The Politics of Purity
Taking on a more profound challenge, one suggested by Terry Sutton's poignant comment, activists interrogated the presuppositions of scientific "cleanliness." Did "clean" data come only from "pure" subjects? Was "messy," "impure" science necessarily bad science? The debate between fastidious and pragmatic approaches to clinical trials already pointed to these questions; AIDS treatment activists pressed them even further. People with AIDS were not in awe of that "strange and abstract god, clean data," Jim Eigo told a Senate health subcommittee. Similarly, John James argued that "Good Science, like God, patriotism, and the flag, are rhetorical devices designed to be impossible to argue against—devices often used in the absence of a good case on the merits." Academic researchers could be counted on to come up with "elegant" research designs, but were these the ones that would most effectively answer the burning questions?
The metaphors varied, but the implication, in each case, was similar: the defense of science put forward by mainstream researchers was an ideology designed to promote the kind of science they happened to do as the only kind that could be called science. Purity and cleanliness, in this sense, were not intrinsic to the scientific project; they were legitimating metaphors that imbued modern scientific institutions with an appearance of the sacred.
Building on concepts like Feinstein's notion of "pragmatic" trials, activists hinted at (though never fully described) what they saw as a preferable kind of science, which would be more accurate, more useful, and more responsible. This science would be less preoccupied with the formal rules that prevent "contamination" and more open to the varying of experimental design in recognition of practical barriers, ethical demands, and other "real-world" exigencies. "The truth is that [clinical trial] research is muddy, and people need to start acknowledging that," San Francisco activist Michelle Roland explained. "You can't get good clean answers, the world does not work that way. Patients tend to not work that way unless you totally manipulate them. And this is not a population that is going to be easily manipulated. So you either have muddy research that you know is muddy, and you can at least say, 'This is where it's muddy,' or you have muddy research and you don't even know how muddy it is."
The championing of "real-world messiness" was also the strategy of Martin Delaney of Project Inform when he decided, in 1989, to conduct research on "Compound Q" (tricosanthin), a drug obtained from a Chinese cucumber that had been shown to kill HIV-infected macrophages in the test tube. Believing that the official study of Compound Q was too small and that it was using inadequate dosages, Project Inform initiated its own study with the cooperation of a number of doctors and laboratories and forty-two participants in three cities. No placebo controls were used. The following year, Delaney reported his cautiously optimistic findings at the main panel on clinical trials at the Sixth International Conference on AIDS, in San Francisco. Delaney acknowledged that Project Inform had "stretched the rules" by including research participants who were simultaneously taking other medications. But rather than accept that such procedures contaminated the study, Delaney argued that the "real-world conditions" of his study were precisely its virtues and the warrants of its validity. "This is the real-world laboratory," Delaney proclaimed. "This is not the artificial world of clinical trials."
Needless to say, the Compound Q trial sparked considerable controversy, and it prompted an FDA investigation, though in the end Project Inform was allowed to proceed. At an earlier juncture in the study, when two participants went into comas, Delaney was blasted by Paul Volberding, who was directing the official study of the drug at the University of California at San Francisco. "It doesn't take a genius to hand out drugs," said Volberding, "but it takes a certain amount of discipline to ask questions in a rigorous way." And at the AIDS Conference, Delaney was attacked by co-panelist Arnold Relman, editor of the New England Journal of Medicine , who defended the "proven methods of science." "Let's not go back to the days of black magic," Relman exhorted. For his part, Delaney continued to defend his "real-world laboratory," but the experience of designing and conducting a study also made an impact on him. "The truth is, it does take a lot longer to come up with answers than I thought before," he admitted at a community forum in 1990.