The Refashioning of Patients and Doctors
The impact of the AIDS movement on biomedical institutions in the United States has been impressive and conspicuous. At the same time, as Alberto Melucci has noted, social movements often have a "hidden efficacy" which becomes apparent only over time: by challenging cultural codes and conventions, they suggest to the broader society "that alternative frameworks of meaning are possible and that the operational logic of power apparatuses is not the only possible 'rationality.'" Given the diverse influences that AIDS activism has already begun to exert, it seems likely that the movement will engender just this kind of shift in systems of meaning.
For instance, it has rapidly become something of a cliché to say that the doctor-patient relationship will never be the same in the wake of AIDS. As Stanford AIDS researcher Thomas Merigan reflected, "The doctor isn't the same doctor [as] when I started in practice. … The doctor in the past was somebody who made your decisions for you and held your hand; and … you would just believe in him." Granted, models of interaction between doctors and patients have diversified considerably in recent decades: AIDS provides a convenient frame for summarizing changes that were already in the works. What is perhaps the significant effect of AIDS, then, is that a more cooperative model has become normative (at least in medical rhetoric) and has been incorporated into medical school curriculums. This changed conception of the doctor-patient relationship has also been linked explicitly to an emergent understanding of the appropriate researcher-subject relationship. Patients have a "participant's interest" in clinical research that extends beyond the mere protection of their "rights" as "human subjects"; communities have a stake in the review of research protocols that is not satisfied by the token request for their "input."
"Having our patients or our research subjects ask—or demand—to have an active voice in what we do and how we do it may be challenging, time-consuming, and even unpleasant," comments UCSF's Robert Wachter, one of the organizers of the International AIDS Conference in 1990. "It is also undeniably right."
On first glance it may be surprising, but on reflection it seems predictable that one of the ways in which AIDS treatment activists are changing the character of medical relationships is by deciding, in some cases, to pursue careers in medicine. Two of the activists interviewed for this book, Michelle Roland and Rebecca Smith, had already proceeded from ACT UP to medical school; a third, Garance Franke-Ruta, aspires to the "medical school class of 2000." "I was always interested in medicine," Roland recalls, "but I did not want to go to medical school"; "I did not like doctors, I thought they were arrogant, I thought they were just not pleasant people, I thought their values were fucked up—and I did not like Western medicine. I, at that point, wouldn't take aspirin for a headache. You know, I was one of those people." Ironically, it was Roland's experiences with ACT UP that made her recognize "that medical training was going to give me the power that I wanted [in order] to influence health care," and "that I was going to be a much more powerful advocate and a much more intelligent advocate if I understood what I was arguing about, and if I understood what the people I was arguing with believed. …" Smith, meanwhile, has sought to use her activist experience to improve the medical curriculum at her university by increasing students' exposure to the statistical principles underlying clinical trials.