The Institute of Medicine's Response to the AIDS Epidemic

June E. Osborn, M.D.

Professor of Epidemiology, School of Public Health, and Professor of Pediatrics and Communicable Diseases, Medical School, the University of Michigan

Twenty-five years ago, the creation of the Institute of Medicine (IOM) was prompted in part by an awareness of the complexity of modern health and medicine, and its founders carefully defined the membership to ensure representation of the many professions contributing to the health of the public. Thus, from its inception the Institute was positioned to serve as a convening locus for discussions of many ramifications of health policy in the United States. Never was that creative potential realized more dramatically than in the context of AIDS. Over the past 10 years, the IOM has played unique roles, both in informing scientists and policymakers about complex issues raised by the novel epidemic and in convening independent forums for disparate voices, as is succinctly described in Ms. Hardy's chapter. From the time of the 1985 annual meeting forward, multidisciplinary talent and expertise, provided in part by IOM members and expanded through appointment of IOM-sponsored committees, has facilitated rapid, authoritative policy guidance that has been a critical supplement to the hesitant and somewhat passive response of other voices of leadership.

The first important contribution was the study jointly sponsored by the IOM and the National Academy of Sciences (NAS), which broke previous Academy precedent with its 6-month time frame from initiation of the study to release of its findings in October 1986. The leadership of Drs. David Baltimore and the late Sheldon Wolff and the devotion of the IOM staff were exceptional in guiding that complex study; and the resultant report, Con-



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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 The Institute of Medicine's Response to the AIDS Epidemic June E. Osborn, M.D. Professor of Epidemiology, School of Public Health, and Professor of Pediatrics and Communicable Diseases, Medical School, the University of Michigan Twenty-five years ago, the creation of the Institute of Medicine (IOM) was prompted in part by an awareness of the complexity of modern health and medicine, and its founders carefully defined the membership to ensure representation of the many professions contributing to the health of the public. Thus, from its inception the Institute was positioned to serve as a convening locus for discussions of many ramifications of health policy in the United States. Never was that creative potential realized more dramatically than in the context of AIDS. Over the past 10 years, the IOM has played unique roles, both in informing scientists and policymakers about complex issues raised by the novel epidemic and in convening independent forums for disparate voices, as is succinctly described in Ms. Hardy's chapter. From the time of the 1985 annual meeting forward, multidisciplinary talent and expertise, provided in part by IOM members and expanded through appointment of IOM-sponsored committees, has facilitated rapid, authoritative policy guidance that has been a critical supplement to the hesitant and somewhat passive response of other voices of leadership. The first important contribution was the study jointly sponsored by the IOM and the National Academy of Sciences (NAS), which broke previous Academy precedent with its 6-month time frame from initiation of the study to release of its findings in October 1986. The leadership of Drs. David Baltimore and the late Sheldon Wolff and the devotion of the IOM staff were exceptional in guiding that complex study; and the resultant report, Con-

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 fronting AIDS: Directions for Public Health, Health Care, and Research, played a key role in the difficult process of mobilizing and guiding a national response, as did its successor report, Confronting AIDS: Update 1988. As Ms. Hardy accurately describes, the documentation and recommendations provided independent, respected benchmarks against which hasty, sometimes unhelpful policy responses could be measured, and they proved useful to conscientious legislators and administrators at many levels of governmental leadership. Perhaps the most striking features of those reports were their breadth and balance, with emphasis given to health care and public health aspects of the epidemic as well as to research needs. Thus, recommendations concerning intricate and sophisticated biomedical scientific issues were paralleled by the call for such “low-tech” but fundamental measures as ensuring drug treatment on demand for addicted users and the ready availability of condoms, for greater attention to social science research including the need for well-designed studies of sexual behaviors, and for the derivation and evaluation of strategies of health education for prevention of HIV. They called for initiation of public discussion about sexuality and about realistic approaches to substance abuse, topics that had rarely surfaced in national discourse before and that would have been difficult for the political leadership to introduce without the unassailable, independent backing provided by the IOM. Epidemiologic investigations during the first years of the AIDS epidemic had quickly yielded the finding that AIDS was primarily a blood-borne or sexually transmitted disease and that it was difficult to transmit (once the blood supply was secured in 1985) except through certain risky behaviors, but those insights were not effectively mobilized in prevention programs until after 1986. It is noteworthy that then-Surgeon General C. Everett Koop's staff had worked closely with the IOM/NAS committee in 1986, and that Dr. Koop's own report was issued on the same day as the 1986 Confronting AIDS report, which almost surely enhanced the impact of both important contributions to public awareness and reinforced the public's willingness to face the difficult issues raised by the epidemic. Among other effects, the strongly stated recommendations provided a basis and rationale for the news media to begin to grapple with coverage of topics concerning risk behaviors and AIDS prevention that had been virtually taboo until that time. My own involvement in the AIDS epidemic, which had begun officially in early 1984 when I was asked to chair a National Institutes of Health (NIH) advisory committee, intensified greatly through my participation in the 1985 annual meeting of the IOM and subsequent membership on the Confronting AIDS committee. Yet those substantial involvements were dwarfed by the demands of my later role as chairwoman of the U.S. National Commission

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 on AIDS (NCA)—which was an almost direct product of the IOM's efforts. The linkage of the IOM to the NCA is interesting and important to understand, since it had much to do with the subsequent effectiveness of the NCA itself. In the 1986 report (and reiterated in 1988) was the proposal that a broadly based commission on AIDS be created in order to facilitate policy considerations across the range of societal as well as medical topics that were sure to be raised by the far-reaching impact of the HIV epidemic. In direct response to that recommendation, Congressman Roy Rowland (D.GA.), who was at that time the only physician in Congress, incorporated the report's recommendation of such an advisory group into 1988 AIDS legislation that created and defined the U.S. National Commission on AIDS. The unusual structure of that commission, as defined in the authorizing bill (P.L. 100-607), reflected the insistence voiced in the IOM reports that an independent group was needed, as free as possible from political influence, that embodied experience and expertise in the many facets of social, medical, and legal matters requiring policy guidance. To achieve that political independence, the membership of the NCA was prescribed in its appointment process: five members were to be appointed by the Senate, five by the House of Representatives, and two by the president (which, at the time, meant that six members would be selected by each party), and that that group was then to elect its own leaders. A minimum 2-year term was stipulated, but an additional 2-year extension was authorized, to be activated by request of the president (which is what happened). The secretaries of the three federal departments most affected by the epidemic (the Department of Defense, the Department of Health and Human Services, and the Veterans Administration) were designated as ex officio members. The appointment process took several months, so the NCA did not begin its work until September 1989. The resultant membership did indeed bring together a group of citizens whose collective expertise included state and local public health and government, the law, religious and volunteer activities, leadership of community-based organizations, and research in social sciences and issues of substance abuse, as well as voices of communities of color and of people with HIV and AIDS. Two members of the IOM were among those appointed: I was one of the Senate Democratic appointees, and the late David Rogers was one of two members named by President George Bush. Our fellow commissioners elected us chair and vice-chair, respectively. (Of note, Congressman Rowland, the creator of the authorizing legislation, also was appointed as a member of the commission). The work of the NCA over the 4 years of its existence was extensive and is not the focus of this commentary. Suffice to say that it produced 16 reports that were written in nontechnical language. It was our intention that they be durable, accessible sources of guidance across a wide range of policy

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 issues raised by the U.S. AIDS epidemic. They addressed such topics as health manpower; health care access and financing needs; clinical research; and the impact of the epidemic on special populations including those in rural America, communities of color, adolescents, and prisoners. Specific reports dealt with housing for people with HIV/AIDS, the interlinkage of the epidemics of HIV and substance abuse, the special circumstances of the HIV epidemic in Puerto Rico, the issue of HIV in health care settings, and the importance of social science research in successfully combating the epidemic. (All the reports of the NCA were summarized and indexed in a final report entitled AIDS: An Expanding Tragedy, which is available through the Centers for Disease Control and Prevention 's (CDC's) National AIDS Clearinghouse, Rockville, Md.) In addition to that series of reports, the NCA commented, when appropriate, on ongoing issues before Congress and the executive branch, including matters of immigration, reiteration of the urgent need for treatment for addicted substance users, and the importance of taking a rational approach to such issues as HIV screening and public education. As in most national policy debates, it is difficult to point to specific contributions or changes resulting directly from the work of the commission, although in two areas such a claim is perhaps justified. In the 1980s, the debate over “the war on drugs” had become stymied in a purely legal “just say no” stance that ignored public health aspects of illicit substance use; yet the failure to make treatment readily available to those addicts who sought it, plus the severe restriction on access to clean injection apparatus, had provided a set of dynamics that threatened to accelerate the spread of HIV dramatically (as had, indeed, occurred along the East Coast of the United States at the very outset of the epidemic and continues to occur throughout the world). The NCA report, entitled The Twin Epidemics of Substance Use and HIV (1991), reactivated that debate, and in the months following, the public policy discussion resumed and its tenor moderated to the point where efforts at “harm reduction” through the use of needle-exchange programs were legalized in many U.S. cities, while expanded access to treatment for addiction moved higher up on the national agenda. The urgent need for those drug-related recommendations has yet to be fully recognized or implemented, but at least the bottleneck was broken One of the most important contributions of the NCA took the form of its hearings and subsequent report on Preventing HIV Transmission in Health Care Settings (1992), which contributed to a deceleration of a dangerous, irrational movement toward mandated testing of health care workers despite lack of evidence for the validity or effectiveness of such a draconian measure. The issue arose from what was (and remains to this day) a unique cluster of cases among the patients of a single, HIV-infected dental practitioner, but those singular events ignited latent fear that dogged policy discussions throughout the epidemic.

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 The NCA—but in particular Vice-Chairman David Rogers—took on the formidable task of stopping what was fast becoming a stampede. He resolutely and reiteratively entered into discussion with policymakers and key figures in the debate, and in the end had a great deal to do with the relatively benign outcome—in which states could individualize their approach to the issue. Universal precautions, instituted as policy by the CDC from 1987 onward, had been demonstrably effective in curtailing the spread of hepatitis B, which in that context served as a useful indicator virus for the much less transmissible HIV. Other than the single dental practice in Florida, no HIV infection of patients by their caregivers had been revealed in follow-up studies of thousands of people. The crux of the matter was that the risk of transmission of HIV from health care workers to their patients was infinitesimal, and in the rare circumstance in which it might be at issue during invasive procedures, the risk would relate to the factor of provider proficiency at least as much as to the nature of the procedure itself. In light of the need for case-by-case judgment, the policy of mechanisms for assessment of such rare situations, housed in the states, prevailed over more draconian options, such as federal criminal penalties, that had been raised in the heat of Senate debate. It is my strong opinion that the health professions (and therefore the public they serve) owe our late colleague David Rogers a great debt of thanks for his stamina in outlasting that difficult issue; for if the rush to categorical exclusion of HIV-infected health care professionals had been allowed to go unchecked, it would have had a devastating and unnecessary impact on our ability to provide health care—not to mention on the careers of well-trained health care personnel —and the probable relaxation of attention to universal precautions that would have resulted would have had its own negative impact on public health as well. Less tangible contributions of the NCA may have been at least as important: A key component of the NCA's many reports and commentaries was input from hearings that were held across the country to explore the circumstances of the epidemic firsthand and to hear testimony from many hundreds of Americans directly affected by the growing epidemics of HIV, AIDS, and fear. It was a curious phenomenon that, following the early years of intense coverage of the new epidemic, media and public attention had lagged notably, even as the numbers of people caught in the path of the virus escalated dangerously. During the years from 1989 to 1993 the work of the commission—with its frequent reports and statements—helped to keep HIV and AIDS on the public agenda, with a salutary effect both for the citizenry at large and for people directly involved in the epidemic. Our hearings generally attracted media attention; provided an occasion for us to talk in depth with state and community officials, often with news-

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 paper editorial staffs; and usually brought at least a temporarily renewed intensity of interest to the issues of public health, health care, HIV prevention, and discrimination against infected individuals that seemed regularly to drop from the screen in the absence of such stimuli. Thus, in both direct and indirect ways, the existence of the NCA and its work fulfilled the goals of the IOM committees that had inspired its creation. The role of the IOM in the actual work of the NCA was of necessity indirect, since we were a congressionally mandated group supported by federal funds. However I feel quite certain that the IOM “parentage ” of the NCA added greatly to our effectiveness. We felt it was very important to function as what I chose to call a “citizens' commission,” in order to avoid assuming an undue mantle of authority in specific areas in which expertise was available and well constituted. To that end, the existence of other IOM groups, such as those reviewing NIH's AIDS research programs or HIV screening in pregnancy, enabled us to refer to their deliberations without interjecting ourselves directly into intricate technical or scientific debates. At the same time, we were privy to those discussions and were able to draw on their insights whenever necessary. The IOM's ongoing Roundtable for the Development of Drugs and Vaccines Against AIDS was the most important case in point, and it is a particularly impressive example of IOM'S critical convening role. Prior to the mid-1980s there was little or no precedent for organized, civil discourse between all interested and affected parties in the AIDS (or any other) epidemic. Because of the perception in some communities of a distinctly sluggish institutional response to AIDS, discordant confrontations had been occurring with increasing frequency. The potential for disruptive miscommunication was dangerous and real, as urgency was sometimes converted into stridency when community-based groups presented their demands for accelerated drug research and development, and federal scientific and regulatory officials and pharmaceutical respondents felt besieged. In fact, each voice had much to contribute to the debate, and creation of the AIDS roundtable made it possible to achieve an atmosphere in which a discussion could be heard. The AIDS roundtable truly worked, both practically and in the metaphoric sense. It served as a resilient forum, not only for exchanging ideas and strategies, but also for development of mutual respect and understanding among the representatives of the public and private sectors who were its members. As such, it was a genuinely creative contribution to the national response to AIDS, and the diligence of all its participants enriched the overall dialogue remarkably. For that, the leadership of IOM President Samuel O. Thier and his successor, Kenneth I. Shine, must be admired. While tensions, of necessity, remain, it is doubtful that any other sponsoring group could have achieved the same degree of mutual understanding and free ex-

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 change of ideas; the IOM deserves major credit for its contribution to conflict resolution and ongoing dialogue in the field of AIDS. Through its functions as an independent convener, a sponsor of reports, and a creator of forums for discussion, the IOM played a truly crucial role in the American response to HIV and AIDS. It is perhaps easiest to appreciate the centrality of that role if one tries to imagine what would have happened without such critical input. Much has been said about the extraordinary stresses placed on American society at all levels by the emergence of a lethal, sexually transmitted pathogen such as HIV. The potential for political or ideological distortion of wise public health decision-making has arisen repeatedly, and silence and denial are powerful forces that inhibit open discussion of effective options in the care of people with HIV and prevention of its further spread. The agencies of the U.S. Public Health Service worked valiantly to stay abreast of the escalating demands posed by the expanding epidemic, but they were poorly positioned to counteract political pressure or to initiate controversial programs without independent validation. The Confronting AIDS reports filled what otherwise might well have been a vacuum; they did, indeed, supply policy blueprints that provided guidance for both scientists and policymakers; subsequent IOM reports served as useful resources to prevent unwise overreaction (Ms. Hardy's discussion of the issue of screening pregnant women is a particularly important case in point). The convening of those reporting groups and committees enhanced and accelerated the involvement of diverse experts who needed to learn to appreciate the multidisciplinary nature of the AIDS challenge. In addition, the provision of neutral forums such as the AIDS roundtable to allow discussion and debate that included voices from government, industry, health caregivers, and affected communities—all at the same table—converted a strident, fractious argument into constructive, creative initiatives. In summary, there is perhaps no point in the 25-year history of the IOM at which the wisdom of its inception and its broadly based composition was more evident than in the past decade of its leadership in the national response to HIV and AIDS. The IOM's involvement in AIDS issues is, of course, ongoing and is likely to continue to be important in guiding a national response. Nearly 300,000 Americans have already died of AIDS, and despite diligent efforts at improved care and prevention, the cumulative number of Americans diagnosed with AIDS by the end of 1995 will be greater than the deaths from all the armed conflicts in which our country has engaged since the Civil War. Hundreds of thousands more are already infected and will need care and attention in the very near future. Further, it is estimated that new infections will occur at the rate of at least 40,000 per year, with no curative therapy or general-use vaccine on the near horizon.

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Thus, there is much work to be done, and the IOM, with its acknowledged expertise, independent voice, and manifest devotion to the health of the public, will continue to play a crucial role. BIBLIOGRAPHY National Commission on AIDS. 1991. The Twin Epidemics of Substance Use and HIV. Washington, D.C.: U.S. Government Printing Office. National Commission on AIDS. 1992. Preventing HIV Transmission in Health Care Settings. Washington, D.C.: U.S. Government Printing Office. National Commission on AIDS. 1993. AIDS: An Expanding Tragedy. Washington, D.C.: U.S. Government Printing Office.

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 The Institute of Medicine Confronts AIDS Policy-Making: A Public Health Perspective by Kristine M. Gebbie Elizabeth Standish Gill Assistant Professor of Nursing, Columbia University School of Nursing The United States' response to the continuing spread of the HIV epidemic has been reviewed by many: the viewpoints of advocates, caregivers, church leaders, ethicists, the families of those infected, individuals dying from the infection, individuals living with the infection, insurance carriers, legislators, public health officials, and researchers have all been aired. Whether or not they have been heard, at least all of these groups have spoken—sometimes simultaneously, often loudly, at times with conflicting messages, and frequently in language unintelligible to others. It is probable that more people and organizations have spoken out about the HIV epidemic than any previous one. The quantity of publications, media presentations, conferences, seminars, and other communications on HIV and AIDS may indeed be a record, compared to the first dozen years of public and scientific awareness of any other condition. It is also claimed that the world has learned more, more rapidly, than in any other comparable case. The sheer volume, both in quantity and in intensity, threatens the success of the communication, however. It is difficult to sort out the meaningful and useful information, and some are offended by the seeming neglect of other troublesome diseases due to the focus on HIV and AIDS. There have been successes: changes in behavior that have reduced the spread of the virus in some circumstances; care programs that make life with the virus possible for persons with few resources; support programs for families, partners, and friends of affected individuals; research efforts that have illuminated more pieces of the puzzle; legislative advocacy leading to more funding and improved public health statutes; and businesses that use their work sites as the location for prevention education and their status in the

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 community to support fledgling community groups. The fact that the cacophony and confusion are remembered before the successes is a measure of how difficult it has been to achieve progress and evidence of how far we still have to go. Any epidemic infectious disease must be understood as an issue of community. Conditions are of public health importance because they threaten both the physiological systems of infected individuals and the integrity of systems in the communities in which those individuals reside. Public health workers pay attention to individual events (births, deaths, cases of disease), but they do so with an eye to the whole population, seeking to understand the impact of individual events on the health of the whole and seeking to improve the health of the whole. HIV has challenged public understanding and concern because of its appearance in communities that many would like to deny the existence of altogether, such as gay men and injecting drug users. Communities assumed that their health departments would protect “us” from “them,” if only we had the political will, as if clear circles could be drawn around the invading infection. As the widening infection demonstrated, crisp lines of demarcation around hemophiliacs, children born to infected prostitutes, blood transfusion recipients, homosexual men, needle-using substance abusers—and the sexual partners of these people—are impossible. No individual is uni-dimensional, and our social disdain for some categories and labels makes it difficult for those infected or at risk of infection to self-identify all possible risk behaviors. Some of those actions for which communities have had the political will (e.g., barring HIV-infected children from school) were irrelevant or counterproductive to epidemic control. This reluctance to see “those at risk of HIV infection” as part of all U.S. communities has also made it very difficult to develop community-wide prevention programs. We want those at specific risk to change their behavior, but we don't want to talk generally about the appropriate changes. It is as if public health agencies are being asked to decontaminate only that portion of the drinking water system serving left-handed people while simultaneously indicating that anyone who is identified as being left-handed would be summarily asked to leave town. Until we recognize the broad interrelations that exist in any community today, efforts to stop this epidemic will be constrained and will have limited success. One part of the process of developing a sense of community and establishing a working public health protection system is dialogue between the public health agency and the body politic. In a manner somewhat analogous to the process of obtaining informed consent for a surgical procedure, before a program can begin, public health officials must obtain informed agreement, in the shape of legal authorization and a budget, from the political structure of their jurisdictions. Obtaining such sanction for the conduct of programs intended to

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 control the spread of HIV infection and to provide proper care to those infected with the virus has been difficult in most jurisdictions. The dialogue is hampered by the denial and prejudice about the groups that were identified early on as having high rates of infection; by an extreme reluctance to deal openly with any issue touching upon sexuality; by the strained capacity of public health agencies; and by the lack of crisp, rapidly effective, one-step solutions to the epidemic. THE INSTITUTE OF MEDICINE'S ROLE The Institute of Medicine (IOM) would have been expected to take up the issue of HIV infection early because of the complexity of the science involved. The IOM's role in providing direction for scientific study is clear. The limited knowledge about retroviruses made this emerging infection a likely candidate for discussion. The decision made by the Institute to focus its 1985 annual meeting on the epidemic showed that this was a scientific puzzle worthy of the best minds. It also provided a national forum for identifying the lack of a leadership focus for the nation's efforts to combat this disease. The Institute 's decision to appoint a committee with a broad charge covering research, clinical treatment, public health practice, and public policy was a move to counter the lack of national leadership in the public sector. That public health was listed first in the subtitle of the IOM's first report was an appropriate reinforcement of the need for community-wide responses. In the HIV/AIDS epicenter cities of New York and San Francisco, the political structures were challenged early on to understand the need for public leadership in response to this disease. As documented at the time and shortly thereafter (e.g., by Larry Kramer in his play The Normal Heart [1985] and by Randy Shilts in And the Band Played On [1987], health professionals and political leaders were seen as unprepared to reallocate resources to the control of an infection emerging in often ignored communities. The absence of a national voice made local decision-making even more difficult. At the time of the IOM's decision to appoint a committee to study the epidemic, neither the president nor the secretary of health and human services had made it clear that this epidemic was of concern, leading some to assume that the administration considered those infected or most at risk disposable or expendable. The IOM's first report on HIV and AIDS (Confronting AIDS, 1986) both confirmed the centrality of science in developing appropriate policy to deal with an epidemic disease and highlighted the lack of executive leadership at the federal level. The hearings that led to the report provided an opportunity for interested parties to express their perceptions of the many urgent issues: the need for coordinated investment in research, the importance of using knowledge rather than presumption or prejudice in planning policy, the need for

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 well-developed care systems, and the overwhelming need to focus the public's attention on the controllable nature of this epidemic if communities responded thoughtfully. A DECADE OF CONTRADICTIONS Of the images from the first years of the epidemic, perhaps none are as compelling as those of the demonstrations and confrontations that occurred between activists and the establishment. Neither of those terms, “activist” or “establishment,” is used with precision, because neither was exact at the time nor are they today. Yet the clashes and subsequent reassessment and dialogue have had a lasting impact on how this nation is dealing with the epidemic. Gay men, particularly young gay men, seeing far too many friends and lovers die from AIDS, were enraged at what they considered the complete failure of city, state, and federal elected representatives and appointed health authorities to respond appropriately to the loss. They believed that antigay sentiment might be supporting decisions about disease reporting, control of social gathering places such as bathhouses, and limited expansion of budgets for AIDS-related services. The voices of these loud demonstrators, who were often engaged in such dramatic acts as blocking traffic, storming offices, throwing blood-colored fluids, and erecting symbolic tombstones were harsh and unpleasant. But they were insistent, and mayors, governors, public health directors, and regulators—indeed, an almost endless list of officials—sooner or later came to the table to discuss what was perceived as missing and what might be done in response. In some communities, the “activists” were on the other side, often taking direct action against infected individuals, as in the burning of the home of a family with HIV-infected children in Florida. The other half of the equation, “the establishment,” includes elected officials at all levels of government and their appointed public health agency heads. From the Centers for Disease Control and Prevention and the Food and Drug Administration (FDA) through the National Institutes of Health (NIH), the New York City Health Department, the California Department of Health, the Florida Department of Health and Rehabilitative Services, and the Roseburg, Oregon, School Board, to name a few, the quiet corridors of public health decision-making became noisy and crowded as new waves of interested citizens made their concerns and desires known. In these settings, the people speaking up included not only those mentioned above, but also panicked individuals who feared that their children might become infected by sitting next to an HIV-positive child in school or that the rate of infection in this country would dramatically increase if the borders were not closed to those potentially carrying the virus. While these latter groups only rarely took to the streets in

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 demonstrations or to commit violence, their voices were clearly heard by city councils, legislators, and members of Congress. The speed of decision-making and the degree of public scrutiny to which each word of a recommendation or report related to HIV and AIDS was subjected continue to affect the public health world today. The number of meetings, hearings, and draft documents developed as the AIDS case definition was last revised may be a record. A process usually conducted quietly by state and federal epidemiologists with the advice of the academic research community grew to include large public hearings (complete with protests) and consultations at the highest levels of the Department of Health and Human Services. The inclusion in the decision-making loop of those who will be most directly affected by decisions has become the norm in many agencies. The efforts of women concerned about breast cancer research and treatment to model their lobbying efforts on the work of AIDS activists speaks even more loudly about the perceptions of the effectiveness of the confrontation. Agencies are still sorting out the appropriate balance in their approach. In response to community demands, the FDA moved to release drugs for use more quickly in cases of terminal diseases such as advanced AIDS. Today there are requests for a slower evaluation process using more conservative clinical trials. Having pushed to develop antiviral therapies based on what was known about HIV several years ago, the National Institutes of Health is now considering greater efforts to understand the basic science of the virus and the human immune system. COMMISSION A COMMISSION The United States has a long history of using publicly appointed and accountable commissions to highlight an area of public concern and shape possible policy options to put before the final decision-makers. In a complex policy area such as that of the HIV/AIDS epidemic, a commission can give elected leaders a cushion of public debate prior to their making budget or policy decisions. Thus, it was perhaps inevitable that the IOM and others would call for the establishment of a commission to develop the needed detailed proposals for national action to combat HIV. While the Institute itself had covered the critical topics, it was not in a position to do so in sufficient depth and breadth to serve as the locus of discussion. Besides, the role of the Institute as an arbiter of scientific knowledge made it impossible for people to see it as sufficiently broad-based, or even empowered, to deal with the multiple social and economic issues that surround the science of HIV. The first commission to appear was that appointed by President Reagan, the Presidential Commission on the Control of the Human Immunodeficiency Virus. With a 1-year charge and a composition that appeared to most to be se-

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 riously flawed by its limited scientific expertise and its tilt to the political right, this body did not meet the expectations of most who had been calling for national leadership. Nonetheless, its 1988 report has a table of contents remarkably similar to that in Confronting AIDS. The commission clearly drew on the Institute's work and echoed its recommendations in many important areas, surprising those who expected only conservative political dogma. One area of agreement with the IOM was on the need for a longer-term commission or body that could oversee the implementation of needed policy, with broad representation of all interested parties, and with sufficient independence that it could, when needed, be critical of efforts by the administration or others. In November 1988, Congress created by law the oversight National Commission on AIDS that the IOM and the presidential commission had requested. With members appointed by both Congress and the president, and ex officio representation from key executive branch agencies, this body was expected to oversee real progress in movement from recommendations to action. Over the 4 years of the National Commission 's life, there was an increase in AIDS-related funding, at least for the care of those who were already infected, driven by the increasing numbers in need of care. In addition, many more states instituted HIV and AIDS programs as the epidemic continued to grow. Yet the more complex policy issues, such as how to limit the spread of HIV infection among injecting substance abusers or how to develop effective prevention programs for the nation's youth, were avoided whenever possible. The conclusion of the presidential commission was more negative than positive. To quote from the preface to the final report (National Commission on AIDS, 1993): This is a short, sometimes angry report tinged with sadness and foreboding. It is short, because all of what we say here has been said many times before. It is sometimes angry because the carefully considered, widely heralded recommendations contained in our previous reports have been so consistently underfunded or ignored. Even the advent of a new administration, led by a president who had campaigned in part on a commitment to develop a strong, positive approach to the epidemic, was not sufficient to lift the gloom. A NEW PRESIDENT Realists understood that simply electing a president who was not afraid to discuss the HIV epidemic, and who voiced commitment to leadership in ensuring care and prevention, was not sufficient to immediately end either the epidemic or the feelings of neglect and distrust that had built up in the AIDS

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 community. President Clinton's first budget was a very positive step, however. It dramatically increased spending on research and moved closer to fully funding the Ryan White CARE Act, though the changes in prevention funding were not so dramatic. The change in mood, to one of optimism, was palpable. Optimism continued following the appointment of a national AIDS policy coordinator, a role this author filled for 12 months. Although the position was intended to ensure that all federal agencies worked together as effectively as possible and to develop a clear national voice in response to the epidemic, there has been much disappointment in its impact. In an administration with HIV-conversant leadership at or near the top of several cabinet agencies, the willingness of departments to move in previously neglected areas such as housing policy would have shifted regardless of the presence of the coordinator. Lack of clarity on the exact nature of this position and the expected outcomes and activities have left many unsure of its contribution to the national effort. It is too early to fully measure the changes instituted with a new appointment that some describe as being more reflective of politics than public health. A major commitment of the federal government as a national role model, offering HIV prevention education in the workplace to the entire civilian work force, has been slow to develop due to tight budgets, limited central support staff, occasional mixed signals, and the delaying tactics of individuals who have yet to understand the seriousness of the epidemic and its personal relevance to them. Following the direction of Congress and the wishes of many advocates, the department of Health and Human Services has supported efforts to give stronger focus to a director of AIDS research at NIH; the Department has also created a unique multiagency/scientist/advocate task force to move new HIV drugs to the market more quickly. In addition, the Department of Housing and Urban Development has made great strides in establishing communication with the HIV advocacy community, though the long-term outcome of that is not yet clear. WHAT IS NEXT? The basic outline of Confronting AIDS could be retained as the structure of a progress report today. The epidemic continues to spread, though perhaps at a somewhat slower rate than in the early years. There is significant growth of the infection in some critical populations, such as youth and young adults, both homosexual and heterosexual. The need to fund those prevention approaches documented as being effective is at least as great now as it was in 1988. While care services are better, some communities are just now coming to grips with the extent of the care needed and are just now beginning to work on how to organize and fund services. The research agenda is, if anything, larger than

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 ever, as answers to previous questions beget multiple new questions regarding the natural course of the disease, the management of symptoms and underlying pathology, and the potential for a preventive vaccine. The behavioral science research agenda is just as long. Leadership will be needed—not just the agency- or topic-specific leadership offered by an institution such as the Office of AIDS Research at NIH, but leadership that connects the work of federal agencies to efforts in the private and voluntary sectors, and to the work of state and local governments. The type of work for which the IOM is known will also be needed in the future. The dialogue on drug and vaccine development that has continued in forums under the Institute's auspices might not be replicated in any other setting. The commitment of those involved in combating HIV/AIDS to scientific rigor and exploration, and to the eventual control of the epidemic, apart from the ultimate success or failure of any one party in the effort, is unique. More public dialogue involving the whole range of interested communities is also needed, but the IOM cannot fully fill that role. In such discussions, advocacy and personal experience, politics, and realistic compromises must be developed. Starting the public debate with a clear sense of the science that underlies it, however, is a big step toward success. REFERENCES Institute of Medicine (IOM). 1986. Confronting AIDS: Directions for Public Health, Health Care, and Research. Washington, D.C.: National Academy Press. Kramer, Larry. 1985. The Normal Heart. New York: New American Library. National Commission on AIDS. 1993. AIDS: An Expanding Tragedy. Washington, D.C.: U.S. Government Printing Office. Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic. 1988. Washington, D.C.: U.S. Government Printing Office. Shilts, Randy. 1987. And the Band Played On: Politics, People, and the AIDS Epidemic New York: St. Martin Press.

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For the Public Good: Highlights from the Institute of Medicine, 1970–1995