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8 A National Commission on HIV hnfection and AIDS In Confronting AIDS, the IOM/NAS Committee on a National Strategy for AIDS highlighted deficiencies in the efforts being directed against the AIDS epidemic and in the use of the nation's resources in that task. The 1986 report also identified as a major concern a lack of cohesiveness and strategic planning throughout the national endeavor and recommended the creation of a national commission on AIDS. In reviewing the events and progress of the last 20 months, the present committee considered the areas of public health, health care, and re- search. In addition, the committee carefully weighed the question of whether or not the IOM/NAS recommendation to establish a national commission on AIDS should be reaffirmed. In its deliberations, the committee evaluated the quality of leadership provided by various individuals and components of government. Some of those considerations are presented below. The Presidential Commission on the Human Immunodeficiency Virus Epidemic was established in June 1987 and will conclude its work in June 1988. In the committee's view the commission has made major contribu- tions to the public's understanding of HIV infection and AIDS and to the development of a compassionate and informed response to the epidemic. Guided by Admiral James D. Watkins's strong leadership and open- minded approach, the commission's focused attention has been effective in bringing diverse public and private resources to bear on a national problem. Yet the Presidential Commission's mandate, although well executed, was short term. A commission with a long-term mandate to 165

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}66 CONFRONTING AIDS: UPDATE 1988 formulate and sustain a coherent national policy could capitalize on the momentum created by the current body. The obligation to formulate AIDS policy spans a variety of federal government departments and touches, in addition to the Department of Health and Human Services, the Departments of Justice, Education, Defense, Energy, and other components of the executive branch. The HHS assistant secretary for health chairs the Federal Coordinating Committee on Information, Education, and Risk Reduction on AIDS, which is intended to coordinate the activities of HHS and other depart- ments, agencies, and executive branch offices. In the committee's view, this body has operated to facilitate communication and coordinate activ- ity rather than to set policy. The lack of guidance in federal policymaking is manifested by false starts and misguided efforts; some illustrations include interdepartmental disputes over the proper educational approach, the administration's advocacy of screening for certain low-risk popula- tions, the failure to move rapidly to reduce the risk of HIV transmission among IV drug abusers, and the announcement by the military services in December 1987 that they would remove service personnel who tested positive for HIV antibodies from aircraft pilot duties and other sensitive positions (a policy that is now under review by the Department of Defense). Within HHS, the Public Health Service Executive Task Force on AIDS, also under the direction of the assistant secretary for health, coordinates AIDS activities within the Public Health Service. (A new office, the National AIDS Program Office, has been proposed to replace and expand the task force.) At the NIH level, the new Office of AIDS Research will direct and coordinate AIDS research activities among the institutes. These efforts should streamline progress within the Public Health Service, but they are not meant to have the broader, overarching responsibility for setting national policy directions that the committee feels is lacking. In the absence of strong federal leadership, a variety of private organizations, foundations, volunteer groups, professional organizations, and state and local governments have taken the initiative to create educational programs, formulate laws and regulations, and address other facets of the epidemic. These efforts are an enormous contribution to the progress that has been made thus far against AIDS and HIV infection; nevertheless, the absence of coherent national direction condemns many localities to "reinvent the wheel" when it comes to setting local policy and increases the likelihood that failed experiments will be repeated from place to place. Ill-conceived public policy (e.g., HIV antibody testing for marriage license applicants, described in Chapter 4) is doubly harmful: besides the damage that may be caused by the action itself, it redirects energies and resources that might have been better spent elsewhere.

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A NATIONAL COMMISSION 167 Finally, the lack of a coherent national policy dooms areas unblessed with energetic private groups, generous foundations, or strong local govern- ments to face heavy economic burdens. These considerations helped to shape the committee's thinking in its review of various ways to achieve optimal federal direction of efforts to control the epidemic of HIV infection and AIDS. The committee consid- ered a separate AIDS agency but concluded that such a body, cutting as it would across already well-established and effective agencies in many federal departments, would cause unnecessary disruptions. In light of the positive strides that have been made, the committee also considered whether the status quo is satisfactory. There have been many areas of progress: biomedical research, some improvements in public education evidenced by the recent all-household mailing planned by CDC and the continuing superb leadership of Surgeon General C. Everett Koop, improvements in the FDA drug approval process, and the ongoing CDC surveillance efforts. The committee has concluded, however, that the federal response has been too uneven. Where direction has been reason- able, the lack of forceful policymaking may have done little harm. But where public policy has been clearly inadequate for instance, in the provision and financing of health care, in setting standards for antibody testing and antidiscrimination, in addressing IV substance abuse, and in furnishing overarching direction for all components of the government and the private sector the nation has suffered from the absence of strong federal leadership. The Institute of Medicine and the National Academy of Sciences are generally reluctant to recommend that a new government entity be established; however, in this case, the committee feels that such a body is needed to inform policy and provide sustained, coherent advice to the nation. In the past, the creation of a commission has achieved the successful resolution of difficult and important national issues, most notably in the case of the Social Security Commission. Furthermore, the nature of the epidemic is such that controversies will continue to arise, demanding an informed, timely response. Therefore, the committee reaf- firms the 1986 recommendation that a national commission on AIDS and HIV infection be established. The commission would assume an advisory rather than an operating role and be responsible for: adopting as its scope a broad view of the epidemic that spans all components of the public and private sectors; monitoring the course of the epidemic; evaluating research, health care, and public health needs; formulating recommendations for altering the direction or intensity of health care, public health, and research efforts as the problem evolves;

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168 CONFRONTING MDS: UPDATE eggs setting the tone for educational campaigns; assuming an advisory and catalytic role in stimulating appropriate action by federal, state, and local government bodies, industry, the academic scientific community, and private foundations and organizations; encouraging greater U.S. contributions to international efforts; monitoring and advising on related legal and ethical issues; reporting to the American public to clarify points of possible confu- sion such as the extent and danger of heterosexual spread or the electiveness of condoms; and providing a forum for all involved and interested parties. To carry out these responsibilities, the commission must have certain attributes. It should: be endorsed at the highest levels of government both by the President and Congress; have sufficient national and international stature and credibility for its advice to influence all participants in the struggle against AIDS; and be able to engage all of the diverse public and private resources that can be brought to bear on AIDS and its associated problems. Considering these responsibilities and attributes, the committee pro- poses the establishment of a national commission on AIDS with a 5-year, renewable term. The commission chair should be a senior, recognized leader, engaged full time in this capacity and reporting directly to the President. In addition to the chair, the commission should consist of eight other members, each of whom is a senior expert of national stature in one of the areas of particular relevance to AIDS. Each commissioner should in turn head a panel of experts to explore such topics as research (biomedical, health care services, and social sciences), the provision and financing of health care, public health and education, epidemiology and modeling, law and ethics, and the United States' international role in combating AIDS. The commission should have ample professional staff and a sufficient budget. In addition, consideration should be given to establishing a $10 million discretionary fund that would be spent through existing agencies to allow quick responses to new, unforeseen opportunities. The establishment of a national commission signals a major commit- ment to national leadership for preventing and controlling HIV infection and AIDS. Such a commission would move beyond the mere tracking of relevant AIDS activities and take the lead in setting clear policies for the nation. HIV infection is a rapidly moving target; a sustained, well-guided effort is needed if we are to remain attentive to its course and thwart its effects.