By Susan L. Speaker ~
The National Library of Medicine recently launched a new Profiles in Science site! Unlike most of our earlier Profiles, which feature the careers of individual biomedical scientists, epidemiologists, and public health advocates, the new site explores the term of an organization, the National Commission on AIDS (NCAIDS), which operated from 1989 to 1993. The launch of the site coincides with the 40th anniversary of the first reported AIDS cases.
The NCAIDS was an independent commission created by the U.S. Congress in November 1988. Its 15 members, led by Dr. June E. Osborn, began work in August 1989, as the AIDS epidemic entered its ninth year. Its mission was to conduct investigations that would:
“…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.”
Materials in the June E. Osborn Papers and the National Commission on AIDS Records document the commission’s journey through records of hearings, news conferences, correspondence, media coverage, and thirteen interim and three annual reports. The new Profiles site, integrated with NLM Digital Collections, presents a curated selection of these digitized materials together with a narrative “Story” that provides historical context, a chronology of the work of the National Commission on AIDS, and a link to further resources to learn even more.
The NCAIDS materials reveal a talented, thoughtful, passionate, and empathetic group of people, working to gather and distill a vast amount of information about a public health crisis, and hammering out conclusions and recommendations on the controversial issues embodied by the AIDS epidemic. In their hearings and site visits, the commissioners explored the many facets of the HIV/AIDS epidemic—inadequate healthcare and social services, homelessness, drug addiction, legal issues such as discrimination and confidentiality, and political leadership—through the testimony of public health workers and experts, but also of people with AIDS and their families. The NCAIDS reports and media statements kept the human tragedy of AIDS in full view; they were bluntly critical of America’s lackluster response to the AIDS crisis, and at times crackled with outrage.
The commission’s effectiveness came in part from its diversity. The NCAIDS included experienced medical and public health experts, all of whom had been involved with AIDS policy and care delivery:
- June Osborn, MD, who served as chair, was Dean of the School of Public Health at University of Michigan, and had served on many AIDS advisory panels;
- David Rogers, MD, vice-chair, had also chaired AIDS advisory panels to the state and city of New York, which had the largest numbers of AIDS cases;
- Don Des Jarlais, PhD directed a chemical dependency research program at Beth Israel Medical Center, and an AIDS research program focused on drug addiction.
- Charles Konigsberg, MD, Eunice Diaz, MPH, and Diane Ahrens were public health officials.
But while many national commissions of the time were made up of professional experts and others regarded as experienced leaders [often white and male], nearly half of the NCAIDS members were “civilians” with different relevant experiences on the epidemic’s front lines.
- Don Goldman was an attorney who coordinated the National Hemophilia Foundation’s efforts to improve blood supply safety and improve hemophilia and HIV service delivery to minorities;
- Scott Allen was a Baptist minister who worked with the HIV/AIDS Research Group at the University of Texas Southwestern Medical School, and became involved in AIDS epidemic work when his wife and two children were infected with HIV;
- Larry Kessler was founder and director of the AIDS Action Committee of Massachusetts, which provided AIDS education, services, and outreach; Harlon Dalton was a Yale Law School professor and authority on legal issues related to AIDS, particularly its impact on people of color;
- Belinda Ann Mason was a journalist and fiction writer infected with HIV through a transfusion, and founded the first organizations in Kentucky and Indiana for people with HIV disease.
When Mason died in September of 1991, President George H. W. Bush appointed Earvin “Magic” Johnson, the NBA star newly diagnosed with HIV, to fill her position. Johnson resigned in September 1992 stating he could no longer remain a member of a body whose recommendations were so consistently ignored by the administration. Mary Fisher, an HIV-positive artist and founder of the Family AIDS Network filled Johnson’s position through September of 1993.
Together, the commissioners carried out the most wide-ranging study of the AIDS epidemic to that time, a veritable “Michelin Guide” to HIV/AIDS in America. They worked hard to include the voices that had been left out of earlier investigations, especially those from communities of color. The commission’s work also reopened discussions about America’s approach to drug misuse. Because the NCAIDS operated for four years, providing regular reports and public statements about their work, it helped keep HIV disease visible to both the public and to politicians and other leaders; likewise, it provided hope to those working on the front lines. Finally, by keeping HIV/AIDS in the news and prodding political leaders, the NCAIDS members helped generate support for increased AIDS-related funding. Funding for HIV/AIDS research and health care services grew substantially during the Clinton administration and those that followed.
We invite you to explore the work of this extraordinary group through the documents and resources provided on the new National Commission on AIDS, 1989–1993 site on Profiles in Science.
Susan Speaker, PhD, is Historian for the Digital Manuscripts Program of the History of Medicine Division at the National Library of Medicine.