Photo by Jack Gould
You remember ACT UP, that in-your-face group of gay activists who weren’t afraid to brandish their queerness in the face of straight America? The group that also battled the nation’s complacency with the AIDS epidemic, calling for research dollars and the fast-tracking of affordable treatments?
Many credit the brave street soldiers of ACT UP with successfully challenging the ethos of an AIDS-phobic America, to the point that, through science and public awareness, a disease that was once swift and fatal in the U.S. is now more or less manageable, though still dangerous.
That version of ACT UP is now under attack — by a new generation of gay ideological militants who are challenging the original ethos of ACT UP itself and who are seeking to usurp the ACT UP name for a strikingly different agenda.
These “rebels” oppose conventional AIDS treatments and challenge the basic science of AIDS itself, which sees the HIV virus as the cause of the disease. The dissidents argue that it’s anti-HIV medicine and not HIV that is killing people. Their two main battle cries are “Don’t Take the HIV Test!” and “AIDS Drugs Are Poison!” And they are doing their best to end funding for AIDS treatment and research.
That message rang out loud and clear in a June 22 full-page advertisement that appeared in the Capitol Hill Roll Call urging Congress to “Pull the Plug on AIDS Fraud” and to “Cut AIDS Funding Now.”
Though roundly dismissed by nearly all doctors and researchers, this message has gotten the ear of political leaders, including right-wing California Congressman Gary Miller and South African President Thabo Mbeki, whose country, which is being decimated by AIDS, hosted the 13th annual International AIDS Conference last week. Mbeki has been widely criticized for saying he is not convinced that HIV is the only cause of AIDS.
There are now three dissident groups claiming the ACT UP name. An 11-year-old group in San Francisco has both the largest membership (about 1,335) and the most impact. ACT UP Atlanta formed last year. And last month marked the first formal meeting of ACT UP Hollywood, whose founders include Rex Poindexter, an HIV-positive freelance journalist who decries the high profits of drug companies that produce AIDS treatments as well as the salaries of researchers and activists who’ve made a career of chasing a cure.
“We’re angry that millions of taxpayer dollars intended to help sick patients are being squandered on high salaries and are used to subsidize pharmaceutical-industry production of dangerous drugs that cause deformity, death and diseases indistinguishable from AIDS,” says Poindexter, whose ACT UP Hollywood helped pay for the ad that ran in the Washington, D.C., paper.
It’s dusk on Robertson Boulevard in West Hollywood on June 25. A dozen or so curious onlookers have filed into a dingy, rent-by-the-hour storefront, where they are greeted by a video of a demonstration against the Gay and Lesbian Center last winter. The protest, led by the founders of ACT UP Hollywood, was prompted by the center’s refusal to host regular ACT UP Hollywood meetings.
After everyone settles in, Poindexter and fellow group â leader Rodney Knoll welcome them to the first formal meeting of ACT UP Hollywood. Then they begin to lecture the assembled about the “multifactorial” hypothesis: that AIDS is caused by drugs, smoking, poppers (inhaled stimulants), poor diet and stress rather than by a single infectious agent.
In tone, the placid meeting is very un–ACT UP, which, in its heyday, ran by noisy consensus, frowning upon the ideas of leaders. The presentation is cogent, due in large part to Knoll’s breezy, intellectual style.
At first glance, Knoll’s profile seems remarkably similar to the old guard of ACT UP: a youthful, gay man who questions authority and who has educated himself about the science of AIDS. Knoll says that when he last tested for AIDS six years ago, he was negative for the HIV virus, but he worried constantly about getting sick, even though he says he consistently practiced safer sex. He stopped taking the test when he began to doubt the connection between HIV and AIDS. He also harbored doubts about the test’s reliability.
“I just got so paranoid every time I took that HIV test,” he said in an interview, “that I decided to wonder if I was putting my life at risk every time I got hooked up to AIDS Inc.”
“AIDS Inc.” is the term derisively used for the mainstream effort against AIDS. Early on, researchers and activists joined with pharmaceutical companies to push for the development of drugs as the main weapons in the arsenal against AIDS. The dissidents regard this as a premature consensus fueled not by compassion but by corporate capitalism on the part of the drug companies.
Many at the meeting appreciate this critique, including the condemnation of the $200,000 annual salaries of people such as San Francisco AIDS Foundation executive director Pat Christen — while people with AIDS die impoverished.
Knoll and Poindexter note that there are hundreds of unanswered questions about how HIV causes AIDS, and how treatments involving protease inhibitors really work. They say they are worried that with more and more side effects being discovered each year, these treatments, in the long run, will kill more people than they help. Public discussion of these open questions, they contend, is all but silenced.
Despite some nods of agreement, there are questions and challenges: How do the dissidents account for the decline of AIDS-related deaths in this country? (They dropped from a high of 49,947 in 1995 to 8,054 last year.)
Statistical smoke and mirrors, asserts Knoll. He dates the peak year of the epidemic as 1993, arguing that researchers expanded the number of AIDS patients by expanding the definition of an AIDS patient to include many healthy, asymptomatic carriers of the virus. The new protease inhibitors, he adds, “were not widely available until 1996.”
While Knoll has no academic qualifications for providing such an analysis, he does cite sources, including the work of researchers and writers sometimes considered to be on the fringe, such as AIDS scientist Peter Duesberg and journalist Christine Maggiore. From a standpoint of credentials, says Knoll, he is no more or less qualified than the original ACT UP activists, who, he adds, have been in bed with the homophobic establishment.
An athletic-looking man debates Knoll and Poindexter, saying he credits his release from premature death to the protease cocktails. Poindexter retorts, “While it seems that the drugs help some people, I have stories of people dying from the drugs. You have your anecdotal evidence and I have mine.”
AIDS science changed forever when Time magazine put New York City AIDS researcher David Ho on its cover as the 1996 “Man of the Year.” Arguing that HIV wasn’t a latent virus but one that replicated ferociously, he recommended that doctors “hit hard and hit early” with drugs that literally bombed the immune system. Ho gave his patients “cocktail therapy,” or Highly Active Antiretroviral Therapy (HAART), and then calculated how many virus particles were produced each day by infected cells. His mathematical model seemed to prove that such a tactic could reduce the virus to undetectable levels.
His findings revolutionized AIDS medicine. Everyone who tested HIV-positive was encouraged to take the expensive cocktails, even if they experienced no AIDS symptoms. Everyone jumped on Ho’s bandwagon. His faith in HIV as the singular cause of AIDS was so deep that he produced buttons at the 1995 AIDS conference that said, “It’s the virus, stupid.”
But not every HIV expert is as ideologically self-assured, including Dr. R. Scott Hitt, president of the American Academy of HIV Medicine and past chair of the Presidential Commission on HIV and AIDS. Hitt, who lives in Los Angeles, worries that the drugs can be toxic, sometimes leading to liver failure. But the pros outweigh the cons: “Usually, with the 14 drugs that are available in the market, you can find a combination that is well-tolerated by an individual.”
Hitt agrees with the dissidents that there was a drop in mortality before the introduction of protease inhibitors. That first steep drop was due to improved methods for treating AIDS-related infections. “For instance, taking Bactrum daily to prevent pneumonia when the T cells are below 200 had a profound impact,” he said. All the same, added Hitt, the dissidents are not acknowledging the massive reduction in death rates that took place using Ho’s HAART-style treatment. “Deaths per hundred thousand nationally in 1995 were 17,” he said. “That dropped in 1997 to seven deaths per hundred thousand nationally.”
Knoll, the self-taught dissenter, counters by saying that people are still dying, only now from organ failures resulting from protease-inhibitor poisoning. It is, of course, deeply ironic that an ACT UP activist would be making such a claim.
With its ability to stop traffic, interrupt business-as-usual and attract a media feeding frenzy — with flagrant kiss-ins and “die-ins” — the original ACT UP movement was militant but not violent. Its leaders sat down at the same table with the nation’s highest-ranking politicians and scientists to shape AIDS-drug policy. ACT UP first earned a reputation for pushing for practical change when, in March of 1987, prominent author-gadfly Larry Kramer — who had founded Gay Men’s Health Crisis in 1982 — gave a fiery speech at New York’s Gay and Lesbian Center to a packed house of young gays. “I sometimes think we have a death wish,” he told them. “We have sat back and let ourselves be literally knocked off man by man without fighting back.”
The speech inspired 300 young men and women to gather at a Wall Street corner soon afterward to rail against the Food and Drug Administration (FDA) policy of keeping life-sustaining drugs bound up in a nine-year approval process.
The New York–based group called itself the AIDS Coalition To Unleash Power — ACT UP. The demonstration made the evening news. A few days later, when FDA chief Dr. Frank Young talked about speedier drug releases, Dan Rather credited ACT UP with that change. Nine months later, ACT UP/Los Angeles was formed.
While also concerned with fast-tracking drugs for AIDS treatment, ACT UP/Los Angeles focused more on improving access to care for the poor and disenfranchised. The group celebrated its 12th anniversary last year, but faces an uncertain future because of its own success: People with AIDS have been going back to work, and the AIDS wards have been closing.
In addition to a financial crunch, the organization has suffered from a waning sense of mission, an ideological vacuum. In this country at least, the urgency to “stop AIDS now” no longer exists, given that AIDS-related deaths have plummeted. Over time, most of the original ACT UP stalwarts have either died or moved into other activities.
ACT UP’s leaders never fully appreciated this new enemy of dissension within their own ranks, as acknowledged by co-founder Kramer. “Unfortunately,” Kramer wrote in a June 23 Internet statement, “because ACT UP chapters can be set up by anyone (under the all-too-democratic principles that we tried to live by for so many years), [ACT UP] has been infiltrated by people whose behavior I can only characterize as psychopathic, people who lie and cause great willful damage.”
Last month ACT UP/San Francisco, an 8-year-old rebel group at odds with the older ACT UP/Golden Gate, mailed 450 packets of AIDS-dissident information to Congress. ACT UP/Golden Gate has become so eager to disassociate itself from the “new” ACT UP that the group recently changed its name to “Survive AIDS,” signifying that the dissidents won that particular battle for the ACT UP legacy. ACT UP/San Francisco involves itself in a variety of causes, including providing access to medical marijuana for people with AIDS. The group also has close ties to animal-rights activists who have been accused of vandalism. Jeff Getty, of Survive AIDS, said in an interview that the other group’s extremism and collusion with overly zealous animal-rights groups completely ruined the name ACT UP.
Original ACT UP–ers also said they are worried that the dissidents could play into the hands of the right wing, by providing a justification for slashing AIDS-research funding, a step that could pave the way for other anti-gay measures. On June 6, Representative Gary Miller (R-Pomona) forwarded to every member of Congress a May 15 letter, from a dissident group using the name ACT UP, that called for an end to AIDS funding. In a memo with the letter, Miller wrote, “I understand that ACT UP has taken a new position regarding the federal funding of AIDS.” To date, no other member of Congress has advanced the message of the dissidents, which Miller apparently mistook as a change in policy by the original leaders of ACT UP.
“These [dissidents] have hijacked the ACT UP name in order to push a redundant, failed cause that has been around for nearly 15 years,” says ACT UP/Los Angeles founding member Peter Cashman. “Having been unable to get any credibility or national recognition through their own,” he said, “they deliberately stole our credibility.”
Knoll and Poindexter say they assumed the ACT UP name out of desperation to help save people.
Until recently, most activists, including Cashman, laughed off such comments. But just last week, Kramer felt compelled to post an Internet message for attendees of the AIDS conference in South Africa: “The fallacious deeds and arguments spewed by these distressing malcontents must not be allowed to disrupt the forthcoming and vitally important International AIDS Conference.”
But in fact the message of the dissidents did make a difference. South African President Mbeki made headlines when he announced his belief that some symptoms attributed to the AIDS virus are actually the result of poverty and other problems that have troubled Africa for decades. He expressed concern over introducing costly and potent drugs into bodies that have been weakened by ills other than the HIV virus.
More than 5,000 leading scientists, doctors and medical experts responded directly to Mbeki (and the dissidents) in a document published in the scientific journal Nature just a week before the conference. The so-called Durban Declaration asserted that overwhelming evidence shows that the HIV virus is the cause of AIDS. Denying this reality would cost countless lives by hampering blood-screening efforts, curtailing the use of condoms and limiting the use of drugs to cut mother-to-child transmission of the virus. Scientists from the U.S. National Academy of Science, the U.S. Institute of Medicine, Germany’s Max Planck Institutes, the Pasteur Institute in Paris, the Royal Society of London and the National Institute of Virology in South Africa signed the document.
Indeed, the news coming out of the South African AIDS conference suggests that the AIDS crisis is far from over. The disease is ravaging entire countries on the African continent. In the developing world, neither standard drug treatments nor effective safety education is widely available. Meanwhile, in North America, increases in risky behaviors and a growing infection rate among gay youth and people of color are setting the stage for a resurgence of the disease, according to officials. The ideology of the dissidents, they note, could represent views widely held by those who engage in unsafe practices, such as having sex without condoms or sharing needles while using drugs. The ideology also affords a safe harbor of rationalization.
“Anyone is allowed to ask any questions they want,” says Hitt, the Los Angeles doctor and AIDS expert. “I as well as others agree that it would be fine to have more funding to look into the pathogenesis of the HIV virus. I don’t think that medicine has all the answers to this disease yet.” But that doesn’t mean that people shouldn’t get AIDS tests or practice safer sex. And the notion of cutting funds to develop an AIDS vaccine and drug treatments, he adds, would be “very dangerous given today’s knowledge.”