AIDS Activism and the Rejuvenation of the Public Sphere

On April 23, 1984, Health and Human Services Secretary Margaret Heckler held a press conference announcing the discovery of the virus believed to cause AIDS.(1) Her announcement expressed both pride in the research effort that led to the discovery, and optimism that further research would quickly bring a blood test for the virus, to be followed by a vaccine within two years. "Today," she said, "we add another miracle to the long honor roll of American medicine and science. day's discovery represents the triumph of science over a dreaded disease. Those who have disparaged this scientific search . . . have not understood how sound, solid, significant medical research proceeds" (Shilts, And the Band 450). Unfortunately, Heckler's optimism proved unfounded. While researchers did discover a blood test for HIV, the virus believed to cause AIDS, few are optimistic about the chances of developing a vaccine, even ten years later. In fact, Dr. William Paul, the Director of the Office of AIDS Research at the National Institutes of Health, argues that much of the research undertaken over the last ten years has been misdirected, and calls for a "back-to-the-basics" approach for research into HIV and AIDS. Because contemporary medicine has been unable to produce quick results in the fight against AIDS, many people in the communities most affected by the disease have argued for changes in the way AIDS research is conducted. Initially, people with AIDS sought to increase their access to experimental treatments and to speed up the process by which drugs that might treat AIDS were brought to the market. As the epidemic has progressed, however, AIDS activists have broadened the scope of their critique to address more basic issues about research and treatment. As they move from arguing against the specific policies of government agencies, research institutions, and pharmaceutical companies, to a broader critique of the medical research establishment, AIDS activists have created a larger role in the debate for those most affected by the epidemic. In this process, they have found themselves arguing against doctors and researchers, pharmaceutical manufacturers, government officials, and increasingly, among themselves, over the nature and direction of AIDS research.(2) This essay focuses on the controversy generated by disagreements over the nature and direction of AIDS research. Specifically, we identify two argumentative strategies AIDS activists use to claim the authority and ability to speak to issues surrounding AIDS research. The first strategy, which we label redefinition strips away the mystique that surrounds science, and enables others to participate in the discourse surrounding AIDS research. Activists challenge public images of medicine and science, by arguing that doctors' and researchers' efforts are driven by private political concerns in addition to medical and scientific issues. The second strategy, which we call translation, enables people with AIDS, doctors, and researchers to meet in the public sphere to discuss issues surrounding AIDS research and treatment. Activists explain scientific information to people with AIDS, and present the needs of people with AIDS to doctors and researchers. We also argue that activists' use of these arguments place them within the context of a larger movement in society, in which citizens reject the notion of control by experts, and reclaim for themselves control over larger aspects of their lives. Texts for this study are drawn from literature published by AIDS service organizations and other activist groups. One of our major sources is Treatment Issues, a monthly newsletter published by the Gay Men's Health Crisis (GMHC), a New York City AIDS advocacy and service organization. Treatment Issues, with a monthly circulation of over 20,000, is dedicated to experimental AIDS therapies. According to the publishers, most readers are people with AIDS, but researchers, medical schools, libraries, other AIDS organizations, social service organizations, and politicians also subscribe. …