THE FAUCI FILES, 3( 88): The NIH Activists: "Acceptable Risks"?
The Caufield Review
September 1, 2000
In 1993, Charles Caufield wrote:
"(Acceptable Risks) subjects (Delaney and Corti)
are not likely to be treated so kindly by history."
Although Charles passed away from reasons unrelated
to AIDS in 1994, he would have been ecstatic to
learn of Delaney's psychiatric breakdown when
the facts proving AZT as a major cause of
AIDS and death were published for all to see.
First published in the San Francisco Sentinel on 9/23/93
Charles R. Caulfield
This work might better be titled, "Indiana Jones and
the FDA." It's cover describes it as "the explosive
politics of life vs. profit in America - How two
courageous men fought the FDA To save thousands
of AIDS patients and changed the drug industry forever."
The story of Martin Delaney and Jim Corti, written
as told by them to a Wall Street Journal feature
writer reads like an election year "authorized
biography", heavy on ideology, soft on content. This is
forgivable, though, in light of the fact that its subjects
are not likely to be treated so kindly by history.
A sweeping chronology of Project Inform's highjinks with the
National Cancer Institute's Sam Broder and the development
of an underground AIDS drug running operation into a
federally funded pharmaceutical industry political action
committee casts its heroes as a sort of combination of
James Bond and Mother Theresa.
With never a thought for themselves, these
two brave men developed and implemented,
with the acquiescence of the treatment underground,
protocols for treating people with AIDS using Ribavirin,
Isoprinosine, Dextran Sulphate and Compound Q, all in order
to save desperate AIDS patients. Their combative, forceful
lobbying at the NIAID and the FDA pressed into place a
medical ideology from which dissent has been rendered
heretical. Their ability to manipulate a chaotic national
public health response into the molding hands of powerful
pharmaceutical industry giants is a wonder to read. How
the nefarious non-profit fund awarding policies of these
drug companies allowed PI to become what is perceived as
the credible voice of the people, in treatment advocacy
concerns. This epic course of events is, undeniably ,
without parallel in FDA history.
Yet a strange, vague unfamiliarity arises in the
head of one who reads these pages. Memory,
it seems, is haunted by a strange recollection
that there was more to all of this than the
leafs of this thriller reveal.
What is not recounted in this book raises
some serious consideration of just what it
is that Project Inform's founders would like us to forget.
For example, a few glaring omissions from this retelling
seem rather odd to this reviewer.
First, there's hardly a mention of AL-721, which
was for a few years the underground treatment
of choice for people with AIDS prior to the
marketing of AZT. A substance which generated
enormous dialogue involving Martin Delaney and the Food and
Drug Administration, which was on numerous occasions
reported by the "venerable" AIDS Treatment News as
"appearing to work"? A nontoxic, affordable and possibly
effective treatment for AIDS was completely discarded by
the mainstream and the underground after a single tiny,
loosely controlled clinical trial at St. Luke's/Roosevelt
Hospital in New York in favor of a class of drugs with at
that point unknown potential for toxicity and a price tag
which stunned Wall Street and AIDS activists equally.
Despite the fact that the book tells us that these two
swashbuckling advocates of the dying were busily working to
change the drug industry forever, it doesn't seem to have
room in its 466 pages for a brief mention of this trifling
event. There is, of course, the uncomfortable little
matter of the Dextran Sulphate side effects problem, which
the book also neglects to mention. It seems that Dextran
Sulphate, a complex sugar molecule used in Japan to treat
atherosclerosis, showed promise in the test tube as a drug
which would synergize the effects of AZT, and thus allow
lower, presumably less toxic doses of AZT be used. The drug
running cabal, advocating selflessly once more for the
desperate, failed to notify its constituents that Drs. in
clinical practice were observing severe side effects, such
as gastrointestinal bleeding, due to the fact that the drug
broke down in the system into sulphuric acid. Of course,
they did become a bit less enthusiastic about this drug
around this point, but issued no warnings as such, until
the already imported stock of the drug had been dispensed
to save the dying.
Maybe mainstream America will be enamored
by this historical fiction. Those who lived in
urban Gay America during the recounted period should beware
this little piece of public relations. Memory is a faculty
which seems, sometimes, to fail the gay community in
matters of those posing as our "friends" and "advocates".
Project Inform has become, through articulating what it
claims are our agenda, the federally recognized voice for
the medical needs of PWAs. In a year that San Francisco's
City AIDS budget is being shredded, PI is doing just fine.
Receiving corporate donations from the drug companies, and
federal funds through Ryan White C.A.R.E. allocations, they
have become an integral part of the bureaucracy they arose
to combat. Delaney, throughout this account, repeatedly
states that the drugs worked fine, it was the bureaucracy
which was intransigent. His problem now is that the
bureaucracy now works the way he wants it to. Unfortunately
for us, the drugs themselves leave more to be desired.
If one is interested in finding out what is really going on
in AIDS treatment, one might better take the $24.00 retail
cost of this book, and take a PWA out to dinner and ask
him. He'll most likely tell you that the pain and
demoralization endured through their medical history, is
not a bit assuaged by this piece of self-aggrandizement,
which for each copy sold in hardback, will place $4.90
each, in the pockets of these two heroes of the epidemic.