~ with regret ~




A Letter to the Community

March 21, 2000

On February 29th the members of ACT UP Golden Gate voted to change its name to "Survive AIDS!". We are changing our name to put an end to the continuing confusion in the community between ACT UP Golden Gate and a group of people using the name "ACT UP San Francisco".

We feel that we owe the community that has supported us over the years an explanation for why we are changing our name. The decision to change our name was difficult and has been discussed internally for over a year. On one side were people who felt an affiliation with the name ACT UP, what it stands for, and its long list of accomplishments. Others felt we were spending too much time and energy explaining to media, physicians and the community which ACT UP chapter we were. In the end we all agreed that we wanted to spend our time and energy fighting to save and improve survival of people with AIDS/HIV.

Some background history is important to set the context for this decision. ACT UP (AIDS Coalition to Unleash Power) began in 1987 in New York City and was the foundation of the AIDS direct action movement. ACT UP was the catalyst for changing the way the public, the medical establishment, and the government responded to the AIDS crisis. Never before has there been a patients rights and advocacy group that has had such a tangible impact on society through direct action and civil disobedience.

In San Francisco, ACT UP Golden Gate split from the original ACT UP San Francisco in 1990. ACT UP Golden Gate concentrated on issues involving treatment and treatment access while ACT UP San Francisco focused on broader social issues involving public policy and politics. Over the next several years the two ACT UP chapters worked separately and together on local and national AIDS issues.

Over time ACT UP San Francisco became controlled by individuals who had a different philosophy concerning AIDS treatment. This in itself was not a problem. The problem was that any one who disagreed with them on this one issue was shouted down, intimidated and driven out of the group. Long term members, seeing the original ACT UP mission and philosophy destroyed, were forced out of the group in disgust.

This new ACT UP San Francisco chapter harassed and stalked members of the AIDS community who disagreed with them about AIDS treatment strategy, first locally, then at national AIDS events. As time went on their tactics became more violent, culminating in physical assaults, which runs counter to the ACT UP philosophy of non-violent civil disobedience.

At present, ACT UP San Francisco has aligned itself with groups that believe HIV does not cause AIDS and that it is the use of anti-HIV medications which make people get sick and die. Those of us who are taking these drugs can accept that the drugs may not work for everyone, that we often experience negative side effects, and that the long term consequences of taking the drugs are unknown. But the reality is that many of us would have died along time ago without anti-HIV therapy and prophylaxis medications. HIV would eventually win the battle.

Because of our belief about HIV and treatment, ACT UP Golden Gate continued our work to improve the survival of people with AIDS. Some of our accomplishments over the last few years include:

-- 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 our 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 require unique diagnostic viral load tests, and initiated a 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 UCSF 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 B.A.R. to keep the community informed about current issues regarding HIV/AIDS.

We continue to work on most things listed above. New projects we are working on include:

-- Helping to ensure that people who are experimenting with treatment interruption are doing so safely and that we collect as much useful data as we can.

-- Continue to monitor HIV clinical trials through various local and national community advisory groups.

-- Watchdog for new HIV therapies in the pipeline, including new targets for antiviral therapy as well as immune-based therapies and modalities.

-- Advocate for people with AIDS needing treatment education, access and advice.

-- Monitor the continuing demise of managed health care, and make sure funding is available to keep our health standards at the high level we have demanded over the years.

We will also mobilize people with AIDS to organize direct action as necessary.

Most social movements evolve over time, and the AIDS movement has been through similar, if not more dramatic transformations. And now, since the AIDS crisis is not over, we will strive to continue our important work without the confusion over the name. We invite all interested advocates to help us carry on our new mission to help people survive with HIV until there is a cure.

Contact us for further information.


March 21, 2000

Jeff Getty: (510) 551-6644
Michael Lauro: (415) 431-0859

ACT UP Golden Gate Changes Name to "Survive AIDS"

On February 29, 2000, members of San Francisco's ACT UP Golden Gate voted to change their group's name to "Survive AIDS". Members chose to change the name because of on-going public confusion about another ACT UP chapter (ACT UP San Francisco) and its dissident belief that AIDS does not exist.

"Essentially, members of our own community get the two chapters confused all the time. Recently we discovered that the other chapter was intentionall >misleading the public to believe that they represented ACT UP Golden Gate," said Matt Sharp, longtime ACT UP Golden Gate member. "The group also felt that times were changing and the group needed a new beginning. The name 'Survive AIDS' correctly indicates the group's newly written mission statement: We endeavor to identify and help solve problems for people with HIV and AIDS in order that they might survive long-term. Simply put, our goal is to keep people with HIV and AIDS alive."

Survive AIDS will continue the along the same lines as the former group: seeking out improved and less toxic HIV treatments, fighting for bette >access to healthcare, standing up for PWAs in all respects as well as monitoring the AIDS Industry to be sure that federal dollars are being wisely spent. Along with the new name the group voted to elect a new board and has changed meeting frequency to twice monthly. The organization will keep its 592 Castro Street, San Francisco address for now and exciting plans are underway to give the group a more national focus and presence. "We are looking into technology that will enable PWAs and their supporters from all over the country to attend our meetings via online hookups or teleconferencing," said Rick Solomon, Survive AIDS Treasurer.

Survive AIDS will remain all-volunteer and continue to accept no money from the pharmaceutical industry. A 501(c)3 nonprofit, Survive AIDS will raise money through private donations and grants. "The changes have been a long-time coming. AIDS has changed and so has our priorities. What ACT UP did in the past was fantastic, but now we must evolve to meet new challenges facing our community and its survival," said Jeff Getty, Survive AIDS member.


March 21, 2000

ACT UP Philadelphia issues the following statement today to clarify our complete lack of endorsement or support for recent communications from ACT UP San Francisco and other AIDS denialists:

ACT UP (AIDS Coalition to Unleash Power) Philadelphia was founded in 1988 and remains a grassroots, non-violent, all-volunteer AIDS activist group based in Philadelphia, PA, US. ACT UP Philadelphia does not accept funding from the pharmaceutical industry or government.

ACT UP Philadelphia, as well as ACT UPs in New York, Boston, Golden Gate, Paris, Los Angeles, and Washington, are not affiliated with the group calling itself ACT UP San Francisco.

As active members of the HealthGAP (Global Access Project) Coalition, ACT UP Philadelphia has worked to challenge US government trade policies that have blocked access to essential medication in countries confronted with the HIV/AIDS epidemic.

ACT UP Philadelphia recognizes the overwhelming evidence that HIV causes the syndrome known as AIDS. We recognize that certain medications, including those that prevent and treat opportunistic infections, have been life-extending for millions of people living with HIV.

ACT UP Philadelphia recognizes the side effects and toxicities of current anti-HIV therapies, and call on industry and governments to conduct targeted research to fully understand these effects and to develop safer treatments that will be effective and tolerated for many years.

Further, ACT UP Philadelphia recognizes that these treatments are not a cure. In addition to calling for continuing research toward a cure for those infected with HIV, we call for increased, ethical research on microbicides to develop an effective and safe HIV-prevention method for women and men worldwide. We support increased, ethical research on a vaccine or vaccines that will be effective against all types of HIV.

ACT UP Philadelphia condemns pharmaceutical research, marketing, and pricing standards that hold profit above all other factors and limit access to, and knowledge of, the most effective use of anti-HIV therapies.

ACT UP Philadelphia calls for full access to essential medications for all
preventable or treatable health conditions worldwide.


Bay Area Reporter
March 23, 2000

ACT UP/Golden Gate changes its name to Survive AIDS
by Terry Beswick

It's springtime in San Francisco; a time of rebirth, of new beginnings. And one local AIDS activist group is celebrating the season by shedding its well-known name, which has been "hijacked by AIDS dissidents."

Tuesday, March 28 will be the first publicized meeting of the newly minted Survive AIDS, the name recently adopted by the membership of ACT UP/Golden Gate.

The group of AIDS activists made the change in an effort to distance itself from an unaffiliated collective of medical marijuana purveyors, animal rights activists, and AIDS conspiracy theorists who took up the name ACT UP/San Francisco after the original group of that name dissolved in 1994.

"Sure I have mixed feelings about it," said Survive AIDS' Hank Wilson, a longtime AIDS activist and a co-founder of the first ACT UP in San Francisco. Wilson said that, especially for people new to the city or new to HIV/AIDS work in general, the two groups have too often been confused, and the radical ideas espoused by ACT UP/San Francisco has made his group's work to fight AIDS more difficult.

"It's been really irritating for a long time," Wilson said. "And it has undermined our effort to involve new people."

Some of the original ACT UP/San Francisco members, many of whom have since died of AIDS, had been involved in nonviolent civil disobedience since 1985, when the "ARC/AIDS Vigil" pitched a few tents outside the U.N. Plaza to protest governmental inaction against the disease.

In 1986, a group of about a dozen men and women called "Citizens for Medical Justice" also began staging direct action protests in San Francisco on issues such as mandatory testing of prisoners and prostitutes. Galvanized by the 1987 March on Washington for Lesbian and Gay Rights, this group soon changed its name to the "AIDS Action Pledge," also protesting the high price of AZT.

At about the same time, the first AIDS Coalition to Unleash Power (ACT UP) was founded in March 1987, when hundreds of frustrated people attending a meeting at the Lesbian and Gay Community Center in New York City were unleashed into action by a fiery speech from activist and playwright Larry Kramer. Raising funds from merchandise emblazoned with "Silence=Death," ACT UP/New York took off, inspiring AIDS activists nationwide by closing down the New York Stock Exchange to protest the price of AZT, then the only approved treatment for AIDS, which cost about $12,000 a year per patient, a price driven by desperate demand and by the high doses prescribed at the time.

Groups using the name ACT UP began forming spontaneously in dozens of cities and towns, from San Diego to Vermont. It wasn't long before the AIDS Action Pledge changed its name to ACT UP/San Francisco, and began selling merchandise with the slogan, "Action=Life." Attendance at its weekly meetings went from about 30 to 200 overnight.

According to activist Matthew Sharp, writing in the March 6, 1997 edition of the Bay Area Reporter, ACT UP/Golden Gate split off from the original ACT UP/San Francisco in 1990 so that they might focus exclusively on treatment and research issues.

"The remaining group that worked on AIDS social justice issues under the name ACT UP/San Francisco became defunct in 1994," wrote Sharp, "and the individuals currently using that name have no affiliation or working relationship with other ACT UP chapters."

Sharp's article, entitled, "10 Years on the Front Lines of an Epidemic; 10 Reasons to Carry On," was written on behalf of the ACT UP/Golden Gate Writers Pool, which has published a biweekly column on treatment issues in the B.A.R. since 1995.

"Larry Kramer said that he wished we wouldn't drop the name, but that he understood our reasoning," said Jeff Getty, a longtime AIDS survivor and co-founder of Survive AIDS, adding that although Kramer had consciously decided not to copyright the ACT UP name, "He now wishes he had. You can quote me on that."

"The AIDS dissidents have fairly well hijacked the name," Getty said, "and it has gotten to the point where people are confused about which is which."

Beginning on March 28, Survive AIDS will hold public meetings on the second and fourth Tuesday of each month at 7:30 p.m. at their office at 592B Castro Street.

The group, which has seen its active membership dwindle in recent years, as many of the original members have died, and - more recently - as some activists have gone off disability and returned to work, also plans to develop a more national focus to its work, while continuing to work towards the development and availability of safer and more effective therapies.

According to treasurer Rick Solomon, most of ACT UP/Golden Gate's $83,000 income in 1999 came from Under One Roof, the retailer on Castro Street that raises money for nonprofit AIDS organizations through the sale of merchandise. ACT UP/Golden Gate is staffed entirely by volunteers, and does not accept contributions from drug companies or government agencies.

"We're the only ACT UP that is a 501(c)3," added Wilson, referring to the nonprofit tax-exempt status granted to charitable and educational organizations by the Internal Revenue Service, which allows contributors to deduct donations on their federal tax returns.

By contrast, the unincorporated group using the name ACT UP/San Francisco brought in about $1,666,000 in its last fiscal year, which ended in August 1999. With a staff of about 10 contract employees, each paid $15 an hour, the group raises its funds from sales of medical marijuana from its storefront operation on Market Street.

Concerned with the group's continuing campaign to dissuade people from being tested for HIV, or being treated for the disease, Survive AIDS members said they are considering calling a boycott of ACT UP/San Francisco's marijuana club.

"They put up leaflets trying to dissuade people from taking prophylaxis and from monitoring," exclaimed Wilson. "People are still dying of PCP in this city!"

"People talk about denial," remarked Getty. "Now we have the purveyors of denial."

Like Kramer, Getty, Wilson, and others, Dr. Michelle Roland, a pre-med student when she was a co-founder of ACT UP/Golden Gate, and now a physician at San Francisco General Hospital's HIV/AIDS clinic, expressed mixed feelings about the group's name change.

"My gut reaction is two-fold: I don't see the need for the direct action that there once was," said Roland, who has been the target of one ACT UP/San Francisco protest. "But on the other hand, ACT UP nationally has a role, and if San Francisco is left with only one chapter, how could people ever even begin to understand the difference?

"But what concerns me more is what the hell is ACT UP/San Francisco doing in Africa," said Roland, referring to the group's current campaign to dominate the agenda of this July's International AIDS Conference in Durban, South Africa with charges that the U.S. and other Western countries are engaging in "First World genocide," by shipping "toxic" drugs to Africa.

"Pretty wild, huh?" commented Roland.

But Roland said that she is optimistic about the future work of Survive AIDS, whose members she considers "partners" in the work of front-line researchers and physicians like herself.

"I really appreciate the move to a more collaborative approach with existing AIDS activists at ACT UP/Golden Gate that helps keep me in line," said Roland. "It's much easier for me to have a difficult discussion, rather than be the target of a demonstration."

Clarifying ACT UPs -- from ACT UP/East Bay

We are writing in response to News stories last week by the reprehensible so-called "ACT UP" San Francisco. Legitimate AIDS activists have been facing the same pathological behavoir and threats by them for the past six years. We applaud efforts to stop such behavior which is connected with a well-funded misinformation campaign.

Your readers should know that so-called "Act Up"/San Francisco has been disavowed and disowned by the ACT UP Network comprised of chapters in Philadelphia, New York, DC, Paris, Ft. Lauderdale, Nevada East Bay, Cleveland, Boston, LA and Survive AIDS (formerly Act UP/Golden Gate). We work closely with Doctors Without Borders, the hunger group Oxfam, South Africa's Treatment Action Campaign, International Gay and Lesbian Human Rights Group, and HealthGAP (Global Action Campaign), among many others.

We all believe that HIV is, at the very least, a major co-factor causing AIDS, and that AIDS is a global catastrophe. We also believe that all HIV infected individuals should have access to treatments currently available only in industrialized countries.

So-called "Act Up"/SF has usurped and hijacked our name, damaged our credibility and hurt many HIV infected people with their messianic misinformation campaign: "HIV does not cause AIDS, AIDS is over." Their sheer hyprocrisy is demonstrated by their $1.6 million annual business (with no financial records and no payment of taxes) of selling medical marijuana to people with a "harmless" virus. If they argue that this is alternative treatment, why did they campaign to stop Federal funding to other treatments such as acupuncture, vitamins, and Chinese herbs?

Their radical pretense is undermined by the fact that conservative Republican venture capitalist, Robert Leppo, underworte the purchase of their building. While many non-profits are feeling the dot.com/economic pinch, "Act Up/SF" thrives with their lucrative pot business and Republican backers. Even more than the flawed AIDS agencies they criticize, "Act Up/SFers" are lining their pockets on people's suffering. Their sociopathic behavior towards employees of the media, health departments and other AIDS activists is unacceptable.

It's an easy route. If AIDS is over one need not campaign for needle exchange funding, condoms in schools, or better medical care. One need not challenge pharmaceutical companies' profits and patents to make treatments available to all who want them. "Act Up/SF" would deny people in Africa even the option of taking what they say are "toxic" treatments.

Through the media and people they've come in contact with personally, "Act UP/SF" has been successful in portraying political activism as loony cartoon caricature. A CIA disinforamtion campaign couldn't do better a better job of alienating or disheartening people.

Global catastrophes, such as the holocaust and AIDS, elicit different reactions from different people. Denial, guilt, misplaced anger, and sociopathic behavior are four reactions we see demonstrated by "Act UP/SF". Check out www.healthgap.org, www.globaltreatmentaccess.org or Doctors Without Borders (www.msf.org) for truly credible responses to the global AIDS epidemic.

Sincerely, ACT UP/ EAST BAY 510-841-4339


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see also:

A sensationalist piece like Farber's is just what cheap media loves. Maia Szalavitz wrote a good critique for NewsWatch: Sensationalist Hype of Celia Farber, an official member of a group of so-called AIDS denialists who believe AIDS is caused by drugs not HIV. A highly misleading and extremely biased article is stirring controversy in the AIDS community. Published in the March2000 issue of the American "lad" magazine Gear, it claims that the "cocktail" of anti-HIV medications currently in use is killing more people than it helps. The story has also been picked up - and expanded on - by this week's New York Press and on an ABC News Web site and touted by the AIDS denialists like so-called "actup" San Francisco.

ACT UP Memorandum To the United States Congress: Ryan White CARE Act Re-authorization,
so-called " ACT UP San Francisco" and the AIDS Crisis
.. June 5, 2000

AIDS Denialists undermine efforts to teach safer sexual behaviors needed for reducing the spread of HIV and discourage people from seeking useful treatment available from their doctors and serve to confuse people about important medical matters which affect their lives in the most profound way.

John S. James Talks Back to AIDS Denialists

Answering the AIDS Denialists:
CD4 (T-Cell) Counts, and Viral Load

AIDS Denialists: How to Respond

News and Views on AIDS Causality from AIDS Activists and Educators

The Relationship Between the Human Immunodeficiency Virus and the Acquired Immunodeficiency Syndrome
NIH Website

Science ~ Vol 266 - 9 December 1994
evaluating the claims of AIDS denialists