Preferred Citation: Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley:  University of California Press,  c1996 1996. http://ark.cdlib.org/ark:/13030/ft1s20045x/


 
Chapter 7 The Critique of Pure Science

Poison? Or Just Mediocre?

In fact, neither NIAID's press conference, nor the FDA's approval, nor even the article in the New England Journal and the


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accompanying editorial succeeded in bringing closure to debates about AZT. This was true both within the AIDS movement and among the scientific establishment. In gay communities, controversy about AZT had been bubbling away ever since the original licensing of the drug in early 1987 for use by people with full-blown AIDS. The New York Native , the gay newspaper most closely associated with the promotion of heretical views, had been calling AZT a "poison." Its administration "was an act of genocide on the scale of the kinds of 'medical experiments' conducted in Nazi Germany," the newspaper argued.[30] "AZT's alleged benefits are not backed up by hard data, and are not sufficient to compensate for the drug's known toxicities. … Do not take, prescribe, or recommend AZT," read the Native 's cover in June 1987; an article by John Lauritsen, the HIV dissenter and ally of Peter Duesberg's, accompanied it.[31]

Since Lauritsen did not believe that HIV caused AIDS (see part one), it followed that he would not support the use of an anti-HIV agent as a treatment for the syndrome—especially one that was a DNA chain terminator with potentially serious effects on healthy body cells. But Lauritsen, like Sonnabend, Callen, and other HIV dissenters, also argued that the Phase II AZT study had been methodologically flawed in ways that cast doubt on its substantive conclusions. "In practice, the study became unblinded almost immediately," wrote Lauritsen, recapitulating the various rumors about problems in conducting that study. Though, as with 019, it could be maintained that any noncompliance by participants actually strengthened the results, Lauritsen turned the argument around by proposing that the failure to maintain perfect double-blind conditions had pernicious effects on the research process. Since the research staff knew from lab test results which patients were receiving AZT and which were taking the placebo, he argued, they may have provided better overall care to the AZT patients, whether "unconsciously or deliberately"; this difference in care, rather than the administration of AZT, might explain the difference in progression to AIDS.[32]

Lauritsen's was a textbook case of how to deconstruct a scientific study. "Scientists constantly face uncertainty," Susan Leigh Star has emphasized. "Their experimental materials are recalcitrant; their organizational politics precarious; they may not know whether a given technique was correctly applied or interpreted; they must often rely on observations made in haste or by unskilled assistants."[33] Yet precisely because contingency, confusion, misgivings, and indecision tend to be "written out" of scientists' published work as part of their normal


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persuasive practice, nonscientists often have mistaken notions about the degree of certainty behind the knowledge that science generates. As Harry Collins has concluded, "There is a relationship between the extent to which science is seen as a producer of certainty and distance from the research front."[34] Thus one strategy for undercutting the credibility of scientific claims is to bring the audience in for a closer look, so as to recapture the contingency and messiness: "Irrespective of whether the critic describes 'truly disqualifying' acts of clumsiness or incompetence, or irrelevant details, the mere act of describing an experiment as a piece of ordinary life reduces its power to convince."[35]

Although dissenters in the AIDS causation controversy universally rejected AZT, criticisms of the drug were not limited to this group. Particularly in New York City—which Martin Delaney characterized as "almost unique in the nation in its anti-AZT hysteria"[36] —there were numerous pockets of suspicion of AZT. Throughout the epidemic, the New York gay community had been—depending on one's perspective—either more radical in its skepticism toward authority or more possessed of a debilitating paranoia than its counterparts in San Francisco and elsewhere around the country. From early on, New Yorkers had seemed to show more interest in conspiratorial theories about the origins of AIDS. With the advent of the HIV antibody test in 1985, even the more mainstream organizations like the Gay Men's Health Crisis had advised against taking the test, on the grounds that those testing positive might be rounded up and quarantined or at least discriminated against; by contrast, San Francisco organizations like the AIDS Foundation had taken a more neutral approach, while Project Inform had advocated in favor of testing as the necessary first step in a program of early intervention. Randy Shilts has suggested that such political and attitudinal differences reflected the relative degrees of comfort of the two gay communities as they evolved in the years before the epidemic, with New Yorkers more "closeted" and concerned about threats to their social privilege and San Franciscans more out-of-the-closet, secure, and influential vis-à-vis their city government.[37]

Whatever the structural or psychosocial roots of these dispositions, they surfaced as well in debates over AZT. Though the "AZT is poison" argument was always a minority view among treatment activists and the communities at large, it was less of a fringe perspective on the East Coast than it was on the West Coast.[38] Indeed, a 1989 gay health conference at Columbia University in New York erupted into a debate between Delaney and Sonnabend over AZT. Interestingly, Delaney agreed that there were "some problems" with the original AZT study


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but also "[took] some responsibility for those problems": "We as a community screamed and hollered to move that drug through the system and study it as fast as humanly possible." Counseling pragmatism over a methodological purism, Delaney told the audience that to obsess about any deficiencies in that study "is a little like having study groups on the Council of Trent."[39]

In its treatment newsletter, PI Perspectives , Project Inform expanded on the view that it was willing to accept a certain degree of uncertainty about drugs as a trade-off for more rapid approval: "Patients and their advocates, including Project Inform, pushed the regulatory and research system hard to make AZT available as soon as possible. We should not be surprised that the drug came into common use while our understanding of it was still very crude."[40] The irony is that, when it was first approved, "there was widespread belief that AZT would be quickly replaced by other drugs with similar benefits and fewer side-effects." That hope had proven to be misplaced, so now patients and advocacy groups found themselves having to make the best of a not so great situation, forced to depend on a mediocre drug. But in response to this predicament, Project Inform advocated judicious risk taking over what it saw as denial and defeatism.

Having committed itself to an interventionist therapeutic strategy, Project Inform in a sense depended on AZT, the only approved anti-HIV drug and the only such drug with widespread public credibility. AZT was, at the moment, an "obligatory passage point": Project Inform needed the drug to advance the group's mission.[41] With the news about ACTG 019, Project Inform pushed its critique of the AZT dissidents: "This latest information should (but won't) sound the death knell for the views of those who have bitterly opposed AZT for the last 3 years."[42] The only real question now, Project Inform's newsletter proposed, was whether every HIV-positive person shouldn't begin immediate AZT use, even if his or her T-cell count was higher than five hundred per cubic millimeter. "At the very least, it is one rationally supportable course of action, perhaps more so than the opposite view."


Chapter 7 The Critique of Pure Science
 

Preferred Citation: Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley:  University of California Press,  c1996 1996. http://ark.cdlib.org/ark:/13030/ft1s20045x/