By Erin Sherbert
By Erin Sherbert
By Leif Haven
By Erin Sherbert
By Chris Roberts
By Kate Conger
By Brian Rinker
By Rachel Swan
At the peak of the ACT UP movement, ACT UP San Francisco was one of 100 chapters nationwide, and the local organization had as many as 70 members. The San Francisco group was regularly involved in well-publicized actions, or "zaps" in ACT UP parlance, that ranged from a protest of drug approval processes at the FDA's headquarters in Rockville, Md., to a week of demonstrations during the sixth International Conference on AIDS in San Francisco in 1990.
Although membership swelled that summer, by year's end, philosophical differences had divided the San Francisco group in two.
Those who preferred to focus on AIDS treatment and access to new drug therapies formed a new chapter, ACT UP Golden Gate. Those who remained as ACT UP S.F. focused on broader political and social issues around AIDS.
"The Boys From Florida" (as Pasquarelli and Bellefountaine would later become known) arrived early in 1993, during a down period for ACT UP S.F. In San Francisco, as in cities across the country, many of the best and brightest AIDS activists had died. Some had moved on to other pursuits. Others were simply burned out. ACT UP S.F. had dwindled to about 10 members.
"We were exhausted. The fewer people there were, the more work each of us had to do," remembers former ACT UP member Rebecca Hensler. "We were 10 tired people."
She and other ACT UP members recall that the group was initially receptive to the newcomers. But that sentiment soon faded. Former members say the Boys From Florida joined forces with a wing of ACT UP S.F., the Alternative Treatments Committee, and began aggressively pushing for the widespread use of DNCB -- a chemical solution commonly used for developing color film -- as a treatment for HIV.
There is no scientific proof that DNCB works. Dr. Steven Miles, a researcher with the National Institutes of Health, says that advocating the exclusive use of DNCB over AIDS treatments with proven clinical value is -- to put it simply -- dangerous.
"There is no evidence that DNCB decreases opportunistic infections, or increases T cells, or delays the onset of AIDS," says Miles, who heads the Clinical AIDS Research and Education Clinic at the University of California at Los Angeles. "To mislead people into believing that is a gross misrepresentation."
Miles says the existing data on DNCB is unreliable because the studies report only selected results from selected patients. Says Miles: "I'm singularly unimpressed."
ACT UP S.F. frequently cites Dr. Raphael Stricker, one of the very few medical "authorities" to publicly endorse DNCB. But Stricker's professional track record speaks for itself: He was fired from the University of California at San Francisco in 1990 for falsifying results of an AIDS study in an article published in the New England Journal of Medicine.
Supporters of DNCB cite testimonials of AIDS patients as evidence that the drug boosts immune function. Some people have reported feeling "better" after applying the substance to their skin. Others have reported severe rashes, burns, and blistering.
The Boys From Florida, however, were convinced of DNCB's effectiveness and decided that the rest of ACT UP S.F. needed convincing, too. The DNCB group began holding its own community forums to promote the use of the photoactive drug, which ACT UP S.F. now distributes for "suggested donations" of $5 to $20, depending on the quantity supplied.
DNCB has hardly been a moneymaking venture. ACT UP S.F. gives away more of the chemical than it sells and profits from sales are negligible: Pasquarelli still works at Kinko's, and Bellefountaine weighs marijuana at a buyers club twice a week.
Former ACT UP S.F. members say Pasquarelli and Bellefountaine increasingly seemed more interested in DNCB than the group's political goals. Discussions became shouting matches. Disagreements deteriorated to insults and obscenities.
"They would scream at people, they would curse at them," says former ACT UP S.F. member Laura Thomas. "They would present themselves as somehow being persecuted. It made it a really unpleasant room to sit in for a couple of hours."
Bellefountaine maintains that the members of ACT UP S.F. were simply "not supportive of new ideas or new people. They seemed suspicious."
Longtime members began to leave the group. Rebecca Hensler decided she'd had enough in the summer of 1994. "We had gotten so far from the days when we could all disagree and still put our lives and bodies on the line for each other," says Hensler, brushing tears from her eyes, "it was making me completely miserable. I had to leave."
By the end of that summer, none of the original members of ACT UP San Francisco remained.
"All the sane, rational, committed people left the group," says Thomas. "They were basically chased out, or they decided that they could do the work they wanted to on AIDS without being screamed at about DNCB by Pasquarelli and Bellefountaine."
These days, ACT UP S.F. meets each Monday night at the Epicenter Zone, a punk collective and music store on Valencia Street. This evening in March, 14 people sit on sagging sofas arranged in a rectangle at the rear of the store. The meeting begins without Dave Pasquarelli, who is home sick with a cold.