Science vs. Reality

IMPURE SCIENCE

AIDS, Activism, and the Politics of Knowledge

By Steven Epstein

University of California Press. 466 pp. $29.95

On May 21, 1990, a thousand AIDS activists staged a demonstration outside the headquarters of the National Institutes of Health in Bethesda. For them, the time for playing nice had long since passed.

Their chant -- "10 years, one billion dollars, one drug, big deal" -- summed up their frustration. They had waited nearly a decade for researchers to develop a drug to combat the HIV virus that causes AIDS, and now that drug, AZT, was faltering in clinical trials. Scientists had had it their way and failed; now AIDS activists wanted a say in all aspects of AIDS research and treatment.

What happens to the leaders of a social movement when they become establishment insiders is at the heart of sociologist Steven Epstein's "Impure Science: AIDS, Activism, and the Politics of Knowledge." If, Epstein writes, "the `purity' of science is guaranteed by its insulation from external pressures, then AIDS research is a clear-cut case of impure science." Indeed, AIDS activists bluntly argued that scientists were too hung up on producing "pure" science that boasted elegant trial design and "clean" data, but that had no relevance to the daily, real-life body count produced by the AIDS epidemic.

Epstein argues that knowledge -- and power -- is gained through the struggle for credibility. Using the AIDS saga as a case history, he meticulously reconstructs how activists, researchers, policymakers, drug companies and physicians maneuvered to obtain recognition and influence to save lives, and at times protect their own reputations and profit margins. A recurrent theme in the book is whether there is any such thing as scientific reality, or does it just depend on who's doing the spin? The credibility battles surrounding scientist Peter Duesberg, who challenges the biomedical establishment's consensus that HIV causes AIDS, is the most intriguing illustration of Epstein's philosophy.

In pursuit of credibility, AIDS activists learned the medical language of virology, immunology and epidemiology and -- often wearing decidedly unscientific garb such as "seven earrings in one ear and a Mohawk" -- pushed themselves into scientific conferences. More important than impressing scientists with their knowledge, the activists provided a face and identity for the researchers who never got closer to the AIDS epidemic than to examine patients' T-cell counts. Activist James Eigo told scientists that "I have a face in my mind for every AIDS-related condition I can describe to you . . . every one the face of a friend."

Knowledge, moral outrage and persistence won the activists a place at the decision-making table. That major accomplishment brought "a lot of euphoria, but there was also a wistfulness about crossing over," said one activist. "From then on we were sort of inside/outside, and not just outside; and [we] sort of lost innocence. I knew that we would never be so pure and fervent in our belief that we were right, because we were actually going to be engaged and, therefore, be more responsible for some of the things that actually happened."

The AIDS activists were credited with nothing less than revolutionizing the way drugs are developed, regulated and tested in this country, and they fought hard to make treatment accessible and affordable for all people with AIDS, including the poor, women, minorities and drug users. But by the early 1990s, as new drugs were pushed rapidly into clinical trials only to fail, some in the scientific community began to grumble that these activists had defeated the purpose of scientific investigation in their haste to see drugs approved.

This argument causes Epstein to lose his customary detachment: "Absent the activists, what sort of knowledge strategies would have been pursued? Pristine studies addressing less-than-crucial questions? Methodically unimpeachable trials that failed to recruit or maintain patients? Inevitably, there are risks inherent in the interruption of the status quo. But these must be weighed against all other attendant risks including those that might have followed from letting normal science take its leisurely course while an epidemic raged."

So are we better off with "impure" science?

Epstein quotes activists Gregg Gonsalves and Mark Harrington, who wrote in 1992, "If AIDS activists ever leave any legacy other than their own bodies, it will be, among other things, a movement for national health care and the democratization of research." Because of AIDS activists, people suffering from disease were increasingly treated as participants in their care, rather than study objects. As Epstein writes, perhaps the "only way forward is to open the `black box' of clinical research, expose the uncertainty and the value choices, then convince people of the considerable importance of participating in such research even after they understand just how messy it truly is." Such an approach leaves people better able to control their own fates, even if it means living with the reality of uncertainty.

The reviewer is a freelance writer and reviewer living in Atlanta.