BOOK REVIEW (BRITISH MEDICAL JOURNAL)
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.