© Wendell Ricketts, 1992, 2005. All rights reserved.
First published
in QW, October 25, 1992, pp. 45-49, 70-71.
PART
I: Inside the AIDS Mafia Go to Part II: Fool’s Gold
ACCORDING TO THE
NATIONAL CLEARINGHOUSE ON AIDS AT Atlanta’s Centers for Disease Control, there
are 93,484 AIDS organizations now operating in the United States. That includes
everything from research centers to hospices, from support groups for the
“worried well” to guerrilla clinics to safe-sex outreach programs for street
hustlers. As a conservative estimate, these 93,000-plus organizations involve
more than a million employees and volunteers.
Every
one of those organizations—and every one of those individuals—has an opinion
about AIDS: about what causes it; about what treatments are best; about what public-health
strategies should be followed; about the political ramifications of the
disease; about what drugs pharmaceutical companies should be developing; and
about which public figure is a community hero, a murderer, or a Nazi (the
accusation ACTUP co-founder Larry Kramer levelled at Dr. Anthony Fauci,
Director of the National Institute of Allergy and Infectious Diseases, in
1988).
After
more than a decade, that is, AIDS has become the proverbial elephant described
by blind men. “It is like a rope,” says the one at the tail. “No,” another
insists indignantly, his hand on the elephant’s flank, “it is very like a
wall.”
Virtually
no one, however, is able to see the whole: the morass of scientific
information, much of it conflicting, a lot of it in dispute even among
scientists, most of it incomprehensible to lay people; the ongoing influence of
class, race, and gender on the leadership style and tactics of AIDS activists;
the incompetence, petty competition, and careerism that play as large a role in
AIDS science as does any desire to end the epidemic; the in-fighting and
politicking that can bring even straightforward discussions—such as whether the
CDC will or won’t expand its official definition of AIDS—to a grinding halt.
Still,
we like to think we know a lot about AIDS. And we like to think that we come to
our opinions based on the facts. Facts, unfortunately, are notoriously hard
things to pin down—particularly when it comes to AIDS. As a result, most of us
wind up believing exactly what we hear—despite our parents’ earnest
warnings—provided we hear it from someone we trust.
Our
credulousness about AIDS, in fact—our willingness to believe our experts, our
government, our activists, our media (pick your favorite—has led us into some
seriously murky waters. It’s rare that we question the medical establishment—or
the spokespersons who “interpret” science for the benefit of ordinary mortals.
It’s rarer still that we ask how someone knows what he says he knows
about AIDS—or about the Machiavellian politics that surround this disease and
which color every opinion.
And
for many of us, the rarest thing of all is to turn an appraising eye on AIDS
activism and ask for the same accountability from activists that we so often
demand from drug companies, journalists, government scientists, and elected
officials. We don’t like to belive that activists—those men and women in the
trenches—could be guided by motives that were anything but pure.
A
kind of AIDS “patriotism,” that is, is threatening to replace pluralism and
honest dialogue in the AIDS community: Critics—or even questioners—of activist
orthodoxy are heretics; they probably hate people with AIDS. And the notion
that “by any means necessary” is an acceptable philosophy for AIDS activism has
authorized the deferment of complicated moral questions until such time as
(someone) decides they are no longer obstructing what (someone) says is the
right fight against AIDS.
It’s
ironic, in fact, that while democracy is breaking out all over the world,
democracy seems to be leaking out of the AIDS activist movement like water from
a worn-out garden hose.
The
difficult truth is that almost everything about AIDS is brutally complicated.
Beware of anyone who offers to make it easier for you by explaining what a
study or a statistic or a law or an event “means.” There is no such thing as an
objective source of information about AIDS. Not even this one. So watch
yourself.
OF THE MORE THAN
200 AIDS-SERVICE ORGANIZATIONS IN THE SAN Francisco Bay Area, perhaps none has
engendered more intense loyalty—or as much hostile criticism—as Project Inform.
Founded in 1985 to conduct community-based trials of ribavirin, then a popular
underground treatment for AIDS, Project Inform has developed into one of the
nation’s premier AIDS-information networks, disseminating treatment and
research updates to some 75,000 individuals coast-to-coast and internationally.
In
addition to its public-education efforts, however, Project Inform has become a
powerful political lobby with influential connections in Congress, the Food and
Drug Administration (FDA), the National Institutes of Health (NIH), national
AIDS-activist groups, the underground AIDS-drug market, clinical trial
networks, and most of the pharmaceutical companies that produce AIDS drugs in
the U.S.
The
lion’s share of credit for those connections goes to Project Inform’s
controversial and mercurial Executive Director, Martin Delaney. What kind of
clout does Delaney actually have? This kind: When Delaney calls NIAID, Anthony
Fauci picks up the phone. In 1991, when the Bush administration became
concerned about legislation that would have given Congress the power to
accelerate approval of AIDS drugs, bypassing the FDA, White House Counsel
Boyden Gray invited Delaney—an opponent of the legislation—to a meeting. And
when Robert Gallo was having trouble closing a deal with Daiichi, the huge
Japanese pharmaceutical firm, to work with him on testing the anti-KS drug
SP-PG, Delaney pulled a few strings and Collaborative Research and Development
Agreement #0136 was quickly clinched. Like him or not, that’s the kind of thing
Martin Delaney can do.
Over
the years, however, Delaney has come under frequent attack for tactics that
were perhaps best summed up in the headline of a September 1991 San Francisco Examiner
article critical of him: “Top AIDS Activist: Leader or Tyrant?”.
A
staff member at the San Francisco AIDS Foundation mentioned similar polarities:
“Marty is two sides to the same coin,” he said. “He’s done incredible amounts
of good for people with AIDS in terms of getting access to the federal
bureaucracy. But he definitely wants to be the voice of AIDS treatment
information, the font of all knowledge, the maker of all deals, the
man at the podium. It isn’t always easy for people to deal with that.” (See sidebar,
“The Sacred Cow and the Activist.”)
Bruce
Nussbaum, currently a senior writer at Business Week and the author of Good
Intentions, a 1990 book that examined the impact of AIDS activism on the
government’s AIDS research and drug-development policies, put it more bluntly.
“Delaney is an incredible power-tripper,” Nussbaum said. “Even on the East
coast, I’ve never seen anyone who was into it as much as him.”
Delaney,
meanwhile, is philosophical about what he sees as jealousy and vindictiveness.
“We make enemies with folks who want us to support drug X and we don’t. We make
enemies with activists who don’t make it into the big time (and consider PI the
reason).” A small group of people “has been trying to do a hit on us” for more
than a year, Delaney says, and the group feeds “reporter after reporter the
same rumors and half-truths.”
“If
anyone can show that I get something out of the work I do—other than benefit
for people with AIDS,” Delaney concludes, “then go ahead and make your case.”
Six
San Francisco AIDS activists were willing to try to make that case for this
article. None of them, however, would allow his name to be used—and that’s a
big problem. If you were on a jury, you’d be expected to weigh the credibility
of individuals who would only speak anonymously. But, in fairness, you would
also be asked to think about the factors that might make people so skittish.
Two
activists interviewed for this article said they had been threatened and
harassed after publicly criticizing Project Inform in the past. A third said
his house had been vandalized. Yet another told of a friend—a former
activist—who left town in terror and now refuses to give out his phone number.
Do
any of those individuals have proof that Martin Delaney or Project Inform was
behind the threats or harassment they experienced? No, they don’t. But all of
them believe there is a connection. The intimidation they described, they said,
came not from Delaney himself but from what they described as Project Inform
“operatives.”
And
whether or not such allegations are true—and Delaney scoffs at the notion that
he wastes his time terrorizing activists—the apprehension felt by Delaney’s
critics is real. One source was reluctant to be interviewed because he
suspected he was being set up by a “spy,” posing as a journalist, who would
relay his comments to Delaney. Indeed, Delaney has been known to deliver loud
and savage public tongue-lashings to activists, reporters, and others who have
“crossed” him.
Steven
Fowkes, an AIDS treatment activist and President of Direct Action for Treatment
Access in Palo Alto, California, observed, “The thing that bothers me most
about the whole situation is the amount of fear that’s out there. People are
genuinely afraid. That’s not something that’s part of any legitimate function
of activism as I know it.”
Delaney,
however, continues to thrive, irritated but undeterred by criticisms. “If my
tactics look military,” he declared in his 1991 Examiner interview, “I
don’t apologize. I will be judged by my success.”
And
Delaney is successful. Even treatment activist Billi Goldberg, who has been critical
of Delaney in the past, acknowledges, “You have to remember, in the early days
there was nothing for AIDS—no prophylaxis for PCP (Pneumocystis carinii
pneumonia), no experimental drugs. Marty sped up approvals and got alternative
treatments on the street. He got trials going for drugs that seemed promising.
Nobody else could have gotten the FDA and the drug companies to work together.
It was Marty. You have to give him credit for that.”
Indeed,
Delaney’s polished and persuasive personal style—which come in part from his
former career as a highly successful corporate marketing consultant—has led
some to call him a Svengali. Still others, however, refer to Delaney as “The
Teflon Activist.”
Delaney
has, in fact, earned something of a reputation for firing off long, vitriolic
letters—directed invariably not to the reporter but to the reporter’s
editor—that question writers’ competence and motives. In the case of Celia
Farber, who frequently challenges the theory that HIV alone causes AIDS and who
is critical of AZT, Delaney has labelled her work “a threat to public health.”
In
1990, shortly after Chicago Tribune reporter John Crewdson began running
investigative pieces on Dr. Robert Gallo, the NIH scientist under fire for
allegedly stealing the AIDS virus from the French, Delaney wrote Tribune
publisher John Madigan a detailed defense of Gallo. In it, Delaney accused
Crewdson of intimidating sources into talking to him and of playing an “endless
game of ‘gotcha’ in which self-promoting reporters with a total lack of
scientific credentials nitpick every move made by our top scientists.”
Crewdson’s
investigation, Delaney went on to say, had created a “climate of fear” at the
NIH that was similar “to the research atmosphere in Eastern Europe, where
scientists (formerly) operated under a cloud of suspicion and were subject to
oversight and accusation from people who were accountable to no one.”
Finally,
Delaney noted that Project Inform intended to file “formal information requests
to the Tribune ... seeking records of any and all internal discussions
and communications regarding the investigations of Dr. Gallo and his people.”
An analysis of the costs of Crewdson’s “fishing expeditions” would also be
undertaken, Delaney vowed, and “[i]f Dr. Gallo is vindicated by the NIH
inquiry, we intend to publicly charge the Tribune with those costs on
behalf of PWAs, since much of that expense has been paid by funds otherwise
earmarked for AIDS research.”
After
Bruce Nussbaum’s book, Good Intentions appeared, Delaney wrote
Nussbaum’s editors what Nussbaum described, in a phone interview, as a
similarly “angry, vituperative, threatening letter.”
Delaney’s
interest in Nussbaum and Crewdson is confusing, since neither writer was
critical of Delaney or of Project Inform. Both Crewdson and Nussbaum, however, did
attack the government’s AIDS bureaucracy and the scientists it employs.
According
to Delaney, however, people like Gallo, Fauci, and Sam Broder (Director of the
National Cancer Institute), and agencies like NIAID and the NIH, “are the only
partners we have in this war (against AIDS). We have been very rough on these
people to make sure the work they do is focused and effective and as responsive
as possible. At same time, we don’t want bureaucratic issues interfering with
their attention to the job. If some of the overhead is coming from the media, I
don’t see why they should be let off the hook any more than the bureaucracy of
the Department of Health and Human Services.”
Delaney
insists, however, that his salvoes against reporters don’t mean he has any
quarrel with freedom of the press. “But if the media do things that are harmful
to the interests of people with AIDS,” Delaney asks, “are they supposed to be
able to hide behind the constitution and say ‘We’re exempt’? The free press has
to be responsible and accountable, just like the government bureaucracy does.”
But
tactics, again, are the issue. When Delaney wrote John Madigan that “if you or
Crewdson were burying a friend every week this year, like I have, you might
understand why our patience is running out”—a phrase he used twice in his QW
interview in response to criticisms of Project Inform—he was intentionally
using rhetoric that stops most critics in their tracks. No one knows how to
respond to the charge that he hasn’t experienced enough death to form a
position on AIDS.
The
larger issue, of course, is the question of who is positioned to make public
declarations of what helps and what harms people with AIDS, and to determine
what information should be available to them and to everyone else.
Others
charge activists like Delaney with participation not in backroom deals, but
boardroom deals. In fact, AIDS activists across the country have forced the
creation of and have won key positions on the community advisory boards of a
number of pharmaceutical houses, and have forged close ties with officials in
NIH, NIAID, and the FDA.
Groups
like the Treatment and Data committee of ACTUP New York and Treatment Activist
Guerrillas (TAG), whose membership is national, have also become highly
influential. Their members hold significant positions on the many subcommittees
of the AIDS Clinical Trial Group (ACTG), a NIAID-sponsored network of all
federally funded and some private efficacy trials for AIDS drugs. Delaney, too,
is a member of the ACTG, and TAG members hold important positions in Project
Inform.
Street
activism, then, and the emphasis on consensus and democracy that characterized
AIDS-activist groups such as ACTUP, has been tempered by what some critics
deride as “professional activism.” Increasingly, that is, activists use
personal influence and professional contacts to affect decisions “behind closed
doors.” It’s hard to argue that there hasn’t been benefit for people with AIDS
in the process.
As
Bruce Nussbaum argues, however, such ties have had another effect as well—the
“diffusion” of activist energy. “The drug companies and government agencies
have wisely absorbed the activists,” Nussbaum says. “They are now on most of
the key committees that make decisions about drugs used to treat AIDS. They
have been accepted into the scientific bureaucracy.”
At
the same time, Nussbaum argues, all the effort against AIDS over the last
decade “hasn’t resulted in any significant improvement in treatments or a cure
for AIDS. Despite that, many of the same scientists are in the same positions
they have occupied for years—which shows how truly little accountability there
is in government science.”
Continues
Nussbaum, “Activists haven’t been able—and I’m not even sure they’re willing
anymore—to try to replace these people. They know their enemy, they’ve done
battle with the enemy and now, at least to some extent, they’ve joined the
enemy.”
Recent
financial contributions from Burroughs-Wellcome and other drug companies have
raised additional questions about the independence of today’s AIDS activism.
Last April, for example, Burroughs donated $149,500 to Project Inform to
provide for a new computer system and a full-time data manager. In late June,
the company gave ACTUP New York an additional $1 million grant, which will be
administered through the American Foundation for AIDS Research. TAG has also
received $10,000 from Burroughs Wellcome.
In
the past, Project Inform has also received grants from ICN ($72,000), the
makers of ribavirin; from Sandoz Pharmaceuticals ($250,000), the owners of
GeneLabs, a San Francisco Bay Area company that supplied Compound Q for Project
Inform’s observational trials; Immuno-Diagnostics Laboratory ($10,000); and a
number of smaller donations from other pharmaceutical houses. Many important
national AIDS organizations, in fact, receive contributions from companies that
manufacture AIDS drugs.
In
the case of activist groups whose agendas may—and often have—conflicted with
those of drug companies, however, do such donations constitute payoffs or even
protection money, as some charge? Or are they, as Delaney said in Project
Inform’s press release about its recent Burroughs grant, the “entirely
appropriate” response of companies that “profit from the sale of drugs in the
AIDS community”? Delaney continued, “We are confident that this money comes
with no strings attached.... (It will not) prevent us from being a critic of
the company in the future, should it be warranted, as we have been in the
past.”
Indeed,
Delaney and other activists insist that no grant, no board appointment, and no
amount of personal interest will ever be cause to let anyone—not the NIH, not
the FDA, and especially not drug companies—off the hook when it comes to meeting
the bottom line: protecting the interests of people with AIDS and bringing the
AIDS death toll to a halt. At the same time, it’s worth noting what may be
nothing more than a coincidence: You don’t hear much these days about getting
Burroughs Wellcome to lower the price of AZT which—even at $5,000 per
year—still brings the company an annual profit of $315 million.
If
AIDS activism is having an impact on government science and on the
multi-billion dollar drug industry, that is, the reciprocal impact of
“establishment” politics and corporate culture on activism is virtually never
acknowledged.
“It’s
good to have insiders,” agreed one San Francisco activist, “but it becomes a
problem when one group decides to ‘go Wall Street’ and use pressure tactics to control
everything. Then you don’t have democracy and community representation anymore.
What you have is an impenetrable, elitist system of ‘insiders’ and ‘outsiders.’
You have quid pro quo, and you have a lot of people who get off on
wielding power for its own sake. That’s the situation we started out fighting
in the first place.”
The
relatively new Hoffman-LaRoche HIV Community Advisory Board may be a case in
point. Roche manufactures ddC, the most recently approved treatment for AIDS.
Last March, Karl Owens of ACTUP New York’s Treatment and Data committee wrote
Dr. Whaijen Soo, head of Roche’s Virology and AIDS Research section, about
activists’ relationship with the company.
Touching
on the HIV CAB Owens wrote, “(Roche) boasts that the board was ‘conceived with
the help of ACTUP New York, Project Inform and AIDS Action Baltimore.’ Yet,
those groups have no idea who has been invited to participate. Unless ACTUP/NY,
PI, and AIDS Action Baltimore have veto rights over the membership, they will
not participate on the Roche CAB.”
Should
anyone—even the best-intentioned activists—have veto power over the membership
of a community advisory board? In a recent interview, Owens sidestepped
that question but noted, “The original list that Roche was kicking around
included many people that were really in Roche’s back pocket. We were looking
for some balance and there wasn’t any. I never expected to get veto power nor
did I ever get it. Roche appoints its own people. There’s no story here.”
For
his part, Delaney says that he knew nothing about the letter and adds that
Project Inform did not authorize the veto challenge. Delaney’s name, however,
along with Project Inform’s Joel Thomas, whom Delaney says is a volunteer,
appears on Owens’ “cc” list.
Official
veto power or not, Owens acknowledges that “I took enormous amounts of heat in
New York City about the fact that I couldn’t make it so that we had veto power,
and that Roche is picking its own CAB.” Owens’ letter and the “heat” he
describes, then, clearly indicate that the veto-power strategy had support
within his organization, even if it didn’t succeed. So what about the ethics of
using such means to exert influence on Roche?
Says
Owens, “Influence is the way of the world, man.”
|
The Sacred Cow and
the Activist BILLI GOLDBERG’S TWIN PEAKS APARTMENT LOOKS MORE like the annex of a
medical library than the home of a semi-retired civil engineer. Goldberg’s
dining room table—in fact, virtually every horizontal surface—is covered with
piles of articles with titles like “Systemic Migration of Dendritic Cells”
and “Antigen Presentation in HIV Infection.” Textbooks on immunology and
dermatology are stacked open at one end of the couch, significant passages
marked with strips of paper and with several shades of pastel
highlighter. On Goldberg’s desk stand a computer, a laser printer, and a modem,
and Goldberg spends several hours each day engaged in online medical research
or else exchanging the latest AIDS-treatment information with contacts across
the continent. As a result, Goldberg is as comfortable discussing topics like
hapten formation and lymphocyte markers as she is talking about what happened
last night on Murphy Brown. Goldberg is part of what some call a “new breed” of AIDS
activists—men and women who are politically committed to the struggle against
the disease, but who have also made it their business to become home experts
at the thicket of acronyms, medical jargon, and hard science that are
essential to an understanding of AIDS treatment and research today. But Goldberg has an even more specific mission—spreading the word
about a treatment that she and a small but growing number of activists and
doctors believe may hold some promise against AIDS. The treatment, called
dinitrochlorobenzene or DNCB, is a chemical used in photo processing. Applied
weekly to the skin in diluted form, DNCB causes a localized allergic reaction
that some believe helps “flush” HIV-infected cells from the body. Not surprisingly, advocates of DNCB—like advocates of virtually
every alternative treatment for AIDS—have occasionally come under criticism
from those who believe such “unproven” treatments are a dangerous diversion
from approved therapies. What does surprise some activists, however, is the
resistance to DNCB that they say comes from San Francisco’s Project Inform,
one of the nation’s premier AIDS-treatment information networks. Founded in 1985 to conduct community-based trials of ribavirin, then
a popular underground treatment for AIDS, Project Inform has actually
championed—and helped test—a variety of alternative treatments over the last
seven years. Any suggestion that Project Inform has failed to support DNCB,
however, makes the organization’s Executive Director, Martin Delaney, bristle
with irritation. Says Delaney, “It amazes me that (there are) critics
screaming at us about this when we were only ones willing to put money on the
line and study this product.” In 1990, in fact, Project Inform did institute a Phase I (safety and
dosage) study of DNCB—the only community-based trial of its kind. The study
is not yet complete. A source close to Project Inform, however, confirmed
that the DNCB study was originally undertaken “over Martin Delaney’s
strongest objections,” and critics argue that Project Inform has dragged its
feet on the DNCB study ever since. In its own materials on DNCB, Project Inform says that the
community’s “lack of interest” in DNCB made it difficult to recruit enough
participants for an adequate study. In two years, Project Inform has enrolled
only 20 AIDS patients. (As part of research for this article, however, more
than a dozen phone messages were left for Project Inform’s DNCB study
recruitment coordinator. The messages requested information about joining the
DNCB study but did not mention QW magazine. Over the course of six
weeks, none of those calls was returned.) But Goldberg and others note that the DNCB Treatment Issues Group
was quickly able to recruit more than enough subjects for its own
observational study, now underway. Healing Alternatives Foundation, in
addition, a San Francisco outlet for alternative AIDS treatments, sells
between 400 and 500 DNCB “starter” kits each month. Goldberg suspects other
reasons for PI’s resistance to the treatment, including the fact that DNCB
“doesn’t have to be patented or licensed and is never going to make a profit
for some big drug company.” (Healing Alternatives sells DNCB for a suggested
donation of $20.00 for a six-month supply; the actual cost is $6.00.) And the plot thickens. Earlier this year, the Principal Investigator
of the Project Inform DNCB trial, Dr. Raphael Stricker, submitted a paper
entitled “Pilot Study of Topical DNCB in Human Immunodeficiency Virus Infection”
to at least two important medical journals. (It has not been published.)
Delaney says Stricker’s paper was prepared without the knowledge of the
co-authors (indeed, Dr. Dobri Kiprov angrily insisted he knew nothing about
the paper and couldn’t explain why he is listed as a co-author). Delaney also
charges that submission of the paper was a strict violation of Stricker’s
co-sponsorship agreement with Project Inform. Stricker, on the other hand, who reported the preliminary results of
the DNCB study at the Eighth Internal Conference on AIDS in Amsterdam in
July, says that the “political situation” at Project Inform had left the DNCB
study dangerously in limbo. He believes that the limited data from the
Project Inform trial—which he acknowledges is an uncontrolled observational
study, not a test of efficacy—show that DNCB is at least worthy of further
testing. Meanwhile, even while Delaney has been highly critical of anyone who
discussed the results of the trial before it was complete, Project Inform’s own
Research Director told a San Francisco gay-community newsweekly last Spring
that Project Inform’s study showed DNCB to be ineffective. The bottom line? Nobody knows if DNCB really works. Further, nobody
is likely to find out for a very long time. So much bad blood has been
generated—on all sides—that interpreting the results of the Project Inform
DNCB study may be all but impossible. More ominously, a former employee of Project Inform suggests that
the DNCB imbroglio may mark the beginning of the end of the organization’s
involvement in alternative treatments: “Marty’s frame of reference has
shifted from the activist community to the political-scientific community,”
the source said. “He isn’t working (for the respect) of the activist
community anymore. He has enough of that to be secure. He wants to be well
regarded by the experts—the government researchers and the ‘big boys’ in
establishment science. He doesn’t want to be seen as someone dealing in
‘snake oil.’ And he just isn’t interested in alternative treatments anymore.” |
© Wendell Ricketts, 1992, 2005. All rights reserved.
First published in QW, November 1, 1992, pp. 45-49,
68-69.
Everyone can see what is going on. They laugh ‘cos they know they’re
untouchable, not because what I said was wrong. (Sinead O’Connor,
“The Emperor’s New Clothes”)
Credit for the
historic discovery was originally claimed by both Dr. Luc Montagnier of Paris’s
Pasteur Institute and Dr. Robert Gallo of the National Institutes of Health
(NIH) in Washington. By all public accounts, Gallo was first out of the gate
with an April 1984 press conference and a series of papers on HIV (then called
HTLV-III) which appeared that year in the journal Science.
Reports
persisted, however, that Gallo’s HTLV-III was really LAV, a virus previously
identified by Montagnier. In 1983, Montagnier had shipped samples of LAV to
Gallo for testing.
Open, bitter
feuding between the two scientists continued until 1987, when a compromise was
finally hammered out between them. According to the terms of that agreement,
official credit for the discovery of HIV is shared 50-50 between France and the
United States, as are royalties from tests for antibodies to the virus (which
total about $100 million annually).
But not
everyone was content to let the matter drop there. In late 1989, Chicago
Tribune reporter John Crewdson blasted Gallo in a meticulously detailed,
52,000-word article that accused the scientist, among other things, of misappropriating
samples of French virus and then claiming to have isolated a new and separate
virus in his lab, as well as of making false statements in his 1984 papers
announcing the discovery of the cause of AIDS.
So thorough
was Crewdson’s reporting that questions about Gallo began to seem reasonable
again. And one of the people who started raising them was Michigan
Representative John Dingell. Dingell demanded that the NIH launch an inquiry
into Gallo’s lab and, within a short time, the NIH’s Office of Scientific
Integrity (OSI) had done exactly that. Dingell himself later convened hearings
of the House Subcommittee on Oversight and Investigations, which continue
today.
The OSI report
was completed last April or May, and has been sitting since then on the desk of
Assistant Secretary of Health and Human Services, James Mason, awaiting his
signature. Neither the NIH nor Dr. Mason’s office has any explanation for the
lag in the release of the OSI report, although no one seems to find the delay
unusual. A reasonable speculation, however, is that the report is being held up
because things are a bit hot for Dr. Gallo and the NIH in Washington these
days.
First of all,
a draft of the “final” OSI report was leaked to the press in March and was
widely covered in French and American newspapers, as well as in respected
scientific journals such as Science and Nature. According to
articles about the draft report, the OSI concludes that any misconduct in
Gallo’s lab was the actually responsibility not of Gallo but of Dr. Mikulas
Popovic, a Czech retrovirologist who joined Gallo’s lab in 1980. Gallo, on the
other hand, gets off with little more than a scolding.
Press officers
for the NIH and the Public Health Service, meanwhile, refuse to discuss either
press accounts about the OSI report or the report itself. Noted the PHS’s
Rayford Kytle, “There is only one report and it isn’t complete. Anything else
that got into the press through a leak or whatever is an incomplete document
and is worthless. The point is that the OSI report hasn’t been released.
Therefore, there is nothing to comment on.”
As early as
two years ago, however, Dr. William Raub, then-Acting Director of the NIH,
apparently held a different opinion. In October 1990—at a point when the Gallo
probe had barely gotten underway—Raub announced that the OSI had unequivocally
cleared Gallo of all charges of misconduct. Since the leak of the OSI report,
in addition, Gallo and Popovic and their lawyers have responded widely in the
press to the report’s conclusions.
On June 24,
1992, in fact, Gallo had agreed to appear before a meeting of the National
Cancer Advisory Board’s Subcommittee on AIDS, chaired by Dr. Howard M. Temin of
the University of Wisconsin. According to Temin, the meeting was scheduled “to
get information about what was going on (with the investigation of Gallo’s
lab). We wanted to learn what changes could be made at (the National Cancer
Institute) to prevent similar problems and to give Dr. Gallo the opportunity to
respond publicly and officially to some of the scientific questions that had
been raised.” The meeting was to be open to the public and press.
The day before
the meeting, however, Michael Astrue, General Counsel for Secretary of Health
and Human Services Louis Sullivan, ordered Temin to cancel the meeting. Says
Temin, “I was in Washington to receive the National Medal of Science, and when
I got back to my (hotel) room there was a call from Astrue. He told me, you
have to cancel this meeting. It’s none of your business.”
Astrue
followed his phone call with a letter in which he told Temin, “[T]he meeting
you have scheduled to review ... allegations of misconduct against Dr. Robert
Gallo exceeds the statutory authority of your committee, and therefore must be
canceled .... You need to be aware that unauthorized expenditures of federal
funds may expose you and others to various types of liability.”
Astrue
concluded, “I trust I can count on you to conform with the law.”
The call and
letter were “very threatening,” Temin acknowledged. “As a presidential
appointee trying to do my job, I didn’t expect to be treated as a lawbreaker by
the counsel who’s supposed to be on my side.”
The day after
the meeting of the Subcommittee on AIDS was to have been held, the New York
Times reported allegations by C. McClain Haddow, a former senior health
official, that “the government had been misled by Dr. Robert Gallo’s claim to
have been the sole discoverer of the cause of AIDS.” The article went on to
review various new and old charges against Gallo, and reported critics’
comments that the OSI draft report was “a whitewash.”
Hearings in
Dingell’s Oversight and Investigations subcommittee, meanwhile, were underway
on Capitol Hill. On June 26th—two days after the date of the canceled
meeting—the Chicago Tribune reported that Secretary Sullivan had
admitted, under questioning by Dingell, that key HHS documents related to the
invention of the HIV test in Gallo’s lab had been destroyed by former Assistant
Secretary of Health Lowell Harmison when Harmison resigned in 1987. After
leaving the DHHS, by the way, Harmison went to work for late British publishing
magnate Robert Maxwell. Harmison’s task? To establish the Maxwell Institute for
AIDS Research, and to lure Gallo away from NIH as its director. The plan never
materialized.
In the
meantime, based partly on the findings of the leaked OSI report, the French
government has sued the United States for ownership of the patent of the HIV
test as well as for all of the HIV-test royalties paid to the United States
since 1987. The Government Accounting Office and the Inspector General of the
Department of Health and Human Services have also recently opened
investigations into the patent-rights question.
Martin
Delaney, the influential Executive Director of San Francisco’s Project Inform,
one of the nation’s premier AIDS-treatment information networks, would agree
with that assessment. In response to the Crewdson expose, Delaney wrote an
angry letter to Tribune’s publisher, vowing that “[w]e will not sit idly
by (while) self-promoting reporters with a total lack of scientific credentials
nitpick every move made by our top scientists.”
Crewdson’s
articles, Delaney went on to say, had created a “climate of fear” at the NIH
that had a “chilling, negative effect” on scientists involved in AIDS work and
had made it difficult to keep them motivated in the face of “low pay, poor
working conditions, and unnecessary public pressures.” Ironically, none of the
big names in government AIDS science—Gallo, Dr. Anthony Fauci, Dr. Sam Broder,
Dr. James Curran—has shown the slightest inclination to change jobs in nearly
ten years.
In a recent
interview, however, Delaney repeated his defense of Gallo. “I don’t care about
(Gallo’s) character,” Delaney said, “but about his scientific insight. If along
the way Gallo or somebody has done something scientifically unethical, I say
fine, let’s hold Nuremberg trials when the war (against AIDS) is over. In the
interim, let’s get the job done.” (Former Nazi officers were tried for “crimes
against humanity” in Nuremberg, Germany at the end of World War II.)
Indeed, many
would argue that Gallo’s contributions to AIDS research far outweigh any flaws
in his character or lapses in his judgment. So the Gallo story might well be
business as usual. It might even be a dead horse. Except for one thing. What if
HIV is not the cause of AIDS?
The
announcement at the Eighth International Conference on AIDS in Amsterdam last
July that HIV-free AIDS had been discovered in a handful of patients created
quite a stir in the American press corps. At the office of Dr. Peter Duesberg,
a professor of molecular and cell biology at the University of California at
Berkeley and the leading critic of the HIV/AIDS hypothesis, press calls topped
out at around 150 during the week of the conference.
For Duesberg,
however, the news from Amsterdam was hardly startling. For the past five years,
he has been insisting—to anyone who will listen—that HIV is not the cause of
AIDS. The originator of the “cancer gene” theory, a longtime member of the
National Academy of Sciences, and the past recipient of an Outstanding
Investigator Award from the NIH, Duesberg holds views that are perhaps extreme:
Duesberg believes that HIV is not responsible for a single case of AIDS—indeed,
that it is harmless—and he has repeatedly offered to be injected with the virus
to prove his point. So far, none of his detractors (including Robert Gallo, who
admits he cannot discuss Duesberg “without shrieking”) has taken Duesberg up on
his challenge.
If HIV is not
the cause—or not a primary cause—of AIDS, then empires will truly crumble. The
issue isn’t just scientific credibility or reputation, either—it’s money.
Burroughs
Wellcome, the company that produces the anti-HIV drugs ddI and AZT, brought in
$315 million last year from the sale of AZT alone—and that was after
activists forced the company to slash the retail price of the drug by one-half.
As of late July 1992, meanwhile, the 101 drug trials open on the AIDS Clinical
Trials Group included 42 anti-HIV studies; 22 of those involved AZT.
Royalties from
the HIV-antibody test itself, meanwhile, total some $100 million a year.
Worldwide sales of diagnostic tests for HIV came to $135 million in 1991, half
of which went to the huge Chicago-based pharmaceutical company, Abbott Labs.
Finally,
Gallo’s lab itself will receive $9.42 million in federal money in the current
fiscal year—but that isn’t all. Gallo’s lab also participates in a number of
Collaborative Research and Development Agreements (CRADAS) by which private
biotechnology and drug companies, such as Daiichi, Abbott Labs, and
Virogenetics, pay Gallo’s lab to develop and test their AIDS treatments,
antibody tests, or vaccines.
Citing the
trade-secret exemptions of the Freedom of Information Act and the Federal
Technology and Transfer Act, however, the NIH refuses to disclose the amounts
paid to Gallo’s lab under the current CRADAS, although two sources estimate
that combined CRADA and federal funding bring a million and a half dollars into
Gallo’s lab each month. Of the five CRADAS currently in effect, four involve
HIV-based treatment or vaccines for HIV.
The mainstream
media helped Gallo out willingly—as did the editors of scientific journals, who
suddenly became disinclined to accept papers on AIDS from researchers outside
the “Gallo school.” New York clinician Dr. Joseph Sonnabend, in fact, who had
never fallen into line behind the HIV/AIDS hypothesis, was summarily dismissed
in mid-1985 as editor of AIDS Research, a journal he helped found. The
new editor, Dr. Dani Bolognesi, was a colleague of Gallo’s and the co-holder of
the patent on the HIV-antibody test. Bolognesi put Gallo on his new editorial
board.
Gallo was, in
short, instrumental in turning the entire apparatus of American science toward
the theory that AIDS is caused by HIV: tests that detected HIV or its
antibodies, drugs that fought HIV, vaccines that rendered HIV powerless. The
pharmaceutical industry followed close behind. Very quickly there was no other
game in town.
So
single-minded were these efforts, in fact, that research into treatments and
prophylaxes for AIDS-related opportunistic infections all but came to a
standstill, and it was only through relentless pressure by activists that drugs
such as aerosol pentamidine (a preventive therapy for Pneumocystis
pneumonia), among other experimental treatments, were released for public use.
Those who
disagreed with Gallo—or with what had, by the end of 1986, become a virtually
impenetrable edifice of HIV-based AIDS science—didn’t get far. They couldn’t
get their papers published, they weren’t invited to speak at scientific
meetings, their research wasn’t funded or, like Joseph Sonnabend, they suddenly
found themselves without jobs.
The HIV-free
AIDS cases reported in Amsterdam provide yet another example of how HIV
“information lock” has affected the scientific debate. By opening day of the Eighth
International Conference, no one was scheduled to discuss HIV-free AIDS at all.
A last-minute presentation was organized only after a Newsweek report
appeared on the topic. Ultimately, researchers and doctors described some 30
European and American cases.
Back in the
United States, the New York Times revealed that the Centers for Disease
Control had been ignoring scattered reports of HIV-free AIDS in this country
for some months. The Amsterdam presentation was something of an embarrassment
to the CDC, then—particularly when U.S. doctors in the conference audience rose
to submit additional cases of their own.
The American
medical and scientific establishment, in other words, has become doggedly
fixated on HIV—and on the treatments, tests, and vaccines that flow from HIV
theory—and hasn’t dared to take its eyes off the road for a second.
And that’s
where Peter Duesberg comes in. Although it remains true that the majority of
doctors and researchers in the United States believe that HIV is the sole or primary
cause of AIDS, Duesberg argues forcefully that the debate should not be
considered closed. Indeed, although detractors often attempt to depict Duesberg
as isolated and eccentric, he is, in fact, one of nearly 100 members of the
Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis, a worldwide
committee of biochemists, virologists, biologists, theoreticians, and writers.
(See sidebar, “Dr. Peter Duesberg’s Letter to Science.”)
A few weeks
before the Eighth International Conference on AIDS was convened in Amsterdam,
Duesberg and over 200 other AIDS “dissidents” went to that city to hold a
three-day alternative conference entitled “AIDS: A Different View.” There,
Duesberg, Dr. Joseph Sonnabend, well known AIDS activist Michael Callen, Dr. Robert
Root-Bernstein, and even Dr. Luc Montagnier (who has abandoned the view that
HIV causes AIDS alone, although he does not agree with Duesberg that HIV
is harmless) met with others to discuss their points of consensus and
departure.
In the eight
years since Gallo’s “discovery” of Montagnier’s already-discovered virus, the
“Different View” conference was the first-ever public scientific forum on the
question of whether HIV is the sole cause of AIDS.
The “Different
View” meeting, as Spin magazine AIDS writer Celia Farber described it,
“had an air of innocence about it—it lacked the elitist, conformist,
superscience arrogance of the orthodox International Conference on AIDS. The
force that made it happen was far more genuine: It was sheer curiosity, the only
force that ought to propel science.”
“For asking
what they deem to be critical questions about HIV and AIDS,” Farber added, the
doctors and scientists who presented at the conference “have for years been
accused of everything from scientific illiteracy to murder.”
Indeed,
although Delaney accuses Duesberg of being neither a retrovirologist (which
isn’t true), an immunologist or epidemiologist (which is true), it is equally
the case that there are no retrovirologists, immunologists, or epidemiologists
at Project Inform—no scientists of any kind, for that matter. (For the record,
Robert Gallo isn’t an epidemiologist or an immunologist, either.) Project
Inform’s Research Director, in fact, was trained as a Med Tech.
More
seriously, Delaney aims for a nerve in the gay community when he implies in his
Discussion Paper that Duesberg believes that the cause of AIDS is “sexual
promiscuity.”
In fact,
Duesberg maintains that AIDS is caused by long-term use of recreational drugs,
which impairs immune function—and by the use of AZT. He has never argued that sexual
activity per se caused gay men to contract AIDS. He does, however,
contend that numerous sexual partners have often meant frequent infection with
sexually transmitted diseases such as gonorrhea or intestinal parasites, which
has in turn led to repeated treatments with immune-suppressing antibiotics.
Further, Duesberg believes that high levels of sexual activity have often been
accompanied in gay men by the use of recreational drugs and “sexual stimulants”
such as poppers. Neither contention can really be disputed—although any link to
AIDS remains hypothetical.
Delaney raises
yet another specter of concern to the lesbian and gay community, labelling
Duesberg a homophobe with ties to “such well known bigots as (Orange County,
California) Congressman William Dannemeyer.” In his interview, Delaney went
even further, describing Duesberg as the “darling of William Dannemeyer” and
implying other, hidden right-wing connections.
In fact,
Duesberg says he did consult briefly with Dannemeyer on a congressional resolution
that Dannemeyer never introduced. The resolution would have said that “HIV is
not the cause of AIDS and that HIV research is a waste of money and that AIDS
is a drug problem that could easily be solved,” Duesberg said. Dannemeyer has
apparently lost interest in the project.
Meanwhile,
Duesberg acknowledges, “I agree that I have been a total prostitute on this.
Ron Dellums (a progressive California Congressman) has actually done much more
for us, however. He’s written twice to (Secretary of Health and Human Services)
Louis Sullivan on my behalf. So that is the extreme left, as I understand. That
shows you how promiscuous I am with my political connections. I just take what
I can get to get this thing out.
“I think
political considerations, at very best, should be secondary or even tertiary.
In fact, you could be any of these things they call me—a fascist or a
homophobe—and you could still be scientifically right, and that’s what we need
to know first before we implement successful public health efforts and (deal
with) what ever the moral issues are.”
Delaney’s
Discussion Paper takes on not just Duesberg but those in the press who write
about his ideas—journalists who, in Delaney’s words, are motivated by little
more than their “generic distrust of authority and government science.” Delaney
professes to see no irony in the fact that such “generic distrust” was, perhaps
more than any single factor, the impetus behind the creation of AIDS activism.
In the end,
however, Martin Delaney’s favorite name for Duesberg and those who think like
him isn’t “murderer” but “heretic”—a word that Webster’s defines as an
individual who “holds to a doctrine that is contrary to the fundamental creed
of one’s church.”
The use of the
word is more apt than Delaney may realize. Despite claims about objectivity and
the “principles of science,” those who charge heresy (and Delaney is not alone
in this) suggest an important possibility—that HIV theory, and the AIDS
orthodoxy generally, are more than slightly colored by a high regard for the
articles of faith. And it isn’t Duesberg, finally—but those of us who need
unbiased information about AIDS—who are feeling the heat of the AIDS patriots’
inquisitional autos-da-fe.
|
Dr. Peter Duesberg’s Letter to Science A
Newsweek article on July 27 reported on HIV-free AIDS cases
presented at the VIII International AIDS Conference in Amsterdam, and a
“News & Comment” article of July 3-11 ended with a call “to launch a
worldwide study of this situation” as quickly as possible. I am
responding to this call with 1) Twelve
studies have reported immunodeficiency in 179 HIV-free hemophiliacs. 2) Four
studies have reported Kaposi’s sarcoma and immunodeficiency in 51 HIV-free
homosexuals. 3) Ten
studies have reported AIDS-defining diseases in 444 HIV-free 4) Two
studies have reported AIDS-defining diseases in at least 16 HIV-free
babies. 5) Two
studies of tuberculosis outbreaks in Florida have reported this AIDS- There may be
more HIV-free AIDS-like cases, since only about 50% of all Rather than
rushing to a “new AIDS virus” as the explanation, Science could [A list of
40 references
followed.]
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