Credit Where Credit is Due
That treatment activists have succeeded in establishing their scientific credibility and their cultural competence in biomedicine is widely acknowledged by a range of eminent researchers and government health officials. Although such testimonials appear sincere, they
need not, of course, be taken entirely at face value. However, even the most cynical interpretation would suggest that these authorities see the activists as important enough to merit flattery. (This, too, is a credibility tactic that researchers can employ.) Anthony Fauci has made clear that "there are some [activists] who have no idea what the hell they're talking about," but he was nonetheless happy to grant that "there are some that are brilliant, and even more so than some of the scientists." Robert Gallo has called Martin Delaney "one of the most impressive persons I've ever met in my life, bar none, in any field. … I'm not the only one around here who's said we could use him in the labs." Gallo described the level of scientific knowledge attained by certain treatment activists as "unbelievably high": "It's frightening sometimes how much they know and how smart some of them are." Prominent academic researchers also typically acknowledge the gradual acquisition of scientific competence on the part of key activists. "Mark Harrington is a perfect example," recalled Douglas Richman. "In the first meeting [of the Community Constituency Group] he got up and gave a lecture on CMV … that I would have punished a medical student for—in terms of its accuracy and everything else—and he's now become a very sophisticated, important contributor to the whole process." Reflected John Phair, a former chair of the ACTG Executive Committee: "I would put them up against—in this limited area—many, many physicians, including physicians working [with] AIDS. They can be very sophisticated."
Praise of treatment activists by biomedical authorities is one measure of the activists' acquisition of credibility. But real-world consequences speak louder: What difference has it made to have activists involved in issues of AIDS research and drug development? How has biomedical research been reconfigured as a result? Examples prove to be numerous: The arguments of AIDS activists have been published in scientific journals and presented at formal scientific conferences. Their publications have created new pathways for the dissemination of medical information. Their pressure has caused the prestigious journals to release findings faster to the press. Their voice and vote on review committees have helped determine which studies receive funding. Their efforts have led to changes in the very definition of "AIDS" to incorporate the HIV-related conditions that affect women. Their interventions have led to the establishment of new mechanisms for regulating drugs, such as expanded access and accelerated approval. Their arguments have brought about shifts in the balance of power between
competing visions of how clinical trials should be conducted. Their close scrutiny has encouraged basic scientists to move compounds more rapidly into clinical trials. And their networking has brought different communities of scientists into cooperative relationships with one another, thereby changing patterns of informal communication within science. Though activists have never sought or established absolute jurisdiction over any contested scientific terrain, they have, to use Andrew Abbott's term, won the rights to an "advisory jurisdiction" analogous to the relation of the clergy to medicine or psychiatry. Of course, as Abbott notes, advisory jurisdictions are characteristically unstable, "sometimes a leading edge of invasion, sometimes the trailing edge of defeat."