The Washington Blade - March 31, 2000
Peter Freiberg

The name change comes a month after ACT UP/ San Francisco sent packets of what it calls "dissident information" to 200 ambassadors of United Nations members in New York, arguing that AIDS does not exist, that HIV does not cause illness, and that AIDS treatment drugs are uniformly dangerous.

Survive AIDS, in a March 21 statement, noted that ACT UP/San Francisco holds "a dissident belief that AIDS does not exist" and asserts that it is the use of anti-HIV medications that makes people get sick and die.

"Those of us who are taking these drugs," said Survive AIDS in its statement, "can accept that the drugs may not work for everyone, that we often experience side effects, and that the long-term consequences of taking the drugs are unknown."

"But the reality," said Survive AIDS, "is that many of us would have died a long time ago without anti-HIV therapy and ... medications. HIV would eventually win the battle."

Members of Survive AIDS said they intend to continue along the same lines as ACT UP/Golden Gate, seeking out "improved and less toxic HIV treatments, fighting for better access to health care, standing up for PWAs ... [and] monitoring the AIDS industry to be sure federal dollars are being wisely spent."

The name change, which was approved last month by ACT UP/Golden Gate's members and took effect last week, drew expressions of regret from members of ACT UP/New York, the first of the AIDS activist groups whose formal name is AIDS Coalition to Unleash Power.

"It's sad to see them being forced to do that," said longtime ACT UP/New York member Mark Milano. "I think everyone has deep regrets that that had to happen."

Jeff Getty, a longtime AIDS activist and member of Survive AIDS, said the major problem was that no one bothered to copyright the name "ACT UP" when the New York chapter was formed in 1987.

"They wanted anyone to be able to open an ACT UP chapter who wanted to," Getty says.

The former "ACT UP/Golden Gate" was formed in 1990 when some members split from the original ACT UP/San Francisco to concentrate on AIDS treatment issues. ACT UP/San Francisco focused on public policy and political issues. The two groups, according to Getty, worked together until about 1994, when current leaders of ACT UP/San Francisco took control.

While ACT UP chapters elsewhere are still doing good work, says Getty, in the San Francisco Bay area "they've totally discredited the name so we can't use it any more."

"We just find ourselves trying to explain all the time who we are not," he said.

Eric Sawyer, an activist with ACT UP/New York, says the New York group "totally disavows any association with the group that calls itself ACT UP/San Francisco."

"We do not consider [ACT UP/San Francisco] a legitimate chapter of ACT UP," Sawyer says. "The only impact they have had is extremely negative."

There is no formal coalition of ACT UP chapters, Sawyer says, but rather individual chapters that often coordinate actions. The number of chapters -- and their memberships -- have dropped sharply since the height of AIDS activism in the late 1980s and early 1990s. Besides New York, Sawyer says, ACT UP chapters exist in Philadelphia, Boston, Washington, D.C., and Paris, among other cities. Despite the criticism, ACT UP/San Francisco says it is thriving.

Michael Bellefountaine, one of ACT UP/San Francisco's 11-member "collective," says, "We have a right to use the [ACT UP] name and to operate how we choose to."

The chapter runs a dispensary for marijuana, selling the drug to people with AIDS -- and others -- who use the drug to relieve symptoms they have from disease or medications they are taking. The dispensary was opened after California voters approved a proposition allowing people to use, grow, or provide marijuana for medicinal purposes.

From a storefront on Market Street, Bellefountaine says, the sale of marijuana brings in between $100,000 and $120,000 a month, or between $1.2 million and $1.4 million a year.

The sales, Bellefountaine says, enable the chapter to pay its rent, employ collective members at $15 an hour, meet other costs, and fund its political activities -- although he adds that, "if we were to stop selling pot tomorrow, it would not be the end of ACT UP/San Francisco."

According to Bellefountaine, a new ACT UP chapter in West Hollywood and a reconstituted chapter in Atlanta hold similar views to ACT UP/San Francisco. Getty of Survive AIDS says that, while the memberships of these dissident groups are tiny, their network "is growing, and it's frightening"; he calls them an "AIDS denialist cult."

Among ACT UP/San Francisco's activities was a demonstration last July to demand an end to testing and developing an AIDS vaccine. According to the group's press release, they ransacked offices of the AIDS Research Consortium of Atlanta by, among other things, writing "AIDS is Over!" and "HIV is a lie" on the walls. Another demonstration last summer was in Decatur, Ga., against primate research, which ACT UP/San Francisco opposes as part of its opposition to all animal research for AIDS or other purposes.

Last year, San Francisco Health Director Dr. Mitchell Katz accused ACT UP/San Francisco of forging a letter in which he purportedly said that AIDS and sexually transmitted diseases were no longer threats in the city. ACT UP/San Francisco members denied writing the letter but agreed with its views.

In February, chapter members, holding signs reading "Stop Funding AIDS Terror," disrupted a U.S. Senate committee hearing in San Francisco on the need for increased federal AIDS funding.

"It's not possible to have a discussion with them," says Thomas Coates, an openly Gay professor of medicine and director of the AIDS Research Institute at the University of California. "They yell, they scream, they disrupt, and they force themselves to be ejected from whatever forum they participate in."

"It's hard for an AIDS organization to have any kind of open meeting at all, without having security people," says Jeff Sheehy, a prominent Gay activist in San Francisco.

Critics charge that ACT UP/San Francisco has crossed the line into violence, as when chapter members dumped cat litter onto an official of a local AIDS organization or trashed San Francisco Republican Party offices. Bellefountaine says, "We're fighting AIDS in San Francisco."

"Anybody from other parts of the country telling us how to behave is irrelevant, he says. " ... Queers live in a violent society." As for vandalism, he adds, "We don't look at property damage as violent."

Sheehy says flatly, "People hate ACT UP/San Francisco." He says that, at the marijuana dispensary, ACT UP/San Francisco members have advised people with HIV -- including him -- not to take their medications.

"They took away my [dispensary] card," Sheehy says, "when I was quoted in a local paper saying that, by telling people not to take their medications, they were murderers."

In contrast, Sheehy notes, the group now known as Survive AIDS has developed an "enormous amount of influence and credibility with policymakers, activists, patients and consumers." The group has done "cutting-edge initiatives," he says, such as successfully pressing for organ transplants for people with HIV who need them.

Many activists and scientists are concerned that views such as those espoused by ACT UP/San Francisco and articulated by a few other groups, scientists, and academics are starting to find some acceptance in less developed countries. Although there is discussion among mainstream researchers, as an article in the April issue of Poz magazine notes, about possible co-factors that may play a role in causing individuals to develop AIDS, there is overwhelming acceptance by scientists and activists that HIV is the key player in AIDS.

In some of the less developed countries of the world, the views promoted by ACT UP/San Francisco are more readily accepted, in part because of widespread suspicion of the West and a reluctance to confront the human and financial cost of the AIDS epidemic.

On March 19, the New York Times reported an outcry in South Africa over President Thabo Mbeki's decision to seek advice from two Americans, a biochemist and an African history professor, who contend HIV does not cause AIDS. The most prominent advocate of this view is Peter Duesberg, another biochemist at the University of California at Berkeley.

The Times quoted Dr. Awa Coll-Seck, director of the United Nations' Department of AIDS policy in Geneva, as expressing concern about the effect of President Mbeki's action.

"People will reassure themselves, perhaps, that they can continue risky behavior because HIV is not the real cause of AIDS," Coll-Seck said. "It's becoming a real issue."

ACT UP/San Francisco says it intends to "share the truth with a global audience and ... directly challenge those promoting the medical mistake called AIDS" by attending the International AIDS Conference next July in Durban, South Africa.

Ron MacInnis, director of the global AIDS program at the Global Health Council, which includes 200 groups working on international health issues, told the Blade that it is "unfortunate that time and energy are being locked up in this debate" when the desperate need for HIV prevention and treatment in South Africa and elsewhere was demonstrated years ago.
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