In Support of AIDS Activism

Abstract

I was recently asked to participate in an interdisciplinary discussion inspired by Steven Epstein’s (1996) book Impure Science: AIDS Activism and the Politics of Knowledge. The book raises a number of thoughtprovoking questions concerning the construction of knowledge and how scientific credibility is established. However, what was of particular interest to our discussion was the influence that AIDS activism has exerted on the ownership of scientific knowledge and the scientific process. AIDS activists, like no other group, have demanded participation in establishing priorities for HIV-related research and have become participants in the debate on the appropriate methods and outcomes of science. In many instances, AIDS activists have taught themselves the essentials of virology, immunology, and epidemiology, gaining the knowledge to speak as experts. Armed with such expert status, activist groups have challenged the relevance and motivation of medical research, undertaken alternative approaches to traditional clinical drug trials, and brought political pressure to bear on agencies funding AIDS research. The significance of what AIDS activists and the AIDS movement have achieved is emphasized by Epstein’s proposal that they (activists) have successfully questioned “not just the uses of science, not just the control over science, but sometimes even the very contents of science and the processes by which it is produced. Most fundamentally, they (AIDS activists) claim to speak credibly as experts in their own right” (p. 13). It is without question that the actions of AIDS activists have changed the relationship between persons living with HIV/ AIDS, health care providers, funding agencies, and researchers. Although there had been a growing sense of consumerism developing in society over the decades just prior to the identification of AIDS, it was AIDS activists who significantly redefined the meaning of health care partnership and participation in the United States. We need to acknowledge and remember these achievements. Yet, as we acknowledge the achievements of the past, we need to recognize that challenges still exist and the need for activism remains. Admittedly, there have been dramatic advances in the treatment of HIV infection with the advent of new and better drug therapies. In the United States, a majority of individuals with HIV infection have access to HIV-specific care and combination drug therapy. This is not a situation that exists in much of the world. During the Fourth International Conference on Home and Community Care for People Living With HIV/AIDS held in Paris in December 1999, one of the most lively debated and protested issues at the conference was the lack of access to available drug therapies for HIV-infected persons in the developing world. If, as experts predict, the worst of the worldwide HIV/AIDS pandemic lies before us (Fauci, 1999), several questions arise. What is the current status of AIDS activism and who will be the activists of the future? To answer these questions, it may be important to critically examine the AIDS movement in this country and how it has changed over recent years. Epstein observes that when social movements or activist groups engage the system, both the system and the movement are likely to be altered over time. In some ways, the early AIDS movement was shaped as much by the movement’s adversaries as it was by its activists. The crisis of the AIDS epidemic combined with the perceived lack of a meaningful response made AIDS activism almost a given. This was especially true since AIDS was first linked to the gay community—a community already mobilized to combat discrimination and demanding greater participation in the system. But those affected by HIV infection and the social Editorial