From Causation to Treatment

The democratizing claims of laypeople, while surfacing regularly in the causation controversies, have been even more pronounced in the evolution of debates about treatments for AIDS. These debates, the topic of part two, have been enacted concurrently with the causation controversies, and they involve some of the same protagonists; indeed, references in past chapters to topics such as AZT, which feature prominently in part two, suggest a certain overlap. More profoundly, the intervention of laypeople, particularly within gay communities, in debates about the nature and causation of AIDS from 1981 onward helped construct "knowledge-empowered" communities that could then participate in even more radical ways in debates about treatments.

Yet in certain respects, research into treatment is different from the sort of research involved in determining the cause of AIDS. Since drugs cannot be tested without patients willing to participate in clinical trials, laypeople occupy a central position in the very process of knowledge-making. And since the approval of drugs is often a highly

politicized process involving government agencis, pharmaceutical companies, and other players, debates about the safety and efficacy of treatments travel with particular ease between the pages of scientific publications, the mass media, and—in the case of AIDS—activists publications and the gay and lesbian press. The chapters that follow track the history of research into antiviral AIDS drugs and explore the crucial role of AIDS activists in transforming themselves into experts who could speak credibly about treatments. The interventions of the AIDS movement have had profound implications.for the social construction of belief—for what we come to think is true about the safety and efficacy of antiviral drugs.