Impure Science. AIDS, Activism and the Politics of Knowledge
Steven Epstein
University of California Press, $29.95, pp 465
ISBN 0 520 20233 3
Just 20 years ago it was all simple. With the global eradication
of smallpox, the scourge of infectious disease seemed finally defeated.
Drug companies had developed production line techniques of drug
innovation, and the routine use of randomised, double blind trials
would ensure that tragedies like thalidomide would be a thing of the
past. Research scientists would develop cures, doctors prescribe them,
and grateful patients swallow them; the expert was in his heaven, the
public was in its place, and all was right with the medical world.
The main reason why that "golden age" of the 1970s now seems so far
away is AIDS. The lethal new disease that broke up the party is
still - a decade and a half and a billion dollars later - without vaccine
or cure and is spreading globally out of control. Above all, the
syndrome's deadliness, and the ensuing panic and politics radically
called into question standard hierarchies of medical knowledge, themes
explored by the sociologist Steven Epstein in his thoughtful analysis
of the politics of expertise in contemporary America.
As he shows, lay people and AIDS activists were able to assume a role
routinely denied to those beyond the magic laboratory, as participants
not just patients. This was possible because People-With-AIDS possessed
a daring born of desperation and outrage; moreover, at least in the
case of the New York and San Francisco gay communities, PWAs were
middle class, politically savvy (thanks to Gay-lib), and highly
educated. The establishment began to express astonishment at the
knowhow of ACT UP spokesmen: "It's frightening sometimes how much
they know," commented Gallo, revealingly.
This surprising irruption of lay expertise had a key impact in the
domain of therapy. Initially, the activists' complaints were simple:
treatment was too little, too late - "Drugs into bodies" was the
campaign slogan. But soon users' lobbies delved into deeper questions:
was AZT effective, or was it "AIDS by prescription"? Who was
deciding its distribution? And did the whole system - whereby innovation
in treatments was left to the vagaries of drug company policies, market
forces, and FDA validation - really serve patients' interests?
Not least, the users' group pressure challenged the design and even
the morality of classic clinical trials. Why did trial findings
contradict each other? Could it really be ethically justifiable to
maintain the placebo group during a lengthy ("dinosaur") trial, and
so perhaps knowingly withhold a promising treatment from those whose
life was daily ebbing away? Gay journalists likened such "laboratory
rats" to the victims of Nazi medical experiments. With time against
them, sufferers voted with their feet, setting up "buyers' clubs,"
making bootleg drugs, smuggling untried drugs across the border, or
subverting clinical trials (such as by drug sharing) conducted on the
classic model. So persuasive were their reasons and so strong the moral
case, that a sizeable body of doctors, scientists, and even government
representatives were won over - or at least bowed to political
pressure.
The results? Fresh thinking has followed about how clinical trial
protocols need to be rewritten, to ensure that patient welfare be
respected alongside the requirements of science. And the patients'
voice has spread beyond the AIDS community - leading to activist-experts
among other groups, notably women with breast cancer, who have learned
from ACT UP that knowledge is indeed power. The down side, according to
many scientists, is that the painstakingly devised protocols for
conducting "pure" clinical trials were wrecked, in effect setting
back AIDS research for a decade and subverting the very safeguards
patients had earlier demanded.
"Who shall decide when doctors disagree?" ran the old medical
riddle. As Epstein's able study demonstrates, with AIDS the quarrel of
the "experts" opened up a chink in which users and lay people could
establish themselves as new carriers of credit (though they too fell
out among themselves). Partly as a consequence, the very idea of
expertise could itself be challenged, provoking a great debate as to
who should have a seat at the table in a paternalistic medical setup
being forced to become more democratic, accessible, and client
friendly. Old medical myths were blown sky high: things will never be
the same again.
Roy Porter,
professor of social history of medicine,
Wellcome Institute for the History of Medicine,
London
Rating: ***
