given area, that this is the way to treat people, the patient demand is fantastic. I mean, every rheumatologist in this State has people waiting in line. You know, we are not like some other areas of the country out looking for business. We are trying to figure out how we can better handle it. So, showing that there is a way of treating these rteople immediately creates the need. Particularly though, I would say the northeast region of this State is particularly lacking. I would also add that I would hope that the plan, the Arthritis Act, would recognize the vast differences among the states and what is necessary here in Wisconsin is not what is necessary in New England or someplace else. SHIELDS: Iet me ask just one more quick question. Your practicing rheumatologist in the health manpower survey showed that rheumatologists in the country were poorly utilized, and their skills really weren't being taken advantage of through difficulties and referral and what not. Is this true in your own case, and what are the problems in you performing your best services? GOLDMAN: TI don't think that is really true in my particular case, but we have put an awful lot of administration effort in getting a system up in which we can expand our potential by the use of allied health personnel both within the hospital and without the hospital. Wisconsin, being a physician poor State, there is no rroklem with physicians wanting to refer 3-46 Milwaukee, Wisconsin November 10, 1975 to rheumatologists. Occasionally there is. Whereas, when you have too many physicians they might--well, in here there is no problem. DONALDSON: Thank you very much. I wculd ask Drs. Pachman and McDuffie to join Dr. Gore at the table, if you would please. While they are coming up, a number of the members of the Commission thought that I should make a brief statement concerning the dcllars. The National Arthritis Act does have in rpart of its provisions suggested dollar amounts for implementation of the eventual programs to be developed and recommended back to Congress. However, in fact this does not (inauditle). TESTIMONY OF DONALD R. GORE, M.D. ORTHOPEDIC SURGEON GORE: I am an orthopedic surgeon who has been in the private practice of medicine for seven! years. I practice in Sheboygan, Wisconsin, which is a community of just under 50,000 people and with a drawing area of approximately 100,000. Although the majority of my professional time is spent in Sheboygan, I contribute one day a week teaching orthopedic surgery to residents in training at the Medical College of Wisconsin. In addition, I have been actively involved in research pertaining to the evaluation of total joint replacement. This has been conducted at the Kinesiology Laboratory at Wood Veterans Administration Hospital, Wood, Wisconsin. From these vantage points it appears to me that there are four areas of education that need immediate remedial measures. These are: (1) Physician Education (2) Paramedical Education (3) Patient Education (4) Public Education I would like to consider each of these separately. Primary care physicians in smaller and moderate sized communities regularly see large numbers of patients with complaints of an arthritic nature. Most of these patients require only a skillful examiniation, followed by a thorough explanation of their condition and reassurance that their problems are not serious. A few require extensive and expensive evaluation and life-long treatment. Appropriate patient selection depends on a thorough understanding of the arthritic diseases. This knowledge was not available when older physicians were trained, but, unfortunately, though available now, is usually not taught in medical schools or the usual postgraduate training programs. Paramedical personnel are invaluakle in the everyday management of disabilities caused by arthritis. Sirple instructions on preventing deformities and techniques to increase physical productivity help an 3-47 Milwaukee, Wisconsin November 10, 1975 arthritic patient retain his or her place in productive society. Many times, though, these paramedical personnel spend their time administering useless and expensive modalities which contribute nothing to overall well- being of the patient. Patients! understanding of their rroblems is probably the most important single factor in maintaining productivity and avoiding unnecessary and sometimes dangerous treatment. Some patients believe the term arthritis is synonymous with life-long total disability. These people spend their lives looking for their pot of gold in social agencies. Learning to live with our problems is basic to human survival, but some of us, and particularly those disabled ky arthritis need more outside assistance than others. The well educated, white collar worker or professional with a little resourcefulness can ususally adapt to his cr her disabilities. The factory worker of laborer is much more dependent on his employer. Unfortunately, unrealistic workmen's compensation laws have made hiring of disabled persons simply tcc expensive. The solution to the above problems are education of physician, paramedical personnel, patients, and the public as a whole. This type of education must emanate from medical centers that provide initial education to medical personnel, but also who effectively disseminate information to those in smaller communities. These goals can only be accomplished when funds are made available to be used primarily for teaching and not tied to the strings of an elaborate research program. Thank you. DONALDSON: Thank you. Are there questions from the Commission members? I think this is a message that we have heard repeatedly as we have gone around the country, and it is certainly one that we have no problem dealing with as a Commission. You can ke assured that it will be a part of cur recommendations. GORE: Thank you very much. DONALDSON: Dr. Pachman. TESTIMONY OF LAUREN M. PACHMAN, M.D. HEAD OF IMMUNOLOGY CHILDREN'S MEMORIAL HOSPITAL, CHICAGO PACHMAN: I am a Board Certified Pediatric Immunologist. I am the head of the Division of Immunology at Children's Memorial Hospital in Chicago. It is the purpose of this testimony to document some of the existing medical resources in Illinois and in the Chicago region, and to discuss the problems particular to the pediatric population. There are seven major medical programs in the Chicago area and representatives frcm each of these fprograms are on the Medical and 3-48 Milwaukee, Wisconsin November 10, 1975 Scientific Committee of the Illinois Chapter of the Arthritis Foundation. (Appendix I lists the members of this Committee for the year 1974-75 and Appendix IT outlines the agenda for that year.) This development and use of regional resources in a coordinated fashion is in accord with the National Arthritis Act of 1974. Financial aid is available from the Division of Services for Crippled Children for any child with a connective tissue disease who financially qualifies. The DSCC operates a network of clinics (Appendix III and IV) in various sections of Illinois which act as intake stations which then send children on to the appropriate speciality clinic. In the Chicago area alone, an estimated 20-30,000 adults have rheumatoid arthritis. There are 3,500,000 children under the age of 16 in Illincis and 12,000 of these may have JRA. Who provides care to this active patient population? In Illinois, rheumatologists number only 20, with all but three based in the Chicago area; and of the 20, there are only three who are Board Certified in Pediatrics and limit their practice to Rheumatology-Immunology. If all the 12,000 children in Illinois were identified, 15 to 20 pediatrically trained individuals working full time would be needed to deliver the current level of medical practice. To illustrate further with data derived from Children's Memorial Hospital in the year 1974, 224 patients made a total of 780 visits with myself as the senior responsible physician. Each visit required a minimum of 20 to 30 minutes in which the child was evaluated by the various services (medical, orthepedic, and physical therapy). Referrals of four to eight new cases per week are routine, either on an inpatient or outpatient basis. In 1974, 25 children with JRA were hospitalized, 11 with dermatomyositis, 26 with systemic lupus, and 15 with acute rheumatic fever, all at Children's Memorial. It is difficult to assess the prevalence of rheumatoid disease in childhood because the specific disease syndromes are not well characterized either clinically or medically. There is increaseing evidence that rheumatoid arthritis has a different clinical course in children than in adults; research about the disease process in children has been slow to develop and data lags far behind, even that which is known for adults. Metakolically, children are not "little adults." Moreover, information is scarce concerning the effects of drugs, widely used in adults, on children. Patty is 12 years old and I asked her to come to illustrate some of the simple questions for which we have yet to find answers. What is the basis of her disease activity? She and many other females of childbearing age are given gold shots -- how long should they be given, how does it affect the potential fetus, what other drugs can be used? Until basic knowledge about the disease process is obtained, the therapeutic approach must be, at best, stop-gap. The final conclusions are evident. There is an existing network for communication and delivery of care in the State of Illinois; some financial coverage is available for children, but it is often inadequate. More rhysicians and medical support service should be trained in the area of both pediatric and adult rheumatology to deliver the existing body of knowledge. Our knowledge of pediatric connective tissue diseases must be effectively extended to identify and treat children and rrevent these children from becoming irrevocably disabled. 3-49 Milwaukee, Wisconsin November 10, 1975 DONALDSON: Thank you very much. I don't think you have any trouble impressing us about the care of children, particularly when you bring one like that along. Are there questions? If not I think you have made your case for the child very adequately. We thank you for it. Now, Dr. McDuffie. TESTIMCNY OF FREDERIC C. McCUFFIE, M.D. RHEUMATOLOGY RESEARCH LABORATORY MAYO CLINIC MCDUFFIE: I am testifying before the Commission as a representative of the Minnesota Chapter of the Arthritis Foundation. My background is that I am a physician who received training in clinical rheumatology and research in arthritis in Boston and New York in the 1950's and then spent 8 years as director of Rheumatology at the University of Mississippi Medical School. During this period I ran an arthritis clinic and an active private practice of rheumatclogy. For the past 10 years I have been at the Mayo Foundation engaged almost full time in laboratory research in arthritis and immunology, but I have maintained active contact with clinical activities in arthritis at that institution. At Mississipri I played a role in the formation of a chapter of the Arthritis Foundation and served for a while as its president. In Minnesota, I have also been involved in the affairs of the State Chapter and am currently chairman of its Medical and Scientific Committee. I wish to address my testimony to two major issues. The first concerns support of research and the second one expert care of patients with arthritis. I am sure the Commission has heaxd repeatedly about our lack of knowledge concerning the cause of most forms of arthritis and the current unsatisfactory nature of much of our treatment. We have an overwhelming need to gain Letter understanding about diseases of the joints, particularly rheumatoid arthritis and osteoarthritis, the major long-term cripplers. I think that in the long run money spent for research will provide more benefit for patients with arthritis than almost any other form of expenditure. Naturally, I do have some personal interest in this question because of my own involvement in arthritis research, but I believe my views which are based on personal experience may help the Commission in estaklishing its priorities and goals. I want to urge the Commission to recommend support of research in arthritis on a broad scale. It is impossible to know at the present time exactly what scientific fields or exactly what laboratory's results are going to provide findings which will have an important impact on the solution to the arthritis problems. Overemphasis on apparent relevance to arthritis in the support of research will constitute a grave mistake. A major advance in our understanding of arthritis in the last two or three years has been the recognition of a close association between a form of arthritis of the spine (ankylosing spondylitis) and the presence of certain genetic markers on lymphocytes and other cells. This work, carried out both in England and in California, has identified a hereditary link between the development of this form of arthritis and a so-called antigen on cells 3-50 Milwaukee, Wisconsin November 10, 1975 which is responsible, among other things, for rejecticn of kidney transplants. I suspect that very little of the financial support for basic research on these antigens was provided ky grants recommended by the Arthritie Study Sections of the National Institutes of Arthritis, Metabolism and Digestive Diseases. Much of the support for this research came from those interested in kidney transplantation and in blood transfusion because of the obvious connection ketween these antigens and these two fields. Nonetheless, the benefit for arthritis research has been enormous. If a single cause for rheumatcid arthritis is ever found it will be rossible, looking back, to see that this discovery has been based on a gradual accumulation of basic knowledge from many different fields, and unless every link in that chain is present, the final solution cannot be attained. I kelieve that the Commission should recommend that the National Institute of Arthritis, Metabolism and Digestive Diseases identify certain areas of basic science research that are likely to have a very strong impact on arthritis and support Lkasic research projects in these areas on the basis of quality, regardless of its apparent relevance to arthritis at the present moment. Such possible areas would be: (1) Mechanisms of inflammation, including chemistry and physiclogy of so-called mediators -- proteins and smaller molecules that play important functions in the attraction of white cells and platelets to areas of inflammation, phagocytosis of particles and release of enzymes that may cause damage to tissues. (2) Virology with particular emphasis on the study of viruses which do not express themselves directly, but incorporate themselves into the genetic makeup of cells, so as to alter their metabolism and the production of cell markers. (3) Molecular genetics, with particular emphasis on the coding of cell surface markers such as the HLA and MLC antigens. (4) Control of antibody synthesis and the interrelationship of different classes of lymphocytes involved in immunity. (5) Mechanisms of tissue damage by immune complexes and the complement system of proteins. (6) Cell membrane structure. All of these important fields and others that may be suggested represent majoc interests of other research institutes at NIH. I believe that those responsible for administration of funds for arthritis research should attempt to identify outstanding research proposals in these fields and make sure they are supported. In particular, an effort should be made to identify and support research proposals which tend to "fall between the cracks," in other words fail to receive support not on the basis of excellence, but because they do not fit clearly into any single well- defined clinical or scientific area. Though I believe major support 3-51 Milwaukee, Wisconsin November 10, 1975 should go to tasic science areas likely to provide the foundation for productive arthritis research, I also kelieve that some funds should be spent on more clinically related problems, in particular objective assessment of current therapeutic measures. In particular, I would single out modalities of rhysical therapy which are very widely used in the treatment of various forms of arthritis, but for which we really have little good objective information as to what procedures make a difference to the patient and what procedures are essentially worthless. If we are going to accelerate our program for the care of arthritics it is obviously crucial to spend our funds on forms of therapy that are really gcing to be worthwhile fcr patients. The second point I would like to comment on to the Commission concerns enhancement of professional skill in the care of patients with arthritis. For many years those of wus in academic rheumatology have constantly emphasized the need to train mcre board-certified or board-eligible rheumatologists. However, it is now very clear that because of the magnitude of the arthritis problem, it is never going to be possible to train enough experts to take care of all the patients with rheumatic diseases. Furthermore, the current political and social climate of the country is such that major emphasis is now being placed on the production of general physicians as opposed to specialists. I think all of us in the arthritis field recognize that most physicians do not understand the care of arthritis very well and do not really have a keen interest in taking care of people with this kind of chronic disease. I support the development of centers of excellence in arthritis, but I do not believe that these can ever be responsible for the primary care of the vast majority of arthritics in the United States. These centers should serve as models, but that in order to make these models effective, we are going to’ have to develop a new kind of practitioner who will assume the major responsibility for the care of patients with arthritis. Such physicians will be general practitioners, general internists, and, to a lesser extent, pediatricians, physiatrists and orthopedists. They should be identified by a special interest in arthritis which may, however, not be their major field. Arrangements should be made for such physicians to receive intensive training for short periods of time in an arthritis center in their geographic region, perhaps six to eight weeks at repeated intervals every two to three years should be sufficient. Arrangements, of course, must be made for coverage of the medical practices of these individuals while they take such short-term training as well as for some financial compensation so that they will not suffer serious loss of income during the training period. This training should consist not only of formal teaching Ly lectures, films, and demonstrations, but also considerable cprortunity to take care of arthritic patients in the hospital and the office under the close supervision of experts. After completing such training, these individuals should maintain close ties with the center by arrangements which can perhaps best be left to the ingenuity of the centers to develop. In their own communities, these individuals should be able to achieve the status of experts in arthritis and not only to direct the care of their own arthritic patients, but to assist and advise in the care of patients of other physicians. They also, of course, will be very useful members of voluntary and government organizations committed to patient education and other social and political aspects cf arthritis. I believe that it is very important for 3-52 Milwaukee, Wisconsin November 10, 1975 the Commission to come up with a plan to upgrade the care of patients with arthritis, a plan that is more innovative and at the same time more realistic than simply recommending training more subspecialists in rheumatology. I don't deny we need more specialists primarily to train other physicians and to act as key memkers of arthritis centers. I believe that a program of developing semi-experts will be more effective and perhaps less costly than simply training more subspecialists. There are many other important issues for the Commission to consider, but I wished to focus on these two. I Lkelieve the success of the Commission is going to depend in large part in coming up with recommendations that are new but solidly integrated into the general pattern of medical practice and research in this country. I think it is very important to avoid making scme of the mistakes that have characterized the cancer effort which, in my opinion, has become split off from the overall pattern of medical care and research. It has put far too much emphasis on drug therapy with sacrifice of emphasis on research. I appreciate the willingness of the Commission to listen to this and other testimony. You have a hard jot ahead of you in coming up with a plan that will gain the sugport of patients, physicians, scientists and others concerned with the arthritis problem, as well as the necessary backing from the Congress and the administration that will make it. a reality. DONALDSON: Thank you very much. Are there any questions? Yes, Mrs. Melich. MELICH: I was Interested in what you said about the six to eight week training periods for doctors. Are you saying that you think that the people that need training in arthritis would come to the centers that are set up by the National Arthritis Act or are you saying the existing medical schools or whatever they have could be implemented to contain classes in retraining these doctors in arthritis? MCDUFFIE: I guess I don't quite understand the question. Do you mean -- are you asking whether or not the present centers could do this kind of a job and that we need mcre centers? MELICH: I am asking you both. Do you think that we could use existing’ centers with additional funds used to implement what they have; and then also, the new centers that would be set up by the Arthritis (inaudible). MCDUFFIE: I think the answer must ke both. I am sure that when such centers, if money becomes available, that existing centers will be strengthened--that we already have. On the other hand, of course, it has been pointed out there are areas where we don't have centers where new ones will have to ke developed. But I think we have to start to build on what we have got at the moment. It has been pointed out we just don't have the trained people to staff a lot of new centers. MELICH: Do you think that is long enough time, six to eight weeks? MCDUFFIE: Well, I guess I am a little bit arkitrary about the time. I think one has to be practical about how much time an individual can be away from a practice and exactly how much expertise a person is going to 3-53 Milwaukee, Wisconsin November 10, 1975 develop. I think that currently we have emphasized that most of our postgraduate training of physicians is based on lectures and courses. An individual will come in for a day or so and listen to a lot of lectures and they go back. But TI think that such training is relatively superficial, and unless the student can come in and actually take care of patients and see specific problems in arthritis with the physicians in the center, discuss these cases, go over them in detail, learn how to take proper histories, learn how to use the laboratory tests and so forth, that he is not going to be very effective. Eight weeks, you know, we would like it to ke much longer. I just chose this as perhaps a time at which one could at least develop something, at least be able to recognize arthritis, and to at least learn to work with the people in the center. Maybe this is the important thing, so that when difficult problems come up they can work back with the center people and communicate with them. I think refresher pericds, you know, every courle of years or so would obviously be good to do. I think centers are fine, but I think the Commission has got to think, how are the benefits of these centers going to have an impact on the smaller towns. DONALDSON: Yes, Gordon. SHARP: Dr. McDuffie, I think that the coming into the centers is an excellent idea, but I think that we must ke realistic, that perhaps there will not be a very large percentage of physicians who will be able to leave their practice for that length of time; so that some kind of outreach from the centers also is necessary. What, in your estimation, are some of the more effective types of going out from the centers to reach the rhysicians and/or other rgrofessionals there in their own communities? MCDUFFIE: Well of course, lecture programs have their limitations as I have pointed out, and- I am sure you would agree with this. Certainly one area -- and one area that we have done it in, Rochester -- is of course, development of consultation programs where individuals will go from the centér to the smaller town, let us say once a month -- to the hospital. At that time patients with rheumatic disease or arthritis problems would be brought in and the specialists -- the rheumatologists will see the patient, examine the patient, talk to the physicians from the community, who will be there taking care of the patient; and they will actually be able to focus on the patient's specific problem. Then if it becomes apparent that the patient needs to ccme to the center for care, this can be arranged. If not the patient can have the benefit of that consultation and the physician in charge will learn something from that. I think that is a fairly effective program, but again, I don't think it would be as ~ effective as bringing them in. Although I certainly agree with you that the practical difficulties may be very great a lot of it, TI think, is financial. Possibly the Arthritis Commission might be able to overcome some of the financial blocks. SHARP: Well I think that this is the problem. Many of the centers who would like to go out and carry on these consultation clinics and what not are not strong enough in manpower to carry this on. So, although I agree with you that we can't generate enough rheumatologists to care for every arthritis patient in the country, it would still seem to me that there is 3-54 Milwaukee, Wisconsin November 10, 1975 a need to generate more rheumatologic professionals if we are to carry on any of these outside consultative activities. MCDUFFIE: I don't deny that at all. I simply wanted to emphasize a different aspect. I thought that other point had been well made by the other witnesses. I don't disagree with them at all. SHIELDS: One comment, I think that in reference to a lot of the treatment, one of the concerns as a physical therapist that I have in treating patients is that it is so easy to addict people to a physical therapy department because often times what you do helps a person and they feel better, but in reality I have made that person a more dependent person on my ultra-sound machine, my Hubbard tank, my diathermia, etc. I recognize the problem and the need to train allied health people how to take care of chronic disease problems versus the types of problems they have been trained to do. You alluded to the fact that more research is needed in the area of rehabilitation. Would you care to comment as to why it is not being done now; is it the need of money; why aren't we doing that kind of research? MCDUFFIE: The only thing I can think of is that the reason may be that the kind of evaluation we need requires the close cooperation of the rheumatologist, let us say, and the physical therapist and the person in physical medicine. In other words, this kind of research needs to be carried out Ly that particular team. Research in general tends to be initiated by an individual working for himself, so that, I think, this is perhaps one aspect. For many years orthopedic surgeons, of course, tended to be rather lax in their evaluation of the procedures that they were carrying out. In the last few years, I think we have seen a marked change that orthopedic surgeons have recongized that the same kind of hard criteria controls and so forth in evaluating the results of surgery need to be used as we use in the use of drugs. I think it is just a question of time until this gets into physical medicine, tut you know, such things as casting, splinting...Does splinting of the hand or wrist, really prevent deformity down the line? TI don't think we know. If you ask a rheumatologist and people in physical medicine you will find a lot of disagreement, but you won't hear many of them quoting figures that really support their contentions on one side or another. They will simply quote their own personal biased rrofessional experience. And of course the psychology, and I think this has been emphasized by members of the Commission, the psychological aspects of therapy are very important. I don't deny that. I think they are very important, but I think we must recognize and identify what is psychological, on what basis it is psychological, and on what basis it effects; the disease and let's disect out those elements so that we really know what we are doing. We just ~ don't know what we are doing right now, I think. DONALDSON: Thank you very much. I am afraid we must move on. I would ask Ray Hulce, John Hutchins and Werner Schafer to come to the table. Before you leave Janet, I want to thank her for particularly being here. I only hope that in a very short period of time we have better answers for people like her. Mr. Hulce. 3-55 Milwaukee, Wisconsin November 10, 1975 TESTIMONY OF RAY HUICE VICE PRESICENT, FORD MOTOR COMPANY ; CHAIRMAN, MICHIGAN CHAPTER, THE ARTHRITIS FOUNDATION HULCE: I am an active arthritis volunteer in the State of Michigan, as Chairman of the Michigan Chapter, Arthritis Foundation; regionally, as Midwset Regional Director and at the National level as a Director and member of the Executive Committee of the National Arthritis Foundation. I serve as a citizen advocate for the cause Arthritis. However, as an executive with the Ford Motor Company in Michigan, I wish to speak today of the impact cf arthritis and rheumatic disease on industry. The committee members already know the economic burdens of arthritis on the society are staggering. When we speak of the impact on industry, we are talking not only of the nation's number one crippler, but of a major cause for losing days at work. We are talking of = 14 million lost working days, 4.7 billicn dollars lost in wages and 995 million dollars lost in income taxes. Arthritis is particularly critical to an employer since it is likely to strike in the productive years. Not only do we experience absenteeism and lose workers to pain or rehabilitation, kut we feel the impact of what is called the "Ripple Effect" which means need to train replacement workers; need to retrain the arthritis—-afflicted worker if that is possible; must retcol or retrain, pay higher group insurance premiums; and pay more workers' compensation or unemployment insurance. For an afflicted employee to successfully cooperate with a course of treatment, he must feel some confidence about the outcome. For most, this means knowing that he can return to his present job or one with similar responsibility. While the patient may be confident about his physician's ability to treat arthritis, he doubts that the doctor is aware of what movements are necessary on the job. He is uneasy: Will he really be able to go back to work? Thus, a team approach with active employer involvement is vital. A rehabilitation specialist must be aware of the job tasks required. The employer must ke prepared to maintain the present job or prepare a new one which can be successfully handled by the arthritic. The physician must communicate a quite complicated diagnosis to everyone involved, so that the effect of arthritis and work effort on every muscle, joint and tendon can be considered in job design. There is an absolute need for an active ongoing training and education program for employers and rehabilitation personnel to be aware of the very complex effects of arthritis and be informed about the prognosis and possikle course of the arthritis in each case. The unions have an active concern for the well-being of workers. = It is only a matter time before employers will be urged to explore those tasks which aggravate a condition as prevalent as arthritis. Many employers today are already willing to do what is necessary to retain an arthritic employee, since the employee is likely to be diagnosed as arthritic after his skills and experience have become valuable to the 3-56 Milwaukee, Wisconsin November 10, 1975 firm. Both labor and management need to know what can be done and the tools for a cooperative approach must ke made available to them. We suggest promoting the use of the forthcoming comprehensive arthritis centers as definitive determination points of the existence and degree of arthritic disability and sponsor of education and training for company and union personnel. This work, made available to both public and private entities, could become the greatest guarantee of properly and appropriately spent monies for treatment and rehabilitative services -- we ask that help. I cannot add to the eloquence of those who have pleaded for more research funds tc be srent in the future. I agree that this is the major priority in dealing with arthritis. But there are a number of things which we must do now to keep arthritics in the labor force. An active preventive health care program can help employees. Patient teaching through the use of visual aids, movies, and dietary and drug counseling is of great value to employees. Industry management can act as a resource to employees, making referrals and directing employees to seek appropriate medical care. More funds must be spent to train vocational rehabilitation people in working with arthritis -- it is not as simple as working with an amputee. More rheumatologists must be trained, and more information must be given to the family physician and the industrial physician to help them find and aid persons developing arthritis, particularly in the working years. More work place design and motion study personnel must be involved, as they are at Ford, in developing work patterns suited to persons with limitations from arthritis, redesigning jobs for people who have developed arthritis, and pinpointing jobs which may aggravate or eventually produce arthritis. Lastly, more of the money given to research in the area of arthritis and screening should go to developing rehabilitation and treatment teams and programs for encouraging arthritics to maintain their place in the work force. We believe the Comprehensive Arthritis Center should be charged with this responsibility as a major ongoing objective. This team approach, beginning the moment arthritis is diagnosed, has proved itself. Studies have shown that the arthritic can be placed in a new job, once the employer is shown how to use him best. The employed arthritic typically loses no more working days to illness than other employees, once the job has been tailored to their capabilities. I have seen it work, and I know that with increased understanding and training for all parts of the team, the arthritic can maintain his economic self- confidence and the employer can retain an effective employee. Thank you. DONALDSON: Thank you, and I know that it is gratifying to the members of the Commission to know of industry's interest in our problem. Are there questions? 3-57 Milwaukee, Wisconsin November 10, 1975 BATCHELOR: Is there any information available -- can you tell us anything about the efforts (inaudible) industry, this is an area where the Commission is eager to learn and there are opportunities (inaudible). HULCE: In our industry, and I can speak generally for the automotive industry, we expend a great deal of time on tailoring the work jobs to be easy and nonfatiquing to perform. We also have persons who are specially trained to work with employees who Ltecome in some way disabled -- to develor a job that would be suitable to them. We don't extinguish arthritis as a speciality problem. If a man has a bad back, we know he has got a bad back but we don't get down into arthritis and...However, the same is true of restricted motion and movements. But as in all cases, the people that are doing this work are a marching parade. They get promoted, they go on to other things. Because you made the speech last week, this week there is a new bunch of freople marching by. So I feel that a organized, professionally prepared program of continual ongoing training is essential; to take the best features that you would find and make sure they are done throughout industry. VOICE: You alluded to the fact that some studies have been done showing the fact that arthritic patient can be placed. I think that this would be most helpful -- of any studies that you are aware of that have keen done --. If they cculd be made available. I think this is going to be needed to impress Congress. HULCE: I will make that effort to pull them together. MELICH: We are aware that there are several industries that are taking advantage of the skills of people that have had arthritis and have suddenly become to the point where they cannot do anything in the actual factory or wherever, and so they have set up rehabilitative programs where they can do work within their homes. Do you have such a thing there? HULCE: No we do not. We have a parallel kind of program, however that you might be interested in. There are private employers who we encourage to start businesses which employ the handicapped in such work as packing parts for shipment to dealers. We make an extraordinary effort to work with them, both in channeling our work to them and in being reasonable about the business terms so that they can perform this effort; and we have found that kind of a solution workable. DONALDSON: Thank you very much, Mr. Hulce. We will ask John Hutchins now if he will speak to us. 3-58 Milwaukee, Wisconsin November 10, 1975 TESTIMONY OF JOHN HUTCHINS PLANNING DIRECTOR, WISCONSIN REGIONAL MEDICAL PROGRAM AND OWEN LEVIN . PROJECT ASSOCIATE, WISCONSIN REGIONAL MEDICAL PROGRAM HUTCHINS: Like most Regional Medical Programs and Comprehensive Planning Agencies, Wisconsin RMP is concerned with transition to the new health planning and development structure mandated by P.L. 93-641. One of the major rprcblems with P.L. 93-641 from our point of view is that it inadequately provides for the development of statewide health care resources. Under the new law, health care planning and development will be on an area kasis (e.g., Wisconsin will have six areawide health systems agencies and moreover there will ke a 1 - 2 year hiatus in funding even sO). Therefore, WRMP has decided that one of its major missions during the transition is the development of statewide health care programs. The testimony given today should make it clear why arthritis should be considered a priority program. Within this context and especially with the passage of the National Arthritis Act of 1974 and the Regicnal Medical Program experience in funding Arthritis Initiative Projects, Wisconsin Regional Medical Program began considering the potential of frulling together a consortium of interests in the area of rheumatic diseases. This consortium was conceived as a nucleus of academic, clinical, and public interest that could merge Regional Medical Program goals with those of the arthritis care provider and public interests. Of particular interest to Regional Medical Program are the delivery of appropriate care in a statewide program -- especially in non-urban Wisconsin. Also of concern are the innovative and cost-effective use of highly trained providers, and the most effective use of scarce resources. It is the aim of Wisconsin Regional Medical Program, through this consortium, to assess unmet needs, to pull together current resources in a systemically designed plan for cooperation, and to pursue efforts to bring in new resources and ketter use of that which presently exists. The consortium will be carrying on a number of functions under Wisconsin Regional Medical Program auspices: statewide survey, outreach consultation team visits, continuing education conferences, and learning experiences for students. The consortium is building a program that will be exemplary of what a diverse group of interests can do in this vital area. As such, this consortium will prepare itself to become grantee to future outside funding and coordinator for arthritis programs that are cnly now on the drawing koard. The exact nature of the consortium is, at this time, indeterminate. Membership will consist of the Wisccnsin Chapter of the Arthritis Foundation, the State's two medical schools through their rheumatology sections, and the current rheumatic disease resources in State agencies, hospitals and the «clinics around the State. The consortium will be 3-59 Milwaukee, Wisconsin November 10, 1975 established as an entity, though it is anticipated that existing facilities will be utilized without exception. The advisory subcommittee to the Medical and Scientific Committee of the Wisconsin Arthritis Foundation has been considering plans for structuring this Comprehensive Arthritis Center. Wisconsin Regional Medical program Arthritis Initiative Projects and staff activities have been geared to the development of an integrated program that will interface with and be superceded by Federal or outside funding at the end of this fiscal year. It is our intent to involve the whole State, to increase public awareness, to make maximum use of scarce resources, tc complement, supplement or increase these scarce resources, and to maintain an active role in the area of rheumatic diseases for Wisconsin. Attached please find a functional schematic diagram of the Comprehensive Arthriits Center as described in the National Arthritis Act. In parentheses beneath each function, you will ncte present or planned WRMP Arthritis Initiative Projects. These will be further inegrated into non-WRMP funded efforts and systemically analyzed for interfaces and necessary infrastructure to assure that all components hang together and that output is maximized while cost is minimized. Interest and cooperation is high. The Commission is urged to acknowledge in the National Arthritis Plan what states with limited resources and large distances can do to pull together their resources into consortia to deliver more and better rheumatic disease care. Provision should be made to enable and facilitate the efforts of states without large, already established centers to synergistically combine scarce resources. Thank you. DONALDSON: We have time for just a couple brief questions. BATCHELOR: One feature of the RMP programs that can be of great help to the work of the Commission in its evaluation effort--is the Wisconsin program engaged in any family effort, the results of which might te available to us? LEVIN: Well, I think like most RMPs we evaluate all our programs. Again, it is the extent of the resources that are remaining in the time. We have about half the staff we had two years ago, and within that context we will be happy to cooperate. -DONALDSON: If there are no other question, thank you very much. Werner Schaefer. And I would ask Sam Geller and Wilfred de St. Aubin to join him at the tatle please. Please go right ahead, sir. 3-60 Milwaukee, Wisconsin November 10, 1975 TESTIMONY OF WERNER J. SCHAEFER PRESIDENT, MILWAUKEE CCUNTY LABOR COUNCIL AFL-CIO SCHAEFER: My name is Werner J. Schaefer, I am president of the Milwaukee County Labor Council, AF of L - CIO, and I am immediate past Chairman of the Board of United Community Services of Greater Milwaukee. While I have a personal concern for improved treatment of arthritis, my overriding motivation is for the thousands of working people in Wisconsin who must deal with the pain and crippling of arthritis on a daily basis. The Commission knows the statistics of lost dollars and human resources caused by arthritis. We only wish to note that Wisconsin's share of that loss is $75 million each year...most of which comes out of the pockets of working people. I firmly believe that we must collectively insist that the needs of people with arthritis get a high priority. If we put our various expertise to work on solutions, the prospects for arthritis care and the ultimate cure will be substantially improved. We in organized labor can help. For instance, we think our structure of inplant community service union counselors can be used to help get authoriative information to working freople. We think that with arprorriate orientation, that our union counselors can be an effective resource to people with arthritis at their place of work... especially in working situations that do not have full-time medical service. We want the Commission to know that organized labor in Wisconsin is concerned. We stand ready to be part of the development of a coordinated network of service resources to help people with arthritis and their families in any way possible. Thank you. DONALDSON: Are there questions? What is the present function of these counselors; would they be in a position to begin to supply information of health, essentially health tyres like this? SCHAEFER: To the Commission? VOICE: You were talking about the union counselors =-- resources persons. SCHAEFER: Yes; I believe that if they were properly oriented that they could convey informaticn on arthritis treatment and other solutions to arthritic problems. VOICE: Ms. Seelhorst here is acting in such capacity in Athens, Ohio and has telerhone calls from Kentucky, is it? In other words, you don't 3-61 Milwaukee, Wisconsin November 10, 1975 need a trained medical person to provide such simple sources of information. SCHAEFER: We agree. Cur union counselors have been very effective in other fields, particularly in the area of social ccncern. I would practically guarantee that they would be equally as effective if they had the proper orientation. DONALDSON: Well, thank you. Certainly with the support of labor and industry, when we go back to Congress we should have the right people on our side to help us gain the appropriations that we so desperately need. Thank you very much for coming. Now, Sam Geller. TESTIMONY OF SAM GELLER SFOUSE OF ARTHRITIS PATIENT NORTH LCAKCTA GELLER: The cause for and of arthritis is very close to me. I am herein making a plea for our area that our people not be overlooked. In October, 1974 through the North Dakota Regional Medical Program the State achieved a diagnostic evaluation ccmmunity referral Arthritis Center at Fargo, North Dakota which is located on the eastern edge on the Red River. Fargo was chosen as the site for this program because it is the only city in our State which had specialists in all of the aspects of rheumatological disease. North Dakota is a state of 70,665 square miles and approximately 618,000 people. We do not have the facilities or expertise to house a National Resource Center although we feel this is the key in finding the cause and cure for arthritis. The best approach in the Dakotas appears to be the continuation and extending of the model center now established to encompass the entire State through outreach in the areas of treatment and training. I know that the staff at the Center is willing to share their data, protocol, and procedures, and are willing to go out and assist other areas in the State in establishing a similar facility to serve the arthritic in central and western areas of our State. Outside of the Arthritis Center in Fargo, the nearest facility of experitse in rheumatoid disease is the University of Minnesota and Mayo Clinic. These are located approximately 350 miles from the eastern edge of the Dakotas. To these there is minimal access due to few commercial means of transportation and the weather element. Overcrowded patient conditions within these existing medical facilities make for long periods of waiting to be seen. To the west, expertise in rheumatoid diseases would be Spokane, Washington, some 1200 miles distant. The Dakotas are populated primarily by people engaged in farming activities. If any one group of people are more frequently struck by arthritis than another, it appears that farmers rank high. This in itself states a primary need. Secondly, their occupation literally prohibits 3-62 Milwaukee, Wisconsin November 10, 1975 absences from their vocations (farming, ranching) even if they had the means to get to the outside existing facilities. I cannot overly stress the geographic isolation that predominates the Dakotas. Many areas do not even have a general practitioner. The patient, the general practitioner or referring physician can seek solace in having the Arthritis Center of Fargo. However, the Regional Medical Program is to be phased out, so we are highly concerned that this Model Clinic, so absclutely a necessity, might be again lost to our people. In summation: I have lived with my wife, Toba, a victim of severe rheumatoid arthriits for 31 years. I kncw the hell cf no help, no relief and little understanding by others that these people must live with. My PLEA is that in program developing you not overlook rural Dakota. As I told you at the beginning of my presentation, my name is Sam Geller. I am 64 years of age, self emplcyed, and have a high school education. With the exception of 38 months in the army, I have always lived in Fargo, North Dakota. On August 20, 1944, while on furlough, I married Toba Marcovitz who is now 57 years of age. We have been married 31 years, and we are the parents of three sons who at the present time also live in Fargo, North Dakota. For the past 29 years my wife has suffered from arthritis, which has progressively become worse. During those 29 years she has had surgery on all of her toes, surgery on all of her fingers and both wrists. The hands will require further surgery. Synovectomies on both knees were performed, followed by total replacement of both the knee joints. Within the past two months the right hip joint has been replaced; within the foreseeable future she faces further surgery on her right elbow and right shoulder. Only becuase the surgical processes have not been perfected is the reason why this surgery has nct already been performed. She has taken Wetherky vaccine, gold injections for 25 years, ACTH, cortisone, nandearil, Indocin, motrin, anti-malaria drugs, aristocort, Hydrocortone, Prednizone, generous doses of aspirin and acupuncture for relief of pain. She has been advised and examined by Drs. McNider, Wetherby, Minneargolis, Phillip Hench, Paul Andrenie, O'Duffy, Combs, Conn, Cooper, Paul Lipscombe, Carpenter, and Richard Bryan all of Mayo Clinic, Rochester, Minn. ; Dr. Lester Wold of the Fargo Clinic; Dr. Ulmer and John L. Magness of Dakota Clinic, Fargo, N. Dak.; Dr. Robert Persillen of San Antonio, Texas. ’ Need I tell you of the pain wracked days and nights? Need I tell you of the sleepless nights and the mental anxiety? Need I tell you of the miles travelled seeking relief, help, sclutions, or of the thousands of dollars expended for treatments, therapy, and surgery in an effort to relieve the pain? Yet we live with hope that tomorrow a cure or a remedy for thsi crippling disease will be found. 3-63 Milwaukee, Wisconsin November 10, 1975 But what of the hundreds of thousands who are also affected with the disease, who cannot afford to travel to Mayo Clinic, who cannot afford to have joints replaced, who are unable to seek the best medical advice for one reason or ancther? What hope, what relief is there in store for them? Gentlemen, I plead for your help! A nation which has the knowhow and the where with all to place men in outer space and a nation which can construct a seven billion dollar antimissile base, in my home state, which is already reported to te obsolete, can surely fund and support a program to help those so sorely afflicted with the crippling disease kncwn as arthritis. Thank you. TESTIMCNY OF WILFRED de St. AUBIN PILOT GERIATRIC ARTHRITIS PROJECT UNIVERSITY OF MICHIGAN MEDICAL CENTER ANN ARBOR ST. AUBIN: We would realize the fear that they have of disability and activity limitation from arthritis. Although osteoarthritis does not necessarily threaten the quantity, it sure does threaten the quality of living. We know today that by appropriate treatment the application of treatment that we know now, much can be done to relieve the pain and the distress and maintain functional ability. Again, I would 1like to echo the plea of that lady that did that so effectively; she rleaded for action now. There are millions that need some help now. Of course, we welcome the opportunity to know -- we know that there is an Arthritis Act that our National Government is concerned-- and to have an opportunity to put some input before the Commission, to ask their consideration; and we recognize the need for intensive research. No question about it. But we hope that the research will not be done at the expense of neglect of the problem of the millions of older people. You know the act specifically refers to children, but no mention is made of older people, the principal victims, or of the exorbitant financial crippling impact of arthritis; perhaps in this respect the act is deficient. There is a vast untapped potential in the community. I can speak for our own community and area, and I think the others are the same. We want to help. We know it is a serious problem; we have found that out. Thanks for the Project, the Pilot Project that has been operating in our area. We have been able tc arrange and support the help to a lot of people. Now social agencies, church groups, United Way agencies, people with whom we work, counseling; are waiting for leadership and quidance. How can we help. And I believe that that quidance and that leadership perhaps in the form of demonstration projects could and should come from the Federal Government. It does not exist in general, except where something can be done. We have asked our Mr. Alan Jette to describe an approach which we think will help fill the gap that there now exists in the health care delivery service. 3-64 Milwaukee, Wisconsin November 10, 1975 I would like to say just one word: I honestly believe on the basis of the people that I have worked with, places I have been, the groups of older people that I have met, senior citizens groups and different parts of the country, that I think that they would agree with the things that I have said to you this morning. Thanks for the opportunity to be here. DONALDSON: Thank you, sir. We would ask Alan Jette if he would come to the table at this time because he will be our next witness. We were asking Alan Jette to come to the table. While he is coming, I would just like to take the moment to recognize the presence of the medical director of the project, Dr. Ivan Duff. He is here in the audience and, it is unusual for him to be this quiet; but your presence is felt. Would you rlease go ahead. TESTIMCNY OF ALAN M. JETTE PILOT GERATRIC ARTHRIITS PRCJECT, UNIVERSITY OF MICHIGAN MEDICAL CENTER, ANN ARBOR JETTE: I am Alan Jette, a physical therapist at the University of Michigan and a program associate with the Pilot Geriatric Arthritis Program which is one of the 29 Regional Medical supported pilot programs. Mr. de St. Aubin has described the pressing need for arthritis care in the older population. We as professionals feel a major barrier is an appalling lack of financial support for a comprehensive range of arthritis treatment resources. Even in areas where physician and allied health professional services are available, restrictive third party coverage renders them inaccessible to many individuals, especially the elderly. In addition, there exists major client barriers to seeking care. They include: transportation difficulties, pain and functional impairment, the myth that nothing can be done, and reluctance to come to medical centers. In attempting to overcome these barriers and to fill in the gaps in existing arthritis care, our program has developed four methods. These methods specifically relate to the rrriorities five, six, eight, and thirteen mentioned in section III of the Arthritis Act. We recommend the development of community outreach in conjunction with existing community agencies. Outreach, first of all, increases the visibility of arthritis resources. Secondly, it increases public awareness of arthritis needs and what can be done for them. Thirdly, outreach can reach the socially isolated, homebound individual whom is least likely to seek the care they need. Arthritis screening as used in our program permits: 1) the identification of needs, 2) the initiation of a treatment plan, and 3) referral to the least intensive, most appropriate level of care. To meet the challenge of scarce physician resources which was repeated over and over this morning, we are utilizing nurse clinicians and volunteers in these arthritis screening activities. There is a wealth of untapped resources in the allied health professions. Community based consultation or satellite clinics have been one further method of reducing 3-65 Milwaukee, Wisconsin November 10, 1975 financial, geographic, and transportation barriers for «clients in our Frogram. These clinics are cosponsored by the Arthritis Foundation, and are held in community halls, churches, and schools. A full range of professional services are available, including rheumatologists, podiatrists, occupational and physical therapists, nurses, social workers, and dieticians. If necessary, referral to the medical center is possible to meet the needs of over a quarter of our patient population who demonstrate mild comoderate symptoms of arthritis. Group education seminars are conducted by the allied health professionals. The seminars provide information about arthritis and its treatment. Compliance with established treatment programs is often a major problem for clder individuals with arthritis. Long-term support groups are one method of meeting this problem. These groups strive to develop reer support and encourage the continued compliance with treatment in addition to providing general information about arthritis. Systemic evaluation is currently being conducted for all these activities of our Project. It is our recommendation that this Commission establish similar arthritis health care programs across the country, to assess both the cost and the effectiveness of providing early and comprehensive arthritis care. We further recommend these programs ke given adequate time to develop, mature, and be evaluated. The develogment and use of valid and precise measurement tools is essential to accurately assess the effect of these programs. . Evaluation should be a requirement for funding. Having completed the first year cf our program, we can speak positively to both public and community professional encouragement and support for this type of program. We believe that properly designed and implemented demonstrations will provide the necessary data to support the hypothesis that early and optimal- arthritis care can ke most effective. It is our hope that this data will then be used to facilitate long overdue changes in the health care reimbursement system. Thank you. DONALDSON: Thank you, sir. We will now entertain questions for either Mr. St. Aubin or Mr. Jette. SHIELDS: You alluded to the fact that there is a great wealth of allied health professionals out there that can assist in this area. Your comments regarding whether or not they are well enough trained at the moment to handle that -- or do we in fact have physical therapists who are ‘still putting hot racks on people and addicting them to our departments or are they trained to handle a chronic disease? JETTE: No; when you mentioned your comment previously, I could not agree more that there is a great need to get physical therapists and other allied health prcfessionals out of the medical centers, to stop giving the hot packs and making patients more derendent, and teaching them how to effectively manage their disease. 3-66 Milwaukee, Wisconsin November 10, 1975 SHIELDS: So you don't feel that they are adequately trained at the present time in their basic training program, and that it will require additional training to get them skilled at chronic disease management? JETTE: That is right. BATCHELOR: I am interested to hear you describe a program here that has been in operation for a year. Your teachers that you described have been considered by the group consultants advising the Commission on setting up community programs. I just want to register our interest. Do you have any fprogress reports on any program that is one year young? We would certainly ke glad to have them. JETTE: I have our annual report, which I can make available. VOICE: You mentioned public support has been achieved, and I wondered in terms of actual monetary support, since the RMP programs had hoped that there would be a gradual evolution into self-sustaining funding, have you seen some of this appear? JETTE: No; I was speaking specifically to public and professional support of the activity, not financial support. VOICE: Has there been any attempt, though, to evolve transition into ultimate support by the region itself? JETTE: I am not sure of the specifics, and I am not qualified to address that; kut Dr. Duff, I am sure, would. VOICE: I just had one comment that I would like to make. I guess it is probably directed more to Sam Geller, kecause he brought it ug. iT recognize that since being on this Ccmmission, I have began to look at patients differently. I used to think that when I would hear the term of 20 million people out there who were suffering that needed help, and now I find myself saying there are 20 million potential voters out there. I would hope that you would all recognize how important that really is. If we could somehow mobilize together and not only do we have 20 million voters, but we have a husband, a wife and family members. Maybe that is 50 or 60 million people who are potentially akle to tell Congress to do something about arthritis. Maybe we could then get money funded for arthritis care instead of -- like putting a man on the moon -- we could also have a much greater impact on arthritis, but I think you make the difference. ST. AUBIN: I think they are there, and I think they can be if we help them get the infcrmaticne. VOICE: They not only are voters, but they pay taxes, too. VOICE: That is right; but being voters, that is what impresses Congress because they got there by votes. 3-67 Milwaukee, Wisconsin November 10, 1975 DONALDSON: I am afraid we must go cn now and I would ask Dr. Liang, Richard Edwards, and Claudia Standorf to come forward. Dr. Liang, we are glad you could be here with us. TESTIMONY OF GEORGE C. LIANG, M.D. RHEUMATOLOGIST, GUNLCERSON CLINIC LIANG: Mr. Chairman and Committee members: Thank you for this opportunity to testify here. My name is George C. Liang, and I am one of the two rheumatologists at the Gundersen Clinic of La Crosse, Wisconsin. The staff of Gundersen Clinic Lutheran Hospital, La Crosse is actively involved in the care of arthritis patients, education of house officers in rheumatic diseases, and plays a major role as a consultative service for the surrounding tri-state practicing physicians within an approximately 60 mile radius. I think we have a growing patient population; between 200 thousand and 300 thousand population. The clinic emphazes quality care for the patient, physician and patient education, and research. Our priorities are in that order; the Fatient care first, and then their education, and then research third. Now we have more than a hundred specialized physicians at this medical center, including a rghysiatrist, two podiatrists, and four or five orthopedic surgeons. We are adequately supported from the allied health professions; occupational therapists, physical therapists, social worker and nurse. We have a sophisticated hospital laboratory to do all the tests needed in the care of arthritis patients. We also have an excellent educational programs for interns, residents, and medical students from the tri-state area. As several speakers alluded to earlier, the modern quality care of arthritis patient requires a cooperative multidiscipline team effort. At this medical center we have the capability to render arthritis patients such service. However, the patient is hindered by limited financial resources. Most patients in our area cannot afford to pay the expenses involving various, multidisciplined professionals and the sophisticated laboratory costs, especially on an outpatient basis. The inpatient basis that we use has some kind of cover, kut particularly not on outpatient basis. So, our diagnostic, therapeutic, and rehabilitative capability for the patient is therefore not fully appreciated and utilized. I will give you an example: Our occupational therapists put together a patient education program -- self help patient education programe. She tried to put together all the different disciplines to offer patients some kind of education program. But the problem we are facing is the cost of those educational programs. As we all know it seems to be that our hospitals are to get some funds to offer a patient a free service for dietary or diabetis education programs, but there are no resources available in the education program for arthritic patients. Now, the laboratory of this hospital is doing us some applied research activities related to the field of arthritis and rheumatism through a grant from the Arthritis Foundation of Wisconsin. But the fund is not adequate to support the research effort. The detection and management of various arthritic patients requires 3-68 Milwaukee, Wisconsin November 10, 1975 develorment on newly established laboratory techniques. There is a great need for additional funds to expand laboratory facilities and personnel to develop various new techniques. So just in brief, Gundersen Clinic Lutheran Hospital complex of La Crosse can easily kecome an arthritis treatment center for this tri-state area, including the western part of Wisconsin if additional funds are available. This is the best available local resource to improve and render services to persons with arthritis in this area. Thank you. DONALDSON: Thank you. Could you give us some estimate as to what the population is in the geographic area that you would serve? LIANG: I think we serve somewhere between 200 thousand and 300 thousand population. DONALDSON: And what kind of additional facilities and support would you need to become an effective arthritis center, as you described? LIANG: I think we would need resources in some coordinative effort or some kind of administrative effort to put all these resources availakle to the patient. Then we would need some specializing nurse, or somebody who would be interested in putting all this coordination together. I have been trying hard myself to do all this business together. It is difficult with being busy taking care of patients; it is difficult to put all this administrative effort together. Also, we would need resources for some clinic research, which I am interested in doing. I spend about 10 to 15 percent of my time doing the laboratory work and some applied clinical research, I have difficulty getting the appropriate funds to do this kind of research. I spend 85 to 90 percent of my time doing patient care or education of the physicians. It is difficult to split between how much time I spend doing education, because we have 33 interns, residents and medical students together, and they could ask me anytime, any question they have about rheumatic diseases. LEWIS: Doctor, how do your spell you name; and are you a rheumatologist? LIANG: I am a rheumatologist, my name is George C. L-i-a-n-g. DCNALDSON: If there are no further questions, thank you very much. LIANG: Thank you. DONALDSON: We will now proceed with Richard Edwards. 3-69 Milwaukee, Wisconsin November 10, 1975 TESTIMONY CF RICHARLC C. EDWARDS DIRECTOR OF SOCIAL SERVICES METHODIST HOSPITAL EDWARDS: I want to briefly underscore two observations about the nature and consequences of arthritis, and in so doing, suggest priorities for the stewardship of money under the National Arthritis Act. I speak both as a professional social worker and the 33 year old son of a woman crippled for my lifetime with rheumatoid arthritis. First, about the nature of the disease. Arthritis is one disease entity which must continually combat an evil greater than itself; namely, public ignorance. How many times have frustrated health professionals said to one another, "If reorple only knew..." Arthritis is not an "old person's malady", not "something you must learn to live with." Arthritis is everyone's disease. We know that. Copper bracelets don't help. We know that. Charlatans, quacks and profiteers prcliferate and capitalize on public ignorance. We know that. Too often, well intended kut misinformed general practitioners give poor counsel and care to persons afflicted with the various types of arthritis. We know that. The 1list goes on =--- Misinformation producing misunderstanding resulting in mismanagement or, worse, no management. The National Arthritis Act simply must let the people know what we know. The public must be better educated in the disease of arthritis, to understand the care and treatment of persons afflicted, to know where to go for good care, to know when they are receiving good management of their disease, to gage their expectations of the health care delivery system and their expectations of perscns with arthritis. To date, we are remiss for our failure to inform. We must fund a campaign sufficient to raise the consciousness of the American people relative to the disease of arthritis; challenge the creative genius of media experts to reach the people with information that separates fact from fiction; and, go beyond the traditional 30 second celebrity spot-commercial at fund raising time. I believe if we take seriously the need to educate the public and raise the level of awareness, we will have a lesser difficulty creating 3-70 Milwaukee, Wisconsin November 10, 1975 funds for basic research, the training of rheumatologists and allied health professionals and, ultimately, ke of better service to lives of persons affected by the disease. Secondly, an okservation about the human consequences of arthritis. People are made of feelings, social roles, relationships and resources in addition to bones, tissues and organs. 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 crirpled 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. : The patient treated for arthritis is a person from a unique social context, a person with feelings, someone's child, scmeone's spouse, someone's parent, someone's employee, someone's friend. Arthritis is not a private disease. The human element is sizeable and must be assigend a high priority. The very nature of chronic disease demands a reordering of life styles, social roles, relationships, and resources to accomodate the reality of the disease. Psychosocial, sexual, and economic consequences can be profound and far-reaching, potentially as crippling as the disease. The social worker brings to the health team basic knowledge and skill keyed to the human consequences and critical to the comprehensive management of the disease and lives it effects. The social worker can provide direct services to the patient and his family, being surportive, providig information and resources as the struggle to cope with the realities of the disease. The social worker can counsel with members of the nuclear and extended. family to educate and interpret for them the nature and consequences of the disease and its impact on their lives. The psychosocial knowledge, skill, and sensitivities represented by the sccial worker must also be inccrporated into the education and training of allied health professionals to further insure service to the total human element. Another role of the social worker in service to the person with arthritis is that of advocate. The social worker can work within the community and the health care delivery system to insure the patient's right to accessible, quality care, identify the deficiencies in the system, and mcbilize resources towards system change. The role of the social worker becomes increasingly aprarent. Patients with arthritis are people made of feelings, they represent social roles and relationships. They must function in a unique social context and cope as best they can with the reality of their disease. The people around 3-71 Milwaukee, Wisconsin November 10, 1975 them need the support, reassurance, education, and assistance that is best provided by a skilled social work practitioner. 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. DONALDSON: Thank you. Are there questions? VOICE: I want to thank you for your testimony. I think it reminds us of something we tend to forget sometime; that we can pay attention to hours lost, and taxes lost, but the human cost of suffering is hard to measure, but just as real. EDWARDS: Thank you. DONALDSON: Claudia Standorf. TESTIMONY OF CLAUDIA STANLDORF MILWAUKEE CIETETIC ASSOCIATION STANDORF: I am Claudia Standorf, R.LC., Dietitian II, Milwaukee County Institutions, Milwaukee County Medical Complex. I am writing-speaking on behalf of the Milwaukee Dietetic Association. In the development of a National Arthritis Plan, we would like to see included a strong coordinated approach to nutrition research in relation to arthritis and related musculoskeletal diseases. We would also like to see, as part of the continuing care for patients with these involvements, a vigorous communication of the information derived from this coordinated effort. This communication would be inclusive of both the medical and lay communities. How often has the statement been made that all is necessary is to "Maintain Good Nutrition." This does not answer the complexity of questions such as: What effect are the chemo therapeutic agents having on the nutrients that the individual has ingested? Are Dietary modifications necessary for the primary disease? Does the physician have enough knowledge of nutrition and the nutritional needs of his patient to care for his patient without the aid of the dietitian or nutritionist? . Since nutrition is a relatively new science, how absolute can we be about folk medicine cures for arthritis and related musculoskeletal diseases unless research is conducted to obtain the data necessary with regard to nutritional needs and the effects of nutritional modifications in the treatment of these patients? We realize that there are many disciplines that have special interests in the care of patients with arthritis and musculoskeletal diseases, and 3-72 Milwaukee, Wisconsin November 10, 1975 that there will be many demands for the monies available to the National Arthritis Plan. However, we recommend strong consideration to a program that includes a nutrition care rlan that is inclusive of gathering pertinent data in research projects, of disseminating the information from such research projects to the medical and lay communities, and in counseling physicians and other members of the health care team and of the patient, his family and members of the community. Recommendations for funding this type of program are withheld until more is known about the structure of the National Arthritis Plan, but possibilities could include grants to research projects and/or specific individuals conducting such research or involved in educational and/or counseling positions. I thank you, the members of the Naticnal Commission on Arthritis and Related Musculosksletal Diseases, for giving us this opportunity to present this statement. DONALDSON: Thank you for coming. Are there questions? Yes, please. VOICE: Would it be fair to state that because of no one particular fault there, the field of nutrition has not had a lot of scientific studies devoted to it, outside of some of the necessary work done during the war when the care and feeding of soldiers was important? STANDORF: Well, there is a great deal of information now being gathered in the field of nutrition. It is a matter of what field you are interested in. From my personal knowledge, there is very little available in. the field of arthritis and musculoskeletal diseases. However, there is a great deal now being gathered for cardiovascular patients. Nephrology patients are now coming in to great attention and focus, but very little has been brought in to the arthritic patient. Controversy such as developing diet for the gouty arthritic patient -- one field says that medication, unless it is not easily received by the patient -- there is no need for a diet; another says diet plus medication. ' There is really no basis of study that I can call that informs us. : DONALDSON: If no other questions, thank you very much, I would ask Mary Ann Lorentz, Janet Lemke, and Dr. Sundstrom. Miss Lorentz. TESTIMONY OF MARY ANN LORENTZ PARENTS OF CHILDREN WITH RHEUMATIC DISEASES LORENTZ: My name is Mary Ann Lorentz, and I am speaking for our parents group, Parents of Children With Rheumatic Diseases. I have a daughter, Ann, age twelve who has juvenile rheumatoid arthritis. Also in the audience are four other parents whose daughters have juvenile rheumatoid arthritis: Mrs. Matheson, daughter Diana age eight; Mrs. Martini, daughter Michel age 14; Mrs. Bearman, daughter Karen age 15; Mrs. Olashan, daughter Lisa age 10. We number 60 some families in this area. 3-73 Milwaukee, Wisconsin November 10, 1975 Our group came together about five years ago. It grew out of a need to share our proklems and concerns with cne another. It grew out of a need to know and to attempt to understand what was happening to our children, to ourselves and to our family life. It grew out of a need to try and grasp implications of caring for a chronically ill child on a day to day basis. Such needs are not met by traditional medical care. We feel helpless as we watch our children slowly lose mobility. We feel frustrated as medical treatment fails. This child feels pain and loses hope, and both parent and child feel quilty. Some help may be possible if physicians can be better informed about childhood rheumatic diseases so that an early and accurate diasnosis may be made. If some physicians can recognize their limitations and ask for another opinion, if some physicians can admit it when their diagnosis is incorrect or that their recommended treatment isn't adequate; if services of other health care professionals are made more available to us. Under the present system, if the inadequate treatment persists, the parent solicits another opinion; but from whom? Relatives, friends, neighbors, going from doctor to doctor and finally a quack hears. The lost time in searching for the proper medical care that is our profound right in the first place may never be recovered. It may result in physical and emotional damage to the child which may never be corrected. The needs that our Parents Group would like this Commission to advocate are: to implement courses on rheumatic diseases, including those which affect children; to provide opportunities for continuing education in the field of rheuamtic diseases. ' We need the establishment of parent groups in conjunction with the arthritis centers. This would provide a service. By education and information, parents and their children may thus accept a greater responsibility in the management of their health care through better understanding. Physicians are limited in their time and expertise in helping to deal with the varied problems occuring with the child who has a chronic disease. We need updated and more information or literature. As far as we know, for the parents there are only two pamphlets which are: Arthritis in Children and What Parents Need to Know About Juvenile Rheumatoid Arthritis. These are woefully inadequate. Parents seek mcre information to help them comprehend this disease. Information is needed to provide school personnel to make them aware of this disease. There is no pamphlet to help the child understand his disease. Next is the financial drain and difficulty in obtaining life and health insurance. These are a constant source of worry for the parents now and for the child in the future. A more immediate financial need is for the child who is not hospitalized and who is receiving cutpatient medical care and may lack accessibility to the skills of the other professionals. This is due to the cost and unwillingness of third-party payers to pick ur these bills. Schooling for the child is difficult. It is hard for school personnel to understand the disease and the adjustments needed in the childs school schedule. It is important that the child is not made to feel isolated from his peers and his regular activities. Of all the 60 children represented here, only 1 is in a special school. 3-74 Milwaukee, Wisconsin November 10, 1975 We know that most of these needs require funding. We believe that it is your charge to let Congress and the public know of the inadequate funds which are. availakle. As I hear now, there are not any funds. Other diseases receive great sums of money for education, information and research; arthritis a pittance. We believe that your charge is to make Congress open their ears that they may hear the people, especially the people and the «children who are experiencing hourly the pain and frustration of rheumatoid arthritis and othter rheumatic diseases. In this Commission lies the best hope of the parents and their children that continued education of physicians, nurses, allied health professionals, parents and public take place; that accurate information be given; that the need for updated and new materials be implemented; and that finally, through a concentrated effort, a cure for this insidious disease be found. Thank you very much. DONALDSON: Thank you. Could you tell us a little bit about your parents group; how long it has been organized and what it exactly does other than getting together? LORENTZ: It came into existence about 1971. It was at Columbia Hospital here in Milwaukee, where about four sets of parents came together for a multidiscipline care for their child. We just sat down and got together and started talking about different things. From that we decided that, gee, there is scmebody else here who is sharing the same problem that I am. It is very good emotionally for the parents; physically and educationally, it has just been very good for us. We have expanded from that original 8 couples to -~ well, we have approximately 60 families in this area. VOICE: You all met in a waiting room? LORENTZ: Right; waiting for our children to be. And from the initial meeting, it just grew. Telephone calls were made and we finally got together. BATCHELOR: May I just take this opportunity to speak to a concern that has been expressed repeatedly here. The Act that we have today is the authority opening and not an appropriation. TI think it will come as no surprise to the group here that Congress would like to see the Commission report before we get to work on the funding. The fact remains that the continued interest of people like yourselves is very important to follow through. VOICE: Let me add even further, if I may, Dr. Batchelor. As I recall, in listening to the Deputy Director of the National Institutes of Health talking about whether there were funds or not it should be clear that the administration, particularly in the department of Health, Education and Welfare, was aware of the Arthritis Plan as of a year ago. And while there are no specific funds which are earmarked, labeled for arthritis research and demonstration, it is very clear that there were in the budget processes, several million additional dollars added to the Institute of Arthritis, Metabolism, and Digestive Diseases' operating budget as of this July when the present fiscal year started. So, although you may not see 3-75 Milwaukee, Wisconsin November 10, 1975 it as a line item with a label on it, there are funds to help the Arthritis Institute carry ahead the programs thet are already involved in. MELICH: I am particularly interested in what you said about your 60 families getting...I am sure you have been a great helr to each other. But my question is, how much effect have you had on those patients and allied health people? LORENTZ: We are still trying. That is right; we really don't know. We hope to send out a mailing to the local physicians shortly. We hope to send out a mailing in the near future to the local physicians and let them know about the group. But as far as being, how should I say, out in the field and really working, no; it is just a general support group right now for (inaudible). We get education information becuase we do have allied health personnel come in and talk to us, demonstrations, the dialogue with rheumatologists, psychiatrists; so we are trying, attempting to educate ourselves through the help of the rrofessions in dealing with this disease. MELICH: Don't underestimate your akility to influence doctors, because we are finding in many areas that the patient insists on some kind of training for their own doctors and the doctors are coming to the clinics not only to bring their patients, but for on the job training, which we find is very good. LORENTZ: That is what we hope to continually prod and question. Thank you. LEWIS: Have you thought about developing a little pamphlet for children? LORENTZ: Pardon me? LEWIS: Has your group thought akout taking on a little project yourself, in develcping a pamphlet for children who are arthritic? LORENTZ: I know of a couple of individuals who are trying to attempt this; yes. DCNALDSON: Well, thank you very much. At this point, I would like to recognize another famous rheumatologist who is in the audience. Again, she is unusually quiet, but her presence is felt and we are most pleased to have Dr. Hess here; Dr. Evelyn Hess who directs the University of Cincinnati program. And she represents southwestern Ohio most appropriately. Thank you for being here. Now we can go ahead with you, Miss Lemke. 3-76 Milwaukee, Wisconsin November 10, 1975 TESTIMONY OF JANET LEMKE UNIVERSITY STULCENT; PATIENT LEMKE: I would like to introduce myself. I am Janet Lemke. I have systemic lupus erythematcsus --- a disease most people don't recognize as a form of arthritis. I was diagnosed in 1970. At that time, the doctor told me it affects more women than men, and that there was no cure for it. They told my parents that I was going to ke bedridden most of the time --- these facts did not particularly help me. Even with early and accurate diagnosis and good treatment, I didn't get what I really needed, and that was to know how to live with it. At the present time, I am a full-time student majoring in social work. I receive financial assistance from the Division of Vocational Rehabilitation, which covers my tuition and books and gives me $15.00 a week to meet my expenses. However, it is necessary for me to work part time to supplement my income to help cover my medical costs. I hate to ask my family for help because you see, my mother has lupus, also. I would call your attention to what I consider a major need --- that need is realistic financial assistance. For instance, my current medical expenses consist of laboratory work of $77.00 bimonthly, and this does not include medications or routine visits to the physician. In fact, I cannot get individual health care coverage. I can only get insurance through a group plan. Currently my group policy covers $200.00 for outpatient work. This illustrates the unrealistic medical insurance coverage available. If I were hospitalized for the same services my coverage would be much better, but the cost to the puklic would also be much higher. Unfortunately, many of us do not meet the requirements for medical assistance primarily because of age restrictions or inability to prove total and permanent disability. In short, I not only have a chronic disease, but also a chronic financial grcklem. I request the Arthritis Commission recommend efforts be expended in evaluating the adequacy of the present system of financial relief, as well as investigating new ways of reducing the cost of chronic diseases. I also request this Commission not forget the less wellknown of the rheumatic diseases, such as systemic lupus erythematosus. DONALDSON: Thank you very much. Are there questions? I really appreciate your taking a day off and coming here and reminding us of your particular problem. LEMKE: Thank you. DONALDSON: Dr. Sundstrom 3-77 Milwaukee, Wisconsin November 10, 1975 TESTIMONY OF WALTER R. SUNDSTROM, M.D. CHAIRMAN, MEDICAL AND SCIENTIFIC COMMITTEE WISCONSIN - A.F. SUNDSTROM: The primary needs for arthritis care in the State of Wisconsin, from the standpoint of a clinical rheumatologist, are: (1) Lack of rheumatolcgists. (2) The lack of continuing education programs for practicing physicians in primary care (pediatricians, internists, orthoredists, physiatrists, family practitioners.) (3) Inadequate delivery of health care to rheumatic disease patients in the outlying districts of the State of Wisconsin. (4) Dissemination of information to arthritic patients by the Wisconsin Arthritis Foundation. What can be done to meet these needs? Answer. (1) Lack of rheumatolcgists. a. We need to increase the nurker of rheumatology fellowships at both medical schools. b. In order to increase the number of rheumatologists in the State of Wisconsin, this is absolutely necessary. Ce. Government funding to help support rheumatology fellowships in their training programs is absolutely necessary. As far as I am concerned, this is the prime need in the State of Wisconsin at the present time. To do all of the other things that I will mention will simply increase the need for physicians trained in the specialty of rheumatology. The rhysicians already trained in rheumatology are overburdened. We, therefore, need a new supply of physicians to handle the health care needs of patients with these diseases in the State of Wisconsin. Your support in these areas would be most welcome. Additional avenues for improveement would ke in developing paramedical personnel and training programs to help in screening patients for the rheumatic diseases. Lack of continuing education for primary care physicians. The medical schools tcgether with the Wisconsin Arthritis Foundation must increase postgraduate medical programs for physicians delivering health care throughout the State. These programs should be directed towards the pathophysiology, diagnosis, treatment, and clinical outcome of patients with rheumatic diseases. At the present time, the 3-78 Milwaukee, Wisconsin November 10, 1975 Medical College of Wisconsin, under the auspices of Dr. Daniel McCarty, has started the first postgraduate program. The University of Wisconsin, Madison, at this point has not done this. A program of Federal funding and to fund new and innovative ideas for educational instruction for physicians throughout the State is needed. Inadequate delivery of health care in the outlying districts of the State of Wisconsin. By definition, there are approximately 13 active rheumatologists in the State of Wisconsin. There are two at Marshfield, one at Ila Crosse, one at Monroe, three in Madison and five in Milwaukee. one rheumatologists in Madison is akout to leave for an. academic appointment in one of the Far Western States. As a direct result of the renewed interest in the rheumatic diseases, young house staff officers and redical students are now being more adequately trained in rheumatology. However, there is a large congregation of physicians who have never received any adequate training in the rheumatic diseases. They, therefore, have a very negative approach to patients with rheumatic diseases. The patients are suffering as a result of this. The patients are receiving inadequate workups, incorrect diagnoses, and improper therapy. As a result, their outcome is poor. Because of an improper number of trained physicians in the State of Wisconsin, and becasue of a reduced supply of primary care physicians in the outlying area, many patients with arthritis are not even seeing rhysicians. One suggestion I would have is that we have Wet Clinics going out into these communities, seeing patients and helping to instruct primary care physicians in the proper management of arthritis. This could be supported ky Federal grants. Dissemination of information to patients with arthritic diseases. This, primarily, is the responsikility of the Wisconsin Arthritis Foundation. Because of limitation of funds in the Wisconsin Arthritis Foundations, we are strapped in trying to develor new programs for the dissemination of care to patients suffering from the rheumatic diseases. Part of the practice of medicine is disseminating information to patients with diseases, and to patients who feel they have a disease. This can be done by new and innovative programs. Funding is needed to assist the Wisconsin Arthritis Foundation in developing informational and retrievable data systems. In order to define the number and/or population of patients with rheumatic diseases in the State of Wisconsin and to develop new means of delivery cf information to these patients about their rheumatic disease. These funds do not now exist. To Summarize: (1) The unmet needs are primarily the lack of specialists in rheumatclcgy to deliver health care and to help educate primary care providers. (2) Lack of facilities, resources, to educate primary care providers. 3-79 Milwaukee, Wisconsin November 10, 1975 (3) The lack of adequate health care delivery systems to the rural areas of Wisconsin. (4) The lack of funds to properly identify and distribute information to rheumatic disease patients in the State of Wisconsin. DONALDSON: Thank you. Are there questions? BATCHELOR: I would like to ask Dr. Sundstrom, in a decade or more of working in this area of specialists, what do you see as the promising (inaudible) in your actual experience in helping the primary care physician look after the patients? What I mean here is obviously the question, to what extent will the care of these patients be a responsibility to the primary care physician. As most of the specialists, what do you gain from your experience here in procedure and development? SUNDSTROM: I think the primary care physician has a great role to rlay. I think he needs assistance from people trained in rheumatology in order to define the problem --- to outline the management program. He certainly is with the patient more frequently and on a day-to-day basis as far as management is concerned. I think that we need to go out into the community and see the patient and physician together. That is an immediate problem that I think we have in the State of Wisconsin. A year ago, through the medical and scientific committee, WRMP, and in the Arthritis Foundation, we had three outreach programs in the State that went into the northern districts of the State with referral teams and did just this; and they were well received. We hopefully have on the docket for 1976 a more aggressive and total program. That, to me, reaches an immediate need for the care of patient and physician in the State of Wisconsin. The long-term need, the long-range planning need is developing rheumatologists. It is not to say if you develop 10 rheumatologists in the state of Wiscinson, how many will stay here, kut at least they will go somewhere and deliver care and rheumatolcgy. DONALDSON: One of the suggestions we heard earlier was that it would be appropriate to develop a six or eight week courses for family practitioners. The question raised then was whether or not this was -- while it would be nice -- was it a practical solution to getting... SUNDSTROM: I personally don't think that is a practical solution. I think it is a theoretical solution. I would think it would be better to bring a man one day a week to the training center, or possibly have someone go out there. There are many reasons why in a sterile atmosphere a man may not learn as much as he can learn about a disease. I think he needs the practical application. And economically speaking, family and social pressures to get cut of his community and come for six to eight weeks without replacement in an outlying district would be most difficult, I think. VOICE: TI come back to your first point, because as I look at this map of Wisconsin I see a very large uncovered or apparently uncovered part of the State. I question the ability, even with good intentions of your 3-80 Milwaukee, Wisconsin November 10, 1975 existing strengths and clinics to get into that region without further recruitment of more rheumatologists. SUNDSTROM: We need more rheumatologists to serve that area of the State that you are pointing to; there is no question about it. The manpower committment would be impossible. DONA LDSON: Well, thank you very much. I am afraid our time constraints are such that we always have to move when we would like to ask more for more information. We call now on Dr. Frank Schmid, Victoria Graziano, and Richard Jacobson. Dr. Schmid. TESTIMCNY OF FRANK R. SCHMIC, M.D. PROFESSOR OF MEDICINE ANC CHIEF, ARTHRITIS AND CONNECTIVE TISSUE DISEASES SECTION, NORTHWESTERN UNIVERSITY; MEMBER, SCIENTIFIC, MEDICAL AND SCIENTIFIC ADVISORY COMMITTEE ILLINOIS CHAPTER, ARTHRITIS FOUNDATION SCHMID: Mr. Chairman: I am Dr. Frank R. Schmid, Professor of Medicine and Chief of the Section of Arthritis and Connective Tissue Diseases at Northwestern University and Medical School in Chicago and a member of the Scientific, Medical and Scientific Advisory Committee of the Illinois Chapter of the Arthritis Foundation. I speak today on behalf of the great need in our region of care for patients and training for professionals. I speak to you not only to tell you we desperately need support, but also to tell you that we have not been idle and have been using current resources to their full limit. In Illinois we face the following challenge: Rheumatological care for a population of over 12 million pecple is needed, with a major area of concentration of about six million people in the northeastern corner of the state, namely the metropolitan Chicago area. The Gary industrial area of Indiana is contiguous of the Chicago area. In the entire State, and in the Gary region, there are but 20 rheumatologists; 17 in the Chicago region and the remaining three in Urkana and Rockford, both about 100 miles from Chicago. Westward beyond Rockford, for about another 100 miles and southward beyond Urbana, for over 200 miles, no rheumatological center exists in a region with kut a handful of smaller cities in a largely rural area. Referral care for people in the southern Illinois region gravitates to St. Louis and for other areas to Rcckford, Urbana, and then Chicago. In the metropolitan Chicago region some neighborhoods are devoid of adequate medical care as well as rheumatological care. Ghetto areas exist for blacks, about 50 percent of the cities! population; for appalachian whites; and for spanish-speaking population, mostly mexican. Here referrals occur sometimes late, sometimes never to the cities! medical centers and clinics. Only 8 of the 11 «clinics identified as arthritis clinics have a rheumatologist. The demand for care obviously is great, greater than can be adequately met by these units. For example, at Northwestern University «clinic we have a waiting period of over four months for non-emergent but painful arthritic patients, despite over 2500 patient visits per year. An adequate staff to correct the situation is lacking. Only three centers in the region have an active training program 3-81 Milwaukee, Wisconsin November 10, 1975 for rheumatologists; Northwestern, the University of Chicago, and Loyola. Their annual output of physicians with training in rheumatology averages about five per year, and of these some are research oriented and others are attracted to other regions of the country. Until this year, the States! largest medical school, the University of Illinois, had no full- time rheumatologist; and three of the other seven medical schools, including a schocl of ostheopathy, have no full-time rheumatologist. Thus, the key professional of the arthritis care team is not being produced in adequate numbers. The scope of the rroblem is detailed on attached materials that I am submitting. Every arthritis center in the greater Chicago area last year committed itself in writing to tackle the rrcblem in a unified fashion. As a consequence, a single structure, the Midwest Regional Arthritis Center, has been created as a channel for administration and funding. Without outside support, each active medical school has undertaken specific assignments usually within and extending from its geographical location in the city, thus again using Northwestern University as an example. We have pledged our efforts to develop arthritis units at four hospitals affiliated with our parent university in the north and northwest greater Chicago area. Another instance of this collaboration is the creation of a nurse-practitioner program in arthritis. Two nurses have already been trained in the last year under the aegis of the center, and six additional nurses are being recruited for our next class. Instruction is provided for this