October #64 : The Boys in the Band - by Katie Szymanski

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Table of Contents

Stephen Gendin

Be Very Afraid

The CD4 Solution?

The Boys in the Band

Bare Witness

The March

My, What a Big Trial IL-2 Has! Will It Work?

AIDSplotation or Art?

Refugee All-Stars

Drive-By Shopping

Upward Mobility

S.O.S

NEG/POS

Take Five

POZ Picks

The Medium Is The Message

A Conference Of Their Own

Milestones

Cutting Class

Last Word

It Takes A Village Voice

Conference of the Century

Stop and Start

Sit Up, Sit Down?

Too Much Information

Sex RX

Talking Tipranavir

Shelf Life

The In Crowd

Herb Of The Month

He Died Of Old AIDS

10.8.88: Old Flames



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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October 2000

The Boys in the Band

by Katie Szymanski

ACT UP/San Francisco says AIDS is not a killer disease but a vast homophobic conspiracy -- and they'll do almost anything to make that point. Katie Szymanski hangs with the activists labeled "psychopaths" to find out if there's a method to their madness.

We received a great reception at the Pride parade," announces a beaming Michael Bellefountaine, sandy-stubbled head bobbing above a boyish grin, at the weekly ACT UP/San Francisco meeting. "And unlike past years, not one person came up to me to say, 'AIDS drugs saved my life.' Not one." His comrade-in-arms, David Pasquarelli, nods from across the room. "Nobody came up to us angry," he says.

The 16 people gathered in the large warehouse on the edge of the city's Castro district all smile in affirmation: They like us. They really like us. This is unexpected from a group widely perceived as doing its best to become the worst nightmare of the AIDS community. Yet the members dedicate no small portion of their meeting to sharing such stories: The kids at the Lavender Youth Recreation and Information Center were "blown away" by the group's antivaccine posters; a city supervisor candidate endorsed their campaign to reopen the bathhouses; a guy at the gay pride parade said AIDS was "internalized homophobia." This is music to their ears.  The members of this group take every compliment they can get, and need to. ACT UP/SF is, after all, the most notorious direct-action arm of the controversial AIDS dissidents -- recently dubbed HIV denialists, a nod to Holocaust rhetoric that suggests the escalating seriousness with which critics take their heresy. With an agenda based on their conviction that not only is HIV not the cause of AIDS but "AIDS" itself is a vast conspiracy, the activists have earned a singularly sinister reputation. They've teamed with congressional right-wingers to demand zero-funding of the Ryan White CARE Act (they view AIDS programs as "parasitic" and the AIDS lobby as a "special interest"), targeted leading activists for promoting access to anti-HIV drugs (they view the meds as "poison") and protested against safe-sex education (they view the condom code as "homophobic"). And ACT UP/SF members have, of late, been investigated by police for stalking, forgery and vandalism, and sued for assault and trespassing.

As detailed in tonight’s meetings, their tactics are nowhere near mellowing. A rundown of upcoming activities: urging participants at a queer youth conference not to be tested for HIV; strategizing with Rep. Tom Coburn (R-OK) to slash Ryan White allocations; and penetrating San Francisco AIDS Foundation’s next public forum, from which they’ve been banned for prior disruptions. ACT UP/SF is clearly on a mission, and points to its pariah status as further proof of the truth if its message.

But if the members see themselves as unheeded, others see them an unhinged, and increasingly a pubic heath menace. “To maintain that AIDS is nor caused by HIV, to disrupt government and other official hearings to argue that money should not be voted on AIDS research and patient aid, to utilize vicious smear campaigns and to threaten legitimate activists with physical harm beyond any intelligent comprehension,” said Larry Kramer in a widely circulated e-mail in June. “Truly, in the face of our worldwide plague, such actins can only be construed as crazy.”

“They are psychopaths.” Says Michael Lauro, a member of the San Francisco treatment advocacy group Survive AIDS that until last February was called ACT UP/Golden Gate. “They do real harm with their messages and tactics.” Despite—perhaps even because of such community wide condemnation, ACT UP/SF likes to believe that most people will eventually sign on to its agenda, and nothing has encouraged it more than South African President Thabo Mbeki’s recent dalliance with the dissidents leading up to the 13th International AIDS Conference in July. The legitimacy this lent their cause has alarmed many in the AIDS community, unleashing a wave of statements from scientists and organizations that culminated in the dramatically defensive Durban Declaration issues July 5 by some 5, 0000 researchers, loudly claiming that “HIV causes AIDS.” Buoyed by all the buzz, “ACT UP/SF is picking up steam, and vows not to rest until it dismantles the multi-million dollar AIDS prevention and service has taken two decades to build.

“It’s frightening,” says Katie Krauss of ACT UP/Philadelphia. “The original objective of ACT UP has been skewed, and the health of thousands of people is at risk.

But their tactics strike even more fear than their goals. ACT UP/SF is the band, after all, that overturned Larry Kramer’s table at a Project Inform benefit in 1995, when he appeared with NIAID head Anthony Fauci. MD; drenched researchers Paul Volderding, MD and Margaret Fischl, MD with fake blood at the 1996 International AIDS Conference in Vancouver, and dumped cat litter and feces on San Francisco AIDS Foundation executive director Pat Christen during s forum on protease inhibitors later that year. This is the group that publishes Magnus, a sporadically issued newsletters containing digitally altered photos of AIDS executives, violent threats and gay porn. “All it takes is for someone crazier than they are to act on their magazine’s statements that I’m a murderer,” says founder Martin Delaney, founder of Project Inform, whose modified photo has most recently appeared with images of hypodermic needles aimed at his head like drawn guns.  ACT UP/SF members deny that Magnus advocates violence, but add that if people wind up hating Delaney, they’re not going to lose any sleep.

But this is also a group that, at a time when AIDS militancy has largely vanished, has rallied like-minded allies in a number of cities to start new chapters. In the past year, dissident ACT UPs have sprung up in Toronto, Atlanta and Hollywood. (In addition to Survive AIDS and Philadelphia, the most prominent "traditional" or "true" ACT UP chapters are Los Angeles, Boston, East Bay [California], New York, Washington, DC, and Paris.) In June, the four dissident ACT UPs took out a full page in Roll Call, the daily paper of Capitol Hill, calling upon legislators to end federal AIDS funding.

ACT UP/SF wasn't always this way. Krauss, a former member, recalls its early days as a "huge, important group" from the time it was founded as AIDS Action Pledge in 1987, through its growth to several hundred members following the Sixth International AIDS Conference, held in San Francisco in 1990. But explosive growth led to explosive conflict. Some members believed that racism, classism, sexism and homophobia, as root causes of the epidemic, warranted top billing on the ACT UP agenda; others were adamant that saving lives through treatment advocacy was paramount. "The Split," as it is known, took place in September 1990, when the group reached an impasse. The treatment-focused activists broke off to form ACT UP/ Golden Gate, while the ism-oriented remained in ACT UP/SF. At first, the City by the Bay's two chapters worked well together. Then Bellefountaine and Pasquarelli came to town.

Friends since 1991, Michael Bellefountaine, now 34, and Dave Pasquarelli, 32, spent their young-adult years in Florida, where they quickly earned a reputation for frightening the locals by painting city-hall doors and shutting down bridges in ACT UP/Tampa Bay protests of antigay policies. It was in Tampa in late 1992 that Pasquarelli allegedly protested a gay newspaper's stance on his tactics by dumping stacks of papers on the editor's front lawn at 3 a.m. and dousing the pile with gasoline -- and was apprehended apparently just before lighting a match. (Pasquarelli denies these charges.) In December 1993, he and Bellefountaine headed for California, both to escape Florida's right-wing presence and because Pasquarelli had the opportunity to transfer jobs within the Kinko's copy chain. (An added perk: He was later able to make copies of ACT UP/SF leaflets for free.) They left behind an irate group of activists who were not sorry to bid farewell to this "insane" pair. To this day, the two remain fiercely loyal to one another (they deny that they are or were lovers).

On a January night in 1994, two guys who were new to San Francisco wanted to go to an ACT UP /Golden Gate meeting, but the chapter was closed for Christmas. ‘They left nasty messages on our machine,” Krauss recalls. “We later found out later that they had joined ACT UP.SF.” Longtime San Francisco AIDS activist in both ACT Ups, found working with ACT UP/SF to be “ impossible”: “They would scream at me when we weren’t even arguing. At one meeting they were screaming at some PWAs who were dying, saying they weren’t doing enough. At another, they convinced members that AIDS was a gay man’s issue, and women should not be included in the platform.” At a time when the ranks of ACT UP/SF had already been thinned by death and burnout, Krauss says, Pasquarelli and Bellefountaine “polished it off.”

Initially, Pasquerelli and Bellefountaine remained committed to fighting for the usual AIDS goals—cure, safe sex. But all that changed in 1995, not long after both men tested HIV positive. Bellefountaine began neuropathy and night sweats. “It was a horrible time,” recalls fellow ACT UP/SF member, Todd Swindell, 27.
“I thought they were both going to die.”

A few months later, Peter Duesberg, PhD, professor of molecular biology at the University of California at Berkeley, released Inventing the AIDS Virus, which mentioned favorably ACT UP/SF's anti-AZT demos. By this time, the group's members had already embraced alternative treatments (including the photographic chemical DNCB, which they maintain treats Kaposi's sarcoma). "A friend who had turned us on to alternative treatments told us to get Duesberg's book to see our name," Pasquarelli says, "but she told us not to read the rest of it." Of course, they read the rest. "It was the only thing that gave me hope," Pasquarelli says. Duesberg's theory, which attributes AIDS-defining illnesses to recreational drug use and anti-HIV meds, convinced Bellefountaine that his symptoms were the result of years of alcohol abuse. In one quick read, the two found an easy answer to all the existential doubts newly raised by their health crisis.

Not lone afterward, Christine Maggiore, founder of the LA branch of the dissident support group Health Education AIDS Liaison (HEAL), wrote to Pasquarelli. She said, ‘Good job protesting AIDS drugs, but why not take it a step further and consider that HIV does not cause AIDS’ she says. “She included a copy of her book, [What if Everything You Thought You Knew About AIDS Was Wrong?], which has saved a lot of lives." Between the two positive test results and the two books, "ACT UP/SF got really active again," Swindell says.

David Pasquarelli is on his best behavior. His eyes shine in his round, freshly shaved head. He is wearing a jacket and tie. This is one forum in which he won't be raising his voice. "We are a group of individuals committed to ending AIDS," he tells a packed courtroom in San Francisco's Civic Center in July. "We sometimes use performance art to get our message across." Project Inform's Judy Leahy has just testified that Pasquarelli pushed her on April 17 when, flinging pills and shoving participants, ACT UP/SF stormed a forum on strategic treatment interruptions (STIs), sponsored by Project Inform and Survive AIDS. The push resulted in an injury to Leahy's knee, revealed by hospital X-rays, and, she says, has left her afraid to bring her kids out in public. This is the fourth session of a weeks-long case that will determine whether there is just cause for Project Inform's temporary restraining orders against ACT UP/SF members to be made permanent.

“Can you describe your message as related to HIC and AIDS?’ Pasquarelli’s attorney asks for the record.  It is the defense’s turn. And now the entire dissident philosophy is, literally, on trial. “The side effects of AIDS drugs mirror the symptoms of AIDS, “ says Pasquerelli, explaining his view of the anti-HIV drugs are the true cause of immune deficiency.

By basing their arguments of undeniable facts—the AIDS drugs do have terrible side effects, for example, and some people with HIV live long lives outside of treatment—outside the courtroom it’s easy for ACT UP/SF members to get a hearing among naive and jaded HIVers (and others). Factor in the unlikely charm of the two leaders, who are charismatic and even inspiring when you meet them on their turf, and you begin to understand how they have been able to persuade a growing number of people that what the AIDS establishment dismisses as paranoid propaganda is actually a plot to kill them.

"They look at science's unanswered questions, and they see a conspiracy," Survive AIDS' Lauro says. "Are there corrupt people in the AIDS mammoth? Yes. Are AIDS drugs toxic? Of course. But aspirin can also be toxic if you take too much. My dad has lung cancer, but if we waited until we had every answer to every treatment question, he'd be dead by now." (ACT UP/SF also opposes cancer chemotherapy and treatments such as Bactrim for pneumonia.)

Project Inform’s Delaney finds it ironic that ACT UP/SF chose to besiege his group’s forum on STIs, which are, after all, a rationale for gong off anti-HIV meds. “Instead of seeing that as something that relates to their concept, they attack us,”Delaney says. “I agree with them on the corruption of certain AIDS activists by pharmaceuticals and the side effects of AIDS drugs. Unfortunately, when they target people truly committed to ending AIDS, the miss the real corruption. I have a problem with the people they don’t go after.”

But for starters, Delaney, says, ACT UP/SF should go after its own house in order—literally. “Name me another AIDS organization where the building is purchased I the same of individuals,” he says. Delaney is referring to the space,” the immense $800, 000 building on Markey Street, bought by ACT UP/SF members. The hefty mortgage was financed by Robert Leppo, a major contributor to Duesberg, several Republican causes and the International Coalition for Medical Justice, a dissident legal group, that ironically advocates for, among other causes, HIV disability benefits.

Also at issue is the group’s lucrative medical-marijuana dispensary, acquired from another pot club in 1998. ACT UP/SF sells the herb to come 1,3000 regular customers making $1.5 million. Eleven members (each paid $15 an hour) sell grass during business hours to people with a doctor’s note confirming HIV status and other serious medical conditions. Neither profits nor salaries have ever been reported to the IRS, largely because there is no way to do so legally. “They’re not a non-profit, and they are not a business,” says Delaney. “And with nobody providing oversight, it just invites irresponsible behavior.” Bellefontaine maintains that the group keeps careful records. “It is not up to us to rewrite the tax laws,” he says. “Create a bracket for us and send the bill.”

To activists Will Carter, an African American reporter who once served on San Francisco’s HIV Health Services Planning Council. This rationale smacks of racism and ACT UP/SF’s white privilege. “Every black and Latino parent in this city and every young person who had served a day in jail on minor drug offenses should rise in outrage,” he wrote in a May 18 letter to Bay Area Reporter when ACT UP/SF's finances were made public. And given the growing rate of HIV among women and people of color, it's no surprise that minority groups are especially outspoken about ACT UP/ SF's attempts to dismantle HIV prevention. The group never includes heterosexual men or any woman at all in its messages about AIDS -- although it does sell them marijuana -- and acting up and fighting back, for its membership, is an entirely gay male-oriented movement.

ACT UP/SFers counter that tactics their detractors label “irresponsible” are nothing compared with the murder committed daily by AIDS-drug pushers. But condemning the militancy that they, too. Once embraced in the fight to end AIDS, critics of ACT UP/SF may be shooting themselves in the foot. Inflammatory rhetoric, disruption of business as usual, even property damage were the bread and butter of AIDS activism (although to be fair, both traditional ACT Ups and ACT UP/SF define themselves as nonviolent). Still, it was Larry Kramer who punched Bellefountaine at the now-infamous benefit in 1995. The means are the same, Bellefountaine claims. Only the message has changed. “What we’ve done is totally in tow with ACT UP history and agenda,” he says, ‘but because it’s us, we get reclassified.”

To its credit, ACT UP/SF is one of the few groups that takes to the streets about homophobia—something it particular proud of. When the ex-gays sponsored a “Coming out of Homosexuality Day” on National Coming Out Day last year in October, the group had the most visible and vocal protest presence. The day ended with an ACT UP/SF member throwing a pie in the face of ex-gay Michael Johnston, as the news cameras rolled. And when on June 30 the San Francisco Department of Public Health made headlines for announcing a doubling of HIV rates—holding gay men responsible for falling down on the safe sex job—they again got out the bullhorns. A recent example; In July, the group called for the resignation of two self-proclaimed barebackers from the San Francisco’s HIV Prevention Planning Council after publicly denouncing then as hypocrites and disturbing copies of erotic photographs of themselves that they had posted on websites.

So whatever happened to ACT UP/Golden Gate? On February 29, the treatment-advocacy group formally changed its name to Survive AIDS. "ACT UP/SF thrives off of confusion, and this way we can simply say, 'They're crazy, we're not,'" explains Lauro of Survive AIDS. But ACT UP/SF went straight to work, immediately registering two Internet domain names -- http://www.surviveaids.com/ and http://www.surviveaids.net/ -- directing web surfers to its site instead of the official Survive AIDS site (http://www.surviveaids.org/). To ACT UP/SF, Golden Gate's surrender of the ACT UP label was a sweet victory, recognition that in the classic "place at the table vs. outsider" divide, these direct-action dissidents continue to carry the movement's torch. But given Mbeki's interest in their point of view -- and all the attention it recently received -- the dissidents may soon be sitting at a "table" of their own. When organizers of the 13th International AIDS Conference denied ACT UP/SF booth space in Durban, for instance, prominent dissident researchers -- Duesberg among them -- did not protest. "The dissidents at Durban still believe in the system. They just want to re-evaluate AIDS," Pasquarelli explains. "We want to get over this AIDS thing, and get back to queer liberation."

And those two words, as Pasquarelli & Co.'s newest incarnation as "Queer Nation" suggests, is the meat of their mission: to (re) conjure a culture where barebacking is not condemned, bathhouses are opened, and homosexuals are not scapegoats for societal ills. "Nobody's having fun anymore," Swindell says. To him and his fellow believers, AIDS is not a virus that kills but merely a word that signals conformity. "What happened to a group of men in the early '80s, for whatever reason, cannot dictate policies today." To member Ronnie Burk, AIDS is institutionalized self-hatred. "Gay men have come to worship death and identify as victims," he says.

The group's dissident views are something that other members have come to embrace out of convenience, necessity or both. "My cause is animal rights," a woman at the Monday meeting admits. Tate Swindell, brother of Todd, tells POZ that he joined the group to sell marijuana. "Todd called me when I was living in Orange County and said I should come up to work," says the 25-year-old. "The members never pressured me into joining, but when I saw how healthy they were without taking meds, I thought, 'Wow!'"

"Animal rights, medical marijuana and HIV dissident activists," Pasquarelli says, "all come together under the distrust of the medical establishment." But rather than the dawn of a brave, new movement, the ACT UP/SF sound and fury likely signifies nothing more than another nail in the coffin of AIDS activism -- and the most recent example of what some people have referred to as the gay community's eating its own.

With his voice mounting, Pasquarelli recalls the April 17 forum: "I marched into the room and approached Mr. Delaney and said, 'Martin Delaney, you lied to the community.' I told him, 'You said people should stay on their medicines no matter what, and now you say the opposite.'" At that moment, according to nearly every prosecution witness called, chaos ensued. Pills flew, people screamed, arms flailed, and panelists ran for exits. In the corner, Pasquarelli hovered over a shaking doctor, preventing him from leaving the building and striking him repeatedly with a cardboard sign.


READ THEIR LIPS
Phone message from ACT UP/SF to POZ, 7.20.00:

"Dave Pasquarelli calling from ACT UP/San Francisco, my number is 415.637.4666. I just got the press release about Stephen Gendin dying, and I'm reading here that his death was caused by cardiac arrest while undergoing chemotherapy for AIDS-related lymphoma.

"What's going on here? Thirty-four-year-old men do not die of cardiac arrest. I looked at him in the pages of POZ month after month, subscribing to the treatments that you people promote. Now, I don't know anything about this man, but what I do know is young, gay men dying at the age of 34 from cardiac arrest is not normal, and you people have a hand in his death.

"And it's very upsetting to me to work at ACT UP/San Francisco, where I see 1,300 clients, many of whom are like Stephen Gendin -- young, gay men being cut down in the prime of their life not from HIV but from the drugs that your magazine promotes. Not only protease inhibitors but chemotherapy for AIDS-related lymphoma. You know, we have members who have lymphoma, and we know that the majority of lymphoma does not need to be treated with systemic chemotherapy.

"You people are destroying gay men, and I attribute his death to you. To you and to the rest of the people at POZ who are promoting these deadly therapies. It has got to stop, and ACT UP/San Francisco is going to make sure that it stops. I just want to place the blame squarely on your shoulders."



























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