Background Information
"It has often been said that AIDS in many ways highlights the pre-existing defects in our society. The most glaring and central one has for too long a time been . . . a lack of articulated moral leadership from the highest elected official in this country. In the early years of the epidemic the presidential voice could have immediately silenced the self-righteous, the bigots, and the haters. It could have fostered compassion and human solidarity and drawn appropriate attention to the danger before all of us. It could have encouraged cooperation among federal agencies in support of the NIH's crucial AIDS research efforts, and it could have stopped the dragging of feet and delay tactics of certain federal agencies. It could have reminded us all of the moral supremacy of saving human lives and inspired all of us to re-think our national priorities, which is exactly what we are going to have to do very soon. As a result, we have never had a coordinated national program to fight AIDS."
The National Commission on Acquired Immune Deficiency Syndrome, led by Dr. June Osborn and Dr. David Rogers, began its work eight years after AIDS was first recognized. It would attempt to summarize the state of knowledge about the disease, assess efforts to meet the many challenges of knowledge, education, patient care, and disease prevention, and recommend strategies for bringing the epidemic under control. Its work would highlight the many ramifications of epidemic disease—especially one initially associated with social "outgroups"—and the shortcomings of the public health establishment and the American health care system. The commissioners were a diverse group, bringing a variety of perspectives and experience to a growing public health problem that had yet to be addressed in a consistent and coordinated way.
On June 5, 1981, the U.S. Centers for Disease Control (CDC) published the first reports of a new disease, soon to be named Acquired Immune Deficiency Syndrome (AIDS). AIDS attacks the immune system, opening the way for myriad opportunistic infections and cancers. These infections proved resistant to conventional therapies, and ultimately fatal. During the next year, many more cases were identified, showing that the disease was spreading rapidly. At first, physicians, epidemiologists, and biomedical researchers struggled to understand what AIDS was; was it primarily a cancer? An infection? An autoimmune disorder? If infectious, how was it transmitted, and who was vulnerable? The first AIDS patients were gay men who often had histories of sexually transmitted disease and recreational drug use, leading some researchers to suggest that AIDS was caused by a combination of several diseases and lifestyle. Although gay men would continue to account for large numbers of AIDS cases, it soon became clear that intravenous drug users were at high risk, and that victims also included hemophiliacs and other blood transfusion recipients, heterosexual men and women, and children born to infected mothers. (As AIDS later spread beyond the United States, heterosexual transmission would account for the majority of cases.) Because gay men and IV drug users were the largest groups, however, public and political response to the emerging epidemic was hampered by social stigma, especially in the conservative political climate of the Reagan presidency (1981-1989.)
The federal government's initial response was slow; the Reagan administration, promising to radically reduce the federal deficit, had cut funding to many government agencies, including the CDC, the Food and Drug Administration (FDA), and the National Institutes of Health (NIH). However, the CDC, pulling funds from its other programs, quickly set up a task force, gathered high-quality data, and worked with state and local health departments to better define and track the disease. It also worked to develop a scientific consensus that AIDS was an infectious disease. The CDC held several meetings between 1982 and 1984 to address the safety of the blood supply, which posed many difficulties before it was possible to test for AIDS. Meanwhile NIH and other agencies set up AIDS working groups; the National Cancer Institute (NCI) and the National Institute of Allergy and Infectious Diseases (NIAID) launched AIDS-focused research and several small clinical studies. In July 1983 Congress made a supplemental appropriation of $12 million for Public Health Service AIDS activities, including $9.2 million for research at NIH. In 1984 two research teams, one at NCI and one at the Pasteur Institute, established the human immunodeficiency virus (HIV) as the cause of AIDS; the first HIV test became available the following year. Researchers soon found that HIV has a latency period of up to ten years before acute symptoms of AIDS appear, but infected individuals can transmit the virus during that time.
Despite this progress, federal public health budgets remained flat; agencies were told to fight AIDS with funds reallocated from other projects. The death of actor Rock Hudson from AIDS in 1985, along with other celebrity deaths, raised awareness of the disease's broad impact, and helped prompt the administration to expand AIDS funding and to give more visible support to the AIDS fight. NIAID established a Division on AIDS in 1986; NIH created an Office of AIDS Research in 1987. And Surgeon General C. Everett Koop, earlier sidelined from the federal AIDS response, compiled and released the Surgeon General's Report on AIDS in October 1986. This was followed two years later by Understanding AIDS, an informative pamphlet mailed to every American household.
During these early years, members of the gay community (and their allies) developed the earliest community support networks for AIDS patients, and the first AIDS education initiatives. Likewise, AIDS activists stayed in touch with public health officials about research and treatment progress. They criticized and protested the lack of government support, defined themselves as "People With AIDS," (PWA) rather than "patients" or "victims," and gradually became influential partners in the many policy discussions that went on throughout this period. As historian Victoria Harden noted, "never before had those with a disease self-identified as a distinct interest group, but people with AIDS used the label PWA to empower themselves and demand dignity in a largely unaccepting social climate." (The NCAIDS records reflect this growing participation.)
In 1987, the FDA approved the first anti-retroviral drug, azidothymine (AZT), for AIDS treatment. Not all patients could tolerate AZT, nor did it control HIV long-term, but it raised hopes that better agents would soon be found. The FDA also formalized a category of "Treatment Investigational New Drugs" so that drugs still going through the usual multi-year approval process could be available for AIDS treatment under a "compassionate use" provision.
The Institute of Medicine (now the National Academy of Medicine, part of the National Academy of Sciences) released a detailed report on the AIDS epidemic, Confronting AIDS: Direction for Public Health, Health Care, and Research, in 1986, the first such work by a federal advisory body. The three major recommendations were, first, a massive media, education, and public health campaign to curb the spread of HIV infection, and second, substantial, long-term, and comprehensive programs of research in the biomedical and social sciences intended to prevent HIV infection and to treat the diseases caused by it. Both programs, the report said, should have budgets of $1 billion per year, paid for with new funding, most of this from the federal government. Third, a national commission on AIDS should be created to promote and integrate public and private sector efforts against HIV infection. Created as a presidential or joint presidential/congressional entity, such a commission would advise on needed actions and report to the American people. The report also recommended expanding availability of HIV testing (and encouraging it by keeping it voluntary and confidential), expanding treatment and prevention programs against IV drug use, and fully participating in international AIDS efforts.
The Presidential Commission on the Human Immunodeficiency Virus Epidemic
President Reagan created the Presidential Commission on the HIV Epidemic in 1987, spurred by the IOM report and by the World Health Organization (WHO) Global Programme on AIDS, which required member nations to create domestic advisory commissions on AIDS if they wanted WHO to mediate aid between rich and poor countries. The new commission had a mandate to investigate the situation in the United States and make recommendations, completing work by July 1988. The Presidential Commission conducted over 40 hearings in less than a year and generated 596 recommendations to prevent further spread of HIV, manage care of those infected, and enhance efforts to discover a cure. The final report (available online in the Internet Archive) included a list of the 20 most important findings and recommendations, noting that no one of these could stand alone or be ignored, and that together they comprised a comprehensive national strategy for effectively managing the HIV epidemic. Many of these echoed the IOM report: more funding for education and research, expanded HIV testing and drug abuse treatment, better contact tracing and notification, and participating in international efforts. But the Presidential Commission also proposed replacing the term "AIDS" with "HIV infection"; designating HIV infection as a disability under the law, to reduce discrimination against people with AIDS; and funding scholarship and loan programs for nursing students, and expanding the National Health Service Corps, to reach AIDS patients in medically underserved areas.
The Presidential Commission report was an intelligent and well-organized summary of many aspects of the HIV epidemic, impressively broad despite the tight production schedule. However, the Reagan administration made no immediate response to the commission's proposals. Meanwhile, members of Congress had also been discussing the epidemic, and several congressional committees had held hearings on AIDS since 1982. In 1988, congressman J. Roy Rowland, MD (D-GA) sponsored legislation to create a new, longer-term, independent commission, comprising "individuals with experience and/or expertise pertinent to the AIDS epidemic." The National Commission on Acquired Immune Deficiency Syndrome (NCAIDS) was signed into law (PL 100-607) on November 4, 1988.