SILENCE = WEALTH
The Greed Behind Project Deform
By David Pasquarelli
Magnus April 2000
They say those who fail to learn from history are doomed
to repeat it. Nowhere is this more evident than in the world of AIDS drug
promotion where, unable to comprehend the lessons of the 1980s AZT
poisoning fiasco, the gay community is now facing a new round of death
and deformity due to rapidly-approved, outrageously-priced and widely-advertised
protease inhibitor treatments. One organization, Project Inform, and one
man in particular, Martin Delaney, its Founding Director, are largely
responsible for this current desperate situation.
Back in 1996, I and other members of ACT UP San Francisco
disrupted a forum on new drug guidelines at the International AIDS Conference
to force media attention to our well-researched conclusion that protease
inhibitors would cause untold suffering and death. Martin Delaney, however,
presented his far more optimistic opinions in a mass-mailed fundraising
letter for Project Inform:
By now you probably know the good news: after
negotiations with government regulators, weve finally won quick
approval for a new generation of therapies for HIV/AIDS infected people.
These are some of the most potent and promising drugs ever made available,
Delaney gushed. We have a potential miracle in our hands and, with
your generous help, we can bring it safely home.
Four years later, after record-breaking approval by
the Food and Drug Administration and in the absence of any long-term survival
data, it has become clear that protease inhibitors are anything but miraculous
The list of devastating effects caused by these experimental
chemicals, prescribed for life as soon as possible after an HIV positive
diagnosis, continue to grow. Sudden death from liver damage, kidney failure,
heart attacks, strokes, and diabetes as well as metabolic abnormalities
resulting in grotesque physical deformities like hunchbacks, hardened,
distended bellies and stick-like limbs have finally made headlines, albeit
too late for many.
It is for these reasons that Delaney has lost the trust
of many in the patient community and his organization, now known on the
streets as Project Deform, is increasingly viewed as a threat
to the health and well-being of people with AIDS.
A Question of Ethics
Oddly enough, soon before the protease inhibitor implosion
hit the pages of magazines and newspapers across America, Project Inform
quietly began circulating a draft document entitled Proposed Guidelines
for Ethical Relations Between HIV Community Agencies and Pharmaceutical
The draft document was startlingly forthright in admitting
that industry of all types has long sought to influence government,
the public, and in particular, advocates working in fields related to
their products. Taken to an extreme, this effort can stretch the limits
of ethical behavior.
Clearly, both Project Inform and Delaney occupy a critical
position in transmitting information to HIV-positive individuals from
companies that sell profitable antiviral AIDS drugs.
Project Inform lobbies the government for the rapid
approval and release of experimental AIDS drugs. Through its toll-free
hotline, Project Inform volunteers recommend treatments and encourage
frightened HIV-positive individuals to enroll in clinical trials of new
drugs. Through its website, publications and local and national treatment
forums, Project Inform promotes the latest AIDS drugs to a global audience.
The HIV-negative Delaney even sits on AIDS research advisory panels to
the National Institutes of Health and National Academy of Sciences - despite
having no formal medical training.
Today, it is no secret that Project Inform receives
considerable financial support from pharmaceutical companies. In 1998,
Project Inform accepted nearly $500,000 from pharmaceutical companies
out of $1.9 million in total raised revenues. Indeed, both Glaxo and Merck
each made corporate contributions of $100,000 or more to the organization.
Accusations that Project Inform has been corrupted by drug money have
lingered for years in San Francisco. In 1995, I outlined how Project Informs
mission had been severely compromised by the acceptance of pharmaceutical
dollars in my essay Exposing Project Infirm (available at www.actupsf.com/aids/projectinfirm).
With the protease dream transformed into a nightmare
and the sudden emergence of Project Informs ethical guidelines,
it appears that corruption of AIDS agencies may go far deeper than anyone
imagined. While the guidelines could be viewed as a proactive measure
to come clean before any verifiable improprieties surface, they seem more
a skilled attempt to deflect attention away from specific ethical issues.
For example, under Guiding Principle #1: Disclosure,
Project Inform recommends what has been largely commonplace: that grants
over $5,000 be announced publicly; that educational materials purchased
by drug companies be identified as such; that pharmaceutical and biotech
funding be published annually along with the fundings use; and that
agencies develop public statements regarding industry support.
However, suspiciously missing from the document are
concrete rules and regulations governing disclosure of personal income
obtained from drug companies by executives and staff members of nonprofit
AIDS agencies. While it is relatively difficult for highly scrutinized
nonprofits to hide a large influx of pharmaceutical dollars, it is quite
easy to conceal such payments transacted between private business entities
Is it ethical for presidents, executives, board members
and staff to secretly amass personal wealth through payments from drug
companies or their hired public relations firms in the form of consulting
fees, honoraria, in-kind donations and gifts, travel allowances and through
Of course not. Yet the silence shrouding this area of
financial impropriety indicates that it is not only happening but that
it is unduly influencing public opinion about the benefits and dangers
of experimental AIDS drugs as well as the reasons behind their expensive
price. The issue of concealed personal pharmaceutical payoffs becomes
most relevant when executives of AIDS non-profits attempt to influence
drug costs and public perception in ways that could be legally defined
as price-fixing and fraud.
The Sustiva Scandal
For example, when the AIDS drug Sustiva was approved
by the Food and Drug Administration in the fall of 1998 its maker, Dupont
Pharmaceuticals, faced a carefully orchestrated campaign attacking its
efficacy, side effects, and, above all, its price. The campaign was led
by Project Informs Delaney and Gary Rose of the public relations
The AIDS community assumed that this was just another
skirmish in the battle over AIDS drug pricing. However, Delaneys
high-profile PR stunt was very different from previous protests, such
as those over the initial $10,000 per year price of AZT.
Most importantly, Sustiva, at approximately $3,500 per
year, was one of the cheapest anti-HIV treatments on the market. There
were no protests when Merck priced its new drug Crixivan at about $4,000
per year and no screaming when Agouron priced Viracept, a similar protease
inhibitor, at $5,600 per year then raised the price another 15%. There
were no demonstrations over Roches Saquinavir priced at $6,000,
nor over Abbotts Norvir priced at $7,200 nor when Glaxo priced its
new nucleoside analogue Ziagen at $6,100.
Yet Duponts Sustiva met with nationwide demonstrations
and outright boycotts. Certainly it was to the advantage of Duponts
competitors to be free to price their drugs as high as the market would
bear without reprisals. It was also to their advantage to see Dupont,
a new company just entering the AIDS field, battered in the public eye
and forced to reduce its price and profits. A lower price on Sustiva meant
more money from the limited funds of the AIDS Drug Assistance Program
(ADAP) would be left for the higher priced drugs of Duponts competitors.
Why pick on Dupont when it had the lowest priced new AIDS drug?
Surprisingly, Delaney claimed that since Sustiva was
of a different chemical category from the others its price should be lower.
Ordinarily, however, the factors that determine a drugs price are
cost of research, development and manufacture; efficacy and side effects;
and market competition. Chemical category is as irrelevant to the price
of a drug as color is to the price of a car. More relevant was the financial
affiliation of the activist protesters. Delaney and Rose, the two leading
individuals who orchestrated the anti-Dupont protests, were paid consultants
of Duponts competitors or employed by AIDS organizations or public
relations firms that received large donations or contracts from Duponts
competitors. There is something fishy about activists and executives on
the payroll of one drug company orchestrating campaigns to influence the
drug pricing of a competitor in order to ensure high prices for all AIDS
Dupont Pharmaceuticals protracted fight with Delaney
over the pricing of Sustiva took an unexpected turn last spring. Because
activists led by Project Inform were hurting its market share in California,
Dupont decided to court and lavishly reward the very people who had bashed
them six months before. First came a million dollar donation to a dubious
San Francisco AIDS prevention panel, a panel that could potentially become
an extended job project for Delaney loyalists. Then Dupont sponsored gay
pride month at KQED, a local PBS station, and kicked off the event with
a dinner honoring Delaney as a hero of the gay community. No less a dignitary
than Duponts CEO flew in to sing Delaneys praises.
Given that AIDS drug manufacturers are less competitors
and more collaborators in this age of combination cocktail therapies
it appears that Dupont, the newest member of the AIDS drug cartel, decided
it was in their profit-making interests to court rather than offend Delaney.
Public Silence = Personal Wealth
For the last decade Delaney has been rumored to have
been a paid consultant for several drug companies including Glaxo Wellcome
and Merck, Sharpe and Dohme. When unsuspecting AIDS patients call the
Project Inform hotline they believe they are being given objective treatment
information from their peers. There is an unethical conflict of interest
when pharmaceutical companies pay tax exempt community groups or their
leaders to influence AIDS drug pricing or public perceptions about the
benefits or dangers of their product or a competitors. When patients
pay for their drugs they do not expect that quietly compensated AIDS executives
have conspired with pharma-ceutical companies to keep drug prices exorbitantly
To prevent fraud, price gouging and the victimization
of people with AIDS it is imperative that we have full disclosure of all
pharmaceutical industry contributions - not only to nonprofit AIDS groups
but, more importantly, to all AIDS organizations executives, board
members and employees.
Therefore, as a public demonstration of their commitment
to ethical conduct, I challenge Glaxo Wellcome and Merck, Sharpe and Dohme
to publicly disclose all payments and remuneration made over the last
ten years to Founding Director Martin Delaney and Project Inform Treatment
Information Advocates Brenda Lein and Ben Cheng. I also challenge Delaney,
Lein and Cheng to make the same public disclosures by having an independent
auditor confirm their IRS tax returns for this time period.
As the sky-high cost of protease inhibitors continues
to gobble up more public resources while they injure and kill more patients,
it is critical that we pull back the curtain and expose the behind-the-scenes
payoffs that fuel the AIDS industrys engine.
Only by demanding full disclosure from nonprofit AIDS
industry executives can we hope to prevent a repeat performance of the
AZT/protease inhibitor debacles - taxpayer-funded disasters that will
certainly go down as two of the worst examples of medical corruption in