By David Pasquarelli and Michael Bellefountaine
San Francisco Chronicle 11 Oct. 2000
What a difference a dozen years make
On Oct. 11, 1988, hundreds of activists from ACT-UP, the AIDS Coalition To Unleash Power, seized control of the U.S. Food and Drug Administration to demand quicker access to experimental treatments for AIDS. While their intent to save lives was noble, the deregulatory effect of their actions was ultimately disastrous.
Since its formation in 1987, ACT-UP's goal of speeding the introduction of AIDS-fighting "drugs into bodies" has been as controversial and unprecedented as AIDS itself. Confusing matters further was the cultural context and unbearable fear of HIV that the radical group was born into: Beginning in 1980, certain sexually active gay men whose immune systems were overloaded with chemicals -- antibiotics, vaccines and recreational drugs -- began contracting odd illnesses.
The Reagan administration seemed to take little notice of homosexuals whose health was failing. Instead, societal disapproval of homosexuality fueled government scapegoating of sick gay men. Then, amid growing public pressure, federal researchers announced that these illnesses had to be caused by a sexually transmitted virus and denied all other noncontagious, disease-causing factors these men had in common. Predictions of a looming heterosexual plague and total annihilation of the gay community, coupled with apocalyptic fears about the extinction of the human race, circulated as the millennium began coming to a close.
In the end, the government pushed its agenda of family values and deregulating industry by playing on anti-gay prejudice and the public's fears of the disease. When it came to finding out what was wrong with a small subset of immune-compromised gay men, all manner of scientific scrutiny and humane drug testing went out the window. Sick AIDS victims were turned into scientific guinea pigs.
Now, 12 years later, and with the clarity of hindsight, it is time to admit that a terrible mistake was made. The demand for quicker access to experimental drugs in an attempt to cure an insufficiently studied medical mystery has failed, costing us countless lives. The demands of those original ACT-UP terrorists (to shorten the drug-approval process; to eliminate important phases of research, including double- blind placebo-controlled studies; to permit the use of other potent drugs during clinical testing and aggressively experiment on those at all stages of AIDS) have created a continuing treatment tragedy.
The latest chapter begins in 1996, when a new class of drugs called protease inhibitors were proclaimed a potential AIDS cure at an international conference. Protease inhibitors, rushed through an FDA regulatory process in fewer than 72 days, are typically touted as "life-extending miracles" by an army of pharmaceutical industry public relations firms. Of course, thanks to ACT-UP's early demands, no long-term survival studies of treated versus untreated AIDS patients were conducted before the mass marketing of the drugs.
For four years, physicians have given these experimental pills to HIV-positive individuals -- again at the urging of ACT-UP.
However, despite the AIDS-drug media blitz, the list of adverse effects caused by protease inhibitors continued to grow: liver damage, kidney failure, diabetes, heart attacks, strokes and metabolic abnormalities resulting in hunchbacks, tumor bellies, stick-like limbs and bones so brittle they shatter like glass.
The list, too, of AIDS treatment activists whose lives were cut short by the drugs they fought for has also grown at an alarming rate. The October 2000 cover of POZ, an AIDS magazine, featured a close-up of the corpse of New York treatment-activist Stephen Gendin, dead at 34 from cardiac arrest.
What some AIDS activists refuse to acknowledge is that in 1996, members of ACT-UP/San Francisco publicly renounced the "drugs into bodies" medical experiment as fatally flawed. Members scoured the medical literature and consulted with scientists before the protease inhibitor advertisements hit magazines, bus shelters and billboards. We staged over-the-top media stunts using red fruit juice, used cat litter and Silly String to counter millions of dollars of AIDS-drug advertising and to propel into public consciousness our message that these new pills would kill. We were vilified as crazy and violent.
In addition, we questioned whether AIDS was caused by a virus and doubted the premature conclusion that the presence of antibodies to HIV signaled impending death. Our skepticism was based on the realization that when medical institutions condemn individuals to die from a virus assumed to always be fatal, those individuals become expendable. The benefit of any product a drug company concocts, no matter how toxic, will always outweigh the risks to people labeled "terminal," thereby guaranteeing a profitable market. We were dismissed as dangerous denialists.
Time will tell if the HIV-positive members of ACT-UP/San Francisco, who remain medication-free and healthy, are crazy. In the meantime, we thrive with a high quality of life while those taking AIDS drugs continue to suffer and die. As activists who once screamed for "drugs into bodies," we now understand the human cost of our misguided demand. We admit the errors of our past, and we live every day trying to make amends for the damage our actions have caused.
Still, one important question remains: How much longer will the public allow the AIDS-drug industry to make a killing off the tragic HIV mistake?
David Pasquarelli and Michael Bellefountaine are medication-free AIDS survivors and members of ACT-UP/San Francisco. For more information, visit http://www.actupsf.com .
(ACT-UP/San Francisco split from ACT-UP in 1990. Those who accepted the scientific evidence that HIV causes AIDS formed ACT/UP Golden Gate, now Survive AIDS.)