To Improve Human Health A History of the Institute of Medicine (1998) / Chapter Skim
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6 The Institute of Medicine and AIDS
6 The Institute of Medicine and AIDS
Pages 211-248
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From page 211... ...
It would not be an exaggeration to say that the Institute of Medicine became the focal point of the nation's response to AIDS in 1986, and it continued to play a central leadership role in public policy toward AIDS in the years that followed. During the presidencies of Samuel Thier and Kenneth Shine, who became the head of the TOM in January 1992, the Institute issued two seminal reports on the nation's handling of the AIDS epidemic, conducted numerous workshops on nearly every facet of AIDS, and produced a series of reports on the government's management of the disease.
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From page 212... ...
, who suggested that the TOM examine the issues surrounding school admission policies for children with AIDS. At the time, the school attendance of children infected with what later became known as human immunodef~ciency virus (HIV)
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From page 213... ...
These included James Curran, chief of the AIDS branch of the CDC, Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health (NTH) ; and Robert C
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From page 214... ...
Less was said about the provision of care to AIDS patients and the many medical, social, and behavioral issues involved. Whatever their particular take on the problem, the participants agreed that AIDS was an appropriate subject for the TOM to consider.8 By the time the TOM Council next sat down to discuss this matter, Samuel Thier, rather than Fred Robbins, presided over the TOM.
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From page 215... ...
Thier and Press appointed an Il-person steering committee, cochaired by David Baltimore of the Whitehead Institute for Biomedical Research in Cambridge and Sheldon Wolff of the Tufts medical school, to develop "a national agenda on research and health care for AIDS." David Baltimore, a biologist from the Massachusetts Institute of Technology (MIT) who had won the Nobel Prize in 1975 for his work on retroviruses, headed the Research Panel.
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From page 216... ...
Contrary to the usual rhythms in health policy, the Institute of Medicine moved more quickly than did the federal government. The Committee on AIDS resembled nothing so much as a presidential commission, yet it was the TOM, not the federal government, that did the commissioning.
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From page 217... ...
Even as committee members took a crash course on the AIDS epidemic, they grappled with the practical problems that inhibited action in the field. They decided, for example, to conduct two public hearings, one on either coast, so as to counteract the charge, in David Baltimore's words, "of being insensitive to the perspective and needs of the communities which are now shouldering the burden." The community of male homosexuals was chief among these, and as the committee learned, the fact that the syndrome disproportionately affected an already stigmatized group greatly complicated the politics of public health.
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From page 218... ...
In the near future, at least, it did not appear as though the AIDS crisis would end, as the polio crisis did, with the introduction of a new vaccine. "I think it is very important," said Howard Temin, "that the report not be able to read that a vaccine is soon going to come." Although David Baltimore agreed, he thought it important for the committee to give some sort of timetable for the development of a vaccine, such as 10 years.
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From page 219... ...
In the mid-19SOs, unlike the early 1970s when the war on cancer was declared, the choices were more stark. "We live uncler Gramm-Rubman," said Sheldon Wolff, referring to an agreement in place to limit the rate of growth in the federal budget, "it is not business as usual." David Baltimore regarded AIDS as the leading health problem in the country, requiring the diversion of funds from other priorities.
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From page 220... ...
On the public health side, it called for a "massive media, educational and public health campaign to curb the spread of the HIV infection." On the scientific sicle, it advocated "substantial, long-term and comprehensive programs of research in the biomedical and social sciences intended to
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From page 221... ...
To treat AIDS patients, the committee called for more planning and training so as to cope with an increasing case load of patients with HIV infection. The committee sought to emphasize care in the community, keeping hospitalization to a bare minimum.
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From page 222... ...
Reporter Philip Boffey's piece led with the accusation that the federal response to AIDS was "dangerously inadequate." The third paragraph contained a quotation from David Baltimore about how he was "quite honestly frightened" by the potential of the AIDS epidemic, and the sixth paragraph featured a response from Robert Windom, an Assistant Secretary of Health and Human Services, to the effect that "there has been a conscientious effort to do a good job." The lead paragraph identified the report as from the National Academy of Sciences, whose arguments carried weight "because of its reputation and function." Not until the eighth paragraph, which was buried inside the newspaper, did the interested reader learn that the committee had been assembled "by the Academy and its principal health unit, the Institute of Medicine." The price of collaboration with the NAS subordination.24 was The Post story, by way of contrast, mentioned the Institute of Medicine in the second paragraph and on equal terms with the National Academy of Sciences. Christine Russell's piece also highlighted the public health aspects of the report more than the Times.
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From page 223... ...
On ABC, the audience saw a text box that highlighted the report's major recommendations and heard interviews with Samuel Thier, health pane! member dames Chin, and David Baltimore.
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From page 224... ...
In addition, the TOM hoped that the oversight committee would help focus the AIDS activities of the entire NAS complex, serving in a similar manner to the boards that guided the various TOM divisions.28 Even before the oversight board started its work, the IOM initiated limited projects in the areas of epidemiology and AIDS drug and vaccine development. At the end of August 1987, the TOM held a Conference on Promoting Drug Development Against AIDS and HIV Infection.
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From page 225... ...
"I believe we are in a national emergency and the biomedical community will be judged in the future by how we respond," David Baltimore said in a keynote address that set the tone for the conference. David W
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Support came from the Pharmaceutical Manufacturers Association, the National Cancer Institute, and the National Institute of Allergy and Infectious Diseases. David Baltimore headed the small steering committee for this conference, which included experts in immunology, retrovirologsr, · .
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"Experimental evidence has not yet justified any hope for an effective vaccine in the next few years," the steering committee concluded.33 Toward the ~ 988 Report By the time the conference on vaccine development took place in December 1987, the AIDS Oversight Committee had begun to meet. Samuel Thier selected Theodore Cooper to head the eight-person committee.
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From page 228... ...
As a practical matter, preparation of the update took precedence, because the committee, which met for the first time in October 1987, faced a short deadline for its completion.35 Because Samuel Thier regarded the work of the AIDS Oversight Committee as having the highest priority of any TOM activity, it frustrated him that funds for the committee and for other AIDS projects were difficult to raise. In November 1987, he told the Council that money for the report update was "being pieced together," with the bulk of the support coming from the National Research Council.
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From page 229... ...
had already given the TOM a large grant for its endowment and this precluded the foundation from making specific project grants.36 In order to publish and disseminate the update report, the lOM spent $50,000 of its own money, a good example of how the drive to raise an endowment enabled the TOM to accomplish things it might not otherwise have been able to 60.37 In the spring of 198S, the AIDS Oversight Committee came to an agreement on the recommendations for its update of the 1986 report. In general, the committee used the 1986 recommendations as starting points and then looked at what had occurred in the interim that might cause them to be modified or changed.
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From page 230... ...
legal measures to nrohihit. ~ 1~ _ 1 ~ alscrlmlnatlon against people with AIDS remained ``a vital cart of public health efforts.',40 _ ~_ , ~ ~^ r~ ~v ~ ~ Health care financing marked another area in which the AIDS Oversight Committee sought to expand the work of the original NASTOM committee.
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From page 231... ...
For another, the Presidential Commission on the Human Immunodeficiency Virus Epidemic, once vilified as ignorant and stacked with what Science described as "homophobia r~ght-wing ideologues," appearec! on the verge of issuing a report with recommendations that mirrored those of the TOM.
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From page 232... ...
Aware that the President-elect would not have time for a leisurely examination of even a 13-page document when he received it in December 198S, Frank Press and Samuel Thier wrote a 3-page cover letter in which they summarized the white paper. They began with the stark fact that during George Bush's term in office, AIDS would kill 200,000 Americans.
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From page 233... ...
"The work of the National Academy of Sciences and the Institute of Medicine has strengthened my determination to see to it that out of this international tragedy some good may come; and that America's unparalleled medical resources twilll be stronger for having fought this fight," wrote Bush.48 The Institute's AIDS Activities After the excitement of preparing the update, the AIDS Oversight Committee settled into the role of advising the TOM on its AIDS activities. One of the first projects scrutinized by the committee was a proposed TOM evaluation of the NIH AIDS programs.
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From page 234... ...
The report recommended that the period of rapid buildup in AIDS research, which led to expenditures of $806 million in fiscal year 1991, or nearly 10 percent of the total NTH budget, should give way to long-term planning. In terms of emphasis, the committee suggested that NIH should increase its activities in behavioral science, basic science, patient care research, and vaccine development.
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From page 235... ...
The committee recommended an annual discretionary fund of $20 million and the authority to transfer up to ~ percent of each NTH appropriation account.5i In addition to the study of NTH, the AIDS Oversight Committee took particular interest in the Roun~table for the Development of Drugs and Vaccines Against AIDS. Establishment of the Roundtable, which met for the first time in February 1989, reflected the use of the Institute's convening function.
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From page 236... ...
The group could agree, however, on the need for a permanent consortium to examine present and future drug and vaccine issues, and some thought that the National Commission on AIDS might play such a role. As in all the activities of the Roundtable, the conversation was both candid and informal and gave attendees from one sector of the research establishment an opportunity to understand the differing perspectives of those from other sectors.54 A few months after the Roundtable meeting on consortia, the TOM held a special event that reflected the interests of both the TOM and the oversight committee in the international dimensions of AIDS.
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From page 237... ...
In June 199T, the TOM disbanded its special unit on AIDS activities and moved its remaining projects to the Division of Health Promotion and Disease Prevention, noting that the move "did not indicate a diminished interest in AIDS-related projects at the TOM, which will be pursued as vigorously as in the past." By this time, thanks to the work of the AIDS Oversight Committee and its predecessor, an interest in AIDS was woven into the basic fabric of the TOM.57 Continuing Interest in AIDS Two projects in particular demonstrated the continuing interest of the TOM in AIDS. One involved a large-scale study of the ~ ~an='l~l=SlVll Vf TTA V, ~lilUU~ll ~11~ It supply in the early incus, and the other surveyed the AIDS research programs of what was known before 1992 as the Alcohol, Drug Abuse, and Mental Health Administration.
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From page 238... ...
Furthermore, the Democrats in Congress and in the executive branch realized that hemophiliacs and recipients of blood transfusions were, along with children who had been infected by their mothers, the perfect victims of this tragedy to exploit for political purposes. Unlike homosexuals who engaged in anal intercourse or drug abusers who injected poison into their veins, neither hemophiliacs nor blood transfusion recipients, such as tennis player Arthur Ashe, could be said to have brought AIDS on themselves.
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From page 239... ...
This required the committee to assemble an archive of documents from government agencies such as the Food and Drug Administration, consumer interest groups such as the National Hemophilia Foundation, private groups involved in the blood supply system such as the American Association of Blood Banks, and suppliers of blood and blood products such as the American Red Cross. To make sense of these documents, the committee studied the nation's complex system of acquiring, distributing, and regulating the quality of its blood supply.
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From page 240... ...
The problems that the committee faced showed just how hard it was to create a usable past and, in general, how difficult it was to come to terms with the AIDS epidemic.63 In the July 1995 report, the committee presented a nuanced, balanced history of decisionmaking during the AIDS crisis and made reasoned recommendations designed to improve the nation's performance in a future crisis. The committee concluded that the events it analyzed "underscore the difficulty of personal and institutional decisionmaking when the stakes are high, when knowledge is imprecise and incomplete, and when decisionmakers may have personal or institutional biases." Whatever the difficulties, it was clear in retrospect that the system "did not deal well" with blood safety issues.
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From page 241... ...
Some were bureaucratic, such as the suggestion that the Secretary of Health and Human Services "designate a Blood Safety Director at the level of deputy assistant secretary or higher" or that the Public Health Service "establish a Blood Safety Council." Others were strategic, such as the recommendation that federal agencies support and respond to the CDC in its responsibility to "serve as the nation's early warning system for threats to the health of the public" or that the FDA encourage the blood industry"to implement partial solutions that have little risk of causing harm" in cases where "uncertainties or countervailing public health concerns preclude completely eliminating potential risks." The committee also cautioned physicians and patients "faced with a decision in which all options carry risk" to "take extra care to discuss a wide range of options." To facilitate the flow of reliable information, the committee recommended that the Department of Health and Human Services convene an expert pane] to inform people about the "risks associated with blood and blood products" and about the safety and efficacy of available alternatives.64 The Committee on HIV and the Blood Supply did exactly what Secretary Shalala hoped it would.
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From page 242... ...
As with the study of HIV and the blood supply, the Committee on Substance Abuse and Mental Health Issues in AIDS research found a slow response on the part of the federal bureaucracy to the AIDS crisis. In the meantime, AIDS continued to grow as a public health problem.
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From page 243... ...
In August 1990, for example, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act, which established a federal grant program to cities that were affected by the epidemic. Congress patterned the program after the one that Stuart Altman had devised and the Oversight Committee on AIDS had recommended in 1988.
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In the case of AIDS, the TOM made a difference. The TOM could not have played such a prominent role on AIDS if Samuel Thier had not won the respect of Frank Press.
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4. IOM Council Meeting, Minutes, March 18, 1985, IOM Records.
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34. Roy Widdus to Frank Press, November 30, 1987, AIDS Oversight Committee Files, Accession 95-070, IOM Records.
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From page 247... ...
39. Robin Weiss, "Notes on AIDS Oversight Committee Meeting." 40.
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From page 248... ...
55. "Summary of the Institute of Medicine U.S.-USSR AIDS Symposium, October 4-5, 1989," February 28, 1990, Accession 95-069, IOM Records; Transcript of Samuel Thier's remarks, October 4, 1989, Accession 95-069, IOM Records; Peter Hartwick to Robin Weiss, November 6, 1989, Accession 95-069, IOM Records.
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