Credibility and Representation

Even if researchers were dubious about the patient community's ability to gauge what research was most important, they certainly recognized the practical virtues of cooperation and negotiation in order to ensure accrual. In this sense, a basic "credibility achievement" of treatment activists has been their capacity to present themselves as the legitimate, organized voice of people with AIDS or HIV infection (or, more specifically, the current or potential clinical trial subject population). This point is easily missed, but important, since the three groups—activists, people with AIDS or HIV, and clinical trial participants—overlap but are not isomorphic, and it is a complicated question whether in fact activists do meaningfully represent the diverse groups in the United States that are affected by HIV. Even within gay communities, the question of representation can be complex, in part because the activists are often politically more radical than the gay mainstream on whose behalf they speak, and in part because gay researchers and health professionals may also make plausible claims to representation. "What right do these people have to think that they are representing the gay community, when I'm also here and just on the other side of the fence?" Donald Abrams complained.^[72]

Looking back at her experience with treatment activism, Michelle Roland reflected with some candor, "I never represented 'people with AIDS.' I represented activists . And those are different people, you

know. They are a subset of people with AIDS."^[73] Yet the extraordinary success of treatment activists (who have always been a relatively small group and whose ranks have been further depleted by burnout, illness, and death over the years) stemmed in large part from their capacity to convince the biomedical establishment not only that they spoke for the larger body of patients but also that they could mobilize hundreds or thousands of angry demonstrators to give muscle to their specific requests. And once activists monopolized the capacity to say "what patients wanted," researchers could be forced to deal with them in order to ensure that research subjects would both enroll in their trials in sufficient numbers and comply with the study protocols. On the basis of their credibility, activists constructed themselves as an "obligatory passage point" standing between the researchers and the trials they sought to conduct.^[74] Of course, by the same token, the activists wanted to see the trials conducted, so the point, really, is that the relationship became a powerfully symbiotic one.