By Liz Highleyman

Bay Area Reporter 23 July 1999

Most Americans feel confidant that the threat posed by AIDS is diminishing, thanks to medical research that has identified the causative virus and improved therapies to seek it out and limit its replication. But not everyone is convinced, as is obvious from the actions of "AIDS dissidents" who post flyers, spray-paint Castro sidewalks, and place newspaper advertisements urging the community to "challenge the HIV myth." In addition, many people have become increasingly disenchanted with standard combination anti-HIV treatments in the wake of news about widespread drug failures and adverse side effects.

The best-known dissidents in San Francisco are members of the group ACT UP/San Francisco, who are proud to resist what they call AIDS orthodoxy. Their views including that antiretroviral drugs are harmful, that safer sex is unnecessary, and that animal testing of medical therapies is unethical have led to frequent (and sometimes violent) conflicts with other activists, medical researchers, and leaders of AIDS service organizations.

ACT UP/San Francisco's targets have included national ACT UP founder Larry Kramer and the Bay Area's other ACT UP group, ACT UP/Golden Gate, which holds diametrically opposed views. ACT UP/SF's actions have frequently outraged others in the gay and AIDS communities. This was perhaps best exemplified when ACT UP/SF member Ronnie Burk dumped used cat litter onto the head of San Francisco AIDS Foundation Executive Director Pat Christen at a public forum in 1996.

ACT UP/SF's tactics have left them virtually isolated, but they continue to spread their message. Although ACT UP/SF is the most visible group of dissidents locally, other groups (some with overlapping memberships) also question the AIDS orthodoxy. These groups include HEAL San Francisco, and Alive and Well, formerly known as HEAL Los Angeles. Members of these groups have claimed that the AIDS epidemic is over if indeed it ever existed and that the world would be better off if people stopped using protease inhibitors.

This Wednesday, July 28, the San Francisco Chapter of HEAL will meet with guest speaker Marcia Rendle Smith, Ph.D., a neuropath who believes the western medical approach to disease doesn't work. Smith will offer advice on ways people can take charge over their own health, and promises to explain "why we get sick, and how the immune system can be nurtured back to health without dangerous and intrusive treatments prescribed by allopathic physicians." The meeting is open to any interested parties.

The last forum

About 90 people attended a larger forum co-sponsored by ACT UP/San Francisco and Alive and Well last month, entitled "Rethinking AIDS: From Tragedy to Triumph." It followed by two days a presentation by Dr. Peter Duesberg, a University of California, Berkeley retrovirologist who is perhaps the most well known opponent of the idea that HIV causes AIDS. The four panelists shared the common belief that "the collection of illnesses grouped together and called AIDS is not caused by a virus."

Dr. Charles Geshekter, a professor of the history of science, responded to the common challenge to AIDS dissidents, "What about Africa?" Geshekter said that the definition of an AIDS case in African countries is often based solely on clinical symptoms such as persistent fever, cough, diarrhea, and weight loss; he wryly observed that "by this definition, I've had AIDS." Geshekter concluded that austerity measures promoted by agencies such as the World Bank and the International Monetary Fund have worsened access to health care in much of Africa, and that "the classic symptoms of AIDS are the classic symptoms of underdevelopment." Although Africans are suffering from the same diseases as always, "No one wears ribbons for tuberculosis and the lack of clean drinking water."

Christine Maggiore, director of Alive and Well and author of the book What if Everything You Thought You Knew About AIDS Was Wrong?, first tested HIV-positive in 1982 and has since received a series of negative and positive test results. Maggiore emphasized that "there is no such things as an AIDS test," only tests for HIV antibodies and genetic material, and presented a long list of factors that can lead to false positive HIV antibody tests, including recent pregnancy, various vaccines, transplants, bacterial and viral infections, and a wide range of naturally occurring antibodies. Maggiore condemned the fact that the HIV antibody test is used "to tell women not to have children and to tell people not to have unprotected or any sexual relationships." Although she has never taken any anti-HIV drugs, Maggiore said she remains healthy and has a 21-month-old HIV-negative son. She concluded, "You don't have to have initials after your name to make decisions about your health," before leaving to breastfeed her child. Breastfeeding is considered by many experts so dangerous to an HIV-negative infant that one state, Washington, has gone to court to force a mother to switch to formula.

Dr. David Rasnick, a protease inhibitor specialist, said that "after 24 years of working with protease and protease inhibitors I am unable to support claims of clinical benefits." Rasnick noted that even the National Institutes of Health (NIH), which publishes the federal HIV treatment guidelines, states that anti-HIV therapy is based on "theoretical considerations" and that "no long-term clinical benefit of treatment has yet been demonstrated." Rasnick said he was not alone in questioning anti-HIV therapy, and presented quotes from prominent AIDS researchers Dr. Jay Levy, Dr. Donald Abrams, and NIH director Dr. Anthony Fauci to support his skepticism. A recent study from the University of California at San Francisco/San Francisco General Hospital showed a treatment failure rate as high as 50 percent among people using anti-HIV drugs under real-world conditions.

Active activists

But what of the many people with AIDS who attribute their new-found health to protease inhibitors, and the many reports of decreases in AIDS deaths, hospitalizations, and rates of opportunistic infections coinciding with the widespread use of combination antiretroviral therapy? According to Rasnick, death rates have decreased largely because of the shift in the definition of AIDS. Prior to 1992, the definition was based on various illness such as Pneumocystis carinii pneumonia or symptoms such as wasting. In 1992, the definition was changed to include a CD4 T-cell count below 200. Naturally, said Rasnick, adding so many healthy people (that is, people who have HIV antibodies but are otherwise not sick) to the pool of "people with AIDS" caused the death rate to drop dramatically.

As for individual reports of Lazarus-like recoveries, Rasnick stated that just as there are cases of people who have done very well on the new drug combinations, there are also those who have done very poorly on the drugs, and those who have done very well without drugs. Rasnick asserted that drug benefits cannot be determined on an individual basis, but that only long-term, placebo-controlled clinical trials can provide definitive proof. Finally, Rasnick noted that when many people say they have "gotten better" on anti-HIV therapy, they mean that their viral load has decreased and their T-cell count has increased, not that they feel better; in fact, many people felt fine before they started taking drugs, and the drugs have made them feel worse.

ACT UP/SF's Michael Bellefountaine concluded the evening's presentation with an overview of the politics of AIDS, after proudly listing among his accomplishments the dousing of Dr. Margaret Fischl with red paint at the 1996 International Conference on AIDS in Vancouver, and the overturning of tables at Project Inform's 1995 fundraising dinner featuring Fauci and ACT UP founder Larry Kramer. Bellefountaine said that ACT UP/SF started out trying to disprove the AIDS dissidents, but were instead convinced by them. To rousing applause, he asserted that the AIDS industry has "subverted" what the gay community set up, and that the community "must either reclaim it or dismantle." He also emphasized the need to fight the increasingly criminalization of people with HIV, including laws that make it illegal for people with HIV to have sex without disclosing their status, and warned against the possibility of directly observed therapy (as used in tuberculosis treatment) in which people are forced to take medication. According to Bellefountaine, "people with HIV who are living healthy, vibrant lives should not be forced onto toxic therapies."

The panel presentation was followed by over an hour of questions from the audience. When asked why blood transfusion recipients got AIDS if it was not caused by a transmissible virus, Rasnick answered that recipients of both HIV-positive and HIV-negative blood had similar high rates of illness, and that hemophiliacs did not begin dying in large numbers in the early 1980s, but rather in 1987 when AZT was introduced. When asked to comment on the conspiracy theory that AIDS was invented by the federal government to decimate certain populations, Rasnick wryly stated that if HIV was invented for such a purpose, "it's a dud." When asked why doctors would promote harmful drugs if they know better, Maggiore stated "it's difficult to have a career based on something that turns out to be wrong."

Dave Pasquarelli, also of ACT UP/SF, noted that several groups that advocate mainstream views about AIDS and HIV treatment including ACT UP/Golden Gate, Project Inform, the San Francisco AIDS Foundation, and the San Francisco Department of Public Health were asked to participate in the forum, but all declined the invitation.

Martin Delaney, the founding director of Project Inform, issued a written statement claiming that "The scientific debate on the relationship of HIV and AIDS ended in the middle 1980s. No serious scientific group has accepted any new evidence since then that suggests HIV is not the cause of AIDS.

"The proposed forum implies that these issues are considered debatable participating would be as fruitless as agreeing to debate evolution with a gaggle of Christian fundamentalists shouting verses from the Bible."

Wednesday's meeting takes place at the Park Branch Public Library located at 1833 Page Street between Cole and Shrader in the Haight District. The meeting will begin at 7:30 p.m. and will run until around 9:30. For more info call (415) 835-0694. ACT UP/San Francisco also sponsors a public discussion group that offers participants an opportunity to "talk with people who doubt popular AIDS beliefs and question drug industry information." The group meets the first and third Sunday of each month at 1884 Market Street. Call (415) 864-6686 or e-mail for more information.