Important note: Information in this article was accurate in 1996. The state of the art may have changed since the publication date.
San Francisco Chronicle - The Voice of the West, 901 Mission Street, San Francisco, CA 94119 - Sunday, December 22, 1996 - Page 3
Reviewed by, David Perlman
AIDS, Activism and the Politics of Knowledge By Steven Epstein University of California Press; 466 pages; $29.95 ------------------------------------------------------------
The unfinished history of the fight against AIDS is as much a tale of militant advocacy as of scientific progress.
The story is now effectively told by Steven Epstein in "Impure Science," a thorough and often dramatic account of the many ups and downs that have marked the battles to control the epidemic during the past 15 years.
Epstein, a sociologist at the University of California in San Diego, is a good reporter. He focuses primarily on analyzing the degree to which the efforts of AIDS researchers, drug companies, politicians and government agencies have been directed by activists with powerful agendas and sophisticated medical knowledge.
"Treatment activists," says Epstein, "have succeeded in establishing their scientific credibility and their cultural competence in biomedicine." Therein lies their growing success in influencing the focus of both scientists and the pharmaceutical industry on the epidemic, as well as the direction and methods of much clinical research. The power and knowledge of many leaders in the AIDS activist community, according to Epstein, "is acknowledged by a range of eminent researchers and government health officials."
So over the years since 1981, when the public first became concerned about what was then invidiously termed an outbreak of "gay cancer," such organizations as ACT UP, Gay Men's Health Crisis, the Treatment Action Group and San Francisco-based Project Inform earned credibility by teaching themselves about virology, immunology and biostatistics. Thus they forced the establishment of "credentialed experts" to listen to their arguments and act on them, Epstein says.
In his carefully documented account, Epstein recalls many of the major controversies that have marked the AIDS epidemic: The bitter personal quarreling in the claims and counterclaims between the American scientist Robert Gallo and France's Luc Montagnier was one. The stubborn denial by Peter Duesberg of HIV's role in the disease, and the curious allies his ceaseless campaign has acquired, has been another. Intraparty fighting has split some of the activists themselves -- between those who blast the drug AZT as poison, for example, and those who have pushed for its early use in HIV-positive patients.
Unfortunately, Epstein's thorough and revealing study is obviously an adaptation of his original doctoral dissertation, and at times he can become excessively academic. Writing of the varied approaches that researchers have taken, Epstein offers lay readers this mind-numbing language:
"The shifting dimensions and porous borders of this field are not predetermined by any essential characteristics of science; rather, they become evident to the analyst by means of tracing the rebounding pathways of influence and engagement." Even an academic might recoil.
What is most instructive in Epstein's book, however, is his analysis of how powerfully well- informed, militant and organized advocates can affect the distribution of government money and influence the biomedical establishment in its strategies against a single disease.
The successes of ACT UP and other groups, and their willingness to withstand attacks as troublemakers, have already served as object lessons for activists against breast cancer and for advocates of the recognition of chronic fatigue syndrome as a legitimate disease.
"Impure Science" proves definitively how consumers, armed with thorough knowledge, can influence public health policy, budget funding and even academic research toward their own goals in combatting the diseases that threaten their lives.
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Copyright © 1996 - San Francisco Chronicle Press. All rights reserved. Reproduced with permission. Reproduction of this article (other than one copy for personal reference) must be cleared through the San Francisco Chronicle, Permissions Desk, 901 Mission Street, San Franciso, CA 94103. You may also send a fax to (415) 495-3843, or an email message to chronperm@sfgate.com. http://www.sfgate.com.
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