During the 1996 display of
the Quilt in Washington DC,
a huge tent--Stadtlander Wellness Pavilion--was allowed
to be set up filled predominately by pharmaceutical company
booths hawking their wares.
The following treatise was distributed...
We know when we're well, and when we're not.
We know our hearts are sick when drug companies are allowed to hawk their wares next to the largest, most creative, most personal, and most explicit memorial for people with AIDS ever.
We know it's no coincidence that the largest display here is Roche, who makes the weakest, but most most expensive protease inhibitor. And how can Serono come here, when so many of us have died from wasting, unable to get Serono's fHGH priced at over $36,000/year?
In 1986, AZT was made available because of promising but preliminary data showing increased survival. In 1993, early AZT use was discredited. In 1995, AZT monotherapy was shown to shorten life.
And in 1995, instead of early access programs, the protease drug companies ran lotteries, playing PWAs against each other. Then they took months to deliver, waiting until FDA approval was right around the corner. With approval, they closed the programs, and told the lottery "winners" to buy the drugs like everyone else.
In 1996 Merck and Abbot protease drugs were approved based on small, short studies. A broad coalition asked the companies to at least collect follow-up safety data. They refused, and closed most of the trials.
Years ago, when drugs and screening tests were found for tuberculosis, funding for a vaccine, support services and prevention was cut. By 1988 multi drug resistant TB was a threat. An effective, but cheap TB drug, streptomycin, was no longer available. The FDA asked drug companies to make it again.
They refused. Not a big enough market.
We hope that Statdtlanders is wrong and the Wellness Pavilion isn't "a 6000 square foot panel of the Quilt." We hope that new drug combinations do work. We hope that PWAs around the world get the chance to try them when they want to, and get the love and support that they need if they choose a different experiment: that of waiting.
We already know that these drugs do not work for everybody.
We hope that the FDA decides it's worth collecting safety data in PWAs, and requires state-of-the-art treatment options in follow-up trials. We're asking you to fight so that funding for prevention, support, and a vaccine not be cut.
And we desperately hope that the huge market in AIDS drugs doesn't leave us being chronically managed, because keeping us on multiple drugs has become more profitable than a cure.
We need good drugs. And real information. Not marketing hype, not crocodile tears, but real answers. A cure and nothing else.
About the Authors: The PWA Health Group and the People With AIDS Coalition - New York are two nonprofit organizations started and still run by people living with HIV and AIDS. Dedicated to the self-empowerment and survival of all people living with HIV, they work closely together to provide support, courage, treatment, education, love and early access to critical therapies for PWAs nationwide.
see also related...
ACT UP/NY's letter to the NAMES Project
ASHES ACTION (October 1996)
Drug Pricing Actions
PHRMA HQ October 11, 1996