BOOK REVIEW (SAN FRANCISCO CHRONICLE)
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.