AIDS ~ A PUBLIC HEALTH CHALLENGE State Issues, Policies and Programs Volume 2: MANAGING AND FINANCING THE PROBLEM _ Mona Rowe Caitlin Ryan Financing Chapter by Editorial Assistance Research Assistance Susan Laudicina Jeff Stryker Constance Thomas Wayne Welch Andrew Ziegler Richard E. Merritt Executive Director Intergovernmental Health Policy Project The George Washington University 2011 | Street, N.W., Suite 200 Washington, D.C. 20006 October 1987 (202) 872-1445 This document was developed, in part, under Contract No. 282-05-0013 with the Public Health Service © 1987 Intergovernmental Health Policy Project The George Washington University Design and Artwork Jean Zephir Computer Graphics and Formatting Mireille Bernardin Sunil Bhargava PREFACE Few people know what all the letters stand for, but AIDS has become a household word. According to a recent Media General/Associated Press poll, AIDS -- Acquired Immune Deficiency Syndrome -- now rivals cancer as the disease Americans fear most. The media attention has become intense; more and more research dollars, both private and public, are being channeled toward a cure; and the growing political debate about AIDS often involves controversy, not always about facts, but about values and beliefs. But amidst the national furor, little attention has been paid to the fact that, until a biomedical solution is available, controlling the AIDS epidemic is very much a state and local issue. States have a responsibility to protect the public’s health. State and local governments direct public education. The licensing and regulation of health care professionals often fall under state purview. States provide access to medical care for people unable to afford it -- especially young people; they also regulate insurers who influence access to costly health services for millions of others. State laws may provide civil protections where federal statutes leave gaps. States translate policies into programs to meet the day-to-day needs of patients, health care providers and those living with, and in increasing numbers dying from, the disease. In this era of AIDS, state officials will continue to be confronted by emotional issues raised by different constituencies. This report represents the first attempt to: o Identify most of the complex policy issues confronting state legislators and other key decisionmakers. o Underscore the leadership role that all states must play in managing the AIDS crisis within their boundaries. This is especially important for those states still fortunate to be at the beginning of the epidemic curve. o Describe the basic facts concerning AIDS and outline the major advantages and disadvantages commonly associated with controversial policies. This may raise more pertinent questions and trigger more enlightened debate. o Document state-level AIDS activities that have occurred since 1981, with some attempt to classify the policies and programs by types. This is done by: 1) outlining options for state policymakers; 2) illustrating innovative or exemplary ways states are solving similar AIDS-related problems; 3) highlighting factors that influence the success of these state programs. The purpose of this "Policymaker’s Guide" is to provide the first comprehensive review of most of the significant policy issues confronting states. But it is only a beginning. While each policy question posed and each issue discussed is the seed for future research and analysis, the report is not intended to be an in-depth technical, scientific or legal research document for all experts in the field. Because of the unusual breadth of the discussion about AIDS, it is impossible to report on every program, policy, administrative procedure or initiative adopted by the states. In addition, while suggestions are made about areas or activities that may be useful for states to consider, the report does not recommend one state program over another, nor does it formally evaluate or critique these activities and programs. Moreover, some state programs may have changed or evolved while the report was being prepared. Some policies originally recommended by state AIDS Task Forces were not implemented and some proposed programs are still pending. Attempts were made to update this information as completely as possible. IHPP welcomes additions or changes to the data: any corrections will appear in subsequent reports. This guide is a tool for state decision makers to identify and understand the broad range of questions confronting AIDS. The information is designed to help policymakers weigh various considerations, ask the critical follow-up questions -- and then develop the best solutions for their own populations. ii SOURCES The material for this report is derived from many sources, including a SamprehgReI review of all state AIDS-related: 1) legislation introduced since ey basse 1 since 1985; 3) task force reports, policy/research docu- is and HE disease newsletters received since 1985; and 4) administrative procedures and regulations. In addition, a general survey was mailed to all state AIDS coordinators in December 1986, and a Medicaid survey was mailed to all state Medicaid directors in January 1987, with assistance from the National Governors’ Association. This information was supplemented by telephone interviews with state officials, state AIDS coordinators, program directors, legislators and their staff, by two regional AIDS conferences for state officials (in Boston and Portland, Oregon), and related state research monographs already prepared by the Intergovernmental Health Policy Project. More general data was derived from hundreds of bibliographic sources, including books, journals, research reports, legislative testimony and policy statements written or prepared by the Centers for Disease Control (CDC), other government agencies and leading experts in the field, research and policy institutes, national professional associations and national and community AIDS- related organizations. Finally, the director and staff of the Intergovernmental Health Policy Project at The George Washington University -- which has been the only major research institute in the nation actively following all state AIDS legislation since 1985 -- has contributed significantly to the effort. Along with federal and state experts in different areas, they kindly reviewed chapters and added valuable insights. iii ACKNOWLEDGEMENTS Predominant support for this report was provided by a contract from the Office of Health Planning and Evaluation, Office of the Assistant Secretary for Health, U.S. Public Health Service, Department of Health and Human Services. Our special thanks go to Steven A. Grossman, Deputy Assistant for Health, who heads the Office of Health Planning and Evaluation, and to William Cloud, who served as project officer, for their support throughout this project. Three individuals within the Office of Health Planning and Evaluation deserve special recognition for their technical guidance and substantive critiques: Melanie Timberlake, Barbara Favola and Lorraine Fishback. Supplemental financial assistance for the study was received from various health corporations and health-related associations. In particular, I want to thank the Burroughs Wellcome Company for its generous contribution in support of research assistance for the Financing chapter and its help in seeing that this report receives broad distribution in the states and in the private sector. Other important contributors to this project include: Blue Cross and Blue Shield Association, Beverly Enterprises, Pharmaceutical Manufacturers Association, John Hancock Mutual Life Insurance Company, the Prudential Foundation and Sandoz Pharmaceuticals. Obviously, a report of this scope and magnitude is the culmination of the hard work and dedication of many individuals. Nevertheless, there are three special people whose perseverance, dedication to quality, unflappable per- sonalities and grace under pressure combined to make a special working relationship and an even more special product. Mona Rowe came to this project as she was completing the final report of the Maryland Governor's AIDS Task Force, for which she served as a special assistant to the Chairman of the Task Force. Her experience in state and federal government and previously in the private sector and academia gave her a unique perspective and made her well qualified to make the link between the needs of professionals in the health area and the needs of public policymakers at all levels responsible for addressing the AIDS issue. Mona developed the organization of the book and was the principal author of the chapters on Administration/Organization, Screening/Testing, Surveillance, Confidentiality and Potential Discrimination. Caitlin Ryan brought over five years of professional and clinical AIDS- related experience to this project. She had served as a consultant to the American Red Cross, the Centers for Disease Control and the National Institute of Mental Health. Her experience in training business and health care personnel on issues of AIDS in the workplace, as well as with organizing community based AIDS service programs, helped bring a measure of human understanding to many otherwise impersonal policy considerations. Caitlin was the principal author of the chapters on Medical Care, Support Services and Education. And Connie Thomas, although a newcomer to AIDS policy, served admirably as the project’s key research assistant. Connie proved invaluable iv with her encyclopedic knowledge of AIDS-related legislation and initiatives in the states and her resourcefulness and rapidity in tracking down essential facts and figures. Connie was principally responsible for the contents of Volume 3, AIDS: Resource Guide. In addition to Mona, Caitlin and Connie, other IHPP staff played impor- tant roles in the development of the report. Andrew Ziegler, Research Assistant at IHPP, provided essential backup support and was very helpful in the preparation of much of the tabular information in the report. Susan Laudicina, consultant to IHPP, was the author of the chapter on "Financing Care and Service Programs" and helped update the final material in Volume 2. Sue’s extensive background with research and writing on issues of health care financing made her the perfect person for the job. The chapter on Research was adapted from a paper and data prepared by Dr. Lee Chartock, also a consultant to IHPP. Lee’s interest in the state role in AIDS research was an offshoot of some broader policy research activities he was engaged in for a Masters degree at the Center for Health Policy and Management at the John F. Kennedy School of Government, Harvard University. Debra Lipson, Senior Research Associate at IHPP, provided overall support and major insights on the interface of Medicaid and long term care. My most sincere thanks go to the remaining IHPP staff who were not directly involved with this report. They deserve a note of gratitude for their patience and forbearance as some of their important projects and needs went unattended or were postponed in the interest of completing this report. We extend special acknowledgement to our primary editor, Wayne Welch, whose professional skill and conscientious effort have greatly strengthened and clarified our written words. Jeff Stryker, a medical ethicist and staff officer for the Institute of Medicine, "Committee for a National Strategy on AIDS," added insight, additional legal and technical expertise to many chapters, including the Introduction and Medical Overview of AIDS. Tracy Gray, an educational policy consultant, contributed to the drafting of the introductory section, and Charlotte von Salis, an attorney on special assignment to IHPP, reviewed the chapters on Confidentiality and Potential Discrimation to ensure their legal accuracy. Also, Linda Demkovich, IHPP’s Communications Director, pitched in to help sharpen the tone and emphasis of the introductions and conclusions to many of the chapters. Our thanks go to Mireille Bernardin, IHPP’s full-time computer operator, and to Sunil and Anil Bhargava, as well as Marcy Pollan, for their patience and special skills in preparing the manuscript. Finally, Jean Zephir was the graphic artist who did a superb job designing the cover and layout of the various maps and tables. We would like to extend special thanks to all of the state AIDS co- ordinators, health department officials and legislative staff who took the time to answer our many questions, send us updated materials and contributed so generously to our efforts. Numerous other individuals deserve our gratitude for their willingness to take time from their busy schedules to provide expert comments on some of our draft chapters. Among them include: Thomas Vernon, M.D., Executive Director of Colorado’s Department of Health; Mr. John P. Fanning, Legislative Coordinator for the Office of Health Planning in the Public Health Service (PHS); Samuel Matheny, M.D., Director of the Bureau of v Resources Development in the Health Resources and Services Administration; Richard J. Risenberg, Chief Counsel to PHS and Ed Woo and George Lyons from the Counsel’s Civil Rights Division; Mr. Elmer Smith, Director, Office of Eligibility Policy in the Health Care Financing Administration; and key staff in CDC’s AIDS Activity Office. And finally, we cannot thank enough the numerous state government officials who have worked so diligently to produce appropriate policies and programs in response to the AIDS crisis in their state. After all, if it were not for the fact that many states have -- and are continuing to -- respond quickly and imaginatively to the numerous public health, social and ethical consequences of this disease, we would have nothing to write about. It is our hope that these documents will contribute to a better apprecia- tion of the state role in the AIDS crisis and will be helpful to policymakers throughout the federal system as they grapple with the numerous and dynamic public policy considerations emanating from the disease. Richard E. Merritt Director Intergovernmental Health Policy Project vi TABLE OF CONTENTS VOLUME 2 - Managing and Financing the Problem Preface Sources Acknowledgments Table of Contents List of Exhibits Chapter 6 - Financing Care and Service Programs . Introduction . ‘of care Difficulties in determining cost of caring for AIDS patients; projected expenditures. 3. Joint federal, state, local financing programs Medicaid; benefits, rates and alternative services under Medicaid state plan; waivers; payment for drug therapies under Medicaid. “4. Public hospitals _ Bad debts and charity care. 5. State-only programs General assistance; catastrophic health insurance; popula- tion-specific interventions; disease-specific interventions; pharmaceutical programs. 6. Federal financing Social Security and Medicare; other programs. Private insurance coverage; insurance risk pools; mandated benefits for private insurers; community organizations; volunteers. 8. Conclusion Problems posed by inadequate public resources. Chapter 7 - Medical Care 1. Introduction 2. Policy considerations in medical care settings Infection control; AIDS in the workplace; worker right to know; organ and tissue transplants; hemodialysis. 3. Medical care for special populations Prenatal care; infants; pediatric care; IV drug users. vii AN —_—— 6-3 6-25 6-28 6-37 7-7 4. Providing medical care services Acute care facilities; outpatient clinics; dental care; nursing homes; home care; drug therapies; vaccine development; systems of care (Michigan, California); family care concept at Einstein Medical Center, New York. 5. Conclusion Insight On: AZT and Health Care Delivery Chapter 8 - Support Services 1. Introduction AIDS patients need wide range of services. 2. Legislation Laws to coordinate, fund community-based services. 3. Community-based AIDS organizations Major role played by local groups; states using them as models on how to deliver care. 4. Range of support services Housing; foster care; child and adult day care; mental health and counseling services; home care; transportation, meals; information on entitlements; legal services. 5. Developing available resources Beginning activities; overcoming staff problems; funding; public/private collaboration. 6. Conclusion Support services need to be integral to system of care, not an afterthought. Insight on: Support Services (Michigan, Massachusetts) Case Management: Key to Cost Reduction and Quality Care Chapter 9 - Education 1. Introduction Education on AIDS stirs controversy; mandating education. 2. Designing AIDS education programs Assigning responsibility; coalitions and community net- works; planning; conference/symposia; alternate test sites; content and consistency in message; summary consider- ations. 3. Media involvement Alarms vs. facts; state/local collaboration; media respon- sibilities. 4. Training health care providers Need to reduce workers’ fear; content; funding. viii 8-1 8-2 8-2 8-7 8-21 9-1 9-2 9-5 5. Educating special populations 9-10 IV drug users and partners; gay and bisexual men; women; minorities; community-based AIDS organizations. 6. School children and teenagers 9-19 AIDS intensifies long-standing debate on sex education; working with parents; developing a curricula. 7. Conclusion 9-23 Education seen as key factor in curbing spread of AIDS Insight on: Education Programs (New Jersey, Michigan, Maryland) 9-25 Chapter 10 - Research 1. Introduction 10-1 2. Research in California 10-1 Opportunities; funding; management. 3. Research in New York 10-4 Opportunities; funding; management. 4. Research in Massachusetts 10-6 Opportunities; funding; management. 5. Research in Florida 10-8 Opportunities; funding; management. 6. Research in New Jersey 10-8 Opportunities; management. 7. State relations with universities/institutions/business 10-9 Using state university system; relying on private institu- tions; working with private industry; models for distribu- ting research funds. 8. Relationships among states, and with federal government 10-10 Problems of 'definition/quality Oh 9. Conclusi y 10-11 The role for states in AIDS research. ix 6-1 6-2 6-3 6-4 6-5 LIST OF EXHIBITS VOLUME 2 - Managing and Financing the Problem Paying for AIDS-Related Health Care: How to Qualify for Medical Assistance States With Medically Needy Programs Under Medicaid AIDS Cases in Selected States: Percent Covered by Medicaid Impact of Retrovir Treatment Costs on Selected State Medicaid Programs States With Indigent Care Programs (As of June 1985) States With Health Insurance Conversion Statutes States With Health Insurance Continuation Statutes States With Health Insurance Risk Pools Advantages and Disadvantages in Developing a Designated AIDS Unit Comprehensive Family Care Center, Einstein Medical Center States That Fund Community-Based AIDS Organizations to Provide Support Services States That Fund Community-Based AIDS Organizations to Provide AIDS Education States With Minority AIDS Education Programs 7-34 6. FINANCING CARE AND SERVICE PROGRAMS What types of funding and financing options are available to states to help them respond to the AIDS crisis? 1. Introduction There are more AIDS-related health services available in this country than ever before. These services, which are both hospital and community- based, are multiplying because of the growing demand for appropriate and sensitive health services for persons with AIDS and ARC. To finance these AIDS services, many diverse initiatives are being developed. In cities with the highest incidence of AIDS, it is now common to find voluntary organizations and public health departments jointly financing and delivering services. Some states are making conscious efforts to maximize state and federal financing sources, sometimes in an integrated financing strategy. Others have sought to develop innovative financing sources, some- times in concert with the private sector. This chapter will examine the financing options available to help states respond to the AIDS crisis. At the outset, decision-makers should keep in mind the following: o Identifying funding sources for new or expanded AIDS treatment programs will most likely affect the allocation of resources to other health and/or social services programs unless new funds are made available. o Ultimately, the questions of whether, and how, to fund new or expanded AIDS-related programs will become a public issue and responsibility. As AIDS and ARC caseloads increase, the public will become, by choice or default, an important payer of health and social support services. o In order to provide appropriate and adequately funded AIDS services, states may need to initiate innovative mechanisms, to pool resources and to take advantage of both public and private funding. 2. Determining the Cost of Care It is difficult to list every medical and health service that will be used by a person with AIDS over the course of time from diagnosis to death, as there is no typical AIDS patient. The course of AIDS and associated illness will differ, depending upon the stage of detection and diagnosis as well as the medical treatments that are available -- and used. The medical costs will vary according to not only the nature of the opportunistic infections and cancers involved, but also the health status of the individual (See chapter on Medical Care). This is particularly relevant for such AIDS patients as IV drug users, 6-2 Volume 2 - Managing and Financing the Problem who have often suffered from frequent infections prior to their AIDS diagnosis and who may wait for significant periods of time, until they are profoundly ill, to come in for treatment. As a result, many of these individuals may require higher levels of acute care, suffer from more opportunistic infections and may live for shorter periods of time following their diagnosis. AIDS is a particularly expensive disease to treat because its patients tend to live in a debilitated state for lengthy periods, and much of the care had been associated with hospital stays. This is due to several factors: successive admissions throughout the course of illness; long stays due to severe medical complications; more intensive nursing care; higher uses of pharmaceuticals and supplies; the need for more frequent use of specialized equipment, including dialysis units; and the lack of adequate long-term care arrangements when patients are ready for discharge. Currently there are no reliable estimates as to what the ultimate costs of AIDS services will be, either on an individual patient level or in the aggregate. The conventional wisdom is that medical and related care for each AIDS patient costs between $40,000 and $150,000, based on an average survival time of 18 months between diagnosis and death. As new drug therapies increase that survival time, the overall cost of care may grow accordingly. From early information on care provided in San Francisco and through at least one insurance company offering AIDS case management services, it appears that strategies to move AIDS patients from expensive hospital beds into hospices or home care programs will save money, although it is unclear how much. What is clear is that as the number of AIDS cases grows, the total cost of providing health care will increase dramatically. | The U.S. Public Health Service’s executive task force on AIDS predicts total personal medical care costs will rise from a 1986 range of between $1.2 billion and $2.4 billion to a 1991 range of between $8 billion and $16 billion.. Both the private insurance industry and Medicaid play key roles in providing coverage for AIDS and ARC patients, although the extent of their involvement remains uncertain. Cost data is based on limited and frequently anecdotal information. Given the aggregate statistical data that have been available for Medicaid, and the fact that data are frequently not available for specific diagnoses, it has been impossible to differentiate AIDS patients and their expenditures. The Health Care Financing Administration’s (HCFA) best estimate is that $50 million in federal Medicaid funds was expended during fiscal 1985 for care to AIDS patients, in fiscal 1986 some $100 million was spent, and in 1987 this amount will rise to $200 million, with state Medicaid funding at similar levels. A number of efforts are underway at the state and federal levels to better track AIDS/ARC persons and costs associated with their care. In addition to the lack of a standard treatment plan (and until very recently standard medical diagnostic codes), these efforts may be limited by the need to maintain strict patient confidentiality. * Several states (including California, Michigan and Ohio) have mandated studies to, among other things, estimate the incidence of AIDS and ARCS, to explore the types of services and financing available, and to compute the average cost of care per patient. In California, Chapter 6 - Financing Care and Service Programs 6-3 the average annual cost per AIDS patient ranged from $15,955 to $25,350 in 1984. (However, this estimate excludes such costs as nursing home care, outpatient drugs and in-home care.) Results from a study conducted by Michigan indicate that the average cost for Medicaid-covered services was $30,000 per person in 1985, based on 18-22 months from diagnosis to death. In addition, HCFA has a Medicaid project that is using data on program enrollees, services, expenditures, and providers in California to determine the collective incidence of AIDS and ARC and to develop better cost estimates. The costs of AIDS care to the Medicaid program are also under analysis through a study conducted by the RAND/UCLA Center for Health Care Financing Policy Studies. This project provides background information on the Medicaid population and develops cost estimates for the Medicaid program over time. Finally, the National Association of Public Hospitals plans to release this summer results of a survey of the experience of 225 member hospitals with 5,000 AIDS cases during 1985. This survey will yield critical financial information on a state and city basis that can assist policymakers in identify- ing the need for support of AIDS activities in public health care institutions. It should be stressed that the vital need to collect and monitor baseline data on the AIDS crisis can be accomplished with due regard to the right of patient confidentiality (See also chapter on Confidentiality). Provisions of the Public Health Service Act have been used successfully in the past to protect confidentiality in federally sponsored research, and these assurances could be expanded to cover all AIDS-related research. Similar inter-agency agreements to share data can be worked out at the state level if an atmosphere of trust and cooperation can be maintained. 3. Joint Federal, State and Local Financing Programs Medicaid To become eligible for Medicaid, a patient must meet specific criteria. Any person with a diagnosis of AIDS is presumed to be disabled for purposes of Title XVI Supplemental Security Income (SSI) as a result of a 1983 directive by the Social Security Administration’s Office of Disability Programs. As of September 1987, the Social Security Administration has expanded its definition of diseases that must be present for a diagnosis of AIDS to include dementia and wasting. This change will increase the number of people eligible for automatic disability benefits; In 36 states, a patient meeting the SSI income and resource standards and the disability definition for SSI can qualify for this program, and hence for Medicaid, within a shortened eligibility determination period. Fourteen states, however, apply more financial criteria or disability requirements for Medicaid cligibility. Patients who don’t qualify immediately for SSI cash assistance may qualify for Medicaid under other coverage groups. One such group is the "medically needy," whereby persons with higher incomes or resources than allowed for SSI can qualify if their incurred medical expenses are high in relationship to their income. This process is called "spending down." (See Exhibit 6-1 for a summary on eligibility for Medicaid and SSI programs.) 6-4 Volume 2 - Managing and Financing the Problem EXHIBIT 6-1 PAYING FOR AIDS-RELATED HEALTH CARE: HOW TO QUALIFY FOR MEDICAL ASSISTANCE TO GET: AN INDIVIDUAL MUST: Have con- + Meet Low-Income firmed Diag- Standard nosis of AIDS Person with AIDS I. SSI Benefits Person with Be Evaluated + Meet Low-Income ARC and Declared Standard Disabled OR SSI-Related Be Disabled + Meet Low-Income (SSI eligible) Standard II. Medicaid Benefits for AIDS/ARC persons Qualify for + Have Pre-AIDS/ AFDC ARC Disability (state standard) Categorically Eligible Medically Have Large + Meet Low-Income Needy Medical Bills Standard OR ITI. General Assistance Persons with Qualify for + Meet Low-Income Benefits AIDS/ARC None of Above Standard Chapter 6 - Financing Care and Service Programs 6-5 Thirty-three states cover a medically needy population that includes adults, children and adolescents with AIDS. Two other states have a medically needy program in which only pregnant women and children are eligible (see Exhibit 6-2). In the 15 states with the highest reported number of AIDS cases, all except Georgia and Texas have programs for which a full range of medically needy persons, both adults and children, qualify. The Georgia and Texas programs qualify only otherwise eligible pregnant women and children. In addition to this SSI and medically needy population, there are some AIDS and ARC patients who become Medicaid eligible through such programs as Aid to Families with Dependent Children. 77! Theoretically, given enough time, every AIDS patient could exhaust resources to a level where medical expenses would become the responsibility of Medicaid. But this is an unlikely scenario. As with any other disability determination, the patient must still meet SSI and Medicaid income and resources standards. Although the determination process is shortened by presumption of eligibility, the disease may progress too quickly for many patients to exhaust their own resources and then complete application processes, even shortened ones, for SSI and Medicaid. On the other hand, some evidence suggests that IV drug users and their sexual partners who are also at risk may be more likely to be low-income and therefore eligible for Medicaid or for other ‘public funding when they become ill, or shortly afterwards. The impact on Medicaid could be considerable in areas where the risk groups are concentrated, e.g., New York and New Jersey. The impact of Medicaid also may grow as heterosexual transmittal of the virus becomes more frequent, resulting, as is now evident, in more illness among low-income and minority women and children born to them. HCFA actuaries estimate that 40 percent of AIDS patients are assisted through Medicaid with their direct medical care expenses, and an average of 23 percent of such expenses are borne by Medicaid. In fiscal 1987, this amounts to $400 million in federal and state Medicaid funds, shared equally by both levels of government. For fiscal 1988, this is estimated at $600 million. Thus, while Medicaid serves an important role in paying for medical services to AIDS patients, the relative expenditures for AIDS-related services to date have had a relatively small impact on the overall Medicaid budget -- 1 percent, or less. Preliminary data from public hospitals in 10 states with a high incidence of reported AIDS cases also points to a significant role for the Medicaid program in financing AIDS-related health care. Exhibit 6-3 points out the percent of AIDS admissions covered by Medicaid. AIDS STATES WITH MEDICALLY NEEDY EXHIBIT 6-2 PROGRAMS UNDER MEDICAID Covers both adults and children SOURCE: AIDS: A Public Health Challenge Intergovernmental Health Policy Project The George Washington University, 1987. Covers only pregnant women and children 9-9 wa[qoIg dy) Surdueulj pue SuISBUB[A - 7 dWN[OA Chapter 6 - Financing Care and Service Programs 6-7 EXHIBIT 6-3 AIDS Cases in Selected States Percent Covered by Medicaid NUMBER OF % COVERED STATE ADMISSIONS 1/ BY MEDICAID 2/ NEW YORK 2490 69% CALIFORNIA 1072 50% FLORIDA 282 21% TEXAS 159 10% NEW JERSEY 309 24% MASSACHUSETTS 47 27% VIRGINIA 35 10% LOUISIANA 39 2% CONNECTICUT 77 39% OHIO 53 35% ALL 50 STATES 5144 54% 1. Admissions represents newly diagnosed AIDS patients, plus some patients previously diagnosed at another hospital. 2. Percent of AIDS admissions reported by selected hospitals who are either receiving Medicaid benefits or whose Medicaid eligibility is pending. Source: National Hospitals survey of members, 1985. Association of Public Hospitals/Council of Teaching 6-8 Volume 2 - Managing and Financing the Problem Medicaid Benefits and Rates Medicaid eligibility and coverage of services are designed to be "disease neutral." That is, services cannot be denied or reduced solely because of a recipient’s diagnosis, type of illness or condition. Conversely, recipients cannot receive additional services or more of a service solely because of their diagnosis, illness or condition. This applies except for certain circumstances- -- case management services and services available under federal waiver-- which are addressed below. Therefore, many of the ideas presented in this section are applicable to Medicaid recipients in general, though they are specifically applied here to AIDS/ARC patients who are Medicaid-eligible. The scope of services covered under Medicaid varies considerably from state to state. All states must cover certain mandatory services for the categorically needy and, for all practical purposes, for the medically needy. Mandatory services which would most likely be used by AIDS patients are inpatient and outpatient hospital services, physician services, laboratory services and home health care for individuals aged 21 and over. States may also choose to cover additional services as specified in federal regulations. Examples of optional services offered are clinic services, pre- scription drugs, intermediate care facility services, miscellaneous diagnostic services, skilled nursing facility and home health services for individuals under age 21, and such ancillary services as personal care services, case management services and hospice services. Nearly half the states offer 20 or more optional services. California and New York, which have reported over half of all the AIDS cases in the United States, offer 30 and 28 optional services, respective- ly, to their Medicaid populations. Medicaid recipients with AIDS appear to have encountered some of the same access problems as other beneficiaries. Their care has been fragmented and episodic, often centered in outpatient departments or emergency rooms, due to low physician participation in the program. Their hospital stays may sometimes be prolonged because the services that would allow them to return to their homes or other community settings are unavailable. A spot check of AIDS patients receiving Medicaid in New Jersey hospitals in October 1985 found that 25 percent of these could be discharged and placed in nursing homes or offered some other lower level of care. Providers’ reluctance to serve persons with AIDS is another major barrier. In February 1987, the National Governors’ Association (NGA) surveyed state Medicaid directors on their response to the AIDS epidemic and found that approximately half of the 38 respondents are experiencing problems with provider reluctance to serve AIDS patients, | Many states reported that recipients with AIDS or ARC have difficulty obtaining access to Medicaid- covered services, especially nursing homes. Other kinds of providers may also refuse to accept AIDS patients for several reasons. Sometimes persons with AIDS require extra effort -- dentists must take special precautions, and home health aides must give special handling to dressing and other materials. In other cases, access has been limited by simple prejudice; one state reported that a pharmacist was afraid to have a person with AIDS enter the store. Chapter 6 - Financing Care and Service Programs 6-9 all There are a number of ways that states can creatively use the existing Medicaid coverage and benefit structure to address these problems. Approaches that can be taken include: a) enhancing payment levels to providers; b) covering more cost-effective services and treatments under a state’s Medicaid plan; and c¢) developing new and separate services for AIDS patients through use of Medicaid waivers. The recent NGA survey found that few state Medicaid agencies have adopted, or are considering, major policy changes targeted to AIDS and/or ARC individuals. Instead, the majority of states, especially those with a low incidence of reported AIDS cases, are simply continuing to pay for services for these individuals as they would pay for any Medicaid recipient. This fact, however, should not be construed as discriminating against persons with AIDS/ARC, but as reflecting the "disease neutrality" of Medicaid. Three states that have adopted an enhanced reimbursement policy as a way of encouraging Medicaid providers to treat persons with AIDS are Florida, New York and Wisconsin. Because of the usual Medicaid prohibition against discrimination by diagnosis, however, the added payment must somehow be related to a new or more intensive kind of service, e.g. isolation in nursing homes or intensified home care for the terminally ill. Thus the expanded reimbursement level is available to a general category of patients -- not just those with AIDS. Beginning in late 1985, Florida offered to double its Medicaid rate for skilled nursing facilities for any home which would accept AIDS patients, thereby creating a higher level of Skilled Nursing Facility (SNF) care. At present, only two county-owned nursing homes are billing for this enhanced rate, and no private facility has agreed to the new reimbursement terms. In addition, it is believed that a handful of Florida nursing homes have inad- vertently taken AIDS patients, but levels of care are insufficient to warrant the extra reimbursement. In Wisconsin, a separate Medicaid nursing home rate for AIDS patients became effective April 1985. The rate is designed to reim- burse providers for private room costs, as well as any special supplies or additional training costs which may arise, subject to target limits. These reimbursement changes may not solve all placement problems associated with AIDS individuals. For one thing, nursing homes throughout the country have traditionally been running at or near full occupancy; therefore, they may not be seeking additional patients. In addition, some facilities are simply ill-equipped physically to care for AIDS patients. Finally, concerns about the possible loss of private patients, liability, and staff reluctance may outweigh the increased reimbursement from Medicaid. While not conceived as a Medicaid initiative per se, New York is designating certain hospitals as comprehensive centers for care of AIDS patients. The designated center provides or arranges for a full range of services that may be required by an AIDS patient, including housing, home health and hospice services, if appro- priate. These designated AIDS centers qualify for higher Medicaid reimburse- ment. JA Vv 6-10 Volume 2 - Managing and Financing the Problem The New York Department of Health has designated nine hospitals as AIDS centers so far, and is considering applications from other facilities. These centers will be required by the state to provide care for all AIDS patients, regardless of payment source. Each provider receives a discrete reimbursement rate from the state, with Medicaid paying for services provided to Medicaid recipients. It is anticipated that reductions in inpatient hospital stays for AIDS patients will allow participating hospitals to spend more on outpatient treatment and home care. Those states which operate provider reimbursement systems that adjust for patient case mix are better able to respond to the financial requirements of facilities that treat AIDS and ARC individuals. Currently, 12 states have Medicaid hospital reimbursement systems that base payment on medical diagnosis and use some form of DRG (diagnosis related groups) methodology. (States which use hospital DRG systems generally follow the federally-devised DRG classification system used in Medicare payment, which lacks an AIDS- specific DRG.) Eleven states incorporate some type of case mix adjustment in calculating Medicaid payments to nursing homes. There are several ways that states can design such case mix payment systems to best take into account AIDS/ARC-related treatment costs over time: o Adopt the new ICD-9 diagnostic classification codes, which speci- fically address AIDS and ARC conditions. o Use their own Medicaid patient cost experience in devising DRG weighting factors, and recalibrate the weights annually to make hospital DRG payment most responsive to the cost experience of individual providers. o Periodically update the base period used to determine historical costs to help ensure that the actual cost experience of providers will be reflected in Medicaid rates. Another strategy might be to review all of a state’s Medicaid services that could help persons with AIDS and HIV infection. These services could be \ packaged together /to help providers, case managers and patients take better advantage of them. For instance, last year the New York City Human Resources Administration began funding a unique vendor contract for home care services for AIDS/ARC persons throughout the city. While funding is through normal Medicaid channels, the program is unique because it provides all levels of home care in one package for a specific population and uses a single provider, the Visiting Nurse Association. In this manner, patients are more likely to have responsive and consistent home care services. A further example of improved coordination of Medicaid services is provided by Maryland, which encourages Medicaid families and providers to refer children to the EPSDT (Early and Periodic Screening, Diagnosis and Treatment) program. The EPSDT program can provide enriched services, out- reach and case management for pediatric AIDS cases who are Medicaid eligible, beyond those otherwise available under the general state Medicaid program. While the federal financial match for Medicaid services such as clinic services Chapter 6 - Financing Care and Service Programs 6-11 in Maryland, and many other states, is only 50 percent, the federal match for outreach and case management services provided by skilled professional medical personnel is 75 percent. Thus, using the EPSDT program for pediatric AIDS cases can be financially beneficial to states. Still another strategy might be expansion, where possible, of coverage in areas that will provide care in less costly settings. Candidates for such expansion of payments include nursing home care, home health services, personal care services, mental health services, and outpatient drug therapy. Vv Alternative Services under Medicaid State Plan States also can add coverage for new benefits under the state Medicaid plan. Examples of appropriate, potentially cost-effective services for persons with AIDS/ARC that could be authorized under existing legislative and regulatory authority are: 1) hospice care (free-standing/facility-based/home- based); 2) case management services; and 3) newly approved drug therapies. Broadly defined, hospice services are "a program of palliative and supportive services which provide physical, psychological, social, and spiritual care for dying persons and their families." Studies have shown that hospice care can be a cost-saving, as well as humane, way to care for terminally ill patients. While the vast majority of patients in these studies have had terminal cancer, data from Hospice of San Francisco indicates that hospice care of persons with AIDS also yields cost savings and beneficial results. Recently authorized as an optional Medicaid benefit by the Consolidated - Omnibus Budget Reconciliation Act of 1985, hospice care could be offered to AIDS patients who are in the terminal stages of the disease. Hospices cannot be targeted to AIDS patients only, but must be made available to all terminally ill Medicaid recipients. Federal approval of Medicaid hospice services has been extended to Kentucky, and other states (California, Florida, Hawaii, Maryland, New York, Ohio, Pennsylvania and Wisconsin) are considering or proposing such a move. A number of reasons may account for the delay on the part of other states: o Federal authorization to cover hospices took place relatively recently. States are proceeding with caution in choosing whether to adopt this service. — o Federal implementation regulations have not yet been promulgated. States may be awaiting federal guidance before deciding to imple- ment hospice care. o Legislation authorizing hospice care may be too limiting, because of restrictions concerning the level of reimbursement and Medicare certification requirements. 6-12 Volume 2 - Managing and Financing the Problem o Perhaps most important, although targeted toward terminally ill patients, hospice services cannot be targeted specifically to AIDS patients, and would have to meet all the general statewide and comparability requirements of Medicaid service regulations. This could have significant cost implications. One way to overcome these restrictions may be for states to provide hospice care as part of the package of services available under a Section 2176 ("Home and Community-Based Care") waiver. Under such a waiver, states could conceivably define a hospice-type benefit, limit its availability to AIDS/ARC patients, and establish a separate reimbursement method. Of course, an application for such a Section 2176 waiver would have to demonstrate cost- effectiveness and be subject to federal approval. [For a detailed discussion of this waiver authority, see the following page.] Case management is another service that could potentially benefit many persons with AIDS and ARC. Since many of these persons have complex medical and psychosocial needs, a case manager could be quite useful in ensuring that an individual obtains all appropriate services (See chapter on Support Services). Also, case management through patient information and education could serve a public health function by helping HIV-infected persons refrain from activities that spread the virus. With enactment of COBRA (1985), states may offer case management as an optional Medicaid benefit to specified populations. The Omnibus Budget Reconciliation Act of 1986 (OBRA) identified AIDS/ARC patients specifically as a group that could be provided case management under Medicaid. Though final regulations have not been issued, several states have submitted the necessary state Medicaid plan amendments and received approval to provide case manage- ment. But none of these programs are directed exclusively to AIDS patients. On the other hand, the state of Washington has submitted an amendment to provide case management for AIDS patients. The rationale offered by state officials is that, while appropriate medical and social services are available, a mechanism is needed for coordinating and referring those services. Several other states (Maryland, Massachusetts, New Jersey and Oregon) are also considering case management services for Medicaid recipients with AIDS. Medicaid Waivers States also can take advantage of federal legislation (the Omnibus Budget Reconciliation Act of 1986) permitting them to apply for Medicaid waivers to target health-related services to AIDS and ARC populations. These waivers are for "home and community-based care" and "freedom of choice" programs. Prior to enactment of these waivers, the Medicaid program did not generally cover non-medical services, and states could not direct Medicaid recipients to the most cost-efficient providers. WY In applying for the home and community care waiver, states must provide several assurances, including that the beneficiaries would otherwise require institutional care under Medicaid, and that per capita Medicaid expenditures Chapter 6 - Financing Care and Service Programs 6-13 will not increase as a result of the waiver. Moreover, HCFA developed a cost formula which requires that total Medicaid program expenditures not increase with the waiver. Although there are currently over 100 home and community care waivers in effect, New Jersey was the first state to receive a Section 2176 Home and Community-Based Services waiver specifically for AIDS and ARC patients. Under terms of the waiver, implemented March 1, 1987, New Jersey expects to provide alternative services to approximately 3,000 persons over three years, at a cost of about $68 million in Medicaid funds. The purpose of the program is to help eligible individuals to return to the community, rather than be cared for in a hospital. Individuals eligible for the waiver program must be: 1) diagnosed as having AIDS or ARC; 2) in need of institutional care; and 3) able to meet Medicaid financial eligibility stan- dards. The program is statewide, with slots allocated to each county based upon the estimated number of AIDS/ARC individuals to be served. The program covers case management, medical day care, narcotic and drug abuse treatment, private duty nursing and intensive supervision for foster care children. The service package reflects the demographics of New Jersey's AIDS and ARC population -- IV drug abusers, their sexual partners, and their children. Under the waiver, narcotic and drug abuse treatment is provided in the home, which was not possible under the state plan. New Mexico’s waiver application to establish an AIDS-specific home and community-based care program has recently been approved. Five other states are developing waiver applications (California, Hawaii, Maryland, Ohio and Wisconsin.) Colorado, Illinois and North Carolina report that they are already serving AIDS patients under existing Section 2176 waiver programs, which were designed to accommodate the physically disabled. To develop a program on a smaller scale, a state might submit an application for a small home and community based services waiver called a "model waiver." Model waivers can provide services directed at certain groups of Medicaid-eligibles such as AIDS patients. However, the size of the recip- ient groups is limited to 50 people. This may be an appropriate size in some states, especially the lower-incidence states, but not in others. } In summary, Section 2176 waivers may be a useful method to finance the delivery of appropriate, cost-effective services to Medicaid eligible AIDS/ARC patients. There are, however, a few cautions. / First, it often takes a long time to develop a waiver application, receive approval, and begin implementa- tion. New Jersey began developing its waiver approximately 10 months before it became effective. Second, operating a waiver carries with it the respon- | sibility of federal reporting requirements which are more extensive than in many other programs. To overcome some of these problems, the National Governors’ Association supports loosening waiver requirements and allowing state Medicaid programs to provide appropriate support services to AIDS patients upon filing necessary information and giving assurances regarding state policies for service coverage and case management. 6-14 Volume 2 - Managing and Financing the Problem Freedom of choice waivers authorized by Section 2175 of the Omnibus Budget Reconciliation Act of 1981 allow the secretary of Health and Human Services to waive Medicaid state plan requirements, including the requirement that recipients be allowed to choose among qualified providers. This waiver can be for one of four specific purposes, all designed to increase the cost- effectiveness and efficiency of the services. It can be applied to a broad variety of providers, including physicians, hospitals and home health agencies. A freedom of choice waiver could be constructed generally to restrict an AIDS patient to a primary care "case manager" who would locate, coordinate, and monitor all health care and who may also provide primary health care. This concept could provide AIDS patients with primary care physicians while simultaneously linking the primary care giver and the patient to a network of other providers who have, or will acquire, experience in this area of treatment. Such an arrangement is especially important for persons with AIDS and for persons with special high-risk behaviors like IV drug use. To acquire this waiver, a state must document that its proposal is cost- effective and meet other requirements of law. Given the lack of data con- cerning costs of treating Medicaid-cligible AIDS patients, it may be difficult to document the cost-cffectiveness of proposals targeted to the AIDS population. Special surveys or in-depth sampling of bills may be necessary to show cost- effectiveness. Based on responses to the NGA survey, no states are even considering this approach to AIDS/ARC patients. It should be noted that states have generally used Section 2175 waivers to reduce cost and limit such abuses as "doctor-shopping" and excessive use of emergency rooms and outpatient depart- ments. While some states have used Section 2175 waivers to contract with cost-effective providers, this approach may not be as applicable for a class of patients who tend to require tertiary services. If the aim is to improve coordination of services, the non-waiver case management option under Medicaid may be simpler. Drug Therapies: A Special Medicaid Consideration X All states (except Alaska and Wyoming) cover prescription drugs as an optional Medicaid service. Some states either limit the numbers of prescrip- tions which can be refilled, the total quantity of each prescription, and/or the total cost. X Virtually all state Medicaid programs require FDA approval before covering a new drug. Many require additional steps, such as approval by a state committee or even public hearings. California recently enacted a law under which AlIDs-related therapeutics approved by the FDA will be granted immediate temporary approval status on the Medicaid drug formulary while the formal review process is conducted. A drug formulary or list of pharmaceutical products is either open (unrestricted) or closed (restricted). Each state’s Medicaid program determines its own formulary status. An open formulary is a list of virtually all prescrip- Chapter 6 - Financing Care and Service Programs 6-15 tion drugs approved by the FDA and allows the prescriber to choose the most medically appropriate drug to treat each patient. A closed formulary is a limited list of drugs for which reimbursement will be granted under the state Medicaid program. No drug that is not on the list is covered without prior approval by the state. Thus, prescribers are administratively limited in their choice of drugs in treating Medicaid patients. New drug therapies for the treatment of AIDS are presently undergoing clinical trials. One of them, Retrovir (formerly known as AZT), has been ap- proved for regular use by the FDA. Retrovir has demonstrated some success in prolonging survival among certain AIDS patients and symptomatic ARC patients (See also chapter on Medical Care). It is being marketed as a prescription drug by the Burroughs Wellcome Co. At present, 44 states and the District of Columbia have approved Retrovir as a covered drug benefit in their Medicaid programs. In the remaining six states, the question of whether to place Retrovir on the Medicaid drug formulary is under consideration. These states are: Alabama, Arkansas, Colorado, Florida, Louisiana and Texas. Analysis of the data available indicates that treating AIDS/ARC patients with Retrovir could reduce medical costs, primarily because of fewer opportunistic infections and hospitalizations. On the other hand, the cost of the drug itself is high, and its use could result in side effects whose treatment would engender further costs, e.g. additional blood tests and transfusions. Thus, the net cost-effectiveness of reimbursing expensive drug therapies like Retrovir is still unclear. Exhibit 6-4 represents the estimated impact of Retrovir treatment expenditures on the budgets of selected state Medicaid programs, as determined by the Intergovernmental Health Policy Project. The states listed include the five with the largest population of AIDS/ARC patients, and four others which report low numbers of AIDS/ARC patients. The first column represents the number of AIDS-only patients in each state who are presumed eligible for Medicaid. The second column estimates the combined state and federal cost in each state for Retrovir treatment, assuming: 1) state prescription drug reim- bursement is based on Average Wholesale Price; 2) the cost of the drug to the payer is equal to the Average Wholesale Price of $225 per 100 capsules; and 3) patients will use 1 gram or 10 capsules of Retrovir daily. Data in the last column represent the total cost of Retrovir treatment compared to overall Medicaid expenditures for outpatient drugs in 1985. 6-16 Volume 2 - Managing and Financing the Problem EXHIBIT 6-4 Impact of Retrovir Treatment Costs on Selected State Medicaid Programs # Medicaid-eligible Total Retrovir Cost % Medicaid Exp. AIDS patients! @ $8.212/pt./yr? for Outpt.Drugs? New York 3,178 $26,098,000 10% . California 2,318 19,035,000 7% Texas 864 7,095,000 7% Florida 770 6,323,000 7% New Jersey 636 5,223,000 7% Nevada 32 263,000 7% Utah 18 148,000 2% New Hampshire 13 107,000 2% Montana 5 41,000 1% 1 Data derived by taking state-reported estimates of the number of new AIDS cases for the year ending March 2, 1987 (as published by the CDC); these estimates were then doubled to approximate the total AIDS caseload. Next, each figure was multiplied by .40 -- the percentage of AIDS patients that HCFA estimates are currently served under Medicaid. 2 Costs represent combined federal and state expenditures for Medicaid as reported on HCFA Form 2082 for federal fiscal year 1985. These costs would be shared approximately equally by the states and the federal government. 3 Data represent the cost of Retrovir as a percentage of all other Medicaid expenditures for outpatient drugs in federal fiscal year 1985, as reported on HCFA Form 2082. Chapter 6 - Financing Care and Service Programs 6-17 As described in Exhibit 6-4, estimates of the total cost of Retrovir for treatment of AIDS patients range from less than $100,000 to more than $26 million, depending upon the AIDS caseload in each state. While these are significant sums, they represent only a small portion of overall Medicaid spending on outpatient drugs, from a low of 1 percent in Montana to a high of 10 percent in New York. And, when compared to the size of the total Medicaid program in each state surveyed, they are well under 1 percent. However, these Medicaid cost estimates must be read with caution, as they are based on preliminary estimates and do not take into account develop- ments that may cause projected costs to rise or fall. Most importantly, they only represent Retrovir costs, not the net cost of treatment. Any of the following factors could influence the final cost to a state for AIDS-related health care supplemented with drug treatment: o State Medicaid programs which reimburse at below the Average Wholesale Price for Retrovir (such as Florida or Nevada) may spend less than estimated in Exhibit 6-4, while those which allow dis- pensing fees to be charged by pharmacies may pay more. o AIDS patients may not be on Retrovir for 365 days a year; some may die within the year, others may have a reduced dose or need to go on a "drug holiday" or abstain for medical reasons. o Some AIDS patients may develop side effects from the drug, such as anemia, causing added blood transfusion costs under Medicaid. o Hospital stays for some AIDS patients who are on Retrovir may be shortened or eliminated, thereby resulting in lower costs to Medi- caid. On the other hand, if health care coverage pays for prescrip- tion drugs on an inpatient basis only, an incentive could be created ' for patients to seek hospitalization. o Some AIDS patients who are receiving Retrovir and who are eligible for SSI, and thereby covered under Medicaid, may lose SSI coverage because their health status improves to the point where they are no longer considered disabled. However, these AIDS individuals might be shifted over to a state’s general assistance program. Other factors for states to consider in extending coverage to new drug therapies for AIDS: o New therapies, in addition to Retrovir, are being developed. Many might well reduce side effects, and/or reduce dosage. Thus, total drug costs could be lowered by using less expensive complementary drug therapies. o As the number of AIDS cases increases, so will the cost of AIDS- related drug therapies relative to the cost of the states’ total drug program. 6-18 Volume 2 - Managing and Financing the Problem o Currently, it is extremely difficult to estimate the cost of drug therapies to state Medicaid programs if the drugs are used with the HIV-infected or ARC population. It is difficult even to estimate the size of these populations, and Medicaid coverage of these patient groups is far more difficult to predict. 4. Public Hospitals -- Bad Debts and Charity Care Public hospitals have traditionally been an important source of care for the medically indigent, especially in urban areas. This remains true today as the absolute number of bad debt and charity care patients increases. According to the American Hospital Association, general hospitals incurred losses totaling $9 billion worth of bad debt and charity care in 1984. When state and local contributions are deducted from this amount, the AHA estimates the residual uncompensated care as $5.7 billion, double what it was in 1980. Public hospitals are the hardest hit, as large numbers of uninsured poor people use outpatient clinics and emergency rooms to obtain care. Financially hard-pressed state and local governments have been unable to increase payments enough to offset losses on indigent care. The National Association of Public Hospitals and the Council of Teaching Hospitals, con- cerned that AIDS is placing another substantial economic burden on their members, recently surveyed their members as to the costs and characteristics of the AIDS patients they serve. Survey results indicate that the income from care of AIDS patients lags behind costs. While hospital costs averaged $635 per day for an AIDS patient in 1985, per diem revenues averaged only $482. In the South, where Medicaid programs are more limited, the gap is much wider. Another example is provided by the experience of the public Health and Hospitals Corporation (HHC) in New York City. Although it represents approximately only 20 percent of the acute care beds in New York City, the corporation estimates that its facilities provide inpatient acute care to more than 40 percent of all hospitalized AIDS patients in the city. Preliminary estimates indicate that the corporation’s average daily cost of treating AIDS patients is $800, while the average daily Medicaid reimbursement is approxima- tely $500, creating a $300 shortfall that must be covered by New York City tax revenues. In addition, the city must pick up the costs of treating those patients without insurance coverage. In California, the Hospital Council of Southern California estimates that the uncollectibles per AIDS patient are currently 3.4 times higher than uncollectibles on an average patient. Initiatives that some states have taken to help hospitals reduce their bad debt/charity care burden include: o Limiting the size of the uncompensated care population by estab- lishing or expanding medically indigent care programs, e.g. general assistance. Chapter 6 - Financing Care and Service Programs 6-19 o Providing direct subsidies to hospitals for indigent care, as in Min- nesota, lowa and Louisiana. o Creating medically indigent assistance funds, jointly financed by hospital and county assessments, to compensate hospitals for indigent care, as in South Carolina and Texas. o If operating, or moving towards, all-payer hospital rate setting systems, including a well-designed uncompensated care adjustment mechanism that recognizes these costs as allowable and spreads them fairly across all payers, as in Maryland and New Jersey. 5. State-Only Programs Several programs funded entirely from state revenues are being, or could be, used creatively to help fund services for persons with AIDS, ARC or HIV infection. General Assistance Thirty-four states have an indigent care program -- a program adminis- tered by the state, or jointly administered by the state and county, that provides some medical services to indigents who do not qualify for other public assistance programs, most notably Medicaid (see Exhibit 6-5). Most of the indigent care programs in these states are associated with a state or county general assistance program (known in some states as general relief or home relief). Nearly all of these states have integrated a medical services component into their general assistance programs, whereby a recipient of cash assistance from the general assistance program is automatically eligible for services under the medical component. (In a few states, a general assis- tance recipient must apply separately for medical assistance.) States with a high incidence of AIDS, such as California, New Jersey and New York, report that their general assistance-medical programs are filling an important gap for HIV-infected individuals who do not qualify for Medicaid, - but can qualify for a cash grant. The fact that many AIDS patients can qualify under a state’s medically indigent program may indicate that AIDS patients are becoming eligible as a result of the disease, after their other resources have been exhausted, or that they had few resources of their own when the illness began, as may be the case with many IV drug users. IDS STATES WITH INDIGENT EXHIBIT 6-5 - Mon TANA DANG WYOMING! t— f— —. : UTan COLOR, NEw MEXico CARE PROGRAMS (AS OF JUNE 1985) NORTH DAKOTA MINNESOTA J S MICHIGAN eT) : SOUTH DAKOTA WISCONSIN" r 7. W YORK coNN Ya a L “ IOWA hes ANIA NEBRASKA ~~. PENNSYLY oy |LLINO! =e TRDIANAL OHIO MD WE + MISSOURI W.VA Oo KANSAS eid ) 1A! FLENTUCKY VIRGIL LINA ) OKLAHOI = NAO ? MA - LLEXAS ARKANSAS TENNESSEE or A N, a LL I CAROLINA LABAMA, GEORGIA \ LOUISIANA \ \ PPI) —— — 1SSISS! | CoTomoA =m “3 Legend State-only medical assistance programs SOURCE: AIDS: A Public Health Challenge Intergovernmental Health Policy Project The George Washington University, 1987. (not part of Medicaid) 02-9 uR[qoIg dy) 3upueuly pue Jurdvurpy - 7 dWnNoA Chapter 6 - Financing Care and Service Programs 6-21 Services covered under the general assistance-medical program in New York are the same as those under the categorically needy component of Title XIX (i.e. hospital, laboratory, physician, skilled nursing, rural health clinic, family planning and screening); in New Jersey, they are similar. However, in California the health services reimbursed by the general assistance program and the limits placed on these services vary by county. The practical effect is that an HIV-infected individual who resides in California could be eligible for services which are less comprehensive, equal to or greater than those available under Medicaid, depending solely on his county of residence. Adding to the arbitrariness of this situation is the fact that as soon as AIDS is diagnosed in a general assistance recipient, he is automatically transferred to Medi-Cal. Services covered under the general assistance-medical program in New York are the same as those under the categorically needy component of Title XIX (i.e. hospital, laboratory, physician, skilled nursing, rural health clinic, family planning and screening); in New Jersey, they are similar. However, in California the health services reimbursed by the general assistance program and the limits placed on these services vary by county. The practical effect is that an HIV-infected individual who resides in California could be eligible for services which are less comprehensive, equal to or greater than those available under Medicaid, depending solely on his county of residence. Adding to the arbitrariness of this situation is the fact that as soon as AIDS is diagnosed in a general assistance recipient, he is automatically transferred to Medi-Cal. While precise figures are unavailable, it is known from anecdotal informa- tion that AIDS individuals are participating in state general assistance-medical programs and can be expected to continue to do so. Accordingly, these pro- grams can be modified to improve the care being received by HIV infected- individuals: o Services covered could be broadened to include services of particular importance to these persons, e.g.,, long-term care, adult day health care, non-emergency transportation, outpatient drug therapy. o States with multiple indigent care programs could make their programs complementary in terms of service coverage; e.g. in Michigan, the Resident County Hospitalization Program covers inpatient hospital care and the general assistance program covers ambulatory care. o States with multiple indigent care programs could make them com- plementary in terms of eligibility; e.g., in Illinois and Washington the major indigent care programs are tied to the general assistance program, whereby general assistance recipients automatically qualify for medical assistance. Catastrophic Health Insurance Public programs to aid families which face financial catastrophe due to unexpected, costly illnesses have been on the congressional agenda for more 6-22 Volume 2 - Managing and Financing the Problem than 10 years. This year, passage of some form of a national catastrophic illness health insurance plan as a voluntary program under Medicare seems likely. However, with the emphasis placed by congressional bills on linking participation to Medicare eligibility and restricting coverage to acute care services, it does not appear that such a program would significantly benefit HIV-infected individuals. At the state level, however, there is a catastrophic health insurance plan in Rhode Island which is paying, or could pay for, certain health expenses incurred by HIV-infected persons. The objective is to assure that health services are available to those residents who: 1) are confronted with major medical expenditures not covered by their health insurance plans; 2) have exhausted the benefits of their health insurance plans; or 3) do not qualify for third-party coverage of any type. State catastrophic insurance plans are designed to prevent people from substituting catastrophic coverage for standard insurance coverage. This is accomplished by setting high deductibles and copayments. This way, state plans pay only after standard insurance coverage is exhausted. Strict financial eligibility and cost-sharing requirements make clear that catastrophic programs are not aimed at the indigent population. However, because eligibility is neutral in regards to diagnosis, HIV-infected individuals may participate. Of the 624 persons served by the Rhode Island program in 1986, the state estimates at least two individuals were AIDS patients. Catastrophic health insurance plans funded by state general revenues currently offer only limited potential for dealing with the financing of treatment services for the HIV-infected population. Rhode Island has re- stricted its eligibility, and its program does not cover certain catastrophic expenses likely to be incurred by HIV-infected persons, e.g., nursing home care. In summary, there is a revived interest in catastrophic health insurance at both the federal and state levels. Bills to create state-financed programs were introduced in 10 legislatures, and several state AIDS task forces have suggested relying on catastrophic-type insurance plans to provide coverage. However, unless the limitations of the existing state program are acknow- ledged, this strategy will not be adequate to address the insurance gap facing AIDS patients. Population-Specific Interventions One way states can move effectively and quickly to address the special health needs of HIV-infected individuals is by targeting a specific sub-group of the population for selected intervention. Perhaps the best models for this type of initiative are offered by the experience of some states with high-risk maternity and child health care programs on the one hand, and treatment for IV drug users on the other hand. Chapter 6 - Financing Care and Service Programs 6-23 Florida, Maryland and Missouri have state-funded and administered prenatal assistance programs. These limited health insurance programs are designed to reduce infant mortality rates, improve birth outcomes and cut the costs associated with caring for intensely ill infants by encouraging high-risk women who face financial and other barriers to health care to seek timely prenatal care. At the same time, this kind of program is well suited to early diagnosis and treatment of children who are born to women with an IV drug habit and may be infected with AIDS. ‘This sort of program can fill the gap for young women whose income put them below the poverty level, but who remain ineligible for Medicaid. | It can also be designed, as in Missouri, to pay for services not covered by Medicaid for Medicaid recipients. Covered services generally include prenatal and postnatal care, inpatient hospital services for infants, and limited screening services for children. (State programs which target high-risk women and children can also be complemented by a recent federal health initiative. The Sixth Omnibus Budget Reconciliation Act of 1986 grants states the option of extending automatic Medicaid coverage to pregnant women, and infants and children up to age 5, whose family incomes are above current AFDC limits, but below the federal poverty line.) Turning to a different high-risk group, Massachusetts, New Jersey and New York estimate that the rate of increase in AIDS cases among IV drug users will be greater than any other risk group. IV drug users who contract AIDS represent a significant fiscal consequence to these states, as very few of them are covered by private health insurance and many are eligible for public assistance. New York has allocated state funds to establish storefront AIDS education centers within high drug-use communities in New York City. Mobile vans and street-worker teams will provide outreach services and conduct follow-up research on the effects of education and HIV testing on drug users. In addition to aggressive education campaigns, Massachusetts has slated state resources for care and social services unique to the needs of IV drug users. For instance, the state plans to establish a comprehensive ambulatory/inpatient care unit which can serve the special medical needs of drug abusers and the homeless. In New Jersey, the state finances an outreach program whereby an IV drug user receives a coupon for a free visit to a public health clinic for medical screening and counseling. Disease-Specific Interventions Another possible model for financing health services for HIV-infected persons is that of a disease-specific program. | Several states operate small disease-specific programs for people suffering from such maladies as renal disease, sickle cell anemia, cancer and hemophilia. As the range of services and the number of persons served can be quite restrictive, this model should be viewed as supplementary to, rather than substituting for, investment in a better health insurance program either under the auspices of general assistance or Title XIX. However, a disease-specific program could fill in some gaps in coverage for AIDS individuals. 6-24 Volume 2 - Managing and Financing the Problem One example is in Florida, where a disease-specific program model is being used to provide significant benefits to AIDS individuals. In a state such as Florida where no general assistance program exists, direct funding may be the only avenue possible until, and unless, the indigent care burden is addressed more comprehensively. In fiscal 1986-1987, some $4.2 million of Florida’s general revenues will go to Jackson Memorial Medical Center to develop an AIDS patient care net- work in Dade County. Jackson Memorial is expected to provide approximately $2 million in direct inpatient and outpatient services and to subcontract another $2 million for essential home health, hospice, transportation and psychosocial services. The legislature intends the Jackson Memorial AIDS network to serve as a model for other counties; toward that end, it has appropriated an additional $700,000 for AIDS patient care among the five other counties with the highest incidences of AIDS (See also chapter on Medical Care). In the Florida AIDS network, the state appropriation will pay for: 1) care for non-insured AIDS individuals; 2) certain relevant services not covered by Medicaid; and 3) the difference between reimbursement levels under Medicaid and Medicare for any Medicaid eligibles approved for a supplementary rate increase for physician and home health care services. One other disease-specific program initiative which holds promise for the care of HIV-infected persons is the special fee-for-service program instituted in Nebraska. To encourage private physicians to do HIV testing and counseling for indigent patients who reside in areas without AIDS treatment services, the state AIDS program reimbursement physicians with predetermined fees for counseling and blood drawing (See chapter on Screening/Testing). Pharmaceutical Programs Nine states have expanded drug coverage programs for their residents which are paid for largely by general revenues (Connecticut, Delaware, Illinois, Maine, Maryland, New Jersey, New York, Pennsylvania and Rhode Island). As presently designed, these programs can have only the most marginal impact on HIV-infected persons. This is because six of the nine restrict participation to those 65 and over and whose income is below a certain level. Two other states, Illinois and New Jersey, allow both the elderly and the disabled to participate. However, it appears likely that by the time a disabled individual qualifies for state disability in Illinois or New Jersey, he could become eligible for SSI/Medicaid instead. Only the pharmaceutical assistance program in Maryland lacks an age requirement. ’ Nevertheless, if existing eligibility restrictions were modified, in general pharmaceutical assistance programs could be designed which would significantly benefit the AIDS population. First of all, most of these programs will pay for a prescription drug once it is approved or declared effective by the FDA. Under this provision, Retrovir could be purchased for the treatment of AIDS. Secondly, except for Connecticut, no pharmaceutical assistance program has an enrollment fee and most of them have just a $1-$4 patient copayment. Finally, Chapter 6 - Financing Care and Service Programs 6-25 expanded drug coverage programs would be beneficial because outpatient prescription drugs are an optional benefit under Medicaid and, as such, there are important coverage gaps. While all but two states offer drugs to the categorically needy, only 35 state Medicaid programs provide a drug benefit for the medically needy as well. In addition, states can, and do, limit the number of drugs covered and the amount and scope of the benefit. 6. Federal Financing Social Security and Medicare Programs The Social Security Administration (SSA) provides two forms of assistance which are applicable to AIDS patients. The first, the Title II Disability Insurance Benefit program, is available to persons unable to work because of a disability that is expected to last at least 12 months or result in death. Only those AIDS patients who have paid into the Social Security fund are eligible. The second SSA program for which persons with AIDS may be eligible is Title XVI, Supplemental Security Income (SSI), a means-tested public assistance program for those who have little or no income or resources. (Under certain circumstances, individuals can be entitled to payment under both Title II and Title XVI.) Persons with AIDS who qualify for either Title II or Title XVI disability payments may also qualify for Medicare or Medicaid benefits, respectively, as discussed below (also see Exhibit 6-1 for a diagram of the SSI eligibility process). To qualify either for Medicare or Medicaid, persons with AIDS must meet special SSA medical criteria for disability in addition to economic and other standards unique to each program. AIDS meets, by definition, the medically related criteria established by SSA for disability. Persons with ARC may have a combination of symptoms and conditions which may also meet the medical and functional limitation standards for eligibility as a disabled person, but ARC per se is not defined by SSA as a disabling condition. AIDS patients have been qualifying routinely for both Titles II and XVI. From 1983 through January 1987, SSA has allowed 95 percent of claims due to AIDS. Under SSA’s "Presumptive Disability Determination" policy, AIDS individuals can more rapidly qualify for Title XVI SSI benefits. This presump- tive eligibility status lasts for three months, which should allow enough time for a formal, final disability determination to be made. At present, ARC patients cannot qualify for SSI on an expedited basis because the SSA has not adopted ARC as a category for presumptive eligibility purposes. Because the level of impairment of ARC individuals varies, SSA rcquires applicants to go through the regular medical and functional criteria evaluation process before a determination of disability can be made. There are several ways a state can help obtain prompt federal certifica- tion for AIDS patients under the SSI presumptive disability program: o Make state Medicaid and general assistance workers aware of the policy and the need to refer appropriate applicants to district SSA offices for SSI determination. 6-26 Volume 2 - Managing and Financing the Problem o Make available full information on the nature of the applicant’s condition to the eligibility worker. o If AIDS is not firmly diagnosed until after the onset of disability, make a retroactive claim for federal certification. Eligibility of AIDS patients for Medicare derives from an individual's eligibility for Title II disability insurance cash benefits. This eligibility, in turn, is generally based on a combination of work experience (quarters of coverage in employment), medical condition, and an inability to engage in substantial gainful activity. By law, Medicare eligibility does not begin until after a person has been entitled to cash disability insurance payments for 24 months; this is in addition to a five-month waiting period between the onset of disability and the first month of cash benefit payment. Persons with AIDS who are entitled to Medicare are eligible for the same range of services and benefits that are available to other segments of the Medicare eligible population. Benefits that would typically be utilized by an AIDS patient include inpatient care, hospice care, home health care, outpatient hospital care and physician’s services. Of special note, however, is that prescription drugs administered on an outpatient basis are not reimbursed by Medicare, except for drugs that are not self-administrable and incidental to a physician’s visit. Thus, new drug therapies under development could be excluded from Medicare coverage. HCFA estimates that only 1 percent of AIDS patients have expenses reimbursed through the Medicare program, and that only one-half of 1 percent of all direct medical care expenditures for AIDS patients are met through Medicare. This amounts to an estimated $10 million in fiscal 1987. Proposals pending before Congress would climinate the two-year waiting period for AIDS patients before Medicare eligibility can be established. As 70 percent of AIDS patients die within the first two years of diagnosis, very few can meet Medicare’s existing eligibility requirements. If Medicare eligibility were to be established with the first month of disability cash benefit eligi- bility, it may be possible for some states to shift a portion of their expendi- tures for Title II disability recipients who also fall under their general assistance-medical care programs to the federal level. (In addition, there could be some cost shifting from Medicaid to Medicare for those individuals eligible for both Title XVI SSI and Title II.) It should be emphasized that while Medicare can be used to cover some of the most expensive medical services associated with the treatment of AIDS, there are important program limitations and gaps in coverage. Currently, Medicare does not provide for chronic care in a nursing home; homemaker /per- sonal care services are not covered; and home health aide coverage is too limited in terms of hours and duration of service to assure the care necessary for AIDS patients. Broader federal support for long-term care services, especially in catastrophic illness situations such as AIDS, would ameliorate these problems. There is currently an initiative by HHS to add a voluntary Chapter 6 - Financing Care and Service Programs 6-27 catastrophic coverage provision to Medicare, but it would only protect against catastrophic bills for acute hospital care, not alternative or in-home services. Other Federal Programs \ a A $30 million federal emergency fund to pay for the drug Retrovir for low-income AIDS patients has been established in PHS. The "AIDS Drug Reimbursement Program" was provided by the 1987 Supplemental Appropriations Act, and may be used through fiscal 1988. Funds will be awarded to states in proportion to their share of all AIDS cases. States will administer the fund and set eligibility standards, but an individual must also meet the following general requirements: 1. Be diagnosed as having AIDS (in some cases, ARC patients may also qualify). 2. Be ineligible for Medicaid, or live in a state whose Medicaid program does not cover these drug costs. 3. Have no private health insurance that would pay for AIDS drugs. 4. Be able to meet the state’s income eligibility standard. There are also a few small federal programs which could help fund care for AIDS, ARC and other HIV-infected persons. They could fill gaps left by other, larger funding sources. The one which holds the most promise for meeting the needs of this \ special population is the Title V Maternal and Child Health (MCH) Block Grant, which includes funds for the crippled children services programs. The MCH block grant is a major component of federal efforts to reduce infant mortality by providing states with financial aid for a broad range of services for maintaining and improving the health of mothers and children, The potential exists for states to combine Title V and Title XIX (Medicaid) funding to pay for a coordinated services package for pediatric AIDS patients. For example, in New Jersey the MCH program provides pre- natal services and tries to screen women at risk of AIDS. After birth, the crippled children’s funding mechanism is used to pay for follow-up and intervention. Currently, crippled children’s funds are contributing to three medical centers which extend tertiary care services. Under an agreement with the New Jersey Department of Health, no child can be denied access, and pediatric AIDS cases are handled along with the others. In addition, New Jersey pays local agencies from MCH funds, along with county monies, to do case management for children with developmental disabilities including AIDS. Maryland and Florida are also using Title V crippled children’s funds to help cover the costs associated with pediatric AIDS cases. Any state whose crippled children program covers immuno-deficiencies can use the program to cover conditions like AIDS and HIV infection. 6-28 Volume 2 - Managing and Financing the Problem Officials in these states have shown that Title V MCH funds can be successfully used to supplement, rather than try to supplant, Medicaid funds. While Title XIX may be the largest, and in some cases the only, vehicle to pay ‘for acute care services, Title V can best be used to develop a continuum of care, including screening, case management and outpatient services. In | addition, by enlisting Title V in the treatment of AIDS, individuals could gain | access to a well-established, perhaps better, treatment network than the one traditionally available to Medicaid patients. HHS also funds the Alcohol, Drug Abuse and Mental Health Block Grants to the states, as well as a categorical grant program for Community Health Centers. These programs provide health services to needy and medically underserved populations. However, their ability to help AIDS and other HIV- infected persons is probably marginal at best because of their relatively small and stagnant funding levels, plus the fact that they must serve the public at large and are not designed to handle any specific disease category. 7. Private Financing Private Insurance Coverage: Availability of Coverage States may wish to consider current private health insurance practices as they affect HIV-infected individuals, as well as what legislative and/or regulatory initiatives may be necessary to ensure that such coverage is not unfairly denied (See chapter on Potential Discrimination). Representatives of major third party payers (i.e., the Health Insurance Association of America, the Blue Cross and Blue Shield Association, and the Group Health Association of America) uniformly maintain that to the best of their knowledge their members cover AIDS as they would any other illness -- that is, AIDS is not a factor in the availability of group health insurance coverage. However, the picture is radically different when it comes to the availability of individual insurance policies. A recent survey of HIAA member companies found that 100 percent of respondents rated applicants with AIDS as uninsurable; 99 percent rated those with ARC as uninsurable; and 91 percent rated those who are blood test positive as uninsurable. Preliminary, sketchy data indicate that small numbers of AIDS patients have been identified as enrollees of either traditional insurance or HMO type plans. One would expect that most had been enrolled in group policies prior to the onset of AIDS. To date, AIDS claims for private health and life insurance have been relatively modest.! Some private insurance companies are refusing insurance to individuals on the basis of their lifestyles or of predictive medical tests, and evidence indicates that insurers are using antibody tests at an accelerating pace. Indeed, the position of the private insurance industry is that insurers must be permitted to order their own AIDS-related tests, and to use the results obtained in the underwriting process. Industry critics contend that would be unfair, as it is estimated that only 20-30 percent of those testing positive will eventually develop AIDS. These groups want to restrict the use of the test, and of other marker tests expected to become available in the Chapter 6 - Financing Care and Service Programs 6-29 near future to identify those at risk of developing cancer, diabetes and other illnesses. It should be understood that those individuals who are denied access to private health insurance coverage may eventually become the financial responsibility of the state. State governments are increasingly finding themselves caught in the middle of this controversy. Most states either have or are considering some version of a law or regulation affecting how widely insurance companies can use tests for the AIDS antibody virus in deciding whether to grant insurance policies. A handful of states will probably set the patterns for future rules on AIDS antibody testing, either because of their aggressive leadership or because of the size of their AIDS populations. Following is the status of AIDS antibody testing in several states: o California: The legislature banned testing for AIDS antibodies for the purpose of determining insurability in April 1985. No change is expected. o Massachusetts: The Division on Insurance banned testing in December 1986. The insurance industry is challenging its authority to do so. o New York: The Superintendent of Insurance has recently adopted regulations that ban AIDS testing of health insurance applicants. The implementation of these regulations has been stayed pending the outcome of litigation by health and life insurance companies. o Washington, D.C.: The City Council banned testing in June 1986. In protest, three dozen companies stopped writing individual policies within the city. No change in the law is expected. o Wisconsin: The legislature allows testing under restricted circum- stances, e.g., only for individual health policies where the testing procedure has been approved by the Insurance Commissioner’s office. (For a further discussion of state laws banning private insurers from discrimi- nating against applicants with AIDS, see chapter on Potential Discrimination.) Continuation Policies for Private Insurers A number of states have regulations which cover the continuation and/or conversion of private health insurance policies. Such guidelines should help protect HIV-infected persons who may become unemployed or whose surviving spouse and family may be covered under the policy. Continuation allows insured individuals to maintain a current health insurance policy for a limited period of time; it is most effectively used when the loss of group eligibility is expected to be time limited. Conversion policies, on the other hand, are issued to terminated group members on an individual basis; it is expected that these policies will be in effect for longer periods of time. 6-30 Volume 2 - Managing and Financing the Problem As of July 1986, 34 states had conversion statutes that mandate insurers to offer policyholders who purchased their policy at their place of employment the option to purchase insurance with similar coverage (see Exhibit 6-6). At the same time, 31 states have adopted continuation legislation that generally provides that: 1) individuals have 31 days to exercise their continuation option; 2) continuation is not required if the individual is eligible for or covered by another insurance policy; and 3) persons electing to continue coverage must pay at the former group rate, and must also pay the employer’s share of the premium (see Exhibit 6-7). Continuation and conversion policies were also the subject of legislation contained in the federal Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA). This act requires employers with a health plan who have 20 or more employees to offer health insurance continuation policies for three years to widows, separated and divorced spouses, and children. Employers must also offer policies for 18 months to workers who lose coverage due to reduced work hours or are terminated. Persons eligible for a continuation policy must pay the entire premium cost, which cannot exceed 102 percent of the premiums of the group health policy. Following the mandated period for offering such coverage, the insurance company carrying the policy must offer the qualified beneficiary the option to convert coverage to an individual plan. Because there is no preemption of similar state laws in COBRA, there appear to be many unanswered questions as to how an employer with a health insurance plan can comply with both state and federal requirements. To ensure that persons with HIV infection are not unfairly denied individual insurance coverage or claims payments, states could: o Prohibit rate increases in liability insurance for health care pro- viders caring for HIV-infected persons. o Encourage those group plans which offer open enrollment to do so without restricting individual enrollment on the basis of pre-existing conditions. o Preclude denial of a covered service, using a pre-existing condition as a defense, if the individual has been covered for two or more years. o Prohibit the exclusion of newborns insured under group insurance policies from coverage on the basis of risk for AIDS or HIV infection. Insurance Risk Pools Health insurance risk pools have become a rather popular means of extending comprehensive health insurance to a small subset of the uninsured population, i.e., those denied coverage due to pre-existing medical conditions. Risk pools may receive more consideration as a potential financing instrument for persons with AIDS or ARC, who are generally considered "uninsurable" from a medical underwriting standpoint. Already enacted in 15 states, and Chapter 6 - Financing Care and Service Programs 6-31 proposed in 12 others during 1987, risk pools would be mandated in all states under proposed federal legislation (see Exhibit 6-8). Almost all existing pools have targeted persons with high health risks, or otherwise uninsurable people, who can still afford high premiums for conven- tional, major-medical style coverage. Enrollments have been low, even relative to the small eligible population, and medical spending has been high. Enroll- ment data from six of the fully operational state plans (Connecticut, Florida, Indiana, Minnesota, North Dakota, Wisconsin) indicate that in mid-1986 approximately 21,000 persons were participating in risk-pooling arrangements. AIDS and other HIV-infected persons should be eligible to participate in a risk pool -- provided they are in a high-risk category and can afford to purchase private health insurance. There are no statistics on how many persons with AIDS are cnrolled in these risk pools. Two states have singled out potential AIDS subscribers for preferential treatment. Minnesota and Oregon have placed AIDS individuals on a presumptive eligibility list, thereby enabling them to avoid the customary six- to 12-month waiting period. In addition, Wisconsin is the only state to operate a premium subsidy program; as of June 1986, nearly one-third of its enrollees were receiving a premium subsidy. Cost remains the biggest barrier to obtaining health insurance through risk-pools for persons with HIV infection, or for any other illness. Private health insurance is considerably more expensive for high-risk individuals than for standard risks. Annual premiums in the existing pools range from about $360 to as much as $7,650, while deductibles range from $150 to $2,000. In theory, premiums are to cover the majority of claims paid by the pool, but in practice they are insufficient. Experience in most cases indicates that the plans lose money over the course of a year. The losses are covered by assessing the participating insurers in proportion to their share of the state health insurance market. In most states, these pool assessments are subsidized through rebates on premium taxes and/or other state taxes. In summary, risk-pools could represent a useful, small step for states in reducing the uninsured population, including persons with AIDS and HIV infection. These plans, however, provide no comprehensive solution to the indigent care problem. States might develop better insurance pools if they addressed the following questions: o Should premium and deductible subsidies be made available to low- income potential policyholders? o Should conventional benefits be expanded to include services needed by persons with AIDS, e.g., home and community-based care? o Should the waiting period and prior rejection requirement be waived for persons with AIDS and ARC? AIDS STATES WITH HEALTH INSURANCE EXHIBIT 6-6 CONVERSION STATUTES oC — NEBRASKA *, MISSOURI W MExico ——. S. \GEORG'A \ \ ALASKA SOURCE: AIDS: A Public Health Intergovernmental Health Policy Project The George Washington University, 1987. €-9 wa[qoag ay) 3urdueulyy pue 3uISBUB\ - 7 dWN[OA IDS STATES WITH HEALTH INSURANCE EXHIBIT 6-7 CONTINUATION STATUTES HAWAII SOURCE: AIDS: A Public Health Challenge Intergovernmental Health Policy Project The George Washington University, 1987. sweidold 3I1AIS puke die) Jupueuly - 9 Jjdey) £€-9 IDS STATES WITH HEALTH INSURANCE EXHIBIT 6-8 RISK POOLS » - 11 1 "TT; rE —— J] RE NORTH pakoTa TXT Bea, 11 711717 MINNESOTA JN / / 1h tally / IY 1h / nn a le nl 1 et ty Rd lt 1 ra lasei lly) 11,111750UTH DAKOTA // ig ud, i = WYOMING Lil 4 1h / JT 11 / ol. 1! / 1! It wht ld lolol 1 Reb yl rs LLL] MISSOURI : 2 5 z i = J of = RE —%b JL 4, \A pW TUCKY F. no - \ . - . -= JN. CAROL! ——————. , A 3 ARKANSAS iby th! I \ / Jt 1! x » ow GL gms 5 CAROLINA, \ LABAMA. — EORGIA SS i ———— Ca ————— Sey 210 Pe — Ke ud A AuississIPP! —a——_I Legend Legislation Enacted SOURCE: AIDS: A Public Health Challenge Intergovernmental Health Policy Project — . Lo . The George Washington University, 1987. —— Proposed during 1987 Legislative Session re-9 J pue 3uiSBUB[ - 7 JWIN[OA ueu| wajqoad dy) su Chapter 6 - Financing Care and Service Programs 6-35 o Should high-risk individuals be subsidized by spreading the insurance liability among a much larger group, e.g. all underinsured and disabled persons? o Should participating insurers be required to maintain open enrollment policies to make insurance available regardless of health status? o Would health expenditures be better managed by policies designed to hold down costs, e.g., case-managed care, preferred providers arrangements? o Would it be more equitable, and help to reach a broader portion of the uninsured, if pool deficits were paid out of general revenues and not by assessments on insurers? What other possible funding sources exist? Employers? Medicaid? Mandated Benefits for Private Insurers Generally speaking, the existing range of private health insurance cannot meet the needs of persons with HIV infection. States may consider working with private insurers to expand coverage and benefits so as to help decrease the overall cost of care to HIV-infected persons. One example of state- mandated benefits involves insurance coverage for ambulatory cancer therapy. Currently, five states require that non-experimental cancer chemotherapy be made available on an ambulatory basis. They believe that inclusion of this therapy in health and disability insurance policies could save insurers and patients money in the long run by having the treatment done on an outpatient basis. [On the other hand, opponents of mandated benefit provisions in state laws believe the provisions may make health insurance less affordable.] States could require or negotiate with private insurers to make the following benefits available upon request: 0 Hospice care. 0 Case management and social work services. 0 Nursing home care. 0 Expanded home health services, including IV drug therapies. Hospice care is particularly suited to the treatment of AIDS and ARC individuals. Hospice programs exist in cach of the 50 states, serving more than 120,000 people a year. Eight states have mandated that health insurers offer an optional benefit covering hospice services: Alabama, Arizona, Colorado, Michigan, New York, Utah, Vermont and Washington. A survey being under- taken by the National Hospice Organization will indicate how its members are interacting with AIDS individuals. States should consider working with private insurers to cover one new treatment modality of particular importance to persons with AIDS -- Retrovir 6-36 Volume 2 - Managing and Financing the Problem drug therapy. Now that it has been approved for the treatment of AIDS by the FDA, pressure on private insurers to reimburse for Retrovir will be intense. The Blue Cross and Blue Shield Association will automatically approve Retrovir coverage once the FDA has, although its recommendation cannot be binding on individual member plans. Health Insurance Association of America member companies will likely cover Retrovir under existing contracts which contain prescription drug coverage, but only for the indications for which its use has been approved. Unfortunately, the question of whether private insurers would be more likely to provide health insurance coverage to persons using Retrovir therapy is unanswerable at present. Private Contributions of Community Organizations States should consider the potential contribution that the private volun- tary sector can make in the delivery and financing of AIDS services. In fact, since 1981 community efforts in San Francisco and New York City to respond to the AIDS epidemic have relied heavily on volunteers and the services of voluntary, nonprofit organizations. In both cities volunteer contributions have provided an important and otherwise missing dimension to patient care. At the same time, they have had an important financial impact on the local health care system by keeping AIDS patients out of the hospital. According to a survey by the U.S. Conference of Mayors, nearly 80 percent of services provided by community-based AIDS groups around the country were performed by volunteers. State support for community-based AIDS organizations is an efficient strategy because of their heavy reliance upon volunteer labor in these groups. Of course, a certain level of financial support is needed to develop administrative structures and for paid staff who can recruit, train and super- vise volunteers (See chapter on Support Services). Even with the development of new mechanisms to finance AIDS patient care, there are programs which will still depend upon volunteers and in-kind donations to extend the level and quality of services, especially those services that cannot be reimbursed by Medicaid, other third party payers, and specially targeted funds. In fact, one serious concern for states is that as HIV infection spreads out to larger, more heterogenous groups, it may be difficult to sustain the necessary level of volunteer services. There are other private avenues in addition to community volunteers that states could seek out in the struggle against AIDS. Private foundations can be an excellent source of local support. The Robert Wood Johnson Foundation has initiated a $17.2 million program to develop AIDS service demonstration projects. Four-year grants have been awarded to organizations nationwide which are expected to arrange for or provide a complete spectrum of health care for persons with AIDS. States may wish to keep abreast of any comparable initiatives by other foundations. Another example of a public/private funding strategy to finance AIDS care is provided by the Michigan Department of Health, which awarded a grant to the Greater Detroit Area Health Council to develop a business coalition, Chapter 6 - Financing Care and Service Programs 6-37 including health care providers, that would develop a case managed system of health care for persons with AIDS (This coalition is discussed in the chapter on Support Services). 8. Conclusions o Health care needs change as a person with AIDS becomes more debilitated. An AIDS patient may or may not require extensive periods of hospitalization. However, in many cases the absence of appropriate public health resources and the restrictive practices of private health insurers have limited the options to inpatient hospital care. Moreover, by the time many persons with AIDS require hospitalization, they have few, if any, financial resources left. o The current thrust for delivery systems is that of AIDS case management and service integration models which tend to distribute the financial burden of care among public and private institutions. For example, San Francisco has an integrated system of health care delivery, subsidized by local government, that includes outpatient clinics, home health and hospice care, housing and other social support services. Such a system allows patients to be discharged from the hospital earlier than in other communities where such services are not as readily available. Thus, the investment of public funds in community-based services not only promotes better quality care for AIDS patients, but also reduces the economic impact of the crisis. o Each state’s response to AIDS should reflect the social, demographic and economic characteristics of the local AIDS population, as well as the existing health care delivery structure. While learning from the experiences of other localities may be useful, efforts to merely adopt a modcl used clsewhere may prove counterproductive. The relatively diverse patient populations in New York City and San Francisco illustrate that the AIDS epidemic may manifest itself differently in different locales, and that diverse responses based on local condi- tions are needed. 7. MEDICAL CARE ISSUES How should appropriate policies and programs be developed to accommodate HIV-infected patients when scientific understanding about the disease is constantly changing? 1. Introduction People with AIDS have medical needs that parallel those of patients suffering from other chronic illnesses. They require: consistent on-going care; self-management and monitoring to prevent rapid escalation of infections; and immediate treatment to prevent debilitation when infections occur. In many states, most of the medical care for AIDS patients is provided in hospital settings. Because AIDS patients require a significant level of medical manage- ment, cities and states with a larger number of AIDS cases have begun to coordinate medical care and related services. A few states -- New York, California, Michigan, Massachusetts and Florida -- are developing "comprehensive care" systems that link acute hospital care with outpatient clinics, home health care and case management services. Though much of the treatment and many procedures required by patients could be provided in outpatient settings, many lower incidence areas have not developed outpatient and home care resources for AIDS patients. This involves training health care workers and adapting existing services to meet the specialized needs of AIDS patients. Perhaps the most significant feature in planning AIDS care -- the escalating cost to consumers, institutions and government -- has sparked intense interest in developing innovative and cost-cutting treatment and health maintenance measures for HIV-infected patients, especially in high incidence areas. No longer can support services be viewed as separate from a patient’s primary medical care. One of the most significant contributions made by community AIDS organizations and AIDS service providers has been in clarifying the critical role of ancillary services and support services, including home care, outpatient and mental health services, required by AIDS patients. This approach has affected the way higher incidence cities and states have begun to concep- tualize long-term care planning. It has also affected the way in which moderate and lower incidence areas are considering how to best convey and concentrate resources while planning for an eventual increase in patient care needs. A central consideration for state governments in planning to meet these medical needs is the rapid advance in treatment and scientific knowledge. This includes: 1) Increased knowledge of physicians in diagnosing AIDS and AIDS- related conditions and in treating infections (though the need continues for more extensive physician education in all medical specialties). 7-2 Volume 2 - Managing and Financing the Problem 2) More sophisticated diagnostic measures which allow for earlier diagnosis and intervention. 3) Advances in the use and application of drugs and experimental protocols to treat infections. 4) Introduction of anti-virals, such as Retrovir (formerly AZT), into every-day use for greater numbers of AIDS patients. 5) Initial progress in development of an AIDS vaccine. While the availability of a vaccine will change the way states currently manage the epidemic, this intervention is still years away, requiring long- term planning and continued reliance on prevention strategies. As a result of the rapid advances in both knowledge and availability of medical care, HIV-infected individuals will undoubtedly live longer and require more varied levels of care. These changes demand flexibility in developing policies and of coordinated systems of care. 2. Policy Considerations in Medical Care Settings Infection Control Procedures and Workplace Guidelines Infection control guidelines for managing AIDS patients were first introduced by the Centers for Disease Control (CDC) in November 1982. Since that time, CDC has released additional guidelines for managing special popula- tions and handling workplace situations. In general, infection control policies have been adopted not only to protect health care workers and others who have contact with AIDS patients, but also to protect immuno-compromised patients themselves, who may be at increased risk of acquiring various infections, due to their severely impaired immune systems. The most recent CDC guidelines, based on initial precautions issued for clinical and laboratory staff in 1982, and issued on August 21, re-emphasize the need for workers to adopt universal precautions: "Since medical history and examination cannot reliably identify all patients infected with HIV or other blood-borne pathogens, blood and body-fluid precautions should be consistently used for all patients. This approach, previously recommended by CDC and referred to as ‘universal blood and body- fluid precautions’ or ‘universal precautions,” should be used in the care of all paticnts, especially including those in emergency-care settings in which the risk of blood exposure is increased and the infection status of the patient is usually unknown." A key issue for policymakers and health care administrators has been to determine what is the state’s role and which policies should be implemented to protect workers, clients and patients from potential infection. This has become more of an issue as staff and administrators feared that insufficient information was available to make decisions on how best to safeguard them, or that rapidly changing information would alter infection control practices. Increased staff training and greater access to written and audio visual Chapter 7 - Medical Care Issues 7-3 educational materials, coupled with opportunities to openly discuss their fears and concerns, has helped reduce staff resistance and fear over the last two years. While most health care settings have adopted CDC’s infection control guidelines, lack of standardization of these measures and the failure of some workers to comply with infection control recommendations has led to confusion and anxiety among some workers and patients. Many hospitals and health service facilities have developed specialized policies on worker need to know. Many of these policies have incorporated CDC infection control guidelines, adding specific recommendations on: which workers would be informed of a patient’s health status; how potential staff exposure to HIV-infected material would be managed; how emergency services or disposal of a body would be handled, etc. This process has been more complicated since CDC’s AIDS management and infection control guidelines have been released over a period of several years, and agencies and workers have had to face evolving issues before standardized government guidelines were made available. A number of states, including Texas, Oregon, Pennsylvania, Florida and Idaho, among others, officially adopted CDC guidelines for use in all settings through their state AIDS task forces. Others, such as California, Louisiana, Pennsylvania and New York, amended the basic CDC recommendations and dis- tributed statewide infection control advisories to all hospitals or specialized health settings. Ohio developed clinical management guidelines and published them in state medical journals, while New Hampshire is currently drafting them for use throughout the state. Some states, such as Indiana, prepared special- ized training programs on infection control and uses telecommunication systems to broadcast the data throughout the state. AIDS in the Workplace At particular issue has been the need to determine workplace guidelines for workers diagnosed with AIDS and ARC in both health care and non-health care settings. Until CDC guidelines on AIDS in the workplace were released in November 1985, and prior to any legal rulings on maintaining HIV-infected and diagnosed individuals in work settings, the burden of decision-making rested entirely upon individual administrators to decide who could work and under what conditions. Given the lack of hard data on transmission of HIV in 1985, many administrators were confronted with making policy decisions based on emotional and not factual arguments. Institutional policies were more conservative, with the concern that rapidly changing AIDS information would alter earlier held beliefs on transmission and infection control. Nevertheless, CDC’s basic infection control guidelines for patient contact and managing infected blood and body fluids have not changed since 1982. But because of increasing concerns voiced by health care workers and providers that they are at some risk for infection (though data continue to support that the risk is less than 1 percent, since only 8 workers are reported to have been infected with HIV through direct patient contact, such as ncedle sticks and direct blood contact to skin lesions), and particularly because of reports that providers are not 7-4 Volume 2 - Managing and Financing the Problem routinely following infection control precautions for HIV, CDC has issued its universal precautions and revised its guidelines (see above). Other suggestions to move HIV-infected health care workers from direct patient contact to clerical or administrative settings do not reflect CDC’s general workplace guidelines. These guidelines state that food service, health and personal service workers with AIDS need not be restricted from current assignments unless they have another infection or illness for which such restriction is warranted. The CDC guidelines, which are based on studies of transmission of AIDS among patients and caregivers, including family members, state that the nonsexual, person-to-person contact that generally occurs between most health care workers and their patients or clients does not pose a risk of transmitting the virus. Nevertheless, the controversy over maintaining HIV-infected and diag- nosed health care workers in positions with direct patient contact continues. Individual policies may differ in various health and service delivery settings. The recent Supreme Court ruling extending the protection of the federal Rehabilitation Act to individuals with contagious diseases, including those with AIDS, will provide some additional guidance in developing workplace policies. More specialized infection control guidelines, including those governing invasive procedures (such as surgery, emergency medical care and dentistry), have been issued and updated by CDC. Other states, including Massachusetts and Maryland, have adopted infection control policies that are based on CDC guidelines, governing a variety of situations. Worker Right to Know In addressing the workers’ right to know the health status of patients, clients and co-workers as it might affect their own well being, most facilities follow CDC recommendations, telling workers to take "blood and body fluid" precautions with certain patients (see Chapter on Confidentiality). A few health care scttings, such as some residential drug and alcohol treatment centers and institutional facilities for the mentally ill or mentally retarded, have begun to standardize these precautions, treating all patients and clients as if they were potentially infectious. This is more consistent with CDC’s updated guidelines. In most other settings, where non-health care workers do not handle body fluids, no special infection control practices are required. In these settings, it is difficult to justify a co-worker’s right to know that a colleague is HIV-infected or has AIDS, based on scientific evidence that AIDS is not transmitted by casual contact. In terms of medical care, discussion has been raised about the need for emergency medical technicians, paramedics and morticians to be informed of the patient’s HIV antibody status before rendering care. This is because: 1) Emergency measures or crisis situations do not always allow workers to practice infection control precautions. Chapter 7 - Medical Care Issues 7-5 2) These workers do not generally follow specialized infection control guidelines unless there is a specific medical reason to do so. For these reasons, at least 12 states have passed legislation requiring worker notification of a patient’s health status under specific conditions (See also chapter on Surveillance). States like Florida, California, Illinois, Maryland and Rhode Island have laws requiring that emergency medical technicians, ambulance drivers, paramedics, lifeguards, firefighters and peace officers exposed to reportable or infectious diseases be notified of their potential exposure. Rhode Island, Florida and Maryland require that those individuals be notified within 48 hours of direct contact. Florida also requires that, in addition to rescue personnel, anyone who comes into contact with individuals who have a confirmed diagnosis of an infectious disease be notified. All states mandate strict confidentiality of patients. Illinois forbids use of the patient’s name, and Rhode Island protects both patients’ and workers’ confidentiality. Specific guidelines governing emergency medical technician response have been issued by several state and local jurisdictions, including Wisconsin and Hennepin County, Minnesota. These include use of ventilator devices, pocket masks and rubber gloves when conducting rescue services. Wisconsin states that rescue activities should not be delayed or refused by rescue workers. Five states (California, Georgia, Mississippi, Tennessce and Indiana) require notification of infectious or reportable disease status, including AIDS, to funeral directors, embalmers and individuals who receive a body for disposition. Confidentiality is required in California, Georgia and Michigan, while Georgia requires written notification from either a physician or family member. Michigan further mandates that funeral directors or their authorized agents cannot refuse to provide services as a result of having received this notification. New York State recently mandated that funeral directors must provide non-discriminatory services to patients who die from AIDS. Organ and Tissue Transplants Since HIV antibody testing can delay life-saving procedures, a central policy question becomes what measures should be taken to assure virus-free tissues and organs for transplants. For example, heart and livers which are removed for transplantation must be transplanted within five to seven hours in order to be usable, yet the HIV antibody test requires a minimum of 6 hours (or two working days for a repeat positive) for completion. If a Western Blot confirmatory test were to be administered with the most rapid turnaround time, it would still take one full working day to confirm an ELISA’s positive result for tissue or organs. Consequently, given current testing technology, it may not be possible to receive ELISA and Western Blot test results within the required period of time to perform certain transplant procedures. CDC guide- lines governing organ procurement and transplantation recommend that all organs and tissues, used in donor or transplantation procedures, be pre- screened for HIV antibodies. These recommendations are followed whenever possible to prevent transplantation of HIV-infected organs or tissue, with the understanding that physicians may be required to make an emergency decision whether to initiate transplant proceedings without full access to test results. 7-6 Volume 2 - Managing and Financing the Problem A number of states addressing this issue have acknowledged the time limitations of test technology, with an awareness that new tests may soon become available to help solve the problem. The issue of provider liability is clearly a concern. (To date, an extremely small number of transplants of infected organs has taken place.) Based on the Task Force recommendations, the Maryland Organ Procure- ment Center has developed special notification procedures for family members who have agreed to donate organs of a loved one and may need to be told that the donation was denied because the individual was infected with HIV. These guidelines state that physicians and other trained medical personnel are obligated to inform family members of the positive test results and should also notify other individuals known to be at significant risk of exposure. They have further recommended that confidentiality be maintained and that proper counseling and support services be made available to the family members. Two other states -- Delaware and Maine -- have passed legislation requiring testing of body parts and tissue prior to transplant or use. Although some data exist to demonstrate that HIV can be transmitted through artificial insemination from sperm donor to recipient, only Idaho has passed legislation requiring that all donated semen be subjected to "reasonable means" to detect whether or not the donor is antibody positive. Hemodialysis In June 1986, CDC issued guidelines concerning the provision of dialysis treatment to HIV-infected patients, which were updated in August 1987. Prior to the release of these guidelines, a number of hemodialysis patients with AIDS or HIV infection had great difficulty locating dialysis services or were discriminated against when they attempted to procure services. Initially, both AIDS patients and their dialyzers were isolated since health care workers were concerned that HIV might be transmitted through a dialysis machine to other patients. However, no transmission of HIV has been reported in a dialysis-center environment, and the possibility, according to CDC, of such transmission appears extremely unlikely when universal blood and body-fluid precautions are followed. CDC guidelines state that HIV-infected patients need not be isolated from other patients and that hemodialysis centers that have dialyzer re-use programs may include HIV-infected patients in those programs if the dialyzer is issued to a specific patient. However, the recommendations also state that individual dialyzers must never be used on more than one patient and that germicides used for disinfection and sterilization of devices in the dialysis center are cffective against HIV. The issue of mass screening of all hemodialysis patients has been raised. Some states, such as Maryland, recommend against mass screening, stating that decisions to test hemodialysis patients be made on a case-by-case basis. In making this recommendation, these task forces have considered that: 1) HIV is not spread through routine use of dialysis devices. Chapter 7 - Medical Care Issues el 2) Hemodialysis patients appear to have a higher rate of false positive test results, probably due to the frequency of exposure to H9-cell associated antigens during blood transfusions common among those patients. 3. Medical Care for Special Populations Prenatal Care As AIDS continues to spread and as more infants are born infected from HIV-infected mothers, more states are beginning to consider how to interrupt pre-natal transmission and what specialized services should be made available for prenatal and pediatric care. How these services will be funded, organized and delivered is a great concern in high incidence areas, in areas with a high rate of IV drug use, and in areas with a high seroprevalence rate among prostitutes. Clearly, efforts should be made to identify high-risk mothers and to provide proper prenatal counseling so that babies are not born who will suffer needlessly and die within a short period of time. It is critical to provide services for high-risk mothers in family planning and prenatal clinics, drug treatment centers and other specialized programs to prevent and interrupt transmission of the virus, particularly in consideration of reports from health care workers that high-risk mothers (especially those who are IV drug users) frequently give birth to two or more infected infants. However, not all infants born to high-risk mothers are infected and it is difficult to determine which infants are actually infected for at least six months after birth, since the infant will reflect the mother’s antibody status for at least this period of time, until their own immune system begins func- tioning. (Issues of antibody testing of mothers and infants are dealt with more thoroughly in the chapter on Screening and Testing.) Infants With AIDS Unlike adults, infants with AIDS are more difficult to diagnose because they less frequently manifest opportunistic infections. Many infants develop recurrent bacterial infections, exhibit failure to thrive, neurologic abnormalities and developmental delays. It is believed that a significant number of infants are misdiagnosed because they do not fit a clear clinical picture for AIDS. In fact, the manifestations of HIV infection in very young children are sufficient- ly difficult to warrant consideration of a special definition for pediatric AIDS by the CDC. The average life span for newborns or infants with AIDS appears to be about one year following diagnosis. Dr. Arye Rubenstein of Einstein College of Medicine in New York has also reported that AIDS dementia occurs in 95 percent of children who survive five or more years. Infants with AIDS require on-going services, including home care, day care, hospitalization, out-patient treatment and support services for mothers and caregivers. These multiple medical and social needs of entire HIV-infected families (especially where parents are IV drug users) complicate care. 7-8 Volume 2 - Managing and Financing the Problem In general, the difficulties of caring for terminal patients are exacerbated when caring for children with AIDS. The majority of pediatric cases come from low-income families who lack the financial and social resources needed to provide even minimal care. When one or both parents use drugs, the problems are magnified because resources are frequently limited and undependable. These parents use health care services sporadically and do not comply well with medical treatment. Their children with AIDS frequently remain in the hospital for long periods because families are unable to care for them or because they have been abandoned. In many communities, the family support services necessary for home care are largely unavailable. Foster homes are difficult to find because of the fear that AIDS can be transmitted through casual household contact. As a result, costs of caring for pediatric cases are increased because the hospital must serve as the home and primary caretaker for children who could presumably be cared for in the community. (Support services for infants, families and day care programs are discussed in the chapter on Support Services). During the earlier years of the AIDS epidemic, hospitals in New York and New Jersey developed more experience in working with pediatric AIDS cases since more HIV-infected children were born in these states. Eighty percent of the infants who develop AIDS are infected prenatally. Approximately 70 percent of one or both parents are IV drug users. Since many of these parents are incapable of providing adequate home care, their infants remained in the hospitals, placing increased burdens on resources and staff. Gradually, specialized medical programs for infants and children evolved in New Jersey, Florida and New York -- states with the highest incidence of children with AIDS. The Children’s Hospital AIDS Program located in Newark, New Jersey, has treated AIDS infants since 1982. Some children have been referred from New York City and from surrounding states with limited pediatric experience. The program, which includes medical and outpatient care, family services, and an attempt to provide home health services, has relied entirely upon maximizing existing hospital resources, and volunteer care from staff. No special state funding has been available. A Robert Wood Johnson Foundation grant will provide $160,000 annually for four years to fund clinical and support staff administered through the Department of Health. Children’s Medical Services in Tallahassee, Florida, a program adminis- tered within the Department of Health and Rehabilitative Services, has provided on-going medical care to low-income infants and children with congenital or chronic handicapping conditions, including AIDS and ARC. Specialized funds are made available through state, federal and private funding sources to patients whose families lack other resources or have already exhausted them. As in New Jersey and New York, many infants in Florida remain in the hospital, since foster home placement is extremely difficult to arrange. The Comprehensive Family Care Center located at Einstein Medical Center in New York has become the nation’s largest pediatric AIDS care center. The program, offering pediatric day care, medical care and family care in several units at Einstein, also utilizes services from health care providers at other Chapter 7 - Medical Care Issues 7-9 municipal hospitals that allow patients and family members access to a broad range of services and care. (This program is described in greater detail under the section marked Systems of Care, located at the end of this chapter.) States with lower pediatric caseloads are just beginning to plan programs for pediatric AIDS. Massachusetts has recently opened a pediatric AIDS residence for up to 10 beds, through the Department of Health and Hospitals on a floor of Boston City Hospital. The program, which will serve infants and children with AIDS and ARC, is currently considering the addition of a day care unit. The University of Maryland hospital system, which has a special prenatal program for IV drug using women, is also developing a pediatric AIDS program. Strategies to Address Pediatric Medical Care Needs From the previous examples, it is evident that the care problems and service needs for pediatric AIDS are just beginning to be addressed, yet the need for such programs cannot be overstated since it is estimated that by 1991 there will be more than six times the number of infants and children with AIDS, with a larger portion of these cases residing in areas where few services currently exist or are only now being considered. In April 1987, the Surgeon General convened a two-day meeting in Philadelphia, bringing together clinicians, researchers and health policy experts to address issues in pediatric AIDS care. Recommendations from this session are forthcoming. For states, the implications are great. If services are not available, the state will need to play a role in developing them. Alternatively, the state will probably -- directly or indirectly -- become involved in the financing of pediatric AIDS services (sce chapter on Financing). In terms of strategies, two main trends appear to be developing for states and medical care providers. The first involves establishing a special AIDS unit and program as part of a children’s hospital -- such as that in New Jersey. Often such centers are located in urban areas, which are more likely to have a higher incidence rate. Generally, they are already established, sometimes as regional centers for treating more serious pediatric diseases. However, to establish such a program for children with AIDS takes the commitment of a particular facility, local health providers and the surrounding communities. The state may become involved by providing special grant funds to establish the programs, amending any regulatory policy or licensing restrictions that may monitor program development and possibly expanding state reimbursement programs. If properly planned, such a pediatric AIDS unit can become a key element in a comprehensive system of care for pediatric AIDS patients. However, this strategy may take a relatively greater political commitment in terms of getting the support of community organizations, providers and leaders. A second strategy available to states is to expand the eligibility criteria of existing publicly funded pediatric medical care and reimbursement programs to include care for children with AIDS and HIV infection, as was done in 7-10 Volume 2 - Managing and Financing the Problem Florida and Maryland. Such a strategy may not produce a comprehensive system of care immediately, but it contributes to a first step -- perhaps an interim measure -- by providing evaluation, diagnosis and follow-up care for a considerably larger number of children with AIDS. While programs like Medicaid have income criteria which may limit access to care for some pediatric AIDS cases, most children are likely to come from families (IV drug using or low income minority), which have a greater chance of meeting these criteria. Other programs, like those for crippled children, which do not carry the same income restrictions, will merely need to change the definition of medical eligibility for children with AIDS to qualify. Changing program eligibility criteria may prove to be an easier strategy for expanding care to children with AIDS, since it requires less of a commitment of financial and community resources. Care for Intravenous Drug Users The increase in cases of AIDS and reported seroprevalence rates among IV drug users has significant policy and program implications for public officials for a number of reasons (See also chapter on Screening and Testing): o Transmission to the general population. IV users have the capacity to spread the AIDS virus more comprehensively than any other single group since they can spread the virus through: - sexual contact with both heterosexual and homosexual partners. To date, IV drug users are the primary source of heterosexual transmission in the United States. Additionally, many IV users are female and male prostitutes. - sharing needles and drug paraphernalia. - maternal transmission to offspring. Most of the male and female parents of HIV infected babies are IV users and many HIV infected mothers who are IV users have more than one child. o Hard to reach population. IV users are traditionally a hard-to- access population for education and prevention services. Once in treatment programs, they may fail to follow up on services or they may not have a stabile residence that would allow workers to follow up. o Implications for minorities. IV drug users with AIDS are dispropor- tionately black and Hispanic. Thus, culturally sensitive and linguis- tically appropriate services are required. However, many jurisdic- tions have failed to initiate culturally sensitive drug treatment programs or to employ staff from those cultures to work directly with patients. o Increased educational needs. Many existing drug treatment programs have been unable to provide essential training for staff working with Chapter 7 - Medical Care Issues 7-11 high risk patients. Also, specialized training for all health care workers in identifying and working with IV drug users and other chemically dependent clients and patients is generally lacking, so that many IV users are not identified as potentially high risk patients at other points of entry into the health care system. o Strain on existing programs. Existing drug treatment programs in many areas are already overburdened and are unable to provide services for the existing level of need due to lack of funding and community support for new neighborhood centers. AIDS education and prevention programs are increasing the population of IV drug users seeking treatment. Programs are becoming increasingly overburdened and backlogged by this growing patient demand. o Increasing demand for support services. Other support services required by AIDS patients, such as housing, long term care and home care, are gencrally unavailable for IV drug users with AIDS and ARC. Without follow-up, the chances are slim for a patient to successfully stay off drugs while getting appropriate care. o Medically challenging population. IV drug users who are HIV positive pose a more serious and complicated medical challenge for health care providers. Because of their poor general health and nutritional status, medical complications of AIDS are often greater, and they frequently require intensive medical care. To complicate their need for care, many IV users wait until infections are sig- nificantly progressed before they seek treatment. As a group, IV users with AIDS exhibit more opportunistic infections than their gay male counterparts which can often be more cxpensive to treat. In addition to AIDS and ARC, other health complications have been noted among HIV-infected IV users. These include AIDS dementia as well as significant increases in other infections such as tuberculosis and pneumonias other than Pneumocystis, as noted among HIV- infected IV users in New York City. All of these complications require medical care. o Public pays for medical care. In most instances, IV drug users will qualify for -- either categorically or financially -- public assistance programs. With their increased need for medical care, the growing number of IV drug users will place additional strains on both public financing mechanisms and the health care system. o Need for comprehensive care. The lack of coordinated comprehen- sive care systems in most areas has made it more difficult for discharge planning and health maintenance between hospitalizations. As a result, many IV drug users with AIDS and ARC have remained hospitalized long after acute medical care is needed. This, in turn, contributes to escalating costs. Since the overall cost of treating an AIDS patient can range from between $40,000 to $150,000 per patient, as opposed to an approximate $3,000 7-12 Volume 2 - Managing and Financing the Problem per patient for outpatient methadone drug treatment, a number of states and local jurisdictions are implementing or planning specialized drug treatment programs and prevention activities. California, New Jersey, New York and the District of Columbia have initiated specialized street outreach programs targeted to IV drug users and prostitutes, with culturally appropriate street workers and educational materials. New Jersey utilizes mobile vans in inner city areas that provide on-site medical evaluations and outreach for at-risk individuals. Both New York and California are making drug treatment programs more accessible to IV users. In New York, for example, patients with AIDS on methadone maintenance waiting lists are given priority for admission. The California Department of Drug and Alcohol Programs has altered admission criteria to allow more IV drug users to qualify. This includes changing the eligibility requirements from a two-year history of prior drug use and two prior treatment failures to one year of IV drug use and no prior treatment failures, as well as reducing the waiting period for readmission after discharge. Another feature in California’s recommendations is to combine education and testing with treatment programs. This would enable AIDS coordinators at cach facility to work with staff and clients to provide education and counseling and to encourage HIV testing. The department has also developed a mechanism that would allow existing methadone programs to temporarily exceed their licensed capacity to treat high-risk individuals who might otherwise be placed on waiting lists. The formula developed would allow programs to increase treatment slots for patients according to the number of available staff. To make their treatment programs more accessible to IV users, New Jersey has developed a coupon redemption pilot program that will enable addicts to enter treatment programs for free. Budget cuts and service funds at state and federal levels reduced funding for drug treatment programs in the carly 1980s. At that time methadone programs began to charge $50 per admission for detoxification. Unfortunately, cutbacks in funding coincided with the increase in HIV transmission among IV drug users. As a result of treatment charges, new admissions to treatment programs dropped. To encourage addicts to enter treatment, the New Jersey Department of Health introduced a detoxification coupon, in cooperation with private, non- profit methadone programs, that would enable the addict to receive free treatment. In addition to providing basic AIDS prevention information, the coupon gathers socio-demographic information in several check-off blocks on the front of the form. Eligibility standards for the program require that an addict be a current IV user and not have been a participant in a drug treatment program during the last year. AIDS education is a required com- ponent of the methadone detoxification program and participants are given a pre- and post-test questionnaire on their level of AIDS knowledge. According to one report, of the first 1,000 coupons distributed, primarily through street outreach workers, more than 80 percent have been used. Chapter 7 - Medical Care Issues 7-13 Given the high number of IV users with AIDS in New Jersey, the state has introduced another program -- the Post-Hospital Residential Program -- to provide follow-up care, home care support and housing to drug-addicted, homeless AIDS and ARC patients. Because housing is a critical problem among IV users with AIDS, on-going patient care and maintenance is in jeopardy without appropriate placements. Through this program, homeless and indigent IV users with AIDS and ARC are discharged from hospitals to selected residential drug treatment programs. All staff are fully trained to work with AIDS patients and the facilities are reimbursed at a higher rate ($65.75 per day) than for the standard drug treatment care rate ($43.84 per day) since AIDS patients require higher levels of medical, nursing, mental health and social services. This payment schedule substantially reduced the cost of inpatient care at $400 per day. Significant interaction between discharging hospitals, the New Jersey State AIDS Community Service Office and residential treatment facilities allow for more consistent patient management. Through the program, all levels of patient care needs are met including medical monitoring, mental health services, transportation to medical and support service programs, on-going drug treat- ment and continuation of methadone maintenance. Residential treatment facilities attempt to place patients according to their specialized needs; for example, one facility is Spanish-speaking. The health care needs of IV users may be more difficult to meet in areas that have a lower incidence of IV users with AIDS. In these areas, outreach programs may not have been developed; specialized AIDS training may not be available to health care workers; and the problem of continuity of care for a group that traditionally has been both underserved and reluctant to use ser- vices remains an obvious barrier to addressing health care and service needs. In an effort to reach all IV drug users throughout the country at risk for AIDS, the National Association of State Alcohol and Drug Abuse Directors (NASADAD) has identified several areas of need for targeting this population. In addition to undertaking research to assess the extent to which the AIDS virus has spread among IV users in different parts of the country and making recommendations to initiate voluntary testing programs with appropriate counseling, NASADAD has recommended the following for all single state agencies, as well as agencies collaborating with other state and local agencies: o To establish training programs on AIDS for physicians and health care providers who work with IV users and for agencies and organizations that come into contact with IV users. Training should enable clinical staff to work with patients who are dying, as well as those who are concerned about infection, with patients suffering from AIDS dementia and with bereaved families and other individuals who comprise the patients’ support system. o To review the intake and diagnostic procedures of drug treatment programs and other health care delivery systems to enhance the ability of programs to identify IV users with symptoms of AIDS and ARC. 7-14 Volume 2 - Managing and Financing the Problem 4. To document service needs of IV users for both drug treatment and other specialized services so that appropriate programs can be put in place. These needs should be addressed to federal and state agencies. To initiate strategies that will enable treatment programs to retain IV drug users in treatment for longer periods, for example, 180-day detoxification programs. To support those aftercare programs which have proven to be effective in helping drug dependent individuals stay drug free during re-entry. To improve linkages between local service providers at the local level. Traditional boundaries that have separated treatment pro- grams and health care services must be removed so that IV users who are infected with HIV can receive the comprehensive services and care they need. To provide outreach services to IV users not in treatment as well as to other substance abusers (including sniffers, alcoholics and cocaine users) before they use IV drugs. These services should include the sexual partners of drug users. To target all high-risk groups, including gay IV users and prostitutes, and to provide funds for programs for women. Providing Medical Care Services In general, medical care services are organized to provide varying levels of patient care. These levels are determined by the patient’s needs. Since AIDS is a chronic illness, characterized by intermittent or continued bouts with opportunistic infections, patients may require a range of medical care services. Health care facilities are broadly categorized as follows: o General Acute Care Facility. An acute care hospital provides a broad range of 24-hour inpatient care with full medical staff and support available. Basic services include: medical, nursing, surgical, anesthesia, laboratory, radiology, pharmacy and dictary. Skilled Nursing Facilities. A skilled nursing facility provides con- tinuous nursing care and supportive care to patients who may not be acutely ill but who primarily require rehabilitation or skilled nursing care on an inpatient basis. Intermediate Care Facility. Patients in an intermediate care facility do not require continuous skilled nursing care. They may be ambulatory or non-ambulatory, and require some level of monitoring and on-going assistance with daily activities and maintenance. Their need for skilled nursing care is intermittent. Chapter 7 - Medical Care Issues 7-15 o Community Care Facilities. A range of facilities are available to provide non-medical residential care in residential facilities, board and care homes and domiciliary or group homes. These facilities provide housing, meals and supervision or assistance with daily activities such as eating, bathing, dressing, toileting and taking medications. o Community Care. Other medical, psychological, rehabilitation, social, nutritional and educational services are provided in child or adult day care facilities, enabling patients to maintain a household while providing them services in a group setting. o Home Health Care. These services, which include skilled nursing care, chore aide services, personal care services and social work services, such as counseling, enable patients to remain in their home while receiving on-going medical monitoring and support services to meet daily living needs. Although AIDS and ARC patients have clearly defined medical and health care needs, they have been more difficult to serve than other chronic care patients for the following reasons: o Staff in many areas have not received sufficient training in working with AIDS patients, and in confronting their own anxiety and fear. o Patients require a higher level of skilled care than other patients for emotional support and other nursing needs. (The Greater New York Hospital Association estimates that AIDS patients require two to three times the amount of nursing care and psychological support.) o Patients require medical monitoring to prevent recurrent hospitaliza- tions and to monitor outpatient treatment and care. This is especially true of patients suffering from AIDS dementia, those living alone and of pediatric patients living with families unable to properly care for them (especially those who have parents who may be ill themselves or who may be practicing IV drug users). o Patients require varied levels of care intermittently, which may or may not be available. At times, infections may escalate quickly and require immediate hospitalization. While acute care facilities in most urban areas have had cxperience with AIDS patients and continue to serve them, extended care and home care services may not be readily available. This is due to insufficient staff training and fear of contagion that has prompted some facilities and services to refuse to work with AIDS patients, as well as difficulties with reimburse- ment. For example, Medicaid rates are lower than actual patient care costs and Medicaid and some insurance policies may not cover personal care or care in community settings. 7-16 Volume 2 - Managing and Financing the Problem o Inappropriate and insufficient housing is a barrier to providing ongoing home care and other home services. Many AIDS patients become homeless because they can no longer afford their homes or apartments or because they can no longer care for themselves at home. Without an identified home setting, home care programs cannot provide patient care. This includes home hospice services for dying patients in hospice programs without an inpatient facility. In order for these patients to receive home hospice care, the program must identify a primary caretaker (relative, friend, neighbor, etc.) who will remain in the home during off hours to share responsibility and to help coordinate care. o In general, many health care workers and discharge planners are unaware of available community resources, including extended care facilities, home health programs and service programs that will provide services for AIDS patients. As a result, patients are often not discharged as soon as they might be. For example, the Los Angeles AIDS Resource Center and County Plan for 1986-1990 has estimated conservatively that up to 30 percent of all AIDS patients currently hospitalized could be discharged if adequate facilities for intermediate skilled home care were identified. Without appropriate residential and alternative care settings, patients can linger in acute carc settings for days or even months. This "warehousing" of patients, which occurs with both adults and perhaps even more frequently with infants with AIDS, drives up the cost of care while it denies patients access to a less restrictive environment. Special- ized care settings for AIDS patients, initially appearing as dedicated AIDS units in acute care settings, are gaining greater attention from health care planners. Providing Acute Care (Hospital Care) Acute care hospitals still remain the central treatment site for most AIDS patients. Many receive their initial diagnosis in the hospital and are generally readmitted intermittently for invasive diagnostic tests and follow-up treatment of recurrent infections. Patients will utilize more inpatient services in areas that have not developed outpatient AIDS resources, including clinics, ambulato- ry services and home care services that can offer intravenous infusion therapy (dispensing, for example, antibiotics and nutritional supplements at home). As cases continue to increase, especially in major urban areas, hospitals- especially public facilities -- will be hard pressed to meet the growing need. This will affect overall bed capacity and the utilization of many hospital services in metropolitan areas. This is already becoming a concern in New York City, where more than 1,000 patients with AIDS and AIDS-related con- ditions are hospitalized on any given day (with approximately three-quarters placed in private hospitals and one-quarter in municipal hospitals). In New York City alone, the number of hospitalized AIDS patients has increased by one-third during the last 12 months, taking up beds that were not estimated to be needed for AIDS patients until 1990. This has contributed, in part, to longer waits at many hospitals for elective surgery and medical admissions. Chapter 7 - Medical Care Issues 7-17 Overall bed utilization in the city will be affected. With an anticipated 40,000 cases predicted by the end of 1991 for New York City, this will mean that some 9,000 cases (or the total number of diagnosed AIDS cases reported in New York City since 1981) will be diagnosed in 1991 alone, requiring extensive medical care and patient services. Faced with the projected surge in the number of AIDS patients needing hospital care, state health authorities recently agreed to reduce the number of acute hospital beds in traditionally overbedded New York City by a much smaller amount than had been previously recommended (i.e., by 2,000 instead of 5,000). Another response has been the development of designated care centers or discrete AIDS units in hospitals or in regions where services can more easily be provided and coordinated for AIDS patients. The first AIDS unit opened at San Francisco General Hospital in 1983 with 12 beds, expanding to 20 beds in 1986. This unit offered a primary model for coordinated patient care, pro- viding community support services, such as the Shanti project that offers home care, emotional support and housing, with space on the unit to initiate services and begin discharge planning as soon as patients were admitted. Unit staff were recruited exclusively to work with AIDS-related patients, eliminating staff compliance problems and offering highly sensitive patient care. Similar AIDS units evolved in several other cities, including a 10-bed unit at The Johns Hopkins Hospital in Baltimore, a small pediatric unit at Boston City Hospital and a 5-10 bed chronic acute unit at Shattuck Hospital in Boston, several small units in Los Angeles County private hospitals (including Hollywood Community Hospital, West Covina Community Hospital, Midway Hospital, Sherman Oaks Community Hospital, Special Care Unit and Century City Hospital). Like San Francisco General, Hollywood Community Hospital offers hospital-based community care services for case management, legal assistance and support services, through a social work position, split-funded with AIDS Project/Los Angeles. An entire AIDS oriented hospital, the Institute for Immunological Disorders, opened in 1986 through an affiliation between the University of Texas system and American Medical International, with space for 150 patients. The first state-wide model was developed by the New York AIDS Institute. Its plan ultimately includes 32 designated centers to care for AIDS patients, situated in strategic areas throughout the state. Each AIDS care center is regulated by standards adopted by the New York State Hospital Review and Planning Council. These include administration by an "appropriately credentialed" physician, knowledgeable in all aspects of AIDS care; multi-disciplinary case management services coordinated for each patient; and specialized AIDS inservice training for all levels of staff with regular quality assurance reviews to monitor each hospital’s performance. The AIDS Management Intervention System (AIMS), designed to manage each AIDS care center, will collect aggregate data on the changing needs of patients in acute care and community settings, allowing for the continued evolution of services, with access to each community’s diverse resources. Additionally, the system will monitor service delivery in each facility and provide extensive training for all staff in case management. Eight care 7-18 Volume 2 - Managing and Financing the Problem centers are currently operating in the greater New York metropolitan area, and a 15-bed unit was recently approved at Albany Medical Center. New York’s designated care centers allow for higher reimbursement for AIDS patients covered by Medicaid. Based on a continuum of care, designated centers include case management services for each patient, emphasizing home and community based care. Patients also have access to screening, diagnostic testing, inpatient care and treatment, psychological and counseling services, 24-hour emergency care with outpatient clinics, home care, nursing home and hospice care. St. Clare’s Hospital, in New York City, recently allocating 25 beds for prisoners with AIDS, has become the largest AIDS treatment center in the country. Several considerations have emerged in deciding whether a designated AIDS unit is preferable as opposed to placing or continuing to place patients throughout the hospital or sporadically in hospitals throughout the region. These are discussed in Exhibit 7-1. In general, several features have contributed to the success and efficiency of specialized AIDS units. These include: o Utilization of a multidisciplinary team to integrate services (e.g., medical and psychological). o Capacity to coordinate care including planned access to critical community resources, such as housing, home care, outpatient care and mental health resources. o Capacity to offer highly trained, well updated staff as medical information rapidly changes. o Infection control precautions are practiced routinely so as not to confuse patients and staff, and so reducing the fear and sense of isolation of many AIDS patients. Chapter 7 - Medical Care Issues 7-19 EXHIBIT 7-1 Advantages and Disadvantages in Developing a Designated AIDS Unit Designated Unit Easier to coordinate care. All services including administration and discharge can be planned and provided in one area. Patients can socialize with one another and provide companion- ship. Allows concentration of staff who are comfortable working with AIDS patients in one unit. Hospital does not have to provide comprehensive on-going training for other staff or to deal with non-compliant or resistant staff. ; Encourages team building among staff and developing a support system to avoid burn out and process negative feelings and death of patients. Allows for better patient care, concentration of resources and medical skills in low incidence areas. Allows more opportunities for research especially in areas with concentrated subpopulation of patients. Outpatient Clinics Patients throughout Hospital May not have enough patients to fill beds in a single unit or specialized area. Concentration of patients may lead to a "ghetto" feeling among patients and increase stigma. Allows all hospital staff to gain expertise in working with AIDS patients and to defuse fear and anxiety among staff. Easier to provide for patients specialized medical needs in other units (e.g., cardiac, oncology, pulmonary, etc). Allows more facilities to gain expertise in treating AIDS patients. Allows patients, particularly in low incidence areas, where cases may tend to be more spread out, to stay closer to family and friends while they are hospitalized. Does not require extensive outreach efforts to build community and provider support for a designated unit. Outpatient AIDS clinics that can provide on-going treatment, access to experimental protocols, nutritional therapy and invasive diagnostic tests, have reduced hospitalization needs for many patients. Trained multi-disciplinary teams in these clinics can meet a variety of medical and psychosocial needs, while referring patients to appropriate community and home care resources. San Francisco General opened the first AIDS outpatient clinic in 1981. In 1984 7-20 Volume 2 - Managing and Financing the Problem a second clinic opened at the University of California in San Francisco. Additional clinics in Los Angeles County, at USC Hospital, at Jackson Memorial Hospital in Miami, in New York City, and at Fairmont Hospital in Alameda County, California, have begun to provide ancillary medical care that both reduces cost of hospitalization and enhances the quality of life for patients by maintaining their independence and mobility whenever possible. Dental Care In most states, dental care for AIDS patients remains an essentially neglected arca due to the insufficient training of dentists and the often lower priority status of dental care as opposed to patients’ basic health care needs. Dental services are provided through the San Francisco General AIDS/Oncology Clinic in collaboration with the hospital’s dental clinic. New Jersey recently- provided $178,000 in funding for an AIDS dental clinic as a joint effort between St. Michael's Medical Center and the New Jersey Dental School. In addition to providing dental care, education and research, the clinic will offer training to dentists throughout the state. A privately funded AIDS dental clinic will open shortly at the Whitman-Walker Clinic in Washington, D.C. Another collaborative project in West Hollywood, between the R.E. Greene Dental Treatment Center, volunteer dentists and dental assistants coordinated through the AIDS Project/Los Angeles and the Los Angeles County Department of Health Services, provides dental treatment while maintaining an on-going waiting list of patients. Additionally, the Northwest Health Center in Ft. Lauderdale, Fla., recently opened a non-profit dental clinic for AIDS patients. In reviewing the existing need for appropriate dental care for AIDS patients, a Los Angeles City Attorney announced in April 1986 that his office had received over 80 complaints on denial of dental services that could prove sufficient for litigation. Oral infections and severe periodontal problems of AIDS patients compound their need for routine dental care. The need for comprehensive training to dental professionals on AIDS transmission and for improved referral networks within each community must be considered in developing any overall health care strategy for the state. States may also need to start developing a referral list of dentists, who will care for HIV infected patients. Nursing Homes (Skilled and Intermediate Care Facilities) Though nursing homes can provide more cost effective services for AIDS patients, few have been willing to accept AIDS or ARC patients on a routine basis. Nursing home administrators have pointed out four main concerns in considering AIDS admissions (See also chapter on Potential Discrimination). 1) Medicaid reimbursement will not cover the costs of patient care. 2) Administrators are concerned that staff may refuse to work with patients and/or walk off the job. 3) Other residents and their families may be reluctant to share facilities with AIDS patients. Chapter 7 - Medical Care Issues 7-21 4) Administrators claim that nursing homes, geared towards the needs and interests of geriatric patients, are not a suitable placement for young AIDS patients. As a result of these concerns, placement of AIDS patients in nursing homes remains sporadic, even in high incidence areas such as New York and California. Because of limited placement options, patients have often been forced to remain in acute care settings until their health improved sufficiently to care for themselves or until they died. State health department officials and nursing home administrators have worked together in several states to address placement concerns so that nursing homes would accept AIDS patients. In November 1985, Maryland became the first state to officially encourage nursing homes to accept AIDS patients with the adoption of a waiver permit- ting nursing homes (which had prior restrictions on accepting patients with infectious diseases) to admit patients with AIDS. The Maryland Department of Health and Mental Hygiene implemented a procedure for interested facilities to follow. If nursing homes agree to accept AIDS patients, the department will provide: 1) A review of the facilities’ prior history of compliance with state regulations and infection control guidelines. 2) Comprehensive staff training provided by health department person- nel for all levels of staff over a period of several weeks. 3) Licensing and certification with regular monitoring. 4) Additional in-service programs for continuing staff education. Because Maryland’s state Medicaid plan reimburses according to the care a patient actually needs as opposed to a flat daily rate, the issue of revenue loss has not been a concern. Placement at Seton Hall Manor in Baltimore, the first facility to routinely admit AIDS patients, has gone smoothly. A similar approach was adopted in Kentucky where the administrator of a Catholic facility, the Nazareth Nursing Home in Louisville, approached the state health department to change state guidelines allowing them to accept patients with a "contagious disease." Stipulations for admission also included inservice training and implementation of appropriate policies and procedures. Extensive staff training included all residents and staff as well as the families of both other residents and staff. Worker grievances were addressed with a series of measures ranging from training, to counseling, to warnings for noncompliance, to disciplinary actions followed by termination with good recommendations if workers refused to provide care for AIDS patients. Though the state will not currently reimburse at a higher rate for AIDS patients, the administrator is documenting care costs and will testify on actual cost ratios before the legislature later this year. 7-22 Volume 2 - Managing and Financing the Problem Health officials in Wisconsin submitted a waiver application to provide special rates for serving AIDS patients in nursing homes and in subacute care units. In an effort to encourage long-term care providers to accept AIDS patients, they proposed allowing patients with AIDS and ARC to be reimbursed at an increased rate. The higher rate, which pays for special supplies and care, would be available to facilities that receive prior authorization by applying to the Department of Health before the patient is admitted. At this time only the subacute care waiver has been approved by HCFA. Intensive training is also provided through Wisconsin’s Bureau of Com- munity Health and Prevention, which has developed a comprehensive training program for skilled nursing facilities that includes a program development manual (Information and Recommendations for Preventing the Transmission of HTLV-II in the Nursing Home Setting). To date, facilities in urban centers such as Milwaukee are still reluctant to admit AIDS patients, while nursing homes in rural arcas are able to serve AIDS patients with training and support from the department of health. The willingness of rural nursing homes to admit AIDS patients was based on the acceptance and immersion of their families in their local communities; the response of administrators and staff to inservice training; and the receptivity of other patients and their families to training. A number of patients admitted to these facilities had decided to return home to live with their families. Though no specialized facility is available for AIDS patients currently, a five-bed nursing home is in early planning stages. Florida has approved a Medicaid supplement for AIDS patients who require heavy care or special equipment such as ventilators. This allows Florida nursing homes, such as the Bear Creek Nursing Center in Hudson that accepts AIDS patients, to receive reimbursement for the higher costs of actual patient care. Unlike other facilities cited, pre-admission staff training was not a feature of Bear Creek’s initial AIDS admission. Resulting disruption among staff and other patients has spurred the addition of pre-admission training and periodic inservice training to supplement routine staff programming. Florida's legislature has further supported the development of nursing home care for AIDS patients by appropriating $2.5 million for fiscal 1987-88 to the Dade County Nursing Home. Extended care for AIDS patients in New York City has been provided to a limited extent through Mother Teresa’s facility in Greenwich Village. Bailey House, a residential care facility, also located in the Village, provides housing to AIDS patients, enabling them to receive home care and support services. The Village Nursing Home, a 200 bed-skilled facility, is currently searching for an available facility or suitable site to build a nursing home specifically for AIDS patients with an adult day care component. The Village Nursing Home is a member of the New York City AIDS Service Delivery Consortium that recently received funding from the Robert Wood Johnson AIDS Health Services Program. Like New York, California has identified the long-standing need for skilled nursing and extended care services for AIDS patients, while experiencing limited success in encouraging facilities to admit patients. In Chapter 7 - Medical Care Issues 7-23 1986 the state issued a request for proposals to implement a skilled nursing facility pilot project but received only one response from a qualifying facility. A survey of Los Angeles area intermediate and skilled nursing facilities (138 responded) revealed that although 51 facilities had received a total of 241 requests for placement, only 3 facilities had actually admitted AIDS patients. Additionally, no area facility provides advertised care on a regular basis for AIDS and ARC patients. While a few scattered nursing homes throughout the state have admitted AIDS patients, interest has been minimal among ad- ministrators in developing additional services. A notable exception is Beverly Enterprises, a California-based nursing home chain that has declared its intent to establish an AIDS skilled nursing facility in an existing nursing home in metropolitan Los Angeles. The proposed project would provide 33 beds of subacute care (specialized or "super" skilled nursing care), combining varied levels of care, including subacute, skilled nursing and residential care, in a three-floor configuration. The state of California will subsidize costs to make up the difference in actual charges. Completion of the project is expected in three years. The New Jersey Department of Health has similarly struggled with a heavy caseload of AIDS patients and an absence of available nursing home beds. The Department is currently working to negotiate a higher Medicaid reimbursement rate, anticipating a higher nced for services and care, and is planning to propose Medicaid waivers to extend the income limit. This would make the Medicaid program more accessible to medically needy patients who lack the financial resources for medical care but whose income disqualifies them for Medicaid. The state is also negotiating with a 300-bed nursing home to reserve an entire floor, 60 beds, for AIDS patients. Training has been provided to staff, but plans do not currently include informing other residents and their families, to protect patient confidentiality. Several other states have attempted to stimulate interest from nursing homes in accepting AIDS patients. These include Massachusetts, where the state has developed Infection Control Guidelines for Long Term Care Facilities and provided staff training in collaboration with the Massachusetts Association of Nursing Homes, and Indiana, where the state AIDS Activity Office has proposed a waiver to certain state infection control guidelines. Essentially, the proposal would allow nursing homes in good licensure standing to apply to the State Health Officer for a verbal writ to admit AIDS patients prior to completing the formal paperwork with required infection control guidelines. Because so few nursing homes have been receptive to admitting AIDS patients, in most instances states have had to take a leadership role in encouraging nursing homes to admit AIDS patients and in providing incentives. As caseloads continue to increase, more states will need to work with local nursing home administrators to develop appropriate placements. To date, states that have responded to the need for skilled nursing care for AIDS patients have adopted two or more of the following strategies: 7-24 Volume 2 - Managing and Financing the Problem 1) Adapting state nursing home regulations to approve acceptance of AIDS patients with appropriate infection control procedures. 2) Providing staff training and on-going education. 3) Negotiating a higher reimbursement rate for nursing home care for AIDS and ARC patients. Higher Medicaid reimbursement rates (See also chapter on Financing), if they can be negotiated, should be based on an actual assessment of patient care needs, rather than the assumption that all AIDS patients will need extra care and resources. The emergence of Medicaid payment systems for nursing homes that adjust reimbursement according to an assessment of patient needs offer useful guidelines. The objective of these "case-mix" systems, as they are called, is to provide adequate reimbursement to nursing homes so that they will not only accept patients who need more care but also provide more intense service to them. Eleven states currently employ some type of case-mix nursing home reimbursement system under Medicaid. Some states, such as Illinois and Maryland, base payment on the nature of the patient’s impairment, regardless of whether the homes actually spend resources on the patients. Other states, such as West Virginia and Ohio, increase the ceilings on payable nursing costs as the level of the patient’s impairment increases, but the payments increase only if the home actually incurs higher costs. John Holahan of the Urban Institute observed of these two strategies: "The first approach seems to provide strong incentives for increasing access for patients who need intensive care because profits can be increased by admitting more seriously ill patients. Under the second approach, homes can merely avoid financial losses from caring for more impaired, and thus more costly, patients." Even with these tools to provide more appropriate Medicaid rates, states encounter great resistance on the part of nursing homes to accept more Medicaid patients, with or without AIDS. Nursing homes seek better paying private-pay patients, and in those states with a shortage of nursing home beds, AIDS patients supported by Medicaid not only encounter competition for these beds with private-pay patients but with the growing number of elderly patients needing nursing home care. Given these mounting pressures, some states may decide it is more efficient to spend resources on developing community-based alternatives to nursing homes. Facilities that have been successful in overcoming fears of adverse public reactions, in engaging staff support and in providing appropriate patient care have developed several key strategies in introducing AIDS patients into their facilities. Key Strategies in Placing AIDS Patients in Nursing Homes 1) Acknowledge that anxiety and misunderstanding exist about AIDS among staff and within the community. Chapter 7 - Medical Care Issues 7-25 2) Develop policies for managing HIV-infected patients and for dealing with issues raised by treatment of them. 3) Develop and provide aggressive education and intervention programs for all levels of staff, including medical staff and volunteers. Provide education programs for families of staff and volunteers as well. Develop similar programs for the families of other patients in the nursing home that can be readily implemented when their fears and concerns are expressed. 4) Identify an interdisciplinary team of nursing home personnel who are readily available to answer medical questions on AIDS, to advise about appropriate practices and to provide support to personnel. 5) Give staff an opportunity to participate in discussion of patient management before AIDS patients are admitted. Include staff from all departments, including housckeeping and dietetics, as well as labor union representatives. 6) Designate and train a knowledgeable and authoritative representative to serve as a spokesperson to media and the public. Coordinate all media communications through that individual. Home-Based Medical Care Increasingly, specialized home care medical services are evolving to meet the maintenance needs of AIDS patients. Several programs offer infusion therapy at home, allowing patients to be discharged sooner and to stay out of hospitals for longer periods of time. Services can include intravenous hydra- tion to replace lost fluids during scvere bouts of diarrhea, or intravenous treatment with experimental protocols or specialized antibiotics to fight opportunistic infections. With home treatment, for example, patients with pneumocystis, a severe and debilitating pneumonia, can be stabilized in acute settings and discharged after a few days for IV treatment with pentamidine or other potent antibiotics for a 2-3 week home treatment course. Home care infusion services can also include specialized tube feeding for patients with nutritional deficits or intravenous morphine for pain management of dying patients. Caremark, a national home intravenous therapy provider, has offered similar services to 1,200 AIDS patients since 1983. In addition to IV therapy, Caremark offers case management services and training for home health aides, having developed the first self study guide for AIDS home and hospice care, in conjunction with the Visiting Nurses Association of San Francisco and the Robert Wood Johnson Foundation. Though estimates are currently unavailable for these services, the cost of home-based care is reported by providers to be significantly lower than acute care, suggesting that home IV therapy can offer substantial savings in patient management. Paying for home-care has its own problems as many insurers fail to reimburse for such services or place strict limitations upon such payments. 7-26 Volume 2 - Managing and Financing the Problem While Medicare allows states to reimburse for home care as an optional service, less than half the states do so. Drug Therapies Several questions have emerged for policymakers with regard to drug therapy for HIV infection. Chief among them are: What drug therapies are becoming available and who can benefit from them? How can or should states ensure that patients who can benefit from new drug therapies have access to them? Who will set priorities for the states? Although an effective, widely available vaccine for AIDS is probably years away, reports on drug trcatment at the Third International Conference on AIDS in May 1987 indicate that significant progress has been made toward developing a variety of drug treatments to help infected individuals. To date, much of the scientific information accumulated on AIDS has been in the area of virology, in understanding how HIV interacts with various cells in the body and how it can ultimately cripple the immune system. New information gained about the genetic structure and path of the virus has suggested additional points at which the virus can be interrupted by either drug therapy or eventually a vaccine. Essentially, current drug therapies for AIDS have centered around two strategies: preventing the virus from reproducing itself in the body and rebuilding the damaged immune system. Significantly greater success has been achieved using the first strategy through anti-viral drugs such as Retrovir (formerly known as AZT) or chemically related drugs such as dideoxycytidine (DDC) that can block the virus in the body. Other drugs, such as interferon and tumor necrosis factor, attack the virus by stimulating the immune system to attack the invader. Since rebuilding a damaged immune system will probably require new technology, the second strategy has been approached more by testing drugs that might boost the immune system, such as GMCSF or IL-2, hormones that stimulate the production of some white blood cells. Many researchers have suggested that initiating anti-viral treatment early before the virus has had a chance to cause damage to the immune system and while the body is in better condition to withstand the side effects of exper- imental drugs can significantly improve an individual’s response to treatment. Testing is beginning on asymptomatic infected patients with drugs that have appeared effective in patients with greater progression of disease. An impor- tant scientific advance for monitoring the progression of HIV infection in individuals without symptoms -- the identification of certain virus proteins such as p24 which increase in the blood of an infected person as HIV infection progresses -- can help physicians determine when best to begin aggressive drug therapy. Though drug therapy appears much more promising as an intervention than vaccine at this time, the National Academy of Sciences/Institute of Medicine panel has suggested that "the development of acceptably safe and effective anti-viral agents for the treatment of HIV infection is likely to be a long, hard job with no certainty of success." Chapter 7 - Medical Care Issues 7-27 The panel has identified three key features for an ideal AIDS drug: o It must be conveniently administered, preferably orally. o It must be sufficiently nontoxic to be used for prolonged periods, perhaps for a lifetime. o It must be able to cross the blood brain barrier because HIV may infect the nervous system early in the disease process. Issues raised in the release and distribution of Retrovir (AZT) -- the first anti-viral drug for AIDS approved by the FDA -- are important considerations for policymakers. Access to information, a critical factor in treating patients with an extremely limited life span, has been a concern in the absence of a comprehensive provider cducation campaign. Prior to the approval of AZT, for example, it was more difficult for patients and providers to have ready access to information on promising drugs. The publicity surrounding AZT and the need to provide accurate, up-to-date information prompted the drug manu- facturer to introduce a hotline number for physicians to call to apply for the drug on behalf of their patients. An information packet was sent to physi- cians upon request and orders were expedited (See also Insight at end of this chapter). Other concerns arose over: government delays in testing experimental drugs; the introduction of clinical trials for promising experimental drugs; the design of clinical drug trials and the coordination of these efforts. The National Academy of Sciences/Institute of Medicine panel commented: "the committee believes that the quickest, most efficient and least-biased way to identify and validate the efficacy and safety of treatments for HIV infection is by means of randomized clinical trials in which control groups receive a placebo. When an effective and acceptably safe agent is found, newer candidate drugs should be compared against it." The panel recommended that coordination of efforts be ensured between the industrial, governmental and academic research communities, stating: "It is essential that mechanisms for the efficient testing of candidate drugs be established. Efforts should be undertaken now to ensure that organizational and financial support will be sufficient to permit the expeditious evaluation of promising therapeutic agents for HIV infection." Because of the potentially high cost of drug therapy, particularly anti- virals (AZT costs $10,000 per patient per year), states will also have to consider the financial impact of drug therapies (See also chapter on Finan- cing). States may also play a role in: developing communication systems where AIDS patients and their physicians receive updated information as new 7-28 Volume 2 - Managing and Financing the Problem drugs are developed; and developing bulk purchasing agreements, as New York has done, to reduce drug costs for patients. Vaccine Development Plans for the first human trials in the U.S. of an experimental AIDS vaccine were recently announced by federal officials. The new study will be conducted with 81 volunteers who will be treated at the clinical center of the National Institutes of Health in Maryland. Small-scale human tests of other AIDS vaccines have already begun in France and Zaire. However, development of an AIDS vaccine will be extremely difficult because: o The variability of the AIDS virus (it has the capacity to mutate much more quickly than the flu virus, and 10 or more strains of virus have already been identified in different geographic regions). o The virus may introduce itself to the body inside host cells at the point of infection rather than as a free virus, making it difficult for antibodies to find the virus. o It will be difficult to use a live vaccine due to the tendency of live vaccines to mutate. o Major questions will be raised in determining how effective a given vaccine may be since the virus takes so long to develop and must be studied for a long time. 0 Much of the expertise in vaccine development is in the industrial sector, but substantial development costs, coupled with a limited potential for financial return and concern over liability in vaccine distribution, do not encourage investigation. Considering all these factors, the National Academy of Sciences/Institute of Medicine panel has recommended a collaborative effort with strong leader- ship to develop a broad vaccine development program. Systems of Care In developing a system of care for AIDS services, policymakers must consider two key questions. What processes and programs should be developed to provide cost-effective continuity of care for HIV-infected patients? How can successful programs be identified and organized to provide appropriate care for individuals in low, moderate and high incidence areas? In reviewing the complex medical, social and emotional needs of AIDS patients, several states and jurisdictions are developing overall strategies for integrated care. Systems would include: medical care and outpatient services, home care, mental health services and extensive support services, including transportation and recreation. Some systems, such as those developed in San Chapter 7 - Medical Care Issues 7-29 Francisco, and the rapidly growing AIDS care centers in New York, are providing models for states to consider. Two examples include the comprehen- sive care plan commissioned by the Michigan Department of Health, in collaboration with the Greater Detroit Area Health Council, and California’s proposed AIDS Regional Treatment Centers, outlined in the state’s 1987 AIDS Prevention and Treatment Plan. Other model systems, such as Einstein Medical Center’s Comprehensive Family Care Center, grew in response to direct patient need, representing an cvolutionary model that has emerged over the past six years. As a result, it is not housed in one central area and is funded by a variety of sources, in particular private grants. Given the divergent nature of each communities’ caseload, resources, and capacity to respond, these approaches can serve as useful models for develop- ing a system of care. Michigan’s Comprehensive Care Plan In 1985 the Greater Detroit Area Health Council, under a grant from the Michigan Department of Health, appointed a diverse Task Force on AIDS to develop a comprehensive plan to assist southeastern Michigan in addressing long-term management and care issues. The Task Force established committees to review key areas, including: managing patient care; organizing and delivering health services; financing; community education; and educating high-risk groups. To avoid duplicating efforts, the Task Force assigned responsibility for the last three areas to outside groups with special expertise in finance and AIDS education. The committee on managing, organizing and delivery of patient care, which had administrative and clinical representatives from major area hospitals, was told to develop: 1. A single, coordinated regional program for caring for patients in the acute and chronic states of AIDS. This would include outpatient, ambulatory and home health services at either single or multiple designated sites. 2. A consensus regarding protocols for proper management of AIDS patients at all stages of the disease, targeting medical care, nursing care, infection control, psycho-social and related matters. The committee identified critical elements for a coordinated, cost- effective regional AIDS program, including: acute care services, laboratory and radiology services and support services (such as home care, nutrition, social services, mental health and pastoral care). In responding to its charge, the committee noted some overall service concerns. AIDS patients in southeastern Michigan were randomly accessing services. No coordinated system for services or for referral to services existed. The lack of qualified and responsive post-acute facilities, such as residential or nursing home placements, also interfered with timely discharge planning. According to the Task Force report, most nursing homes in Michi- 7-30 Volume 2 - Managing and Financing the Problem gan are still not willing to admit AIDS patients and hospice services are difficult to obtain. Committee members cited fear among providers as an ongoing deterrent to making services accessible. Committee members debated the feasibility of grouping all AIDS patients into one or two designated facilities (a move considered by several other low incidence states such as Louisiana) as opposed to continuing to serve patients in all of the area facilities. They decided to develop a consortium of major providers of comprehensive care, using a formal referral system and affiliation agreements to link provider organizations and individuals. They recommended that hospitals share responsibility for inpatient care and that planning begin immediately to establish one or more dedicated care facilities for AIDS patients. Formal case management was recommended as essential in coordinating all levels of care. Active planning was also recommended to develop appropriate nursing home facilities, in addition to inducing nursing home administrators to open their admission policies to AIDS patients. Home health agencies were strongly encouraged to participate in the consortium, and the committee supported plans by Wellness Network, the local community AIDS organization, to establish a residence for homeless people with AIDS. The committee was particularly concerned about protecting the rights of AIDS patients to privacy and confidentiality, as well as the rights of individuals without AIDS to personal safety and infection control precautions. As the Task Force Report notes: "A dilemma exists in that the rights of persons with AIDS to privacy and confidentiality may occasionally appear to conflict with the rights of persons without AIDS to safety and protection. In fact, such conflict is usually due to misinformation about the nature of the disease and how it is spread. Most of the time, it is possible to keep the legitimate rights and nceds of all parties in balance, and every effort must be made to achieve this goal." In developing its plan, the committee kept its eye on financing, noting that as much as $22 million had already been spent on patient care in Michi- gan and that, based on these estimates, local costs were likely to increase to $45 million by the first quarter of 1987, to $90 million by 1988 and to $180 million by 1989. The committee concluded that a comprehensive, organized system of care had the potential to reduce these costs by 20-40 percent. The finance committee urged that the delivery of health care to AIDS patients be organized to make best use of the knowledge and skills among providers in an interdisciplinary approach. It recommended that AIDS be considered in the same category as other catastrophic illnesses subject to long-term treatment methods for patient care (such as rehabilitation patients and renal patients) and that legislation be enacted to define patients in the later stages of AIDS as having catastrophic illness in order to qualify for Medicare benefits. It recommended that legislation be enacted to prohibit Chapter 7 - Medical Care Issues 7-31 insurance companies in Michigan from excluding payment for the treatment of AIDS, including the development of appropriate payment mechanisms in all health care systems for the uninsured (such as a trust fund to pay for health services, an augmented safety net program for individuals who are ineligible for Medicaid). It further recommended that payment for the care of AIDS patients should be related to the actual costs of providing appropriate treat- ment in each setting, as opposed to using the DRG payment system. To underscore the urgency in developing this system of care, the Task Force report observed that between the time the committee began to meet and issued its report (a period of six months), Michigan’s reported cases of AIDS increased by approximately 50 percent. California’s Regionally Based Treatment Centers California has proposed designating regional centers throughout the state to provide AIDS treatment and care. The centers would encourage the devel- opment of a long-range strategy to respond to the increased case load, sharing the resources of different counties, suburban and urban areas. The California Office of AIDS would develop a regional breakdown of county and health districts for AIDS service providers, based on existing networks and patient needs. The regions would develop their own AIDS Treatment Centers at hospital facilities. Contracts to establish these centers would be issued on a competi- tive basis to hospitals. Hospitals would collaborate with community groups and other AIDS resources in coordinating patient care, adopting similar goals to New York’s designated care centers: to permit patients to manage the quality of their lives in their home environments as long as possible. Utilizing a case management model and interdisciplinary team approach, the centers would provide for all levels of care, including: o Ambulatory and inpatient care. o Home health, nutritional and attendant care, including respite care. o Psycho-social and spiritual services. o Psychiatric and treatment and care services for dementia. o Hospice, death, dying and bereavement services. o A continuum of residential services. o Skilled nursing facilities. o Legal, financial and related social services. o Counseling and crisis intervention. 7-32 Volume 2 - Managing and Financing the Problem o Clinical drug therapy and information and access to experimental programs. o Occupational therapy. o Volunteer recruitment, training and support services. o Physician or other appropriate referral. As recommended in Michigan’s model, California’s plan includes ongoing inservice training to address patient treatment and management issues and recognizes the need for support and stress management encountered by providers in caring for AIDS patients. In developing its regional plan, California has estimated that at least one- third of all reported AIDS cases will be located outside of the high incidence cities of San Francisco and Los Angeles and that case estimates in California will exceed 12,900 reported cases by 1991. New York -- Comprehensive Family Care Center Perhaps the most synergistic, comprehensive care model, a program that evolved out of crisis and need, has emerged over a period of years at Einstein Medical Center in New York City to serve children with AIDS and their families. Renamed the "Comprehensive Family Care Center" (CFCC) in 1985 after it was observed that the families of HIV-infected infants and children required just as many services as the identified patient, the program currently serves one-third of all pediatric AIDS cases in the country, and almost all children with AIDS throughout the Bronx (approximately 200 children with AIDS and ARC and 120 families). Beginning in 1979, Dr. Arye Rubenstein began treating infants and children with AIDS symptoms at Einstein Medical Center. As cases increased and an AIDS clinical definition was issued by the CDC in 1981, Dr. Rubenstein applied for government grants to conduct pediatric research and provide increased medical services to children with AIDS. By 1983 and 1984, a Pediatric AIDS Clinic evolved, providing services to patients referred through surrounding municipal hospitals in the Bronx, including Jacobi, Montefiore, Bronx Lebanon and North Central Bronx Hospitals. Because space was limited at Einstein, and the program developed over a period of several years, it is housed in several discrete units, generally located at Einstein Medical Center. By 1985, a social service grant added an administrator, social worker and a graduate social work intern with nurses and an outreach worker to interface with all methadone programs in the Bronx to target high risk mothers. Since most of their patients are referred from the Bronx, which has the highest incidence of pediatric AIDS in New York, patients are predominantly black and Hispanic (92 percent), and are the off- spring of IV drug using mothers (75 percent) or of mothers who are the sexual partners of IV drug users and other infected males (23 percent). Chapter 7 - Medical Care Issues 7-33 Program components include: o Medical laboratory for on-going research. - IV gamma globulin treatment for pediatric AIDS patients which appears successful in reducing infections, improving general health and prolonging life - Study of percentage of IV users that get AIDS - Prenatal study of HIV infected mothers o Medical care for new referrals and follow-up. o Medical pediatric day care center at BMHC Jacobi Hospital. o Social service and referral program for AIDS families. o Outreach program to high-risk women, through methadone clinics for referrals for education, counseling and testing. o Community education and provider training. What is most exemplary in Einstein’s comprehensive care model is the response of workers to utilize existing public and private resources to develop components of the program and to provide additional funding as the need has evolved. Social workers in the CFCC work closely with providers at other area hospitals who can offer specialized patient care (e.g., neuropsychiatric testing through the Department of Psychiatry at Yeshiva, dental care through a dentist at Lincoln Hospital, OB/GYN care through other departments in the hospital, family therapy through the Ackerman Family Institute). In order to offer these services, social workers have developed relationships with other providers in the Bronx Municipal Hospital system and with private practitioners in the community. At times, services are provided free of charge since 99 percent of patients are Medicaid recipients and not all services may be reimbursable. An attending team of a physician, social worker and nurse monitors each patient’s needs and the needs of their families. Patients and families are referred out for specialized services and care. Outpatient services including substance abuse treatment, home care, residential placement and support services, such as emergency housing, are offered by various community resources (see Exhibit 7-2). Community education and provider training is offered by the director of social work on a 25 percent staff time ratio. Specialized community outreach is provided in conjunction with the Bronx Community AIDS Task Force to increase community awareness of AIDS preven- tion and to increase acceptance of AIDS patients in their neighborhoods and local communities. 7-34 Volume 2 - Managing and Financing the Problem EXHIBIT 7-2 COMPREHENSIVE FAMILY CARE CENTER EINSTEIN MEDICAL CENTER - NEW YORK INPATIENT AND SHORT-STAY HOME CARE AND RESIDENTIAL CARE OUTPATIENT 1 CFCC 2. Adult Outpatient 3. DSAS EXPANDED TEAM Nutrition Family R Planning espugion Therapy Child Life MULTIDISCIPLINARY CONSULTATION Specialist TEAM Neurodevelopment Specialist CORE TEAM Physician Physician Ss Assistant Special Social Worker Education Neurologist Nurse Child/Family —~—— | Psychiatrist Clergy Physiatrist Psychologist Dental Care Physical Therapist Speech and Language Therapist Community Education Hot Line Training Volunteers Community Groups Brochures Flyers Posters EMERGENCY SERVICES Chapter 7 - Medical Care Issues 7-35 Funding is provided through private grants and the New York AIDS Institute, which specifically funds an AIDS hotline for children and youth, educational materials and community education activities. Planning Systems of Care In planning systems of care, policymakers will need to consider the following: 0 It may be more difficult to plan comprehensive systems of care in areas with relatively few diagnosed cases. While case management is still important, it may not be cost effective to plan special facilities to care for AIDS patients. Regional service arrangements, expanding special facilities serving multiple populations, or emphasis on home based services may be useful alternatives. Only a few states, like California, are beginning to plan regional care solutions. The demographics of the AIDS population will determine the model selected and approach implemented. For example, the availability of volunteer groups and the very large number of community AIDS organizations in California evolved in response to the homogenous patient population (i.e, gay and bisexual males) in that state. Community resources and volunteers are more difficult to mobilize with a different population that is less well organized, internally. New Jersey, which has the largest number of IV drug users with AIDS, has had to initiate many of its programs on a state level through government agencies and programs. While funding is a key concern to providers, states may need to use their own grant mechanisms to ensure the cooperation and collabora- tion of local providers. Consortia of facilities and agencies may provide one solution, where funding grants and resources may be shared, such as in the cooperative community efforts stimulated by the Robert Wood Johnson Foundation AIDS Service Programs. However, institutional rivalries, different financial resources and needs and highly diverse patient and community based populations have made consortia extremely challenging to develop in certain metropolitan areas. 5. Conclusions The following summary points are key issues for policymakers to consider in providing medical care to HIV infected individuals and in developing systems of care: The rapid changes in scientific knowledge, resulting in improved treatment and potentially longer life spans for patients with AIDS related conditions are beginning to change their needs for service and care. - More emphasis will be placed on outpatient care and home care, including outpatient drug therapy. 7-36 Volume 2 - Managing and Financing the Problem The introduction of anti-viral drugs will allow more AIDS patients to maintain a higher level of independence and greater mobility, but may also complicate and increase the costs of care. o Comprehensive provider education is required to: decrease worker’s fear; make appropriate services more accessible to patients; and help enforce routine practice of infection control precautions. Special populations require intensified services from existing programs as well as the development of new AIDS-specific services: High risk mothers require AIDS education, counseling and testing programs along with ongoing support services when infants are born infected. Pediatric AIDS services include medical care, research, home, day care and foster care with comprehensive services to families. IV drug users require increased access to methadone treatment programs. Because existing programs are already overburdened for the current level of need, this may mean either expanding existing programs or opening new ones. IV drug users with AIDS require support services including housing and home care -- services currently unavailable or more difficult for many of them to access. The lack of coordinated care for IV drug users with AIDS has made discharge planning and outpatient care more difficult. It also contributes to escalating costs for this group. These problems are more evident in areas with a lower incidence of cases. Innovative financing is required to support these services (see Financing Chapter). o AIDS and ARC patients are more difficult to serve than other chronic patients for several reasons: There is inadequate provider education, including providers at all levels of patient care. Patients require a higher level of skilled care and emotional support than other chronic patients. Chapter 7 - Medical Care Issues 7-37 Patients require medical monitoring to avoid recurrent and often preventable hospitalizations. Patients require varied levels of care, intermittently (which may or may not be available) including support services, housing and residential placements. Discharge planners and providers are often not aware of available community resources and services so that patients can remain "warchoused" in acute care settings longer than necessary. o Several states and jurisdictions have developed designated AIDS units in acute care facilities. Several features have contributed to the success and efficiency of these units including the: utilization of a multidisciplinary team to integrate services (e.g., medical and psychological); capacity to coordinate care (including planned access to critical community resources, such as housing, home care, outpatient care and mental health resources); and capacity to offer highly trained, well updated staff as medical information rapidly changes. practice of routine infection control precautions to reduce confusion to patients and staff, and reduce the fear and sense of isolation of many AIDS patients. Finally, based on the experience of AIDS patients, well-planned designated units may actually increase quality of care available to patients. If placed in the proper facility, like a major urban hospital with trained staff, the stigmatization associated with "designating a special AIDS facility" may be reduced. 0 Many nursing homes have refused to admit AIDS patients. Several states have addressed this problem by adopting the following strategies: adapting state nursing home regulations to approve acceptance of AIDS patients with appropriate infection control procedures; providing staff training and on-going education; and negotiating a higher reimbursement rate for nursing home care for AIDS and ARC patients. Nursing homes, however, may not always be the most appropriate place for AIDS and ARC patients, and states may wish to develop alternative facilities or arrange for their care in alternative settings. 7-38 Volume 2 - Managing and Financing the Problem Home based care can allow patients to remain at home, retaining a level of independence while reducing costs of care. Advancements in drug therapy and home intravenous therapy are increasing options for home medical care, with proper financial reimbursement. Drug therapies for AIDS are prolonging and improving patients’ lives. As other anti-virals are developed and approved, patient needs will change. Policymakers will need to monitor medical developments closely to anticipate changing service needs. The availability of a vaccine is still years away due to a number of factors, including the mutability of the virus and difficulty in determining effectiveness of the vaccine because of the long incubation period for AIDS. This places greater emphasis on prevention and education as primary interventions. Systems of care must be developed within affected communities to reduce the costs of care, maximize resources, and provide appropriate patient care. Several states are considering regional, area-wide and city-based care programs. Adequate or shared funding and collaboration are key factors in developing comprehensive care systems. Chapter 7 - Medical Care Issues 7-39 AZT: A CASE EXAMPLE NEW HOPE FOR PATIENTS AND NEW CHALLENGES FOR HEALTH SERVICE DELIVERY Studies to determine the effectiveness of AZT (Retrovir) began at 12 medical centers throughout the country in February 1986. Between February and June 1986 a total of 282 patients with AIDS and advanced ARC were enrolled in the study and data were analyzed every 2-3 months by a Data Safety Monitoring Board under direction of the National Institute for Allergy and Infectious Diseases. By September 1986 the trial was halted because data demonstrated significant differences in survival rates between patients receiving Retrovir and those on placebo. In addition to increased survival, other benefits of Retrovir included reduced symptoms of HIV infection, improvements in the immune system, fewer opportunistic infections and enhanced ability to perform daily activities. Because of these findings, the Institutional Review Board that monitored the trials felt it was unethical to withhold Retrovir from AIDS patients even though significant side effects were noted in some patients, including bone marrow suppression and severe anemia requiring blood trans- fusions. Data indicated that AIDS patients with advanced stages of infection were at higher risk for adverse side effects. It was also noted that ARC patients receiving Retrovir for at least 6 weeks did not develop opportunistic infections. Two key issues have raised concern for patients, providers and policy- makers: the availability and the cost of the drug. Compared to most other prescriptions, Retrovir is complex and expensive to manufacture. The actual chemical production takes at least 16 steps over a period of several months and some of the chemical reactions, which may be potentially explosive, require special handling in special manufacturing plants. Moreover, an essential raw material, thymidine, which was originally available only from herring sperm, is now being synthetically produced. Production needs for this component have increased from less than 10 pounds world-wide three years ago to a need for more than three tons per month at present. As a result, Retrovir will be available in short supply until the fall of 1987 and is expected to cost $25 a day (or up to $10,000 per patient per year). Several policy issues emerge in making Retrovir available to patients with ARC and AIDS, in addition to implementing new financing options and adapting existing ones to pay for the drug: 1) How will decisions be made to decide who gets Retrovir? - patients already taking it? - severely ill patients? - patients in early stages of infection who might benefit more? 7-40 Volume 2 - Managing and Financing the Problem 2) What additional drug trials will be initiated? - women and children with AIDS, ARC and HIV infection? - in utero trials with HIV-infected pregnant women? - asymptomatic HIV-infected patients? 3) What are the ethical implications of these trials? 4) How will the availability and use of Retrovir change or influence the demand for medical care and other support services? Because Retrovir is taken orally by patients, no special procedures are required; the drug can be taken at home under proper medical supervision. Since the drug improves the quality of life, reduces the number of opportunis- tic infections (which generally require hospitalization) and improves neurologic functioning, it is conceivable that the utilization of Retrovir -- and future anti-virals -- can reduce overall hospitalization costs. Ironically, however, the administering of Retrovir might increase for both states and private payers the total cost of caring for patients with AIDS or ARC. As patients on the drug live longer, they will still require a significant amount of medical care and support services, though these services may be less acute or cost-intensive. And while the portion of acute services required by AIDS or ARC patients may decrease, the total volume of services may increase, straining outpatient, home care and support services (See also chapter on Financing for a discussion of Retrovir cost benefits). Based on current cost of care estimates -- a total yearly treatment cost in San Francisco is estimated at $43,500 (Scitovsky, Cline and Lee, 1986)-- AIDS patients treated with Retrovir could reduce their direct medical costs during the first year by about 25 percent. By decreasing the number of opportunistic infections and resulting hospitalizations through the use of Retrovir, ARC patients could reduce their total annual health care costs by 60 percent. In summary, experience with Retrovir gives policymakers an opportunity to consider the general effect that new drug treatments will have on AIDS patients, their use of health services, and treatment costs. It also requires policymakers to review existing state structures and mechanisms to: o Distribute drugs equitably and cost efficiently. o Focus research efforts to include other groups of patients who may benefit significantly (e.g., women and children, patients at various stages of infection). o Include drug treatment programs in long-term planning estimates to plan and evaluate more cost-effective systems to provide appropriate patient care. 8. SUPPORT SERVICES What kinds of support services are required for short- and long-term planning in high-, moderate- and low-incidence areas? How should these services be coordinated? 1. Introduction Throughout the duration of their illness, most AIDS patients will require some level of acute care services. Even so, AIDS is essentially a chronic illness that requires ongoing patient care and monitoring to reduce intensive hospital stays and critical care needs. Due to some of the unusual features of the disease -- young age of patients, generally rapid physical deterioration, ncurological impairment, repeated infections that can necessitate frequent hospitalization, fear and anxiety among staff, and the significant social stigma attached to patients -- AIDS patients have increased psychosocial and service needs. The Greater New York Hospital Association estimates that AIDS patients require two to three times more nursing care than patients with other health concerns. In many cities with a sizeable number of AIDS cases, this translates into longer hospital stays and increased cost per patient since few states are able to provide comprehensive systems of care. A notable exception is San Francisco, a city that has the lowest hos- pitalization costs for AIDS, largely because patients spend less time in hospitals. The average stay per hospitalization in San Francisco is 11 days, compared with 17 days in Los Angeles and 20 days in New York State. In addition to San Francisco’s dedicated inpatient care unit and outpatient AIDS clinic, the city has evolved a comprehensive system of care that maintains patients longer, more efficiently and compassionately in their own homes or in alternate living situations. This significantly reduces the cost of hospitalization and provides a model for other cities and states in planning for a longer-term response to AIDS. Types of Support Services The term "support services" is frequently used to describe a group of ancillary services that supplement basic medical care. Most are designed to maintain individuals within the community, thus enabling them to stay out of the hospital. As New York City’s 1985 report to the mayor, "New York’s Response to the AIDS Crisis," noted: "The goal of the system of designated AIDS centers is to permit patients to maintain the quality of their lives in a home environ- ment as long as possible." In general, support services include: housing, transportation, meals, counseling (including support groups), home care, foster care (adult and child), day care, legal services, mental health services, and income maintenance, including entitlement education. Support services may also include long-term care options such as placement in nursing homes and intermediate care facilities. In this report, these services are discussed in the chapter on medical care. 8-2 Volume 2 - Managing and Financing the Problem Planning Planning is crucial in developing support services, and it is important to understand the local demographics of cases and the specialized needs of affected individuals. In San Francisco, for example, 88 percent of AIDS patients are white and 98 percent are gay and bisexual men. This contrasts sharply with New York City, where 48 percent of the patients are white and 33 percent are IV drug users. These demographic differences account for differences in access to health care and to existing support networks and services. For example, volunteers generally provide the backbone of AIDS support services; therefore, it is useful to consider the patient demographics vis-a-vis the availability of potential volunteers. It will undoubtedly be easier to provide an available pool of volunteers to gay male patients in an area with a large gay community. Furthermore, the existing support network for gay men will undoubtedly be more developed and expansive in certain communities than they are for IV drug users. These factors need to be considered when planning support services for state or local communities. 2. Legislation As with AIDS education, states replying to the questionnaire distributed to prepare this report have indicated that support services were a ma jor concern. California and the District of Columbia initiated legislation to assess the types of services and programs required. In particular, California is conducting a survey to determine the service needs of adults and children with ARC and Michigan has proposed a similar survey. Both laws also request data on incidence and cost of care, and the California law requires the Department of Health Services to provide a definition of AIDS Related Complex, which will be used to assist people with ARC in qualifying for services. Maine passed legislation to establish an Advisory Committee to work with the Department of Human Services in coordinating services to HIV-infected individuals, their families and caregivers. New Mexico and New Jersey were the only states that passed legislation specifically to appropriate funding: New Mexico targeted $100,000 for residential and support services, and New Jersey $1,600,000 for general support services. 3. Community-Based AIDS Organizations It is impossible to discuss the state response to AIDS without discussing the contribution and role of community-based AIDS organizations. Since 1982, organizations like the Gay Men’s Health Crisis in New York and the San Francisco AIDS Foundation have developed and coordinated services to people affected by AIDS and to the general public. As noted elsewhere, a significant proportion of these services include risk reduction and prevention services. However, they also provide comprehensive services for people with any level of HIV infection and their families, including: 0 counseling services (e.g., support groups) Chapter 8 - Support Services 8-3 o referral networks o hotlines o pastoral counseling o housing assistance and placement, including coordination of resi- dential facilities o entitlement education and assistance, including help in filing for Medicaid, Supplementary Security Income, foodstamps, general assistance o financial assistance for non-medical needs o legal aid, including wills, employment problems, bankruptcy, and medical powers of attorney 0 transportation o recreation o training programs for volunteers and care givers In describing the evolution of an early community AIDS organization in a recent article in the American Journal of Public Health, Peter Arno has written: "The San Francisco AIDS Foundation was founded in April 1982 as a direct response to the AIDS epidemic. It began as an all-volunteer, grass roots organization composed mainly of gay community leaders and physicians. Initially located in a storefront with a single telephone, the group sect up an Information and Referral Hotline that soon became nationally known as a source of accurate information on AIDS." By November 1983, the San Francisco AIDS Foundation had contracted with the California Department of Health Services to provide AIDS education services. Later, the foundation contracted with the state, city and county of San Francisco to provide various support services. In communities across the United States, community-based AIDS organiza- tions were established based on the model programs in New York and San Francisco. Today there are approximately 250 such organizations. While some of them provide state-wide services, such as AID Atlanta in Georgia, and some are funded by cities and counties, only 17 states actually fund com- munity-based AIDS organizations to provide education and/or support services, and most of these states fund only educational programs (See Exhibit 8-1 for a list of states that fund support services). Initially evolving within the gay community to provide services specifically to those at risk, these programs were soon extended to the general public and to anyone at risk for AIDS. Volume 2 - Managing and Financing the Problem 8-4 pi — - . N08vOS TY. NOVO 2 ~~ I-8 LIGIHX4 ' \ *\vIoH039Y CAN ; \ Js of "L861 ‘Aisioaruf) uoidurgsepy 981090) aq 10014 £1104 QI[E2H [EIIWWIA0BIANU] a8uayrey) Wey AMqng V :SATV FOYNOS ree! : | gaississig \ ! J | I / & SVSNVXHY a e= - i N Nome SVS . | A MNOSSINY, a I i a A Lemon S0wi070 i i — T=, = rxson] Fan] I i i ~r 2am So ~-& YNgg | / / SS ——— ONIwo, / iowa anos!” —— vA A, ) = \oy 8 var I 2 { ’ . N ] L [oe ~2o V10%va wwon] \ i . Sr e— . —— ~ Inn} 1 ~ = Quay, Q Sm SHOIAYAS L30dd1S ddIAOdd OL SNOILILVZINVDYO SAIV adsvd ALINNWINOD ANNA LVHL SALVLS Sav Chapter 8 - Support Services 8-5 Maryland, one of the first states to fund education and support services through a local community based AIDS organization, HERO in Baltimore, broadened HERO’s scope of services to include outreach and counseling programs to IV drug users. As of August 1987, the state took on all outreach and prevention programs originally contracted to HERO under a recently formed AIDS Administration within the state health department. In other areas, as in Houston, states fund outreach activities exclusively to gay men through local gay service organizations. A significant feature of these organizations is their capacity to recruit, train and assign volunteers to patients in their communities. In the metro- politan D.C. area, which has a large number of AIDS cases spread across three jurisdictions, a state-funded program at the Whitman-Walker Clinic also re- ceives state funds from Virginia and Maryland to service those surrounding jurisdictions. Volunteers are generally trained and supervised with sophisticated training programs such as that offered by Shanti in San Francisco for all its volunteers. Shanti provides housing, counseling and bereavement services to AIDS patients, training its volunteers with an inclusive 44-hour course requiring weekly supervision and a six-month contract. Volunteer mobilization is seen as a significant factor in providing the essential support services that have decreased hospital stays in San Francisco. However, the ability to mobilize volunteers may well vary across states and local communities, since the key to success may be personal knowledge of someone diagnosed with AIDS. This element may not exist in lower-incidence areas where fewer individuals know someone who has AIDS. Additionally, in high-incidence areas such as New York and California, it is conceivable that the supply of untapped volunteers may eventually dwindle, since burnout is a factor in continuing to provide these services. Before discussing specific state-initiated AIDS support services, it is worth noting some features that may contribute to developing a successful "continuum of care" and an array of support services for AIDS patients: 1. Support services are best planned as part of a system and "con- tinuum of care." Often support services develop serendipitously or as an afterthought. States should build upon existing programs and integrate them into an overall plan. 2. A viable volunteer pool should be developed to help provide critical support services (e.g., counseling, transportation, companionship, home care). 3. Networks of community-based AIDS organizations are critical in communities providing basic AIDS services, like counseling, referral and patient advocacy. Funding is needed to support these services. 4. Appropriate housing services for homeless AIDS and ARC patients, including families, should be developed. 8-6 Volume 2 - Managing and Financing the Problem Support services should be coordinated at the state and local level, (e.g., AIDS Service Offices) to integrate services between diverse health care and social service departments, which may have different eligibility standards. In responding to the unique problems presented by AIDS, workers have often encountered a nightmare of red tape. By the time services may become available, the patient may have died or can no longer benefit from them. An extensive discharge planning system, including case management, should be developed with broad networking and referral capacity. In San Francisco, both Shanti and the San Francisco AIDS Foundation have programs available within the hospital so that discharge planning begins when the patient is admitted. New York City utilizes a multidisciplinary team with a case manager assigned to each patient, to maximize use of home care and community based support services. Appropriate training and on-going support should be offered to all health care workers providing services to AIDS patients. Unfor- tunately, often services that may be funded may not be provided because workers are in short supply or are largely unavailable (e.g., frequently chore aides or home health aides do not receive special AIDS training so they may be afraid or unwilling to work with HIV- infected patients). Extended care facilities and intermediate care facilities should be equipped and staffed to manage AIDS and HIV-infected patients. Increasingly, hospices are willing to care for AIDS patients, but nursing homes in most states, including New York and California, for the most part, are unwilling to accept AIDS patients. Thus, patients who are no longer critically ill but who still require some level of care, are often unable to be discharged from hospitals because there is no one to care for them and/or no place for them to go. Culturally sensitive and bilingual programs should be developed for specific groups of individuals at risk, in particular minority groups, and women. When services are not delivered in a way that meets patients’ personal, social and cultural needs, they often do not return for services; they are not honest with their care-givers because they fear misunderstanding, rejection or ridicule; or they do not participate in programs because they are not aware that services are available. (An available resource in this area is the "AIDS Service Directory for Hispanics," compiled by the National Coalition of Hispanic & Human Services Organization, to assist providers in locating AIDS information and services for Spanish-speaking clientele.) Chapter 8 - Support Services 8-7 4. Range of Support Services Housing Perhaps one of the most critical, immediate needs that AIDS and ARC patients have is for appropriate housing. Two factors ensure that housing will continue to be an ongoing issue for patients and their families: 1) Economics - Many AIDS patients who lose their jobs are no longer able to afford a mortgage or higher rent payments. Some who are required to "spend down" to become eligible for Medicaid must use up all their assets, including selling their car, etc, in order to qualify. When a family member who is the sole support becomes ill, families can become homeless, and this is particularly an issue for families where more than one member has AIDS or HIV infection. 2) Management - Many AIDS patients become debilitated and are no longer able to care for themselves without supervision or some continued level of maintenance, including meal preparation, housekeeping, assistance getting in and out of bed, etc. Others, who develop AIDS dementia, require more specific supervision and some level of skilled care. Most foster homes and institutionalized residential scttings are not prepared to address these concerns. Moreover, many families do not have the resources to care for an individual who has AIDS at home, and the need for appropriate housing becomes even more pressing, as the patient gets more debilitated. Several community AIDS organizations have addressed these housing needs by using a housing model developed by the Shanti project in San Francisco. Funded by the San Francisco Department of Public Health beginning in 1982, the models typically house 5-6 AIDS patients. Similar housing programs have developed in Washington, D.C., and Georgia. In the District, funding for housing is subsumed under the city’s AIDS contract with the Whitman-Walker Clinic, which provides a range of support services. The clinic offers both 4-5 patient residential dwellings and subsidized apartments suitable for families and couples. A number of jurisdictions have seen the need for housing for AIDS patients who sleep in shelters for the homeless. Many shelter administrators are concerned and are unwilling to house patients with AIDS, claiming that shelters are not health care facilities. A few jurisdictions are targeting special programs. For instance, Massachusetts may be the first state to fund shelter facilities for homeless people with AIDS, offering a 10-bed unit at the Shattuck Shelter at Shattuck Hospital. Using an available five-bedroom house on the grounds of Westfield State Hospital, Massachusetts has also funded an AIDS residence that can serve individuals and families, and is planning a second facility. Connecticut’s legislature has mandated the Commissioner of Human Resources to establish a pilot program to provide housing for homeless persons 8-8 Volume 2 - Managing and Financing the Problem with AIDS, to be operative in two municipalities designated by the commis- sioner. The state will issue up to $600,000 in bonds to acquire, construct or repair the facilities, and will transfer $50,000 from the Community Housing Development Corporation to plan and operate them. Foster Care Programs Some states recognize that some adults will require a level of on-going supervision in adult foster care programs. Florida has developed guidelines for locating a suitable placement and has permitted district administrators to adapt standards which would allow them to accept patients if appropriate infection control guidelines are maintained and providers attend special training sessions. Michigan has identified adult foster care as a growing need, and is developing a program to provide this service, including a statewide education program for all adult and foster care providers and staff. Maryland has recommended that all foster care providers be informed of a client’s positive antibody or health status. In developing foster care programs for children, New Jersey and New York have taken different approaches. Both states have identified housing and foster care placement as critical needs for children and infants with AIDS. Without foster care placements, children, in particular, will stay in hospitals for most of their remaining lives. But placements are often difficult to find since foster care parents and families are fearful of HIV transmission. New Jersey has funded a foster home residence for children with AIDS at St. Clare’s Home for Children. Funding initially will cover renovation and staffing, with a van for transportation. Eventually, the home should be able to provide for 10 children, offering personal attention to the children in a home-like setting to which they may be discharged from the hospital as soon as possible. Future plans include day care and family respite services. Though New Jersey has already established higher Medicaid rates for special foster homes, program administrators have asked for even higher reimbursement rates for AIDS foster care services under the new Medicaid waiver. A novel collaboration between Hale House, a home for orphaned and abandoned infants of drug addicted mothers, and Harlem Hospital, will provide placement and residential home care for fifteen infants with AIDS. The facility, called Hale Cradle, will operate with a $750,000 annual budget provided by public assistance programs and private donations. Children will move back and forth from the hospital as more acute care is needed. New York’s Human Resources Administration and State Department of Social Services have begun a pilot project to identify foster homes where AIDS infants and children can be placed. Administered through the Leake and Watts Children’s Home, the project is attempting to identify families already certified as foster parents since it generally takes from 3-5 months for a home study to be completed and the family to be certified. In line with the state’s practice of paying foster families higher rates for taking children with greater medical and social needs, families who take AIDS children will be reimbursed at $800 per month, twice the usual rate. Chapter 8 - Support Services 8-9 This program, and others like it, will attempt to ease the social and financial burden of New York’s "boarder babies," children who remain in the hospital after birth, often for months, awaiting placement. For 1986, costs of maintaining these infants in private non-profit hospitals are estimated at $5 million, since Medicaid only reimburses for the first 10 days of hospitalization. Most of these babies linger for at least 30 days, if not for months, in the hospital. Because AIDS manifests itself differently among infants than among adults, some practitioners feel that a significant number of pediatric AIDS cases are not diagnosed. Additionally, it is estimated that for every pediatric AIDS case that fits the CDC definition, there are another 2-3 pediatric ARC cases. Since many of these children will progress to AIDS, it is conceivable that by 1991 there will be more children with these needs than was previously estimated. The housing and service needs of families affected by AIDS, where several members have already been diagnosed or are seropositive, have increasingly become an area of need. This is a particular problem for IV drug-using families, who have the highest number of infants with AIDS. In New York City, for example, 80 percent of the infants with AIDS are born of IV drug-using parents; 92 percent of these children are black and Hispanic. Many of these families live in poverty, experiencing a very real lack of access to resources. Due to IV drug use, their family systems are often chaotic. Support is often unavailable since other family members are frightened of AIDS and are unwilling to help provide child care or home care. After their first child is born infected and/or develops AIDS, many mothers often have two or more babies who are also frequently infected with HIV. In some instances, AIDS dementia has made the mother "unsafe" and children need alternative living arrangements. While early intervention services to interrupt this pattern with education and support services have been identified as a primary need in New Jersey, funding has not been available to develop pilot programs. Child Day Care Services Maryland has cited the need for specialized, individual day care place- ments for children. Its AIDS Task Force Report states: "As a matter of public policy, it is important to expand the number of potential day care placements for HIV infected children. The number of these children will continue to increase along with the number of HIV infected women." Rather than just sanctioning specialized day care programs, the Maryland AIDS Task Force considered data from informal surveys conducted by the state’s Preventive Medicine Administration. The survey indicated that it may be more expensive to pay group day care providers to take extra infection control precautions (required by infants in diapers) than to provide the same level of care for the HIV-infected child at home. Utilizing funds from the Robert Wood Johnson AIDS services grant for 8-10 Volume 2 - Managing and Financing the Problem Newark and Jersey City, the New Jersey Health Department has appointed a multi-disciplinary pediatric AIDS Task Force. Initially, funds will staff a transitional facility where children and parents can stay temporarily to ease their move from hospital to home, in addition to a respite day care program where parents can place AIDS children during daytime hours. Adult Day Care Adult day care services have also been identified as an increasing need, especially for patients unable to remain at home alone during the day without attention, and for those with AIDS dementia. These services are particularly critical for family members who work during the day and can’t afford to take a leave of absence. California is developing four pilot programs of Adult Day Care Outpatient Clinics to provide early intervention in the treatment of opportunistic infections and to reduce the frequency and length of admission to acute care facilities. New Jersey is developing an adult medical day care program, especially for IV drug users with AIDS who require day-time super- vision. Similar to a geriatric day care model, the program will offer struc- tured services to 1V drug users with AIDS, including counseling on drug and AIDS-related issues. Housed within drug treatment programs, the two units are Medicaid-approved to reimburse for medical day care within a free-standing facility. Mental Health and Counseling Services Mental health services include a broad range of psychiatric, assessment and counseling services: crisis intervention, evaluation and referral; individual and group counseling for patients, families and couples; and psychiatric and neurological assessment. These services differ from the counseling generally offered with HIV testing or to individuals who receive counseling on risk reduction and AIDS prevention. Traditional mental health services are far more inclusive. They offer more intensive, on-going services in community mental health agencies, outpatient clinics, psychiatric hospitals and units; substance abuse evaluation programs and walk-in centers. These services, however, require adaptation to the needs of HIV-infected individuals. People with AIDS, ARC and HIV infection, as well as their families and significant others, have many specialized psychological needs. Their responses to the stigma of an AIDS diagnosis, general discrimination and the effect of chronic illness require counseling, support groups, and, at times, psychiatric referral, including treatment with psychotropic drugs for depression and anxiety. Another problem that some HIV-infected individuals will face -- AIDS dementia or infection of the brain with HIV -- requires specialized services including assessment and identification of the condition; at times, medication may also be needed, along with counseling, often for both the patient and their family or support system. As many as 50 percent of living AIDS patients and 70 percent of those who have died show some signs of AIDS dementia. This condition -- which can include memory loss, partial paralysis, speech impairment, mood swings, and the loss of muscle coordination -- has also been known to affect some individuals with ARC and, to date, a small number of individuals infected with HIV. Chapter 8 - Support Services 8-11 In addition to the specialized needs of diagnosed AIDS and ARC patients, many who receive a positive antibody test (along with their spouses or partners) require ongoing counseling to cope with their new health status. Specially trained mental health providers are needed to deliver these services, but many mental health providers fear -- or lack experience with-- AIDS in general, life-threatening illness, death and dying and the needs of special populations (e.g., gay and bisexual men, IV drug users, minorities). Thus, mental health services to AIDS patients have been slow to evolve or are unevenly available in traditional treatment facilities. As a result, most of the specialized counseling, crisis intervention and support group services are provided by community AIDS organizations. A few community programs have developed appropriate treatment and intervention models at early stages of the epidemic. Groups such as Shanti, GMHC and the San Francisco AIDS Foundation have shared these models widely with developing AIDS organizations. These include models for counsel- ing and support groups, in addition to guidelines for training and supervising volunteers. All of these services are offered free and almost all, with the exception of a few state, county and locally funded programs that feature paid staff, are provided by volunteer mental health workers. California was the first state to fund mental health services for people with AIDS through the state university system (University of California, San Francisco). Other states that fund community AIDS counseling and support services include: New York, New Jersey, Maryland, Massachusetts, Minnesota, Washington D.C., Michigan, Wisconsin, New Mexico, and Virginia, while California is beginning to fund services this year. In a state-wide assessment, California found that local counties were not funding mental health services. In response, the state developed mental health promotion videos for distribution around the state, and a state directory of mental health providers helps locate practitioners to serve AIDS patients. A recently published teaching guide and training film produced by the AIDS Health Project at UCSF and funded by the California State Department of Mental Health (Working With AIDS: A Resource Guide for Mental Health Professionals) has provided an important mental health resource. Ohio has also funded a state-wide directory of mental health providers of AIDS services. Despite the extraordinary level of need for counseling that individuals with HIV infection have demonstrated, only one-fifth of the states fund counseling and mental health services. The critical need is underscored by early findings of NIMH-sponsored psychosocial research: o Men who changed their sexual behavior to reduce their risk of exposure to the AIDS virus were more distressed than those who maintained high risk behavior. o Healthy, at-risk men showed chronic stress effects and clinical depression. 8-12 Volume 2 - Managing and Financing the Problem o People with AIDS or ARC react very much like people diagnosed with malignant melanoma and acute leukemia. All showed mean clinical levels of distress, anxiety and depression. o A tentative finding showed, for AIDS patients, a significant association between many symptoms (medical and psychosocial) and perceived unavailability of social support. Counseling should be viewed as a long-term intervention and not just as a crisis intervention or short-term strategy. Since counseling services are often required for some time following a positive antibody test and since counseling and support groups are powerful adjuncts in helping institute positive behavioral change, it seems likely that states and local jurisdictions will initiate more counseling services for AIDS-related concerns in the immediate future. Home Care Perhaps the backbone of support services are those that allow patients to be maintained and treated within a home environment. Home care includes a constellation of services, including home health services, nurses to monitor medication and provide direct patient care, social workers to provide counsel- ing, home health aides and chore aides to provide companionship, personal care and light housekeeping services. Central to the ability to offer home health services is the concept of case management, a system that customizes care for individuals with life- threatening illnesses. Usually coordinated by a social worker or nurse who acts as case manager, the system uses cost analysis to select appropriate and, in general, more cost-effective services in cooperation with patients, their families, and health care providers. Case managers also coordinate home care with other outpatient, mental health, support services, and training so that family and friends can assume more direct responsibility for the patients’ care. As noted by Younger and Harris of the Washington Business Group on Health: "These alternatives to institutional care cost significantly less than care in the intensive care unit of a hospital. And such an individualized approach is often preferred by the patient." Roughan and Haussler, case management coordinators for Equitable Hospital Corporation, estimate the average daily costs for home and hospital care to be between $100 and $300, while the average costs for hospitalization are $880 to $1,000 per day. Home care for AIDS patients is demonstrably more cost-effective and more humane. In its recent report, Confronting AIDS, The National Academy of Sciences recommended that patient care be provided as much as possible within the community, with hospitalization only when necessary. The report further called on communities to develop systems of care "to provide patients with attendant or homemaking services up to 24 hours daily, as needed; nursing staff to be able to provide necessary medical intervention; and social support, including small-group housing. The use of volunteer groups to assist Chapter 8 - Support Services 8-13 in patient care and counseling should be encouraged. Also, representatives of existing agencies and health care providers should organize AIDS care groups to coordinate efforts toward community based care." Despite these advantages, home care services to AIDS patients are limited. For instance, only 22 percent of hospital home care programs nationwide currently provide care to AIDS patients, according to a survey by the American Hospital Association. Moreover, the average case load is small, i.e., only two or three AIDS home care patients served per program. The link between community AIDS organizations and cost reduction is a critical one in providing essential, low-cost AIDS services. As Peter Arno, a health economist, points out: "It has been argued that investing public funds in community- based services not only affords better quality care for persons with AIDS, but is also cost effective. The fiscal argument rests primarily on two factors: 1) the hidden subsidy of large quantities of unpaid labor (volunteers) allows for a greater production of services per dollar expended than is possible if the city provided the services itself; and 2) the availability of community-based services is linked to reductions in the length and expense of hospitalizations for AIDS patients." As does the high-level community care system developed in San Francisco, New York is making extensive use of case management in coordinating services at entry and exit points for its eight designated AIDS care centers. Through development of the AIMS model (AIDS Intervention Management System), the AIDS Institute is accumulating a detailed body of knowledge for program development. New York City, under a Robert Wood Johnson grant, will further refine a comprehensive community care system by developing a service component for the existing hospital system. Transportation, Meals, Entitlement Education Although transportation, meals and recreation are basic needs of people with AIDS, these services are often the most frequently overlooked. Transportation is often an issue for patients who are too weak to walk or drive, who do not own a car, or who may have become blind as a complication of their illness. Frequent doctor appointments, the need for socialization and recreation and attendance at support groups or counseling sessions require some mobility, especially since many services tend to be concentrated in one section of a large urban area. Transportation needs of AIDS patients in some communities have been met by "buddies," or volunteers within community AIDS organizations who provide companionship and help with home management. But transportation needs will increase as more individuals are diagnosed with AIDS. An increasing number tend to be geographically isolated, living in rural or more suburban areas that lack adequate public transportation. The innately alienating features of AIDS 8-14 Volume 2 - Managing and Financing the Problem and HIV infection, including the potential fear and anxiety of their family and friends, may only increase their isolation. Nutrition, and the need for regular consistent meals, are particular concerns for AIDS patients who generally suffer from a "wasting syndrome," in which they lose copious amounts of weight. Improper nutrition, dehydration and the inability to prepare one’s own meals can often require hospitalization to rehydrate patients. These hospitalizations could be averted by providing special meal programs for AIDS patients who are home bound or are unable to cook for themselves. While hot lunches are often a feature of day care programs, it is unclear to what extent states have identified the need to implement special nutrition programs for AIDS patients. Because of workers’ fear of AIDS patients, it is not always feasible to provide these services under already existing programs. Entitlement Information Most AIDS patients face substantial obstacles when applying for supple- mental income programs and other benefits. For example: o Most AIDS patients are not aware of which state or federal programs may be available to supplement their income. They may be uncertain of eligibility requirements or unclear about how to apply. o Many patients are young, have never been on welfare or unemployed, and are ashamed of their recently acquired indigent status. 0 Many eligibility workers have been frightened and unwilling to work with AIDS patients. o Applications for benefits must be filed separately and are often administered by different jurisdictions. If social workers do not begin the application process while the patient is hospitalized, benefits may be delayed significantly, leaving patients without any income or housing. Most community AIDS organizations routinely offer services to help educate persons with AIDS on eligibility for supplemental income programs and related benefits, such as food stamps, general assistance, SSI and Medicaid. States that fund support services in community AIDS organizations generally include this under general funding grants. Some jurisdictions, such as the District of Columbia, have designated a central staff member within the Division of Social Service to assist patients in applying for benefits and processing claims. Legal Services AIDS patients need many legal services. Often patients require wills and medical powers of attorney to assist in decision-making when they have become too ill or incapacitated to represent themselves. A significant number Chapter 8 - Support Services 8-15 have had to declare bankruptcy and require assistance in filing for it. Others, who have lost their jobs, benefits and housing, require legal aid to initiate discrimination cases. While many community AIDS organizations offer legal services through volunteer attorneys or staff attorneys, New York State may be the only jurisdiction that actually funds legal services for AIDS patients. Through "member items" or the discretionary funds of individual legislators, $90,000 was appropriated to provide legal services to AIDS patients through the Gay Men’s Health Crisis, a community AIDS organization. 5. Developing Available Resources Beginning Activities Outside the higher-incidence areas of New York and California are a range of states with diverse populations and specialized service needs. The policy question for moderate and low-incidence areas becomes: How can support services be developed in areas with initially low community interest or where they do not recognize the need? How can moderate incidence states that recognize the growing demand for support services marshal financing and coordinate interests of advocacy groups? Moderate incidence states have begun to address these issues: o Massachusetts funds five case managers to coordinate patient services through the local community AIDS organization, AIDS Action Committee. o Delaware has designated funds, pending fiscal availability, to provide case management services. o New Hampshire, through the Bureau of Disease Control, is con- ducting an assessment to determine community needs and availability of services. o Florida has designated district AIDS coordinators to assure case coordination and resource sharing. o Michigan has provided a grant for the Greater Detroit Area Health Council to develop and implement a continuum of care for AIDS patients. o Indiana’s State Board of Health is developing a network of com- munity action groups, composed of health professionals and AIDS patients, to educate their communities about AIDS. Overcoming Staff Problems In addition to development of support services as part of a comprehensive system of care, there is a more basic need to develop a specialized cadre of health care staff at all levels of service delivery. An often overlooked problem is the failure to provide sufficient training for all staff, including 8-16 Volume 2 - Managing and Financing the Problem chore aides, attendants, drivers, etc. As California has observed in a recent report: "Continued and serious problems in obtaining services for AIDS patients are caused by the attitudes of health personnel who have not received adequate education about AIDS." Another underlying problem in some areas is the critical shortage of homemakers. Low pay, coupled with high levels of responsibility, have made it more difficult to attract homemakers for general patient care. AIDS, by frequently provoking high levels of fear and anxiety, compounds the problem. New Jersey and the District of Columbia are two jurisdictions that have responded with targeted training programs. New Jersey has funded the Visiting Nurses Association, Community Health Care of Northern New Jersey, to recruit and train home health aides, homemakers and nurses to work with AIDS and ARC patients. Under its recent Medicaid waiver, the state has also amended a previous Medicaid regulation which would allow visiting nurses, during their predischarge visits with patients, to be reimbursed for planning aftercare and coordinating home services. The District of Columbia provided funding beginning in fiscal 1986 to recruit and train chore aides to provide home services to AIDS patients. Administered through the community AIDS organization at the Whitman-Walker Clinic, this program also coordinates assignment of homemakers to patients. Funding Given early indications that adequate support services reduce overall cost while providing more compassionate care to people with AIDS and HIV infection, more states are grappling with the cost-benefit issues associated with developing support services. State funding is crucial to the development of new service networks and a central question is whether a state is ready to dedicate some of its own financial resources to complement those of existing organizations and volunteer groups. Michigan and Massachusetts offer creative examples of state-funded responses. Michigan first developed a comprehensive system of care plan, including the need for support services. It identified essential service components and then began funding the development of necessary services, including a formal case management structure. Massachusetts, based on a community needs assessment, funded eight community care and hospice agencies to deliver appropriate services to AIDS patients. Both initiatives are high- lighted in greater detail at the end of this chapter. Public v. Private Sector Collaboration The initial lack of public funding for critical and cost-effective support services was recognized by the Robert Wood Johnson (RWJ) Foundation, which provided grants of $17.2 million to 11 cities. With emphasis on development of Chapter 8 - Support Services 8-17 in-home and community-based care, each city will receive approximately $1.6 million over four years. Some cities, such as Newark/Jersey City and Miami/- Ft. Lauderdale, applied together and have received additional funding. Overall goals of the RWJ grants include: 1) Developing and delivering essential medical support services to people with AIDS by helping to relieve the burden of care placed on many urban and public hospitals in the absence of alternative community-based care. 2) Demonstrating that appropriate care can be provided more humanely and at reduced cost through a coordinated effort. 3) Building a consortia of health care providers, institutions, public agencies, community and voluntary groups to serve AIDS patients through coordinated systems of care. These grants support the shared social responsibility concept, introduced at the Public Health Service Coolfont Conference, held in West Virginia in 1986, which calls for shaping a response to AIDS by involving "the coordinated participation of the public, private and voluntary sectors, as well as ambulato- ry, in-hospital and long-term care providers." The cities funded include: New York, Palm Beach County, Dallas, Newark, Jersey City, Atlanta, New Orleans, Nassau County, Miami, Ft. Lauderdale and Seattle-King County (See Resource Guide for a list of cities and contacts funded by the Robert Wood Johnson Foundation). All of these communities have built community coalitions and consortia and, as a result, many have identified special problems and needs that other- wise may have remained unnoticed. Many of these newly identified needs are those of special populations: minorities, women, children, teenagers, etc. Much of the response within the 11 cities will focus on case management and building a case management system. Specifically, the RWJ grants emphasize the development of: 1) Comprehensive, AIDS-specific ambulatory services which will bring improved diagnosis, earlier treatment and intervention, and reduced utilization of costly inpatient services. Such ambulatory clinics will also serve as a setting for needed research on the treatment of AIDS. 2) A range of home health and supportive services, primarily staffed by volunteers, to help with cooking, shopping, dressing and other basic tasks of daily living. 3) Nursing home and hospice services. 4) Case management services, usually provided by social workers or trained volunteers, to help patients and families navigate through the service and public benefits systems. 8-18 Volume 2 - Managing and Financing the Problem 5) Innovative education and prevention activities aimed at members of high-risk groups. This effort of the Robert Wood Johnson Foundation to supplement the needs of urban areas in providing AIDS services represents the first major response of the private sector to the epidemic. Unfortunately, the grant funds will stop after four years and other private and public funding sources will be needed to help these cities continue their innovative programs. 6. Conclusion Support services are critical in providing appropriate, compassionate and cost-effective care to people with AIDS. But in most communities these services are not available on the scale that is currently needed. Many of these programs and services take time to develop. They involve basic com- munity organizing strategies, including coalition building and extensive collaboration among existing agencies. While their case loads are still manageable, moderate and low-incidence states have an opportunity to learn from the experience of high-incidence cities and states, where support programs are cither already established or are currently under development. In developing support services, states should consider the following: 1) They should work closely with local communities and community groups in identifying local needs and planning services. 2) Support services should be viewed as an integral component of systems of care, to be most cost-effective. They can no longer be an afterthought. 3) The success of support services will depend on adequate financing from both public and private sources, overcoming politics within the local community and advocacy groups, incorporating the needs of special target groups (i.e, minorities and women) and providing effective training and education for providers. 4) Volunteers, most often through community AIDS organizations, have been the basic source of developing and providing support services. Some lower incidence areas lack a potential source of volunteers. Others, responding to large caseloads, may exhaust their volunteer pool. 5) State agencies and public service programs should be encouraged to develop additional and complementary AIDS services. States may need to offer incentives or mandate that workers deliver services to AIDS patients and HIV-infected individuals. 6) Most financial support for these services has come from the private sector (e.g., Robert Wood Johnson and other foundations) or from Chapter 8 - Support Services 8-19 7) private donations. These funds have no guarantee of continuing. Public funds will be needed to keep these services and their organizations functioning as well as to initiate projects in other major cities that were not fortunate enough to receive such grants. Areas that have not been sufficiently addressed include: mental health services, housing, day care and foster care (adult and child), nutritional programs, home care services, legal services, trans- portation and recreation programs, and patient benefits education. 8-20 Volume 2 - Managing and Financing the Problem INSIGHT ON: SUPPORT SERVICES Michigan The Greater Detroit Area Health Council received a $40,000 grant from the Michigan Department of Public Health in 1986 to build a coalition of hospitals, home health agencies, nursing homes and community organizations to develop and implement a comprehensive care system for AIDS patients. Key concerns in developing the plan were: 1) Case distribution Detroit has the second highest per capita rate of IV drug use in the country. While cases among this population have not increased significantly thus far, it is anticipated that they will increase and will require specialized services, many of which are not currently available. 2) Cost Approximately $22 million has been spent to date in Michigan to provide care for AIDS patients. Without appropriate planning to develop services, costs for AIDS-related patient care in southeastern Michigan will likely exceed $140 million by 1989. The plan recommends that a consortia of providers be established on a voluntary basis to offer services that include: ambulatory and inpatient care; acute care AIDS centers capable of providing needed tertiary services sup- ported by augmented payment systems; post-acute services in long-term care, hospice and home care settings; and formal case management activities to assure optimum utilization. Additional goals are to establish facilities dedi- cated to providing acute and long-term care services, and to enact legislation to define AIDS as a catastrophic illness that would allow AIDS patients to qualify for Medicare benefits. Massachusetts Identifying a primary nced for home care and support services, Massa- chusetts has allocated $400,000 to eight agencies to expand and augment already existing services. All of the agencies provide home care while some also offer hospice care. They will use the funds to add staff and increase services, in particular those not funded by Medicaid. Agencies will offer case management services, staff training and continuing education, transportation for staff who make home visits, home health services, as well as incentives-- including financial -- encouraging staff to work with AIDS patients. Some agencies will develop special programs for mothers and infants at risk for AIDS, such as homemaker and social work services, which are non- reimbursable under Medicaid. These programs are particularly critical, since Massachusetts’ nursing homes, as in many other states, have not taken AIDS patients. Chapter 8 - Support Services 8-21 CASE MANAGEMENT: A KEY TO COST REDUCTION AND QUALITY PATIENT CARE Case management is an innovative service delivery method evolved from social work practice to monitor patient care by matching patient needs with cost-effective, individualized services. While case management is based on a traditional medical case management model, various jurisdictions are beginning to rethink how this model may apply to AIDS. The case manager works with each patient and the family or personal support system to develop an individualized case plan. Often, this involves providing lower-cost home care services; maintaining the patient’s independence and autonomy for as long as possible; involving the patient’s family and friends in providing essential home care services; and training and paying family members to provide these services. Acute care needs may often be avoided or reduced considerably. Two features are essential to any case management system: 1) Developing a comprehensive system of care to meet each patient’s diverse needs. Workers need to be trained to reduce their personal fear and anxiety and to manage the specialized needs of AIDS patients. They will need to receive training in working with the diverse populations affected by AIDS, and some need to be recruited from those populations. These includes IV drug users, gay and bisexual men, ethnic and racial groups with cultural and linguistic differences. 2) Identifying and training case managers to make appropriate decisions about each patient’s medical and emotional needs. These managers work with the attending physician; contact medical consultants when necessary; serve as an informal resource for the patient, the family, or other loved ones about care alternatives; function as a liaison between the patient and specialized facilities and other providers; and help the patient reenter the social mainstream by identifying community-based support programs. Case management may be useful in helping care for AIDS patients since each patient presents individual medical and psychological needs. Patients have diverse support systems as well, ranging from the extensive involvement of family and friends to a lack of any support system. Since AIDS is incurable and medical treatment only addresses each specific opportunistic infection or clinical need, most of the care is palliative or supportive in nature, aimed at reducing patients’ suffering while providing for their basic human needs. Case management is highly flexible, suitable for the unpredictable complications that can arise during an AIDS diagnosis. Case management may also offer a useful model to care for ARC patients and individuals infected with HIV. But there is little experience to date in applying this care system to HIV-infected individuals. 8-22 Volume 2 - Managing and Financing the Problem As case management is increasingly adapted to AIDS-related conditions, organizational changes may occur. For example, Maryland is utilizing case management with a multi-disciplinary team, not an individual case manager, that assesses each patient. Traditionally, case management systems may be housed in an agency or community setting. But with AIDS patients who most often receive their diagnosis during hospitalization, case management may become centralized within acute care settings. While early data from studies of AIDS case management systems in San Francisco indicate that it is cost effective, and available data on other case managed catastrophic illnesses clearly support this claim, policymakers may be awaiting more substantial evidence before investing in the development of case management systems. The federal government is currently conducting a study to determine how AIDS care is being financed and how various services affect overall cost of care for AIDS patients. 9. EDUCATION What types of AIDS education programs should be implemented? How should they be funded? 1. Introduction In response to the estimate that by the end of 1991 almost 270,000 cases of AIDS will have occurred with 179,000 deaths, Surgeon General C. Everett Koop stated: "It is the responsibility of every citizen to be informed about AIDS and to exercise the appropriate preventive measures... With proper information and education, as many as 12,000 to 14,000 people could be saved" from death by the beginning of the next decade." The Public Health Service has asserted in its 1987 Information/Education Plan to Prevent and Control AIDS "that prevention is the only effective AIDS control strategy at present." Despite strong endorsement of education as the best way to curb the epidemic, state legislators are finding that AIDS educa- tion is a particularly thorny issue. The usual concerns about sex education-- the clash with community values and norms and the possible effects on personal behavior -- are multiplied many times over when it comes to AIDS. Even with these caveats, most states have initiated AIDS education programs for the general public and specific groups. In fact, more than three- quarters of the states responding to an IHPP questionnaire distributed for this report listed education as either a first or second priority when requesting further information on states’ initiatives. This includes both low-incidence states such as Arkansas and Mississippi, as well as high-incidence states like New Jersey and California. States have boosted their education efforts by increasing the budget and expanding the efforts of local AIDS organizations, community groups and health departments. In fiscal 1988, 24 states report appropriating more than $32.2 million in general revenue funds for AIDS education and information programs. In some low-incidence states where community AIDS organizations had not been previously developed, state health departments began fielding AIDS information calls and distributing AIDS fact sheets and brochures or publishing statewide newsletters on AIDS. In states with high-incidence cities such as San Francisco, Los Angeles, New York City and Boston, educational activities expanded from the strong involvement of local community AIDS organizations into a state-wide effort. In New York and California, extensive interaction between state and local levels has led to a clearer definition of the role and responsibility of each jurisdiction in funding and implementing AIDS education plans. Mandating Education Some states have legislated an educational response to the AIDS epidemic. Pennsylvania, Illinois, Maryland, Louisiana and Oregon have passed laws requiring that public information and risk reduction educational programs be 9-2 Volume 2 - Managing and Financing the Problem developed and funded for the general public. Maine established a committee to advise the health department on the content and dissemination of AIDS educational materials. California passed two laws, one requiring AIDS informa- tion and training to local school districts and the other training personnel and funding a media campaign on the ELISA test and the safety of donating blood. The District of Columbia, through the AIDS Health Care Response Act, required the mayor to develop a comprehensive AIDS plan including education and prevention programs. However, even without mandating programs, states find themselves developing and implementing AIDS educational programs. 2. Designing AIDS Educational Programs Assigning Responsibility: Guarding Local Prerogatives A central issue in initiating AIDS education efforts is determining the various levels of responsibility -- on the part of state and local jurisdictions, professional associations, community groups and social institutions -- for funding, implementation and content. The Maryland AIDS Task Force acknow- ledges a role for all agencies in this endeavor: "The Task Force firmly believes that education about AIDS and HIV infection is a shared responsibility. Everyone, including the state, professional associations, county and local governments, schools, community and religious groups, private business and institutions must develop effective educational programs concerning AIDS and HIV infection." However, assigning specific responsibility, especially with regard to public (school) education, is a particularly sensitive issue. Local jurisdictions guard their prerogatives to develop and choose school curricula. Yet, with AIDS, there may be limited curricula to choose from and a centralized effort to share resources may be necessary to develop accurate educational programs and to disseminate information. Other Strategies for Program Development States are developing educational programs for the public, schools, providers and special groups, using a variety of strategies: Coalitions and Community Networks. Coalition building is crucial in starting a state-wide AIDS education campaign. Many states, through their health department and contract organizations, work closely with state profes- sional associations, Red Cross chapters, universities, churches, community-based AIDS organizations and other community groups to develop specialized mate- rials, dissemination networks and referral systems for AIDS information. California has developed a program initiated by AIDS Project/L.A. (Cooperative AIDS Risk Reduction Education Service). A coalition of repre- sentatives from advertising, media relations, marketing research and health education developed a multi-media campaign for risk groups and the general Chapter 9 - Education 9-3 public. Activities include development and placement of radio, television, outdoor and print advertising, media relations, the production and distribution of educational materials and video programs, and market research. This program was presented nationally during a CDC-sponsored workshop at the 1985 annual meeting of the American Public Health Association. At least one state, Minnesota, is developing a similar state-wide campaign. Perhaps the clearest example of collaboration in response to AIDS is demonstrated by the 11 Robert Wood Johnson (RWIJ) AIDS projects, which required cities to develop an inter-community network of institutional, government and community alliances. Collaboration was a critical feature of eligibility; those jurisdictions that could not elicit cooperation of local agencies were ineligible to apply. Education is an important component of the RWJ projects. (These projects are described in the Appendix and in the chapter on Support Services.) Planning. Some states, including California, New York, Minnesota and North Carolina, have developed a statewide plan to coordinate educational activities. The plans include needs ents, program evaluation, outreach to special populations, INL os grn in conjunction with alternative testing, counseling protocols for education and risk reduction, media campaigns, work-place education, professional training, hotlines, and the development and distribution of educational materials. Other low-incidence states, such as Arizona, have initiated a county-wide education plan to address more localized needs, such as those that exist in Maricopa County (Phoenix). Michigan, in its 1986 AIDS Implementation Plan, cited three characteris- tics necessary for successful AIDS education policies and programs: 1) develop- ing appropriate education materials; 2) promoting and distributing these materials; and 3) providing quality assurance to evaluate the effectiveness of programs and materials. Conferences/Symposia. State-wide AIDS conferences have been held in Massachusetts, California, New York, Indiana, Maryland, Wisconsin, Kansas, Missouri and the District of Columbia. These conferences: identify resources for AIDS services; encourage collaboration between various agencies and groups; educate the public and health providers through media reports and conference presentations; and disseminate information. Missouri’s conference, which brought together diverse groups from several states, focused on col- laboration between health departments and community organizations. California has sponsored phone-in public health forums that relate the latest information on AIDS coordinated by the health department. These seminars are available to neighboring states such as Arizona, Nevada and Oregon to update public health providers and to share strategies and program information. Centralized Coordinating Bodies. Maryland, a state that has developed many innovative AIDS education components, is organizing a state AIDS Education and Training Center to coordinate these activities, in addition to offering an organized training approach for providers and personnel. This 9-4 Volume 2 - Managing and Financing the Problem gives a central focus and resource to local areas in planning such efforts. The Texas Task Force also supported development of a statewide, centralized information and referral network to coordinate services and information for people with AIDS. Alternate Test Sites. States with limited funding for AIDS education have centered much of their prevention activity around Alternative Testing Sites (ATS). Since almost all states offer alternative testing, opportunities exist within those settings to reach individuals who are at risk, even in states that have not developed any specialized education plan. States such as Delaware and New York have expanded educational programs at these sites through federal funding. Increasingly, though, states are using their general revenues to expand the activities of test sites. For example, a recent survey of state-only expenditures showed that in fiscal 1985, 12 of 30 reporting states had appropriated funds for ATS activities, while the number grew to 17 states for fiscal 1988. The Educational Message: Content and Consistency In preparing AIDS educational material, the controversial issue is how explicit the information should be in describing high-risk behaviors. This is particularly difficult when trying to reach individuals with different levels of education and cultural backgrounds, and those for whom English is a second language. The role of the state or local AIDS Task Force has often been one of approving the language and content of state-funded educational materials. States are also aware of the need to develop a comprehensive and consistent message. Many myths and misconceptions evolved before clearer, more consistent information became available. In an effort to standardize the message and deliver risk reduction information expendiently, some states such as Alaska have appropriated funds to reprint the Surgeon General’s AIDS report and distribute it to all house- holds within the state. BASIC CONSIDERATIONS IN PROVIDING AIDS EDUCATION o State policymakers need to acknowledge that anyone in the state is potentially at risk for AIDS. o The concept of risk groups, rather than risk behaviors, has led many people to believe that they are not at risk for AIDS. o Policymakers should recognize that education is perhaps the clearest prevention strategy currently available, although it raises many controversial issues regarding content, personal values and social norms. o Policymakers need to balance the need to present facts about sensitive topics to prevent the further transmission of AIDS against community and personal values. Chapter 9 - Education 9-5 o Policymakers must be clear about the goals of their educational efforts. - If the primary goal is to stop the spread of AIDS, then efforts must be targeted to subgroups most vulnerable to HIV antibody infection as well as to the general public. - It may be controversial, at best, to allocate state funds to support educational efforts targeted to subgroups. o The real political controversy regarding AIDS education is not as much whether education should be provided, but what the education- al message should be. o Local educational efforts need to consider that youth are exposed on a daily basis to explicit and implicit sexual messages through television, radio, advertising and print media. A decision not to offer AIDS education because of its need to explain sexual and other risk-promoting behaviors will not necessarily shield youth from these issues. o The common questions regarding sex education in schools is in what context should education be provided and what values should the material support. 3. Media Involvement Alarmist Messages v. Facts Ever since AIDS became an "epidemic," most public information about AIDS has been generated through local media. Some journalists and science re- porters who have taken special interest in AIDS have attempted to report the facts as they unfolded, without undo drama or emotion. Unfortunately, during the earlier years, much media information about AIDS was alarmist and vague. Media content did not address specific questions on transmission or level of contagion, leading many individuals to believe that they could contract AIDS from casual contact. Euphemisms such as "body fluids" were confusing to both health providers and the general public. Moreover, front-page articles on health care workers who contracted AIDS from apparent patient contact failed to follow up with stories on the additional risk factors that health care workers later reported, such as IV drug use and sexual contact with infected partners. In general, the media cither promoted hysteria or did little to correct the public’s growing fears of a mysterious, uncontrollable plague. Since 1985, when Rock Hudson publicly acknowledged his diagnosis, AIDS has appeared almost daily in headlines across the country. Language describing AIDS transmission and risk behaviors has become less ambiguous and more explicit. News features and supplements have augmented public health efforts to calm fears and to educate the public. 9-6 Volume 2 - Managing and Financing the Problem State and Local Collaboration At state and local levels, public health officials have begun to work more closely with the media, either to disseminate specific information or develop a broader, more cooperative approach. Advertisements, public service messages and television programs have resulted: o Many states, in particular California, New York, Pennsylvania, Washington, D.C., and Maryland, have used bus posters to target specific groups. o Public service announcements have been developed in many states, featuring government officials and local and national celebrities dispelling myths about AIDS. o New Hampshire is planning an AIDS conference for media represen- tatives. In conjunction with planning AIDS media seminars, Illinois is developing information kits for editors and reporters in the print and electronic media. The Iowa Public Health Department, with Radio Station KWWL, produced a brochure and sponsored a two-hour, statewide AIDS information program. Entitled "A Town Meeting: AIDS in Iowa," the broadcast elicited a positive response from viewers statewide. Media Responsibility The power of the media to create and dispel fears raises many issues about media responsibility and how to manage often highly technical and potentially alarming new information. Without a central clearinghouse on accurate AIDS information, the media becomes the primary vehicle for dissemi- nating information to the public and to individuals at risk for infection. Thus, public health officials should assume some responsibility to work with the media to disseminate accurate prevention information during this public health crisis. Health officials must be clear on what information they need to share and the media has to decide what information it will use. Ultimately, because of the importance of education in stemming the transmis- sion of AIDS, availability and uses of all types of media becomes a critical factor. Media can contribute by making their services available free or at reduced rates for public service messages. The media also shares some responsibility when an epidemic confronts society, especially one which touches on sexuality and high risk behaviors-- which the media has tended to glamorize. As long as the media continue to promote many products with sex, teenagers will receive subliminal messages in all targeted promotions about familiarized sex, and it will be difficult to communicate the fact that individuals may need to change their intimate behavior patterns. The media, which probably touches the minds of most people in the United States every day, together with public health officials, are responsible in the wake of the AIDS epidemic for ensuring: Chapter 9 - Education 9-7 1) Accurate information is available. 2) Important health information is made available in direct, simple, understandable language. 3) The messages are disseminated frequently in a variety of media to meet the needs of all population subgroups. Finally, if the media reflects our society, then the overpowering message of the media will need to reflect changes required to curb the AIDS epidemic. 4. Training Health Care Providers Responsibilities Education for health care providers is crucial because they, along with other professionals, are first responders in the war against AIDS. They assume responsibility: 1) for identifying high-risk individuals; 2) counseling them; 3) discussing options for testing; 4) possibly notifying contacts and counseling partners and family members; 5) diagnosing and reporting the disease to appropriate authorities; and 6) caring for them when they become sick or require help. The key policy question, however, is who should assume responsibility for training and educating health care providers. Should it be the government, the professional associations, or both? If both share the responsibility, who will assume the responsibility for developing the message, funding programs, and coordinating activities? At the federal level, the Health Resources and Services Administration has started a Regional AIDS Education and Training Center program; $1.9 million was appropriated for fiscal 1987 to help establish four centers at university research settings -- New York University, University of Washington, Ohio State University and University of California-Davis. Ten such centers should be in operation by the end of fiscal 1988. Their goal is to: 1) help train primary care providers to counsel, diagnose and manage HIV patients and their families; 2) train persons to serve as instructors in their local areas; 3) help health professionals to better understand AIDS. Emphasis is being placed on training physicians, dentists, social workers, emergency medical technicians and physicians’ assistants. The centers, designed to train 1,000 primary health care providers annually, will support the daily activities of these professionals by operating hotlines and providing a professional referral service. At the state level, agencies are suggesting that professional education is a shared responsibility of both public and private sectors, including professional associations and institutions, and have acted in this regard: o A number of states, including Maryland, Michigan, New Jersey and Illinois, have worked closely with state professional associations to plan and implement provider education programs. 9-8 Volume 2 - Managing and Financing the Problem o Most states surveyed for this report indicate that they have either initiated or are developing professional education campaigns. States reporting on special training initiatives for providers are: - Maryland, New York, Massachusetts, California, Michigan, Pennsylvania, Texas, Virginia, Utah, Iowa, Hawaii, Florida, New Jersey, Louisiana, Wisconsin, Illinois, Georgia, Indiana, Minnesota, North Carolina, Washington, Connecticut, New Hampshire and Nebraska. - Maryland has legislated a statewide program to train providers in treating and preventing AIDS. - Last year, California appropriated more than $6 million for an AIDS information campaign that includes professional training. Rationale for Training Health Care Workers Accurate and consistent professional training is critical in reducing workers’ fears as well as in providing appropriate patient care. The lines of authority in developing, funding and implementing professional training programs for AIDS have often been unclear. While most national health- related professional associations have considered public policy on AIDS that generally supports professional training, few have actually issued policy statements, and until this year no such association had sponsored a national professional meeting exclusively on AIDS. Most of the involvement of profes- sional associations in developing curricula, conducting seminars and training members has occurred on the state and local level. This trend will probably continue, since the need for professional training has most often been raised as a concern in offering direct service to people with AIDS and HIV infection. Initially, AIDS provoked fear and anxiety in most health care workers and public safety personnel. The body of knowledge in treating and managing AIDS was slow to evolve. Other than CDC guidelines, little published data was available for most providers, other than physicians, until 1984. Moreover, much of the content in professional literature failed to address some of the critical features of AIDS: o Many of the affected individuals in the U.S. were gay men and intravenous drug users -- populations that raised anxiety and often incited bias or conflicted with providers’ personal values. o The expertise in working with AIDS patients generally evolved in large urban areas in medical centers and teaching hospitals where the first patients were seen. Other facilities with few or no patients were slow to gain expertise and confidence in providing patient care. o Workers’ fears and anxieties were often minimized or disallowed, without permitting them sufficient opportunity to confront, express and process irrational fears and myths about AIDS. Chapter 9 - Education 9-9 o As the information on AIDS increased, the incubation period was reported as extending for up to five years or more following exposure, far more than the two years originally reported -- a development that caused great anxiety for workers who handled patient specimens and body fluids (especially before the introduction of the HIV antibody test that can indicate when an infection has occurred). o Much of the initial training was offered only to identified "profes- sionals," i.e., physicians, nurses, social workers -- not to ancillary staff such as attendants, phlebotomists, or home health aides who also had significant direct patient contact. o Knowledge of the disease and virus is constantly increasing, causing workers to question at times the validity of the information they are receiving, despite assurances from CDC. In addition, reports of infection among isolated cases of health care professionals (four such cases have been reported since April 1987) have kept concern high -- even though these cases were unusual, and the workers who were reportedly infected from handling contaminated specimens essentially failed to practice the recommended infection control guidelines. Content of Training Messages Who should develop the content of AIDS-related training messages? How should personal values and biases be addressed? Initial evaluations of professional training sessions have demonstrated that training has allowed workers to reconsider their biases, put them in perspective, and understand how they may affect patient care. Various studies are gathering data on the knowledge, biases and fears of health care providers, especially physicians. Beginning in mid-1987, the American Medical Association (AMA) is collaborating with CDC on a national survey of physicians to identify areas where professional AIDS training efforts should be targeted. Earlier studies of physician knowledge and attitudes toward working with AIDS patients have indicated the prevalence of harsh judgments and less willingness to even engage in conversations with AIDS patients by physicians (Kelly, et al, 1987), as well as limited knowledge in diagnosing AIDS conditions, with lack of concern for key features of the HIV antibody test, including test specificity and the potential for false positive results (Lewis, et al, 1984; 1987). To begin answering some of the basic questions of physicians, the AMA published in July 1987 a two-volume guide, "Information on AIDS for the Practicing Physician." Since many workers lacked either initial or sufficient training, discrimina- tion has occurred fairly frequently in the service of AIDS patients and their families. Two states in particular, Maryland and Texas, have recognized this link between lack of training and discrimination and have recommended state- wide professional education programs. Both states have also recommended specialized AIDS training for attorneys and judges. 9-10 Volume 2 - Managing and Financing the Problem Beyond incorporating basic AIDS information, including infection control guidelines and risk-reduction practices, into the training curricula, the Mary- land Task Force recommends that physicians and other health providers be trained in counseling techniques and ways to maintain confidentiality, as well as in ways to provide appropriate systems of care, referrals and community services. Some states have focused on certain workers, disciplines and areas of practice. Many have developed specific programs for physicians. Working with the Academy of Medicine, New Jersey developed a continuing education program for hospitals, health care facilities and other provider organizations. The Texas Task Force recommended that legislators provide "appropriate incentives" for the 26 Texas universities and colleges that train health care providers and educators to incorporate information on HIV infection into their curricula. Colorado’s legislature has mandated the state Department of Health to "prepare and disseminate to health care providers circulars of information and presentations describing the epidemiology, testing, diagnosis, treatment, medical, counseling and other aspects of HIV infection." (For other special- ized training programs in New Jersey and Michigan, see the Insight Section in this chapter.) Funding Provider Education Even though education of providers is viewed by many states as an important priority, funding is still an issue, especially for states with limited resources. States may have to extend limited allocations for education by relying on other public and private funding sources. For instance, in other AIDS program areas, states have often been given seed money, funded pilot projects and incorporated special project needs into federal grant applications. Increasingly, states are working with private foundations and state professional associations to fill other funding gaps. The federal government, as seen from the HRSA training program described above, is also beginning to provide resources for states to help educate health care professionals. 5 Educating Special Populations Because AIDS has disproportionately affected a number of special groups that have often been underserved, AIDS has compounded existing problems of access and service delivery. Education to special populations is critical to interrupt the epidemic and to offer much-needed services in culturally sensi- tive, appropriate ways. In developing these programs, the questions for policy- makers become: How should AIDS educational efforts be targeted to hard-to- reach populations and groups at increased risk of HIV infection (i.e., because of special status, lack of information, behavioral practices or isolation from the mainstream)? Who should develop education materials for these groups? How much of the education effort should be allocated for special populations? In considering groups that are disproportionately affected by AIDS, it is important for state policymakers to note the following CDC case information: Chapter 9 - Education 9-11 o Gay men and IV drug users still comprise approximately 90 percent of reported cases of AIDS in the U.S. o Women comprise 7 percent of all reported cases in the U.S. o Children account for over 500 reported cases of AIDS, but by 1991 experts predict they will number 3,000 cases. o Minorities account for approximately 40 percent of all adult cases of AIDS (blacks 25 percent and Hispanics 14 percent). But these groups represent only 12 percent and 6 percent of the U.S. popula- tion, respectively. o Among women, blacks and Hispanics represent 51 percent and 21 percent, respectively, of all reported female AIDS cases. o Among children with AIDS, 58 percent are black and 22 percent Hispanic. The national incidence among black children is 15 times greater than among whites and nine times greater among Hispanics. For these reasons, many states have developed programs and educational materials for IV users and their sexual partners, and others are beginning to address the educational needs of women and minorities of color (blacks, Hispanics), in addition to expanding or continuing to fund educational activities for gay and bisexual men. Programs for IV Users and Their Partners Educational programs for IV users tend to be multi-faceted, using resources in methadone treatment centers, alternative testing sites, clinics, media, community groups and street outreach facilities. States such as New York and New Jersey have developed more compre- hensive programs since they have a higher number of infected IV users. New Jersey’s programs are discussed in greater detail in the chapter on Medical Care. The New York State Division of Substance Abuse Services has estimated that 50 percent of IV drug users have already been exposed to HIV and are probably antibody positive. Other states, like Michigan, aware that AIDS infection among IV users will surely increase (Detroit has the second highest per capita incidence of IV drug use in the country), are developing special programs. California, through its Department of Alcohol and Drug Programs, has developed outreach activities for IV users as well as more general programs on AIDS and addic- tion. In addition to increasing services in methadone clinics and funding street outreach services, California initiated probably the first specialized program on AIDS and addiction through the UCSF AIDS Health Project in a program that provides professional education to substance abuse workers, intervention services and publications. Data from the project has helped develop services for chemically dependent at-risk individuals, many of them gay men. 9-12 Volume 2 - Managing and Financing the Problem New York has a state substance abuse program that combines: 1) Research to establish storefront AIDS education centers in high drug use areas, mobile vans and street worker teams to provide outreach services, and follow-up research on effects of education, counseling and testing on users. 2) HIV counseling and testing centers to deliver education in conjunc- tion with education centers. 3) Additional AIDS Task Forces for the Bronx, Brooklyn and Queens, with culturally appropriate services. 4) Targeted education campaigns for users and their sex partners, in- cluding users in and out of treatment, as well as those at risk for beginning IV drug use. In most settings where IV drug-related AIDS programs are offered, the educational materials and approaches are culturally sensitive and use language appropriate to-the target groups. Additionally, most programs employ former IV users as street workers and consultants. Gay and Bisexual Men Most of the targeted risk reduction efforts for gay and bisexual men have evolved from grass roots education projects developed by a few of the earliest community-based AIDS organizations. Groups such as Gay Men’s Health Crisis in New York City, the San Francisco AIDS Foundation, Baltimore HERO and AIDS Project/LA developed brochures, videos and risk reduction training guides that were later adapted for regional differences and for the special needs of developing community AIDS programs throughout the country. While most of these educational programs originally did not have an evaluation component due to limited funding, many AIDS organizations were able to add program evalua- tions, needs assessments or behavioral surveys to determine the effectiveness of their strategies. As with other programs geared to special groups, these materials for gay and bisexual men are culture and language specific. An issue for some state legislators and policymakers in funding these targeted materials often has been the use of explicit language, condom distribution and the positive messages about sexual activity that this particular set of materials tends to give. Initially, in most states, specific projects were funded by community donations and not with state or local funds because of these concerns. Today, more states fund special outreach and education to gay and bisexual men, usually through the local community-based AIDS organization (See Exhibit 9-1 for a map of states that fund these community AIDS organizations). AIDS STATES THAT FUND COMMUNITY EXHIBIT 9-1 BASED AIDS ORGANIZATIONS TO PROVIDE AIDS EDUCATION ——— E r——da / ] ee" == = / i i A wo = i | i i EJ + A ~~ | Sid uoky = J [NEWS —r re Loom sii 7 - { om OKLAHOMA Lemme ra > TEXAS = Limiais 5 TENNESSE i ; : £ EE «LT CAROLINA™ I ’ TRABAMA, GeoraiA\. / i Aussissiery €FToR SOURCE: AIDS: A Public Health Challenge Intergovernmental Health Policy Project The George Washington University, 1987. uonjednpy - 433dey) £€1-6 9-14 Volume 2 - Managing and Financing the Problem The increasing collaboration between state health departments and the gay community-based AIDS organizations is exemplified in an excerpt from Indiana’s AIDS Prevention Plan: "It must be noted that significant educational efforts have been underway for some time within the gay community itself, and the Indiana State Board of Health (ISBH) has recently provided direct support to the production of culturally sensitive printed materials. It is hoped that the gay community will continue to provide a major educa- tional effort with gay citizens, given the importance of source credibility to effective communication of health information. Additional effort will be made to build and maintain communication lines essential to promoting an effective educational process in this most heavily affected of all risk groups." Some lower-incidence states have utilized federal funds for prevention and risk reduction programs (the Health Education and Risk Reduction Grants) and alternative testing to target gay and bisexual men with AIDS education. California and New York, in particular, have funded comprehensive risk reduction programs, including media campaigns and focus groups for sexually active gay and bisexual men. The District of Columbia is adapting a similar format, developed by the Stop AIDS Project in San Francisco, for use with gay and bisexual minorities. Examples of other state-initiated projects, specifically Safer Sex/Healthy Lifestyle Workshops and an educational pilot project (the Home Safe Sex Skills Workshop), are being developed in Washington and Texas. Over the last two years, various studies have documented a decrease in venereal disease among gay men in high-incidence cities -- evidence of the effectiveness of the safer sex educational campaigns. In San Francisco, the Stop AIDS project is closing its doors, apparently marking the first time an AIDS organization has gone out of business because its work is done. The decision to close the project is based on three studies of significantly reduced rates of HIV infection among gay men in San Francisco in 1986. A study conducted by the San Francisco Department of Health, for example, found that less than one percent of gay men in the city became infected with HIV in 1986. This is in sharp contrast to an annual infection rate of more than 18 percent before the department and gay community initiated broader AIDS education efforts in 1983. Most recently, data from the federally sponsored hepatitis B study in San Francisco, undertaken in the 1970s with a gay male cohort, has also docu- mented a significant decrease in the number of sexual partners and a decrease in high-risk behaviors. These significant behavioral changes indicate that risk reduction education does have an impact on target audiences where culturally relevant materials are used. It may also show the importance of having the material emphasize the vulnerability of the group. Chapter 9 - Education 9-15 However, it is important to note that most of this information was targeted to white gay men and the decrease in the rates of STDs appears to be higher among white gay men than among black gay men -- suggesting that more highly targeted risk reduction efforts must be provided for nonwhites. Women Though women are clearly at risk for HIV infection and can transmit the virus to their unborn infants as well as to their sex and needle-sharing partners, few programs have been developed and funded for women as a group. Some states have begun printing brochures for women that are often dis- tributed through family planning clinics. Minnesota is developing a protocol for workers in family planning clinics to identify and counsel high-risk women. States that have programs for IV drug users offer education to female users and to the female sexual partners of male users. Nevertheless, few com- prehensive prevention programs have been developed for: o Heterosexual women at risk. o Female partners of IV users. o At-risk mothers. At present more than 2,500 women have been diagnosed with full blown AIDS, most of whom are concentrated in New York City, New Jersey and Florida. According to data presented at a conference on women and AIDS in New York City, AIDS is the leading cause of death for women 25-29 years old, and in New York it is the second leading cause of death for women ages 30-34 and the third for women ages 15-19. As with early AIDS education efforts coordinated by gay men primarily for gay and bisexual men, a very small number of grass roots education and service programs for women have been developed and are supported by com- munity groups in New York, Atlanta and Washington, D.C. Women are an overlooked minority when it comes to targeting AIDS education and providing special services. The only comprehensive state-sponsored program in the country identified for this report is the Women’s Program of the San Francisco AIDS Foundation, jointly funded by California and the city of San Francisco. The program offers general education activities to prevent maternal and heterosexual transmission, conferences, counseling and support services, specialized educa- tion materials, referral manuals, and professional education. The program targets female inmates, IV users and sexual partners, and has developed minority coalitions to reach ethnic and racial minorities. A campaign encour- aging heterosexuals to use condoms is being prepared for print and electronic media, using bus posters printed in English and Spanish. Minorities The areca of minority AIDS services has received increased attention over the past year, partly as a response to CDC’s statistics that minorities are at high risk for HIV infection. The National Institute of Mental Health has 9-16 Volume 2 - Managing and Financing the Problem supported the development of a National Minority AIDS Council, with partici- pation of minority AIDS providers at AIDS conferences and forums. This, in turn, has stimulated greater awareness, resource sharing and minority program development in various communities. On a state level, the earliest efforts to provide culture-specific preven- tion information to minorities occurred in California and New York with the development of targeted materials and brochures by community AIDS programs. Beginning in 1984, inclusive outreach efforts evolved in Pennsylvania, Maryland and Washington, D.C., through minority programs in community-based AIDS organizations located in the higher-incidence cities of Philadelphia, Baltimore, and metropolitan Washington, D.C. Minority AIDS education in Pennsylvania is funded by private donations through the Philadelphia AIDS Task Force, the local community AIDS organization. Maryland and D.C. have provided govern- ment funding for these activities. Maryland has increased networking and awareness through involvement with local black groups, in particular the NAACP, church groups, neighborhood groups and the black media. A Maryland conference on minorities and AIDS held last year focused on service and educational needs. In Los Angeles, the state-funded Minority AIDS Project has undertaken a broad education campaign to reach black gay and bisexual men by building an extensive network with traditional black organizations and church groups. Funding has been obtained to assess education and service needs for AIDS within the black community. Minority AIDS programs, including community organizing, education and some services, are coordinated in Pennsylvania, Washington, D.C. Maryland, New York, California, Illinois, Ohio and New Jersey. Programs are also under development in Michigan, Indiana and North Carolina (see Exhibit 9-2). While Florida has not established a minority AIDS program, minority communities are targeted in the state’s general AIDS education efforts. Some programs, such as Ohio’s, target women and adolescents. Many community-based AIDS programs have developed coalitions with minority groups to help prepare culturally sensitive materials and translate them into ap- propriate languages. A community needs assessment in Florida, for example, has been disseminated in English, Spanish and Creole. Given the high incidence of AIDS among minorities, this is an area in which states will need to provide more services and funds. With this in mind, California plans to target 25 percent of next year’s budget in educational programs to reach minorities. IDS STATES WITH MINORITY AIDS EXHIBIT 9-2 EDUCATION PROGRAMS HING To =~ 4 GToN "1 9~.. oJ i Toons ~- —_— a / wn em n el J wp. imeem annel oy : NORTH DAKOTA © aor, . 0, ! 3 ! IMINNESOTA “*Ns* eGo" -4 | \ ! oan, : | Cs Sm [SOUTH baroTA "3 | \.a y WYOMING ——— + | ALES; ~. | | i RNI4 tind i : Nevapa~t I ! em 4 = Mim———- \ IOWA —_— uta : NEBRASKA 4 —_— t COLORADG —-q [27 yy i ~ I ses i \ i — er } i I c— wel Liisi = AE\NesSEE femme . ..5.CAROL i f= KR onan, I ! ! : ~ “a, { : Legend Program in place SOURCE: AIDS: A Public Health Challenge Intergovernmental Health Policy Project The George Washington University, 1987. Program under development uonyednpy - ¢ 133dey) LI-6 9-18 Volume 2 - Managing and Financing the Problem Community-Based AIDS Organizations Since 1982, in states such as New York and California, organizations like the Gay Men’s Health Crisis and San Francisco AIDS Foundation have devel- oped and coordinated risk reduction and prevention activities to people affected by AIDS and to the general public. Initially, these organizations that evolved as a grass roots effort were entirely run by volunteers and funded through private donations. They were staffed largely by gay volunteers who identified early on that education and support services were urgently needed by individuals at-risk for and affected by AIDS. Soon, these organizations began to expand and to seek city and state funding. These organizations became the cornerstone for their communities’ response to the AIDS epidemic, especially when no other activity was available. They provided initial AIDS education and services exclusively in most of the cities and states where they developed. In November 1983, California was the first state to fund AIDS education efforts through the San Francisco AIDS Foundation. Since that time, more than 250 community AIDS organizations have been established to provide education, counseling and support services nationwide. However, only 18 states, including Washington, D.C., formally fund their primary community based AIDS organization; more groups may receive city and county funding, though still only a small percentage of these organizations receive government funds. States that currently provide funding to community AIDS organizations are shown in Exhibit 9-1. These states fund AIDS education efforts through community AIDS organizations. This can range from managing the state AIDS Hotline, as Illinois does through the Howard Brown Memorial Clinic, to funding a risk reduction education program targeted to gay men, as the Texas Department of Health provides through the Oaklawn Counseling Center. Since community AIDS organizations have established credibility within the gay community, most states that provide funding to these organizations do so for specific outreach activities to gay and bisexual men. In California, New York and the District of Columbia, these organizations also receive funds to provide services to other groups, including IV drug users and heterosexual partners of at-risk individuals. A significant factor in the development of community AIDS organizations and service programs has been the early organizing influence of the National Lesbian and Gay Health Foundation and community organizers affiliated with lesbian and gay caucuses within the major professional associations. Since the early 1970s, lesbian and gay health providers have worked extensively to organize health care services and clinics for lesbians and gay men. Beginning in 1978, these professionals have met annually at a National Lesbian/Gay Health Conference in major cities where AIDS was initially identified as a condition that significantly affected gay men. These providers used the annual conference to share information and prevention strategies and to influence public policy. In 1982, the first National AIDS Forum was held, and five subsequent meetings held in conjunction with the National Lesbian/Gay Health Chapter 9 - Education 9-19 Conference have shaped the program and policy response of the gay community to the AIDS epidemic. Several features are significant in these efforts: o The National AIDS Forum enabled gay health providers to share information on AIDS education strategies and programs. o Through the National AIDS Forum, professional education was offered consistently to gay health providers who: a) informed their local gay community that they were at-risk for AIDS. b) participated in the development of local community AIDS or- ganizations using a shared knowledge base of evolving models, programs and protocols. This experience is important for policymakers in realizing that AIDS education and services have been offered within the gay community for the past five years. The fact that rates of STDs are falling significantly within this population indicates that these comprehensive, highly-targeted educational efforts are successful in reducing risk, though more specific efforts must still be targeted at minority gay and bisexual men. PHS, in its recent AIDS Information/Education Plan, makes an important connection in underscoring the value of AIDS prevention strategies: "Know- ledge about AIDS has already proved to be effective in changing behaviors among gay men. The effectiveness of information/education programs, however, remains to be demonstrated in populations whose members have not been as personally touched by AIDS and who do not perceive themselves to be at risk." In developing educational programs for other subgroups in the population, a few key strategies should be considered: o The need to involve members of each community in developing "relevant" educational programs. o The need to organize each community, or help each community organize themselves, so that they are receptive to AIDS education and feel some degree of vulnerability which will encourage them to follow prevention guidelines. o The need to train health providers and leaders in each community so that they can encourage participation in programs and services. 6. School-Age Children and Teenagers (Sex Education and Educating) AIDS education for school children has raised some of the most con- troversial policy debates thus far. After the Surgeon General’s Report in 9-20 Volume 2 - Managing and Financing the Problem November 1986, which recommended AIDS education beginning at the lowest grade possible, a flurry of response issued from boards of education, Parent- Teacher Associations, health educators, public health officials and the federal Department of Education. Content and curricula were at the center of the controversy. Sex education in schools is a long-debated issue. Nevertheless, more than three fourths of the nation’s school children who live in major cities receive some form of sex education through required courses, according to the Alan Guttmacher Institute. In general, sex education is a local concern, varying widely from one community to the next. In fact, few accurate statistics are kept on which districts offer sex education courses and what the content is. A national directive that supports the Surgeon General’s recommendation was issued in 1980 with PHS’s publication of "1990 Objectives for the Nation." Though AIDS was not an issue at the time, the report states: "By 1990, every junior and senior high school student in the U.S. should receive accurate, timely education about sexually transmitted disease." Prior to 1987 at least nine states -- California, Iowa, Maryland, New Hampshire, Ohio, Oregon, Texas, Utah and Wisconsin -- had laws mandating or permitting STD education in the public school system. During the 1987 legislative sessions, an increasing number of states passed or considered legislation mandating AIDS-specific education in the schools. Nine other states -- Colorado, Florida, Indiana, Louisiana, Nevada, North Carolina, Oregon, Oklahoma and Rhode Island -- passed laws with AIDS-specific mandates or mandates regarding sex education. The mandates differ as to which body has responsibility to develop curricula, the content of educational programs, the amount of parental involvement, and the amount of discretion given local boards of education in adopting or developing the curricula. Three state boards of education -- in Alabama, Kansas and Pennsylvania -- have also adopted formal policies concerning many of the same topics. Responsibility A central question in planning any AIDS education program is: How should the responsibility for educating school age children regarding HIV infection be shared by public agencies, social institutions and families? Separating out the roles of public institutions and the rights of parents over who will educate children on public health issues becomes more complex when sexuality is the subject. Some parents may prefer to educate their children at home and, in doing so, not permit their children to take sex education classes. With a sexually-transmitted disease that is, at present, untreatable, it is unclear to what extent parents will be able to control the messages their children receive and to what extent the government must provide some baseline prevention information. Most of the recently passed state legislation either allows the parents or guardians to inspect the instructional materials before the course begins or allows them to exempt their child from the course. But the laws vary as to Chapter 9 - Education 9-21 whether local boards of education or the state board, in conjunction with the state department of health, should develop the AIDS-related curricula. Florida, Nevada, Louisiana, Oklahoma and Pennsylvania leave much of the responsibility to the local level. Alabama, Colorado, Indiana, North Carolina, Oregon and Rhode Island leave initial responsibility at the state level, with local boards maintaining some discretion in adopting the curricula. Message/Curricula Obviously, parents are concerned as to how and with what messages their children will be taught about AIDS. For them, the issue becomes: How should curricula address sex education and personal value systems and at what ages should AIDS education be provided? Most states that have begun to deal with AIDS have generally endorsed the concept of public education and the need for a prevention message to be given to youth. Curricula were slower to develop, with Ohio introducing one of the earliest programs in the fall of 1985. Since that time, at least 17 other states, according to the National Association of State Boards of Education (NASBE), have developed curricula, training guidelines and standards. These include California, Connecticut, Delaware, District of Columbia, Indiana, Maine, Maryland, Massachusetts, Michigan, New Jersey, New Mexico, New York, Ore- gon, Pennsylvania, Rhode Island, Washington and West Virginia. Other states, including Hawaii, Kentucky, Mississippi, Nebraska, Nevada, North Dakota, North Carolina, Oklahoma, Virginia and Wyoming, are developing materials. A recent survey of the 73 largest school systems and 25 state school agencies conducted by the U.S. Conference of Mayors also indicates the high level of activity and interest in AIDS education in public schools. According to the findings: o In addition to state activity, 40 school districts currently provide AIDS education and 24 are planning programs. o Most AIDS education is at the junior and senior high levels. Ninety percent of districts responding currently provide AIDS education in the 10th grade, followed by the 7th grade (63 percent) and 9th grade (60 percent). Very few respondents currently provide AIDS education to elementary school children. o Forty-five percent of reporting school districts require parental permission prior to teaching students about AIDS. o Eighty percent of the reporting school districts have worked with or are currently working with the local or state health department in AIDS program development. o All existing programs discuss means of transmission. Seventy-eight percent mention abstinence from sexual activity and 70 percent discuss avoidance of high-risk sexual activities, selection of sexual partners or use of condoms. 9-22 Volume 2 - Managing and Financing the Problem Perhaps the greatest debate on curricula focuses over how explicit lan- guage should be and how issues like contraception and premarital sex should be discussed. The latter issues are ones which many people believe should be put in some form of moral context or taught in relation to a special values system. While some parents have called for a value-free sex education program, a recent Time-sponsored poll on AIDS education in schools reported that 58 percent of the respondents felt that it was impossible to teach sex-related issues without discussing morality. For the most part, states that have passed legislation on AIDS education in the schools have emphasized the importance of sexual abstinence in preventing the spread of HIV infection. However, given the preoccupation with sexual abstinence, fewer states -- they include Alabama, North Carolina, Oklahoma and Pennsylvania -- have specified that their instructional materials should also emphasize the importance of abstinence from illicit drugs -- which are a direct route of HIV transmission, and one likely to occur among youth. Colorado, Florida, Nevada and Oklahoma also stress the need for instructional materials to be factually or medically correct. This implies the need to use correct medical terminology in discussing AIDS or other sexually transmitted diseases. According to NASBE, 15 states report that they have developed com- prehensive health education programs that place AIDS education within a broader framework. For example, Florida’s law states that AIDS education should be part of a more comprehensive health education curricula; Rhode Island’s law requires that AIDS education be made part of the existing family life and sex education programs; Nevada’s law mandates that AIDS education should be part of a broader sex education program that stresses sexual responsibility; Kansas’ policy requires AIDS education to be part of a broader family life and human sexuality curricula. Kansas has also adopted innovative provisions for encouraging active parental involvement in educating school children about AIDS. The Kansas Board of Education has requested all local school districts to "provide for parents, on a volunteer basis, an education program which includes human sexuality. Such a program ..(should help parents seek) a better understanding of human sexuality so that they can more effectively counsel and communicate with their own children." Other states have taken a far more restricted view of an AIDS-related curricula. Indiana’s law mandates that any AIDS-related literature for young adults must stress the "moral aspects of abstinence" and that the "best way to avoid AIDS is .. to refrain from sexual activity until (they) are ready as adults to establish, in the context of marriage, a mutually faithful monogamous relationship.” Despite this language, the law does not restrict what additional information may be used in the curricula. In contrast to Indiana’s mandate, Louisiana’s legislature, in providing for sex education in public schools, states that "it is the intent of the legislature that ‘sex education’ shall not include religious beliefs, values, customs, practices in human sexuality nor the subject- ive moral and ethical judgments of the instructor or other persons." Chapter 9 - Education 9-23 Obviously the range of opinion regarding AIDS-related instructional programs varies widely from state to state. As more school systems develop curricula, these issues will continue to be discussed and remain difficult to decide. Policymakers, school boards, health officials and parents will need to decide if AIDS education must be placed in a specific context -- and, if so, in what context, and based on whose values. This decision will have to be balanced against the need to present factual, direct material that will help youth understand how to prevent transmitting the AIDS virus. 7. Conclusion Virtually all experts agree that, until medical treatments or cures become available, education is the only way to prevent AIDS from spreading. Even with testing, the primary benefit is the counseling and educational message received before and after the test. But education can be a politically divisive issue for any community or state; it has the potential to become more so when sex education and AIDS is added to the agenda. A review of state policies and programs points out several key concerns: o Public Education and Media. AIDS education for the public must be comprehensive, factual, consistent, understandable and direct. With the potential of reaching a significant proportion of the population in each state and the capacity for shaping public perception and popular culture, the media can play an important, even crucial, role in educating the public. Yet few states have enlisted the media in this effort. o Provider and Professional Education. Since health care providers are essential in curbing the AIDS epidemic, as professionals who identify individuals at risk, counsel them about testing, diagnose and report conditions, treat patients, and serve as local community experts, their education must be comprehensive, consistent and ongoing. So should training for lawyers and social workers who help ensure access to care. While a number of states are working with state and local professional associations to disseminate information about AIDS and to help train their members, few jurisdictions have developed mechanisms to coordinate professional activities. Incor- porating AIDS education into licensing or training requirements may ensure a basic level of education, especially for subgroups of health care providers and other professionals. Massachusetts has begun to address these concerns through a statewide conference in April 1987. o Culturally Relevant Messages. To be effective, AIDS-related educa- tional materials need to be easily understood and meaningful to people from different cultural backgrounds or educational levels, including those who speak languages other than English. o Institutional Populations. States are responsible for educating institutionalized populations -- primarily the mentally ill, the mentally retarded, inmates and detainees (both juvenile and adult). Again, the AIDS-related message must be targeted to meet the needs 9-24 Volume 2 - Managing and Financing the Problem of each group. A relatively large number of states are beginning to educate their prison populations, but far fewer have developed educational programs for the mentally ill and mentally retarded. Children and Youth. There is a growing consensus, starting with the surgeon general, that children must be educated about AIDS and HIV infection before they become sexually active. Those who are sexually active also will need to know how HIV is transmitted. Many states are working with local school authorities to design curricula. But there is little coordination between the federal, state and local level in the development of curricula. Controversy remains strong regarding the content of these educational programs, as state and local officials try to create programs which balance personal values with the need to get public health information to children. Women. Education and services to women are underfunded and underdeveloped. Only one state, California, currently provides some matching funds for a comprehensive women’s AIDS program. Addi- tional funding is needed to develop AIDS education programs in high-incidence areas and to incorporate special services into existing programs for women. Funding. Most states are funding educational programs through Health Education and Risk Reduction Grants from the Public Health Service. State education funds are often directed to Alternate Test Sites to utilize the opportunity for one-on-one counseling to provide direct prevention and risk reduction information. Only one-third of the states fund community based AIDS organizations to provide general and targeted AIDS education. Overall, state and federal government continue to inadequately fund educational programs. Only California has matched the $5 per capita level recommended by the National Academy of Sciences for AIDS education. Chapter 9 - Education 9-25 INSIGHT ON: EDUCATION PROGRAMS Professional Training New Jersey Trains Drug Abuse Workers in Community Organizing Strategies New Jersey has 28 teams of AIDS coordinators and educators who provide services throughout the state. Since almost half of all AIDS cases in New Jersey are among IV drug users, the state has decided to train their state AIDS workers in community organizing skills. The need to develop such skills is essential in dealing with IV drug users because they often lack the ability to organize and focus attention on their own needs. To help address these needs, all New Jersey AIDS team members are trained at Rutgers University in community organizing strategies which are then applied within the community to improve their capacity to educate and reach IV drug users. The program has been very effective. From June to December of 1986, teams conducted over 700 individual sessions with at-risk individuals and held 273 family conferences, conducted 175 in-service training sessions and met with 163 community groups. Much of their activity focused on reaching sex partners of IV users and closeted gay men who use IV drugs. Michigan Funds AIDS Provider Education Program Under a $220,000 grant from the State Department of Public Health to develop a curricula for AIDS provider education, the Michigan State Medical Society convened an interdisciplinary task force that met from October 1986 through mid-January 1987. Under the plan that the task force developed, curricula and a training plan has been developed for provider groups -- physicians, nurses, dentists, home health workers, physical therapists, emergency medical technicians, funeral directors, laboratory personnel and other health providers. This program also will: 1) Establish a statewide speaker’s bureau. 2) Establish a statewide, toll-free information network. 3) Develop a challenge grant program with other state professional associations to develop additional expertise within each discipline. This grant will be matched by individual state professional groups. 4) Establish an Infection Control Review Committee to maintain consis- tent, statewide guidelines to help manage fear and gain worker compliance. Copies of the AIDS Provider Education Plan are available through the Michigan State Medical Society. 9-26 Volume 2 - Managing and Financing the Problem Train the Trainer: Maryland’s Center for AIDS-Related Educational Services (CARES) In response to the overwhelming need to coordinate requests for informa- tion on AIDS and control the burgeoning number of "freelance" AIDS profes- sionals and educators, Maryland’s AIDS program unit has developed the Center for AIDS Related Education Services (CARES). The program centralizes the education of trainers who, in turn, can educate others. Initially, the program will focus on training police, teachers and first responders (e.g., emergency technicians, ambulance drivers, etc.), who will go back to their organizations and educate others on AIDS and HIV infection. CARES will use slides, pamphlets and brochures in a core curriculum which will be coordinated with the Red Cross, HERO (the local community AIDS organization) and other providers with expertise in AIDS education and training. Organizations that decide to have their staff trained are responsible for the logistics -- arranging sites, scheduling meeting times, notifying par- ticipants, etc. The state is responsible for providing the curricula and referring the proper faculty for the meetings -- either drawing upon its own employees or on outside experts who may meet the organization’s needs. Persons completing the training program will receive certificates that qualify them to become AIDS trainers for their organizations. Updated materials and lists of resources will be provided to them, and their names will be placed on a list for recall to annual continuing education sessions, since information about AIDS is expanding rapidly. No state funds have been appropriated for the program. 10. RESEARCH Should research be a state responsibility? If so, why? What kind of research? and to what extent? 1. Introduction Until the AIDS epidemic, states had little role in sponsoring health research, leaving that responsibility to the federal government and private industry. In 1984, for example, states funded only $602 million of the nation’s $11.5 billion expenditures for health research and development. But AIDS has changed the research world. Some states and localities that have been affected disproportionately by the epidemic have begun to fund their own research. Currently five states -- California, New York, Massa- chusetts, Florida and New Jersey -- directly fund AIDS research projects. While this is still small compared to the $410.8 million that the federal government appropriated in 1987 for AIDS research and educational activities, the change in research roles brings new issues for state policymakers to consider. Do states have a responsibility to carry a share of the AIDS research burden? If so, should it be in the biomedical area -- as are most of the research activities of the five states that are described in this chapter? What about epidemiology studies and the states role in sponsoring additional research in the behavioral science area to review education and counseling programs aimed at changing high-risk behavior? How much money should states be allocating to evaluate the effectiveness of their outreach and educational programs? And, just as important, can states find better ways to disseminate the information and results of research to the public and those who will need it most? While there are many areas of research that may and should be of interest to states -- those involving program evaluations, epidemiologic studies, and some behavioral/educational research studies -- surprisingly, the biomedical arena is the one area to which a relatively large share of state research funds have gone. This chapter describes the new phenomenon. 2. Research in California Special Opportunities in Research Since 1981, California has taken the lead in AIDS research when physi- cians and scientists within the state first identified the syndrome. The state has been active in supporting a growing and thriving research program since then. During fiscal 1985-86, more than 60 research grants were awarded by the state in the following areas: basic science, virology, immunology, infec- tious disease, clinical epidemiology, clinical trials and descriptions of new clinical diseases. To date, basic science research has received the largest share. The focus of research efforts is now extending from biologic research to include psychosocial and economic issues -- anything that directly affects the AIDS patient’s life. California has placed great emphasis on addressing the 10-2 Volume 2 - Managing and Financing the Problem mental health aspects of AIDS. In addition, research on AIDS dementia is planned for state funding next year. Because of the size and breadth of California’s university system, the state has a solid base for investing in AIDS research. The traditionally positive working relationship between the state and the university places both in a position to lead the nation in AIDS research. Building on this foundation, California developed a strategy for merging its historical support of its university system with the most pressing needs of the AIDS epidemic. The state has funded Clinical Trial Centers at three University of California campuses: San Francisco, Los Angeles and San Diego. These centers are charged with testing new anti-viral, antibacterial, and antifungal chemotherapeutic agents and prospective vaccines. By funding such centers, California’s goal is to develop investigative teams, with adequate numbers of patient referrals and sufficient expertise in study design, statistical analysis, and pharmacokinetics, to conduct clinical studies yielding significant and meaningful results. Anticipating tremendous growth in this realm of research, state allocated funds will help California investigators and its university system be better prepared, not only to attract federal research grants, but to attract leading scientists and respected researchers in the field. California has also established a central laboratory facility at which blood analysis and virus isolation will be conducted to assist AIDS-related research. Centralizing these functions has reduced costs of laboratory tests and helped data collection for research. A recent program to support new AIDS investigators will offer a career development award of $50,000 per investigator. This program, modelled after NIH awards, will fund from 10 to 50 career development awards annually, starting with 10 awards in the first year of the program. These monies will be appropriated for salary support in order to provide the investigator with protected time to conduct AIDS-related research. Funding for long-term research will reduce the amount of time that senior scientists spend on writing proposals. The strategy here, as with the Clinical Test Centers, is to improve chances for California investigators to gain additional federal grants and awards. Another program yet to be developed is a research dissemination program. This will fund conferences to encourage exchange of ideas and information among scientists, and between scientists and those who can implement the research results. Funding California leads the nation in total state dollars devoted to AIDS research, with over $21 million cumulatively spent or committed through fiscal 1986-87. State-funded research has grown from $2.9 million in fiscal 1983-84 to $7.6 million for fiscal 1985-86 and now $9.6 million in fiscal 1986-87. Investigators affiliated with universities and non-profit research institutions received $4.2 million in fiscal 1985-86 for individual research projects. Chapter 10 - Research 10-3 Research accounts for almost 40 percent of the state’s total $55.6 million contribution for AIDS-related programs, not including treatment-related expenses. In addition to supporting individual research projects, California has been innovative in funding new ventures. For example, two pieces of legislation have been passed related to vaccine research. The first law allocates $2 million each to three commercial biotechnology companies, including defraying the costs of clinical testing for a vaccine -- the most expensive phase of drug development. Investment in vaccine research is expensive, including uncertain market size, costly clinical trials, and the risk of liability once the vaccine reaches the public. The state guarantees, however, to purchase one million doses, and to accept responsibility for injuries proved to have resulted from vaccine use, with recovery limited to $250,000 per case. Another California statute sets aside a $4 million pool for which small for-profit companies can compete to fund a variety of projects. A state board reviews grant applica- tions and the state would receive royalties for any profits made on the products developed from state monies. California has budgeted $500,000 for its central laboratory facility and $500,000 for career development awards for fiscal 1987-88. The operational funds for the central laboratory are expected to remain constant in real dollars, over the same period of time; however, the career development awards are scheduled to increase by $500,000 each year to a cap of $2.5 million annually. There are signs that California’s unprecedented increases for research may slow -- however, the legislature is still maintaining the relative impor- tance of sponsored research by allocating almost 75 percent of the total state increase in AIDS expenditures for fiscal 1987-1988 to research projects. For example, the legislature recently proposed increasing the $26.7 million base budget as recommended by the governor for all AIDS programs (not just research) by $22.4 million for fiscal 1987-88, but the governor vetoed all but $2.1 million of the proposed augmentation. However, $1.5 million of the $2.1 million is for the first phase of a $10 million project to add two floors to San Francisco General Hospital to establish an interdisciplinary AIDS research center. Management Issues In the spring of 1983, the legislature, with the prompting and assistance of a group of University of California (UC) faculty, launched an initiative that resulted in the augmentation of the university’s 1983-84 research budget by $2.9 million, designated specifically for research on AIDS. That same summer, the president of the University established the University-Wide Task Force on AIDS to manage state funds and to study how the university’s resources might best be focused on this critical issue. The University-Wide Task Force is the only recipient of state funds for AIDS research, distributing money to re- searchers within and outside the UC system. 10-4 Volume 2 - Managing and Financing the Problem While the nine-member Task Force represents the faculty of public or private research institutions in California who have experience in AIDS-related areas, they will neither receive or compete for these grants in a structure that is intended to maintain scientific integrity. Awards can be made to any non-profit research institution in California, all on a competitive basis. The process for making awards is relatively rapid, thus permitting maximum flexibility for addressing newly arising research needs. The Task Force conducts site visits to assess the activities and accomplishments of selected projects. It also funds conferences, educational presentations, and workshops on topics directly related to the research program. 3. Research in New York Special Opportunities in Research New York has the greatest number of people with AIDS in the country, and the largest number of IV drug users with AIDS, most of whom are concentrated in New York City. The state estimates that the rate of increase in diagnosed AIDS cases among IV drug users will be greater than for any other high-risk group in the state. To address this growing problem, the state has allocated $2 million for drug-related AIDS activities, part of which is allocated to the research arm of the State Division of Substance Abuse Services. The funding is to establish storefront AIDS education centers within high drug-use communities in New York City, which in turn will be used to evaluate the effects of the state’s target education, counseling and HIV testing programs for IV drug users. The city’s potential pool of research participants has been increased considerably by a number of gay men from New Jersey who have come to New York for treatment and service. While this places an added burden on service expenditures, it may help diversify the sample of participants -- by their clinical and related behavior patterns. Since New York began funding research, it has funded 58 research grants. State funds have supported research into such epidemiological issues as local differences in disease patterns, drug use habits and how infections affect different "risk groups." Research funds have also been allocated to a broad range of clinical investigations, such as potential risk factors associated with AIDS cases and the development of a serologic test for Pneumocystis carinii to provide early warnings of impending illness, thus allowing therapeutic interven- tion. The state is also supporting epidemiologic investigations of AIDS within its prison system. In the early stages of funding in 1984, emphasis was given to funding proposals that complemented the federal program of AIDS research. The strategy, similar to California’s and Florida’s, was to use state funds to help New York researchers access federal research funds. Last year the AIDS Research Council, the branch of the AIDS Institute that has responsibility for all state funded research (See chapter on Administration/Organization), Chapter 10 - Research 10-5 recommended that the state refocus its research on determining the natural history and epidemiology of the disease among seropositive individuals and on investigating the diagnosis and treatment of infections and malignancies associated with the syndrome. No funds were allocated to work on anti-viral agents. This approach differs from California, which supports a large quantity of viral research, especially around development of a vaccine. Because New York’s AIDS problem is rapidly escalating -- a greater rate than California’s-- its research priorities have been redirected to meet the immediate needs its AIDS population. These involve a very different range of behavioral, educa- tional and evaluation research issues. Funding Although New York has funded limited health-related research in the past, funding an entire program to support a specific area of research is unprecedented. Through 1986, New York State had allocated $8.2 million for research efforts, with $2.7 million in fiscal 1985-86. Research funding is a top priority for the state. In response to the increased demand for resources, Gov. Mario Cuomo and the legislature agreed to a $9.5 million AIDS expenditure plan for fiscal 1986-87, representing a 110 percent increase in research funding over the previous years, since one-third of this money is devoted to research activities. In 1984, the state evaluated 122 research proposals from the medical and scientific community, and 28 two-year research grants were awarded. In 1985, 15 grants were awarded out of 82 proposals. Most researchers received $100,000 to $300,000 for their two-year projects. New York has distributed funds to universities, private non-profit institutions and state-run research facilities. New York is not committed to funding state universities in any greater proportion that private universities, as is California. Management Issues New York was the first state to allocate state funds for AIDS research. As a management body, the AIDS Institute distributes funding rather than initiating its own research (See Administration). Two arms were formed to assist the institute -- an AIDS Research Council and an AIDS Advisory Council. The Research Council, composed of scientists and clinicians in AIDS- related fields, functions as a scientific review panel on behalf of the State Department of Health. It has eight members; six are faculty members of public or private research institutions in New York State, one is a private practi- tioner with many AIDS patients, and the other is a faculty member from The Johns Hopkins Medical School. 10-6 Volume 2 - Managing and Financing the Problem The Research Council is assisted by more than 90 outside peer reviewers, recommended by council members, who serve voluntarily. Their assessments of projects are forwarded to council members. Council members whose institu- tions submit proposals refrain from review of, and voting on, such proposals. All awards are made on a competitive basis. Only researchers affiliated with non-profit research institutions in New York State are eligible. Final decisions are made by the Research Council. All principal investigators have similar responsibilities to the council as California’s investigators have to their task force. Like California, the New York council supports conferences, pre- sentations, and workshops dealing with topics directly related to its objectives. Unlike California, New York’s final decisionmaking authority is invested in an expert panel, that includes representatives from various institutions and professional groups from throughout the state. This contrasts sharply with California’s system, where the final decisionmaking authority rests with the vice president of the University of California. Sometimes, this expedites the decisionmaking process. 4. Research in Massachusetts Special Opportunities in Research Massachusetts funded the non-profit AIDS Action Committee, Boston’s local community AIDS organization, for a year-long systematic evaluation of the impact of their educational programs on changing knowledge, susceptibility and sexual behavior. State-sponsored research efforts in Massachusetts currently are directed toward the prevention, cure and treatment of AIDS, and the protection of the blood supply. Twenty studies have been supported since Massachusetts began funding AIDS research in 1984. Prevention is separated into two areas: 1) prevention of occurrence, through development of an effective vaccine against the AIDS virus; and 2) prevention of transmission, by better understanding high-risk groups -- gay and bisexual men, parenteral drug users and their families, and the hemodialysis and hemophiliac population and their families-- in order to help individuals reduce the risks of contracting or transmitting AIDS. State-funded researchers are interested in investigating what factors motivate people to change their behaviors, especially the intravenous drug using population. Research is also directed towards the evaluation of the effectiveness of experimental antiviral drugs, and the development and screening of new anti- viral compounds. Funds have been awarded to assist the American Red Cross Blood Services to monitor blood donors found to be HIV positive. In addition, monies were given to gather information on the cost of providing services to patients with AIDS. As mentioned above, Massachusetts has supported research to examine the effectiveness of current educational approaches in preventing transmission of AIDS, an area that the federal government has been slow to fund, and research on how to keep caregivers’ attitudes, fears, and stresses from interfering with the quality of care they deliver to AIDS patients. Chapter 10 - Research 10-7 Funding Massachusetts has allocated over $3 million for AIDS research since funding began in fiscal 1984-85. The research appropriation has remained constant in each year at approximately $1 million. Research is one of two areas the legislature has targeted for receiving state funds; the other is a public education campaign for high-risk groups and the general public. Research consumes approximately 25 percent of the AIDS appropriation budget. Leading researchers at Harvard’s teaching hospitals and affiliated research centers have received a large portion of the allocation. The University of Massachusetts, a state-supported university, has received grants, as have scientists at Boston University, Boston City Hospital, and a large gay com- munity health center. A scientist at a private for-profit facility received funds to investigate the epidemiology among HIV positive hemodialysis patients. So far, Massachusetts has avoided investing in large equipment costs and lab facilities. Instead the state is investing in staff, utilizing existing facilities. Many of the state grants were given to researchers who were not receiving other federal funds for AIDS research. This approach is consistent with Massachusetts’ strategy to fund research on prevention efforts, an under- funded area of federal AIDS research. Management Issues In the summer of 1983, Gov. Michael Dukakis first convened his Gover- nor’s Task Force on AIDS, chaired by the Commissioner of Public Health. One year later, the legislature appropriated funds for Massachusetts researchers to investigate the cause, prevention, surveillance, treatment, and cure of AIDS. To ensure a fair allocation of these funds, the commissioner convened an AIDS Research Council. Totally separate from the Governor’s Task Force, this body consists of scientists with expertise in relevant disciplines and a few policy- makers and administrators who are appointed by the chairman of the council for a one-year term. The council’s charge is to solicit appropriations for funding and to make recommendations to the commissioner. In September 1984 proposals were solicited for state funding in AIDS rescarch by the Research Council in two general categories: 1) pathogenesis and treatment of AIDS; and 2) epidemiological, social, and behavioral factors associated with AIDS. Grants were evaluated and ranked by the Research Council. Funding was made available only to researchers affiliated with insti- tutions and organizations incorporated within the Commonwealth of Massachu- setts. Priority was given to projects which were anticipated to produce findings during the seven-month funding period. Only those researchers who received funding the first year were eligible for renewed funding the following year. No new proposals were sought or evaluated, as the re-search was of very high utility and quality, results were forthcoming with the promise of more in a short time, and the state had a limited budget for research. Of the 20 proposals funded the first year, only 13 were funded the second year, and 12 the third year. Each year approximately $1 million was 10-8 Volume 2 - Managing and Financing the Problem allocated. In February 1987, a new RFP was issued. New projects are about to be evaluated, while the funding of ongoing research will be reevaluated. 5. Research in Florida Special Opportunities To date, Florida has not funded any specific research projects. However, in preparation for this step, the state is funding three universities to upgrade their facilities to provide the highest level of protection against contamination. This will enable the laboratories to conduct viral isolation studies, thus placing them in a position to attract federal research money. Florida has the third highest number of AIDS cases in the country. The characteristics of people with AIDS in Florida invite inquiries to determine what, if any, unique factors may contribute to their high number of cases. In 1985, Haitians accounted for nearly 40 percent of all Florida’s AIDS cases. This gives Florida an additional charge -- to better understand the risks and risk factors faced by this population. In addition, Belle Glade, an agricultural community near Miami, has the highest incidence of AIDS in the country, prompting the Task Force to recommend an appropriation for a local study and to consider plans for further investigation. Funding Florida has never sponsored a health research project since most legis- lators and state officials believe that health research funding is a federal, not a state, responsibility. However, since federal research funding for AIDS is only trickling into Florida, a few leading clinicians and researchers took their case directly to former Gov. Bob Graham. Florida has yet to take a leading role in this issue, however. Nevertheless, Florida has allocated $450,000, to be evenly divided among three university teaching hospital laboratories, to upgrade their facilities to make the state more competitive in attracting federal research money. 6. Research in New Jersey Special Opportunities in Research New Jersey is the only state in which IV drug users constitute the majority of AIDS patients (52 percent). Consequently, it has the highest number of women and children with AIDS. Since many gay men from New Jersey have sought treatment in New York City participating in research projects that New York State funds, this has increased New Jersey’s proportion of AIDS patients who are intravenous drug users and their sexual contacts for research purposes. This factor provides New Jersey with a special opportunity to take the lead in studying these important areas. Chapter 10 - Research 10-9 Management Issues In New Jersey all AIDS-related activities are centralized in the Health Department and in the state universities. A private sector study commission is planned for New York and New Jersey to examine key ethical and public policy issues. All monies that the state has allocated are from general revenue ap- propriations, separate line item appropriations. The state has contracted with the Health Department, similar to the way in which Massachusetts and Florida have paid their researchers, to conduct the prevalence study. There is no solicitation for proposals at present, and therefore no system to evaluate research. 7. State Relations With Universities, Other Non-Profit Institutions and For Profit Industries The states that have eclected to fund research are fortunate to have a host of strong resources and facilities within their state. Each state has profited from matching local institutional talent with its specific needs for AIDS research. A state’s financial relationship with its affiliated universities provides a special opportunity for states to strengthen biomedical research within these universities. The budget line is a strong incentive for aligning universities’ goals with that of the state. The state university system provides a great investment for state funds. In this instance, the money stays within the same system -- and the state invests in itself. Furthermore, when good relations exist between the state and its university system, research programs can have greater flexibility than they might with private institutions, as the state and its universities have similar constituencies and fewer competing interests than with private institutions. In addition, governing officials will almost always select a known and trusted entity when they begin a new project that they want to succeed. Another advantage to funding university-affiliated research is the speed with which a large research program can be undertaken and coordinated. These factors played an important role in California’s decision to fund the UC system in AIDS research. This research program began in 1983, a time when very little was known about the disease. California wanted to respond as quickly as possible. State officials anticipated that it would take up to two years for the federal government to respond and to distribute funds for the AIDS research projects. Arrangements with private institutions might also have been as time consuming. Thus, the state opted for university-affiliated funding. Relying on Private Institutions In contrast, New York and Massachusetts serve as models for states whose private university facilities and resources for AIDS research surpass 10-10 Volume 2 - Managing and Financing the Problem those of the state universities. Both states elected to distribute their research funds among both state and private institutions. This is in contrast to California, whose three largest pockets of AIDS cases -- San Francisco, Los Angeles, and San Diego -- are represented projects with state universities. Working with Private Industry California has developed two creative and symbiotic financial arrange- ments with private firms. In exchange for the state’s acceptance of respon- sibility for liability, one initiative enables California to invest in vaccine research. Without this assurance, researchers have been wary of embarking on this most needed endeavor. A second statute allows smaller biotechnology companies, who are often overwhelmed by the large corporations, to use talent that might otherwise remain dormant. The profit-sharing concept is novel and innovative, and may benefit the state financially as well as adding to scientific knowledge and better health. Private industry often has facilities, less restrictive working conditions, and liquid capital which allow for more risk-taking than do university research positions. California has tapped into this resource in its joint ventures with biotechnology firms. These partnerships enhance the states’ technical capacity for research in terms of volume as well as diversity of content. Models for Distributing Research Funds Both universities and research institutions are accustomed to dealing with grants and their associated administrative tasks. There is no administrative advantage to funding a single state university over another research institution or private industry. An exception might be for a state to fund many univer- sities within the state system. In such a case, it is important to centralize the state universities’ administrative capabilities. This would reduce duplica- tion of efforts and make funding of state university research more attractive. California has adopted this model. By funding its state universities through the University-wide Task Force, which is already familiar with the administra- tive organization of its representative universities, administrative duties are both minimized and easily facilitated. 8. Relationship Among States, and Between States and the Federal Government A state’s AIDS problem must be extensive in order for it to invest in research. Before appropriating funds, governing parties must agree that money is best spent for research, and that other needs for which states have responsibility have been met. Thus, states which have a surplus and a healthy economy are in a better position to fund AIDS research. This may account, in part, for why Massachusetts, which has a relatively small AIDS problem compared to Texas, Florida or New Jersey, is able to rank third in state funding for AIDS research, while Texas, with an excellent university system and the fourth largest AIDS population, has not funded AIDS research. Chapter 10 - Research 10-11 There appears to be very little communication among states involved in AIDS research, beyond what is normally conducted among researchers along academic lines and in scientific publications. California has combined patient populations from different geographic areas to increase sample size in research projects. Pooling its three university centers’ patients (at UCSF, UCLA and UCSD) gives the state an advantage that no other state has taken. Sharing resources and information will be necessary as the disease spreads -- and greater federal coordination may be required to achieve such team work. Problems of Definition, Quality Control Without national centralization of research efforts, states might easily duplicate projects -- a concern of many administrators. However, many leading researchers believe that there is actually only a small risk of duplica- tion of projects and those that might be duplicated address significant enough areas to warrant the added efforts. 9. Conclusions An analysis of the most ambitious research efforts by states leads to several observations: I. Only a few states, such as California, New York, and Massachusetts, have become major sponsors of AIDS research. Most states,including Florida and New Jersey, have put their energies into more tradi- tional state-related activities, such as public education and service delivery, rather than research. Few states have the financial and institutional resources to conduct state-sponsored research. Nevertheless, two states in particular, California and New York, have very elaborate management structures in place and firm commitments by the executive and legislative branches to continue to fund AIDS research. 2. No single model for funding and managing research can work in every state. Each state needs to identify the institutions and resources which will best serve its needs. 3. States which have smaller populations of patients with AIDS should collaborate on regional projects, sharing data for clinical research. Data collection on AIDS in rural regions is virtually non-existent. As trends may be different in rural areas from those in the large urban arcas that are currently studied, collaboration on research projects would be important in addressing the needs of citizens in these states. U.C. BERKELEY LIBRARIES IVER CO0044008uy