ACT UP Golden Gate, one of the leading ACT UP chapters in the nation, has changed its name to Survive AIDS, to avoid public confusion with an unrelated group using the name ACT UP San Francisco. The decision followed more than two years of discussion. The new organization will continue "to identify and help solve problems for people with HIV and AIDS in order that they might survive long-term" (from the group’s statement to the community explaining the name change).
Jeff Getty of ACT UP Golden Gate told San Francisco Frontiers (April 6, 2000), "The name ACT UP has been destroyed in this town…we will continue along the old lines…but we will have one new focus: a national teleconferencing system with an 800 number so that cities with only one sharp activist can connect to the rest of us."
ACT UP San Francisco–which tells people not to be tested or treated for HIV infection, and which opposes AIDS clinical trials ("AIDS research isn’t medicine — it’s murder")–has disrupted treatment meetings in San Francisco for years; activists and medical professionals alike have been concerned for their personal safety. (For a report on this week’s disruption, see "More Violence from ACT UP/SF: Woman Injured at HIV Treatment Forum," in the Bay Area Reporter, April 20, 2000, page 1.)
Elsewhere, ACT UP San Francisco’s best known action was to invade a medical meeting at the World AIDS Conference in Vancouver, Canada, in July 1996, and throw red liquid on the speakers, in front of an audience of more than a thousand physicians and researchers. ACT UP San Francisco is also expected to have a high profile at the World AIDS Conference in Durban, South Africa, July 9-14, 2000; it has already won sympathy in South Africa when the conference organizers canceled its booth A1A (apparently it had reserved one of the most prominent exhibit booths in the conference facility, although some legitimate activist organizations were turned down for booths), after learning about the nature of the organization.
This writer has worked with ACT UP Golden Gate for years, and has been amazed at what the organization has been able to accomplish. Human growth hormone, for example, was stuck in unworkable clinical trials when Bill Thorne (who died last year of liver cancer) started an ongoing ACT UP Golden Gate project which accelerated the research, approval, and availability of this treatment for AIDS-related wasting by as much as several years, saving the lives of many people who would otherwise have died from the condition.
The ACT UP Golden Gate / Survive AIDS letter to the community lists other accomplishments:
- Negotiated price reductions from pharmaceutical companies for a number of AIDS-related drugs.
- Forced pharmaceutical companies to provide new AIDS drugs on a compassionate basis to people who did not qualify for drug trials but had run out of other treatment options.
- Participated in local and national community advisory boards to ensure drug trials were conducted in ways that benefited participants, and were not wasteful.
- Worked with other organizations in San Francisco to force AIDS non-profits to be more accountable to the citizens of San Francisco.
- Forced Kaiser Permanente to accept HIV disease as a specialty, which requires unique diagnostic viral load tests, and initiated an HIV patient-advisory board.
- Worked with city housing groups to halt owner move-in evictions of the elderly, disabled, and people with AIDS.
- Worked with other AIDS organizations to get the government and pharmaceutical companies to study the side effects of current AIDS treatments.
- Obtained one million dollars in state funds for the University of California San Francisco to study organ transplantation in HIV+ people. Prior to this, the surgeons at UCSF routinely denied life-saving transplant procedures to anyone who was HIV+.
- Wrote a regular column for the Bay Area Reporter to keep the community informed about current issues regarding HIV/AIDS.
But ACT UP/Golden Gate has not always succeeded in informing the public about what it has accomplished. (One example: When we checked our email to find the ACT UP Golden Gate letter to the community which contains the accomplishments quoted above, the only copy we found had been distributed by ACT UP San Francisco, under the introductory message, "After ten years of pushing poisons onto gay men, ACT UP Golden Gate is DEAD! Long live ACT UP SF! AIDS is over!")
Part of the continuing public confusion of the organizations may stem from the fact that ACT UP San Francisco has a budget about 20 times larger than that of ACT UP Golden Gate–about $1,666,000 in its last fiscal year, mostly from sale of medical marijuana, vs. $83,000 for ACT UP Golden Gate, according to a widely-quoted article in the Bay Area Reporter, a San Francisco gay newspaper, on March 23. For example, on the night before the first Survive AIDS meeting, dozens of 4 1/4 by 5 1/2 inch flyers reading "www.surviveaids.com" were pasted onto news racks, advertising signs, windows, light poles, and parking meters in San Francisco’s Castro district; shortly after midnight, this writer counted 70 of them pasted in a single block. There were six different headlines (THE AIDS LIE IS ANTI-GAY!, BAN THE HIV TEST!, AIDS RESEARCH KILLS QUEERS!, HIV IS HOMOPHOBIA!, TUNE OUT TERROR!, and FLUSH YOUR AIDS DRUGS!); each flyers contained only a headline and the Web address. Survive AIDS had registered www surviveaids.org–but others had registered wwwsurviveaidscom and wwwsurviveaidsnet, which pointed to a page on the ACT UP San Francisco Web site. Survive AIDS did not have the resources to routinely register all three, while ACT UP San Francisco could afford to register and publicize names other than its own.
This writer did not support the name change, fearing worldwide consequences if the name ACT UP is abandoned, since it is the best-known AIDS activist name in the world; it could then be used more freely to deliver a very different message. But in San Francisco the change had to be made, because the people doing the work want to help themselves and others survive the epidemic–not to keep fighting public confusion when ACT UP San Francisco is intensely unpopular, and even AIDS professionals still sometimes confused the two groups.