NCAIDS Year 1 (August 1989-July 1990)
"[I]t is the stigma of AIDS and its association with gay men and intravenous drug users, who are generally regarded with distaste and hostility, superimposed on the horror of this fatal disease itself, that generates the almost unmanageable fear of transmission and the unacceptability of even the slightest risk. The pain, suffering, and despair of the disease alone are dreadful enough. The added stigma makes it virtually unbearable. You lose not only your life, but also your pride, your job, your insurance, your friends, and your family. Posterity remembers you for dying of AIDS, not for having lived."
Public commissions don't always get much public respect or attention; critics often regard them as political evasions of difficult problems. In the case of AIDS, Donald Goldman and Jeff Stryker (NCAIDS commissioner and staffer, respectively) remarked, "If AIDS is the quintessential case study for bioethicists, it is a potential quagmire for politicians. The association of HIV disease with drug use and sexual behavior makes it a topic that all but the most courageous (or the most homophobic) politicians shy away from. A frequent political response is to form a commission" ("The National Commission on AIDS," Kennedy Institute of Ethics Journal, available in Osborn's AIDS Commission Background (p. 36-42)). But they went on to quote Alexander Capron (1983) on the roles that commissions play: a commission could be "a watchdog, overseeing the work of particular government agencies; a crucible, providing a means for publicly hammering out conclusions on controversial issues when consensus, both in the public and in the relevant disciplines, is not yet apparent; and a lightning rod for public concern—or viewed less charitably, dumping ground for an issue that is too difficult for the ordinary political process to handle." The National Commission on AIDS would play all of these roles, but especially that of crucible.
Why was another commission created? Congressional sponsors cited several shortcomings of the Presidential Commission, including the short time frame allotted, an overwhelming number of recommendations, and a shortage of serious expertise among commissioners. (For example, of the 13 members, only four had relevant backgrounds in public health or clinical medicine; none were Black or Hispanic, PWAs or members of the gay community. Picked by President Reagan, they included the president of Amway Corporation, the president of Metropolitan Life Insurance, the editor of the Saturday Evening Post, and John Cardinal O'Connor of New York.) The NCAIDS would have 15 members, five each selected by the Senate and House of Representatives, and five selected by the president. Most of the 12 voting members would have relevant expertise on HIV disease, and two would be members of the public with relevant direct experience with AIDS. It would have a two-year, renewable term. The NCAIDS would build on the inquiries and recommendations of the previous commission, assess how well those had been implemented, and investigate in additional areas.
The NCAIDS members took office on August 3, 1989, and quickly elected June Osborn, MD as their chair, and David Rogers, MD as vice-chair. According to its mission statement, the NCAIDS existed "to create a broad public agreement on the magnitude, scope, and urgency of the HIV/AIDS epidemic, inspire leadership at all levels of both the public and private sector, and put in place effective, cooperative, and non-discriminatory systems and resources required for preventive education, comprehensive care, and the research effort necessary to halt the epidemic."
The commissioners were:
- June Osborn, MD (Chair), Dean of the School of Public Health, University of Michigan, who served on a number of AIDS advisory panels, including those for the Global Commission on AIDS for WHO, and the Robert Wood Johnson Foundation. Dr. Osborn also served as consultant to panels on blood supply safety and contributed to the 1986 IOM study Confronting AIDS. She was already on record as a critic of America's handling of the epidemic to date, and as an advocate for compassionate approaches to those infected with HIV. With training in both virology and pediatrics, and prior experience serving on federal advisory panels, Dr. Osborn was well prepared to lead the commission.
- David Rogers, MD (Vice-Chair), Walsh McDermott University professor at the New York Hospital-Cornell University Medical Center, and former president of the Robert Wood Johnson Foundation, had also held appointments on the Advisory Council of the AIDS Institute of New York State, the Citizens Commission on AIDS of New York and New Jersey, the National Community AIDS Partnership, and the New York City Mayoral Task Force on AIDS.
- Diane Ahrens, Commissioner of Ramsey County, Minnesota for over 15 years, also chaired the Human Services Steering Committee of the National Association of Counties (NACo) from 1986 to 1988 and was then appointed chair of NACo's task force on HIV/AIDS, which formulated regulations for all counties regarding their role in addressing the HIV epidemic.
- Reverend K. Scott Allen, an ordained Southern Baptist minister, worked with the HIV/AIDS Research Group at the University of Texas Southwestern Medical School. He became personally involved in the HIV epidemic after discovering that his wife and two children were infected with HIV in 1982. He worked extensively with the spiritual, ethical, and psychological dimensions of AIDS through pastoral care, local and state governments, and community-based organizations.
- Harlon Dalton, Esq., a professor at Yale Law School and a leading authority on legal issues generated by the AIDS epidemic. His publications included AIDS and the Law: A Guide for the Public, and "AIDS in Blackface."
- Don Des Jarlais, PhD, Director of Research for the Chemical Dependency Institute of Beth Israel Medical Center, Deputy Director for AIDS Research with the National Development and Research Institutes, Inc., and a Professor of Community Medicine at Mount Sinai School of Medicine, and an international leader in the fields of AIDS and intravenous drug use.
- Eunice Diaz, MPH, an expert on the issue of AIDS in the Hispanic community, was former Vice Chair of the Health Resources and Services Administration (HRSA) AIDS Advisory Council and a member of the Secretary's Task Force on Infant Mortality (HHS) as a health consultant, and the Los Angeles County Commission on AIDS, among others.
- Donald Goldman, Esq., an attorney, was active in the National Hemophilia Foundation and its chapters for over 25 years; he coordinated the National Hemophilia Foundation's efforts to improve the safety of the nation's blood supply, began many of its efforts in HIV risk reduction, and introduced initiatives to improve delivery of hemophilia and HIV services to minorities.
- Larry Kessler, a founder and Executive Director of the AIDS Action Committee of Massachusetts, New England's largest and oldest AIDS service organization. Beginning in 1983 as its only paid staff member, Kessler organized a corps of volunteers to combat the AIDS epidemic through education, service, advocacy, and outreach, which grew to 95 employees and 2500 volunteers by 1991. He was an original member of the Massachusetts Governor's Task Force on AIDS, a founding board member of the former National AIDS Network and the AIDS Action Council in Washington, and served on the boards of the Harvard AIDS Institute and the National Leadership Coalition on AIDS.
- Charles Konigsberg, MD, MPH, Director of Public Health for the Delaware Department of Health and Social Services. His previous positions included Director of Health for the Kansas Department of Health and Environment and local health directory positions in Florida, Tennessee, and Alabama. In Florida he served on the governor's AIDS advisory Task Force and was instrumental in developing a comprehensive AIDS clinic for Broward County.
- Belinda Ann Mason, a journalist and fiction writer infected with HIV through a transfusion, founded the first organization in Kentucky and Indiana for people with HIV disease and was Chair Emeritus of the National Association of People with AIDS. (Mason died in September 1991.)
- J. Roy Rowland, MD, member of Congress for Georgia's Eighth Congressional District, was a family practitioner for 30 years; in Congress he provided leadership and insight on numerous health issues, such as infant mortality, rural health, the veterans health system, and AIDS. His efforts on behalf of the AIDS community include sponsoring the legislation that authorized the creation of the NCAIDS and introducing a bill mandating study of AIDS among college students.
- Richard Cheney, Secretary of Defense (ex officio)
- Edward Derwinski, Secretary of Veterans Affairs (ex officio)
- Louis Sullivan, MD, Secretary of Health and Human Services (ex officio)
The commission's first official act, on September 6th, was to issue a statement in support of the Americans with Disabilities Act (ADA), then making its way through Congress. They followed this with several days of hearings in September and November which focused on expert and personal experiences on the "front lines" of AIDS, including discrimination, inequities in health care access, health care financing, and the deficiencies of the American health care system. Although only required to issue annual reports, by December that year the commissioners had already gathered enough information to issue an interim report. (They would continue this practice throughout their tenure.) Titled "The Failure of U.S. Health Care System to Deal with the HIV Epidemic," the report was a stinging critique of the AIDS status quo and a call to action. Many Americans and their leaders had become complacent about AIDS, the commissioners stated. Yet the epidemic, far from being over, was reaching crisis proportions, especially among the poor, women, and minority communities, and was sure to become much worse--60,000 had died of it, at least 100,000 were known to be infected, and analysts estimated that 200,000 would be infected by 1991. The "singularly unresponsive" health care system was faltering, and there was still no national policy or plan for dealing with epidemic HIV. (One witness noted that without defined roles, each level of government points the finger at another and says that AIDS is their job.) And, the report argued, the clear links between drug use and HIV infection must be addressed: the George H. W. Bush administration's National Drug Control Strategy didn't include a key role for drug treatment and mentioned AIDS only incidentally. The commission advised radical re-thinking of the U.S. health care system and its philosophy of care; creation of a flexible, patient-oriented, comprehensive system of care linking hospital, ambulatory, residential, and home care, with primary care physicians at the center; creation of regionalized networks of care using the hemophilia treatment programs as a model; creation of units that can treat patients who have both HIV infections and drug addiction; and provide comprehensive health care services under one roof.
The first report identified many recurring issues and set the tone for the NCAIDS communications—one of brutal honesty regarding the suffering of PWAs and sharp criticism of both the many shortcomings of the health care and social support systems and the federal bureaucracy that handled research and new drug development. In its first months, the NCAIDS also set up three Working Groups (Federal, State, and Local Responsibilities; Social/Human Issues; Religious Communities) and commissioned a technical report "Financing Healthcare for Persons with HIV Disease: Policy Options." From January through July 1990, they carried out site visits and hearings in Washington, D.C. as well as Minneapolis, Los Angeles, New York City, Boston, Seattle, and Dallas, learning about how various cities and populations were dealing (or not) with the HIV epidemic. The second interim report "Leadership, Legislation, and Regulation," (April 1990) again urged creating a federal interagency mechanism to coordinate a national plan, one that would clearly delineate federal, state, and local responsibilities; and passing the ADA. Federal disaster relief for states and localities with the largest populations of PWAs was also urgently needed, as was greater efforts to provide housing for PWAs. The commission called for removing government rules that barred using education and prevention funds to provide accurate information about sexually transmitted disease, birth control, or illicit drug use, noting that these were seriously impeding HIV control, and clearly prolonging the epidemic. The third interim report, "Research, the Workforce, and the HIV Epidemic in Rural America," (August 1990) highlighted again the need for a comprehensive community-based primary health care system, drawing special attention to the acute lack of education and treatment resources in rural areas, and "a shortage of crisis proportions of health care providers capable and willing to care for people living with HIV infection and AIDS." Looking at the state of AIDS research, the commission found that "the NIH clinical trials program is in serious trouble." Limited enrollment and lack of demographic and geographic diversity in the trials denied many PWAs the chance to participate in experimental drug therapies, and academic researchers were not as involved as they could be. Along with this, the report cited a desperate need for more research on the management of opportunistic infections, the usual cause of death for PWAs. Such research should be part of a comprehensive AIDS research plan at NIH. The first annual report, in August 1990, summarized the findings of the interim reports.
Together with public hearings, meetings, round table discussions, staff analyses, and site visits, the commissioners also held press conferences and issued formal statements and resolutions on AIDS-related issues. These included support for the Americans with Disabilities Act, criticism of U.S. immigration and visa policies that put HIV disease on the list of dangerous contagious diseases denying entry to the United States, support for increased AIDS funding, support for the goal of treatment on demand for drug users, and for research on the effectiveness of bleach distribution to IV drug users. The commissioners also wrote directly to the president, congressional leaders and cabinet secretaries about these issues, and testified before House and Senate appropriations committees.