No Joke: What's scariest about ACT UP San Francisco's message is that people are listening
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In Search of a Cause…ACT UP got people to take AIDS seriously, but now the San Francisco chapter claims AIDS is over and was a lie all along.

By Joel P. Engardio

Bumper stickers and campaign slogans compete for ideological space on the front door of ACT UP San Francisco's Market Street office. Various animal rights messages are mixed in with an edict that "Homosexuals Rule." In the center of it all, a sign with a big, pointy leaf proclaims, "Marijuana: The World's Best Medicine."

Gone are the catch phrases ACT UP made famous in the 1980s and early 1990s, when protesters screamed, "Fight AIDS!" and "Silence Equals Death" at demonstrations whose shock value and media-grabbing tactics were designed to make the mainstream public confront the AIDS epidemic.

Gone, too, is most of the credibility ACT UP's San Francisco chapter once enjoyed as the spawning ground of radical AIDS activism that spread across the country.

During the past five years, as the San Francisco chapter has fallen under the control of a small extremist fringe, it has increasingly devoted itself to arguing that "AIDS is over" and that HIV never actually existed.

ACT UP posts fliers throughout the Castro purporting that "HIV is a lie," and is working against approval of new drug treatments for AIDS. It claims AIDS is being used as an excuse to force gays to alter their sexual behavior, that the illnesses and deaths labeled as AIDS can be explained by other causes, and that it's the moneymaking drug treatments that are killing people -- not HIV. Declining infection rates are not indicative of better treatment and education, the group claims, but proof that AIDS was a sham all along.

Mainstream AIDS organizations are appalled by ACT UP's new message, flying, as it does, in the face of two decades of science, medical research, and experience.

"We have no qualms denouncing people who say the Holocaust never happened, yet why are we so tolerant of this group?" - AIDS Foundation spokesman Gustavo Suarez

But what is perhaps most alarming is that some people, including AIDS sufferers, HIV-positive people, and the city's top elected officials, are apparently listening.

Earlier this year, ACT UP San Francisco was able to score a private audience with Mayor Willie Brown to discuss its "HIV is a lie" theory, though the Mayor's Office has since distanced itself from ACT UP. "It's clear this is a group that espouses issues that have no basis in truth," says Bill Barnes, who serves as the mayor's AIDS policy adviser. "They're on the fringe; sort of an insane group of people. Five guys with a fax machine does not make a community. It's easy to sell denial in the middle of an epidemic, but I'd like to hope they've reached a point of saturation."

Yet earlier this month, the group met in a closed-door session with Board of Supervisors President Tom Ammiano and two other supervisors, Mark Leno and Leslie Katz.

Ammiano says he is even considering special hearings in September to "revisit" ACT UP San Francisco's concerns over AIDS treatments and HIV testing. Ammiano says any group should be able to speak with its public officials, and says that he was "happy" to meet with ACT UP last week. But Ammiano's spokesman, John Henry Pierce, emphasizes that taking time to listen doesn't necessarily mean Ammiano agrees with what he hears. "I have no doubt that if Supervisor Ammiano thought what ACT UP says is detrimental, he would say it was wrong and not help spread the message," Pierce says.

But the San Francisco AIDS Foundation, the city's oldest AIDS organization and a frequent target of ACT UP's wrath, questions how ACT UP is still afforded any credibility.

"They're saying AIDS doesn't exist, and telling people to stop taking medication, and have unsafe sex. What they are saying is so far removed from responsible opinion," says AIDS Foundation spokesman Gustavo Suarez. "We have no qualms denouncing people who say the Holocaust never happened, yet why are we so tolerant of this group?"

The message that AIDS is not real is a dangerous one, Suarez says, particularly when it is aimed at less educated and disadvantaged communities where -- despite overall decreases in HIV infections -- there remains an increasing risk of contracting HIV.

There is a long history of animosity between the AIDS Foundation and ACT UP San Francisco: ACT UP continually casts the nonprofit AIDS Foundation as a sellout to for-profit pharmaceutical companies.

Though it has long since strayed from its roots, ACT UP San Francisco uses its famous name to enjoy a certain sacred cow status, with many civic groups and politicians reluctant to criticize anyone who heralds from the gay community -- regardless of their rhetoric.

Even the Stop AIDS Project is careful not to offend ACT UP, even though the "HIV is a lie" message directly undermines the very reason why Stop AIDS exists.

"Everyone is entitled to their own opinion," Stop AIDS spokesman James Nguyen says. "If some other organization believes AIDS doesn't exist, yes, that concerns us. But we hope we can address their impact with our continued efforts of AIDS education and awareness."

Ironically, ACT UP is paying to spread its message with money it makes running a marijuana club that, to a large extent, caters to people with HIV.

To help fund its "HIV is a lie" campaign, ACT UP San Francisco runs a quasi-legal cannabis club selling medicinal marijuana to anyone with a doctor's note -- many of whom are AIDS patients. The group claims to take in $100,000 a month from its 1,000 customers who seek marijuana to alleviate symptoms caused by a wide range of ailments from glaucoma to cancer.

Roughly 70 percent of ACT UP's marijuana customers are AIDS patients seeking to ease the appetite loss and the pain associated with AIDS-related conditions.

An ACT UP spokesman says he finds no irony in the fact that AIDS sufferers are paying to help broadcast the message that AIDS doesn't exist.

In fact, says ACT UP member Michael Bellefountaine, the group is doing AIDS patients a favor. "Anyone who has gone through the terror of being given the death sentence of a false HIV diagnosis deserves a puff on a joint," says Bellefountaine. "Besides, people who believe in HIV need to use the marijuana to counter their toxic drug therapy."

Bellefountaine says of his 1,000 registered marijuana customers, about 400 still believe they have AIDS, while another 300 used to believe so but now question the reality of HIV and explain their illnesses in other ways. The remaining 300 customers have never been diagnosed as HIV-positive and use ACT UP's dispensary for various medical reasons.

"We don't care why people buy pot here, you don't have to goose-step to our mind-set to come here," Bellefountaine says. "But if someone says they have AIDS and are feeling sick, we'll tell them it's probably because of the drugs they're taking."

Bellefountaine notes that there are four other cannabis clubs in San Francisco where people can go if they disagree with ACT UP's politics. And since ACT UP uses its dispensary profits to support animal rights as well as to advocate medicinal marijuana use -- in addition to the "HIV is a lie" campaign -- Bellefountaine says customers who support at least one of ACT UP's causes should feel OK about patronizing the club even if they don't believe in the other causes.

"It's not difficult to get pot in San Francisco, so people who come here are making a choice to support one political agenda or another," Bellefountaine says. "And to be honest, why people really come here is because we have the cheapest pot in town. Love or hate our politics, you will love our pot prices, regardless [of] why you need it."

Behind a bar in the ACT UP cannabis club, a menu lists various grades of marijuana with names like "Jesus Weed," "The Kind," and "Super Green," which range in cost from $8 to $70 for an eighth of an ounce.

ACT UP San Francisco members say, after expenses, they clear about $10,000 a month to put into their causes. Despite making $100,000 a month, Bellefountaine says as much as $80,000 is given to various marijuana growers, who demand a high price since they assume the most liability in the marijuana trade. The remaining income is used to pay for overhead like rent and a $15-an-hour "living wage" for staff.

Defying established medical and scientific opinion, ACT UP San Francisco has pursued a wide-reaching campaign to say HIV is a lie, running expensive full-page ads in the gay press and inundating the Castro with fliers -- even scribbling "AIDS is a lie" messages on an AIDS Memorial Quilt billboard on Castro Street.

ACT UP San Francisco argues that none of the 29 AIDS-defining conditions, from cervical cancer to pneumonia, have anything to do with being HIV-positive. Cervical cancer, for example, is an independent disease that can exist alone in a person without HIV, they say, and anyone could get pneumonia. AIDS, they say, is just a name for a list of otherwise explainable illnesses. They also charge that HIV tests are unreliable, producing false-positive results, which scare otherwise healthy people into taking toxic drug treatments. It's the HIV drugs, ACT UP San Francisco says, that kill people. Not HIV.

Bellefountaine does not, however, argue with the fact that the 81,000 people memorialized on the AIDS Quilt, for example, are dead.

"Obviously they are dead," Bellefountaine says. "But the AIDS Quilt people don't get to claim the dead as their own. Those were our brothers and lovers, too, and we have a right to analyze what they died from. I don't want to disrespect the Memorial Quilt, but to me it's a death tarp being used to spread HIV hysteria."

Bellefountaine says he believes that something other than HIV is causing the immune suppression that leads to any of the 29 diseases that define AIDS. Instead of a viral cause, Bellefountaine and his group suggest scientists should be looking for "environmental or dietary causes that create bad health." He likens AIDS to phenomena like Gulf War Syndrome, when people fell inexplicably ill. "Some of the symptoms are the same," he claims, "but for AIDS they put people on 70 pills a day, while they told Gulf War veterans it was all in their head."

Bellefountaine and others in his group claim to have been previously diagnosed as HIV-positive, but say they remain healthy despite shunning drug treatments.

ACT UP San Francisco diverged from other ACT UP chapters in the early 1990s because members like Bellefountaine felt the original ACT UP, which initially protested for more drug development and faster government approvals, became too focused on treatment without questioning the cause of the illnesses. Claiming that ACT UP chapters across the country have now sold out to pharmaceutical companies, which look to reap giant profits peddling drug treatments, Bellefountaine and his group launched their anti-drug campaign. Another local chapter, ACT UP Golden Gate, still operates under the original ACT UP philosophy and does not associate itself with ACT UP San Francisco's beliefs.

The rhetoric of ACT UP San Francisco incenses Suarez, spokesman for the San Francisco AIDS Foundation.

"They spout a lot of nonsense, which is deeply disturbing and tremendously irresponsible," he says. "Try telling HIV never happened to anyone who lost a loved one. And if it's the medicine that is doing the killing, why is everyone dying in sub-Saharan Africa where one in four of the population has AIDS and there is no medicine available? What's killing them?"

Closer to home, Suarez worries that the ACT UP message might have an adverse affect among populations where HIV infection rates continue to grow -- like the poor, uneducated, and minority groups. While ACT UP uses quarterly Department of Health transmission statistics to show that, indeed, new AIDS cases overall are in a steep decline, AIDS workers like Suarez point out that just because AIDS is no longer affecting middle class, white, gay men in large numbers, it doesn't mean other groups are not seeing rates increase.

Suarez says he has begun to hear anecdotal reports from case managers in treatment centers serving underprivileged areas that clients are saying they've stopped taking medications after hearing ACT UP San Francisco's message that the drugs are what kill.

"The ACT UP message sounds great. It's alluring. AIDS drugs are complicated and do have horrible side effects, and no one wants to go through that or take those drugs if they don't have to," Suarez says. "But there is no scientific basis for what ACT UP claims."
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