We Get Sick • They Profit

THE WOMEN ALIVE TASK force and editorial team, overwhelmingly supports the PWA Health Groups position statement concerning the AIDS epidemic and the disgusting profiteering off the backs of our dearly departed. The following article is taken from "Notes From The Underground", a publication of The PWA Health Group - December 1996, Issue 34, - 212.225.0520.

In October the PWA Health Group went to Washington and joined others in a large 'Wellness' Pavilion tent set up by Stadtlanders, the mail order pharmacy with exclusive rights to distribute Crixivan. The tent was set up next to the AIDS Memorial Quilt. We went to challenge the idea that drug companies should be the ones to define PWA Wellness. We handed out the following (The text in italics was added by Women Alive.).

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 to people with AIDS, ever.

Greed

We know it's no coincidence that the largest display here is Roche, who makes the weakest, but most expensive, protease inhibitor. And how can Serono come here, when so many of us have died from wasting, unable to get their growth hormone priced at over $6,000 a month?

In 1986, AZT was made available because of promising, but preliminary data showing increased survival. In 1993, early AZT use was discredited. In 1994, AZT monotherapy was flaunted as the key to halting perinatal transmission. HIV infected pregnant women were coerced into a regimen of AZT monotherapy based on the findings of a single study with very few participants and an inferior design. In 1995, AZT mono-therapy was shown to shorten life. In 1996, the National Cancer Institute proved that AZT causes cancer in offspring of female rats who take it while they are pregnant.

Access

And in 1995, instead of early access programs, the protease drug companies ran lotteries, playing PWAs off 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 lottery winners to buy the drugs like everyone else.

In 1996, Merck and Abbott protease drugs were approved based on small, short studies. A broad coalition asked them to at least collect follow-up safety data. They refused, and closed most of their trials.

Years ago, when drugs and screening tests were found for TB, funding for a vaccine, support services and prevention was cut. By 1989, 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.

Hope

We hope that Stadtlanders is wrong, and their Wellness Pavilion is not 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 as much love and support 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 that 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 off.

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 LESS !