The Washington Blade; Friday, March 14, 1997
Peter Freiberg

That traffic-stopping action, which included demands for faster government approval -- and lower prices -- for AIDS drugs, launched a new organization that would eventually exercise remarkable influence on AIDS policy in this country and beyond -- the AIDS Coalition to Unleash Power, better known by its acronym ACT UP.

On March 24, 10 years to the day from the 1987 protest, ACT UP members from New York and elsewhere will again mass near Wall Street to commemorate the 10th anniversary with another demonstration, this one called "Crash the Market" -- a protest designed to remind the nation "that the AIDS crisis is far from over."

As in 1987, ACT UP will protest "profiteering" by drug companies and an "inadequate" response by the federal government to guaranteeing AIDS treatment access to all. And, as in 1987, there may well be civil disobedience resulting in arrests.

But despite the similarity in current demands and those of 10 years ago, much has changed since then -- not the least of which is ACT UP.

In 1987, ACT UP was at the beginning of what was to be exponential growth over several years, as several dozen chapters formed in large and small cities at a dizzying rate. Today, even current ACT UP activists acknowledge that the direct-action group is a shell of its former self: Active chapters total little more than a dozen, membership is tiny, and media visibility is way down.

"I've stopped going to meetings," says longtime ACT UP/New York member William Dobbs,"because there are more ghosts in the room than living people." In Los Angeles, ACT UPer Peter Cashman says the chapter is still active, but "membership is way small compared with where it used to be. When we go do demonstrations, we get about 25 people."

ACT UP's condition raises questions about whether direct-action AIDS activism has a future, and if so, what kind. ACT UP itself has helped organize a conference at Hunter College in New York just prior to the March 24 protest to deal with those issues [see box].

"The need is as great today," says Sean Strub, publisher of POZ, a magazine about living with AIDS that has devoted its March issue to ACT UP, "but the challenge is much more complex .... [T]he issues are not as black and white as they were ten years ago."

But AIDS activists, historians, and some government officials say the group's decline does not negate the huge impact it has had on public policies on AIDS (and other diseases), on people with AIDS, and on the movement for Gay civil rights.

"ACT UP, to me, is not just an organization," says Elinor Burkett, author of a book about the response to the epidemic, The Gravest Show on Earth. "I'm also talking about the whole social phenomenon they represented. I don't think there's any doubt that ACT UP took control over both the government's public health care response to AIDS and its scientific response to AIDS, for better and worse."

Burkett ticks off a few of the changes ACT UP helped instigate -- the accelerated drug approval process of the federal Food and Drug Administration (FDA), funding to house people with AIDS, and patient lobbying on research and treatment issues.

"Obviously, there were other people working on these things," says Burkett, "like AIDS Action Council and Project Inform. ...But there needed to be a force on the streets that would give those lobbying efforts both muscle and edge, and ACT UP provided it."

Dr. Anthony Fauci, director of the National Institute of Allergy and Infection Diseases of the National Institutes of Health (NIH), who has often been the target of criticism from ACT UP members over the years, comments:

"As a whole, they have been a positive force ... in many aspects of HIV/AIDS. From public awareness, to rational inclusion of community people in the design and implementation of clinical trials, to funding decisions on the part of Congress, they've played a major role, they've been a powerful force."

New York's Strub, a longtime AIDS survivor, says ACT UP was instrumental in changing the perspective of people with AIDS from "victims on their death beds to people who are vital."

ACT UP's formation came after the initial years of the AIDS crisis, during which the Gay community focused on forming service organizations. By 1987, people like New Yorker Ron Goldberg wanted a more active way to affect AIDS policy. Three months after ACT UP's founding, he attended an ACT UP meeting at New York's Lesbian and Gay Community Services Center.

"I was just really taken by the energy and passion," he recalls. "Rather than finding them off-putting, I found them exciting. I said, 'I can yell, I can hand out leaflets.' It seemed suddenly there was a way for me to get involved."

Thousands of others around the country had similar experiences, forming several dozen chapters that were autonomous but cooperated on national actions like 1990's "Storm the NIH." The result was a wave of what historian John D'Emilio, outgoing director of the Policy Institute of the National Gay and Lesbian Task Force, calls "imaginatively militant activism."

Die-ins, sit-ins, kiss-ins, mass demonstrations -- all promoted by attention-grabbing posters and marked by blunt, often sardonic signs held aloft by people who often felt their lives were at stake -- brought ACT UP reams of publicity; they also helped bring AIDS to the forefront after years of silence by the Reagan Administration.

"ACT UP really served to make AIDS a public issue," says Lesbian activist Maxine Wolfe, who joined the New York group three months after its founding and has never left. "It put AIDS on the national agenda." And, she says, it "coalesced a [Gay] community that was in mourning to create the next wave of the Lesbian and Gay movement."

Historian D'Emilio agrees the organization, which had an overwhelmingly Gay membership, has had an "extraordinarily important" impact on the movement. By the time ACT UP was born, says D'Emilio, the Gay movement "had lost a kind of gritty edge" it possessed in the years immediately following the 1969 Stonewall rebellion. ACT UP, he says, restored "that gritty and harder edge of anger and militancy that social movements periodically need to keep them dynamic."

In D'Emilio's view, ACT UP -- together with the 1987 March on Washington -- ushered in several years of heightened grassroots activism and media visibility in which the Gay movement, "instead of creeping forward inch by inch ... actually took some leaps forward."

But ACT UP was not solely about street activism. Longtime New York member Ann Northrop says, "People see ACT UP strictly as a screaming-in-the-streets organization, but the fact is that none of that screaming ever happens until after we try to sit down and talk to people. The screaming-in-the-streets is the last resort."

Because of ACT UP pressure, notes Kiyoshi Kuromiya, founder of the Critical Path AIDS Project, which provides treatment information, and a longtime member of ACT UP/Philadelphia, "a group of patients and their advocates" won unprecedented "seats at the tables ... where decisions were being made."

In the years following a large 1988 demonstration at the FDA, Kuromiya says, enormous changes were implemented: Last year, a new protease inhibitor was approved in 42 days, compared to the 10 years it used to take for a new drug. Given its successes, what accounts for ACT UP's decline?

Many members died, while others simply burned out or went on to work fulltime in AIDS and other organizations. In New York, ACT UP housing activists formed Housing Works, now a multi-million dollar agency that provides housing for people with AIDS; in some cities, ACT UP members left to start needle exchange programs.

"While we may mourn the [decline] of ACT UP," says New York's Northrop, "it's still going on in these other organizations and agencies."

One example is Mary Lucey, a Lesbian with AIDS and an AIDS policy analyst for Los Angeles. Her membership in ACT UP, she said, empowered her personally and professionally.

"I went into ACT UP [in 1990]," says Lucey, "and they said, 'We're going to put all our anger ... into action.' Seven years later, I'm still alive. I actually think that ACT UP contributed to my survival far more than the medical [care]." And ACT UP, she said, gave her the education she needed to eventually do health policy analysis.

But Lucey reflects the bitterness of some current ACT UP members when she says some graduates have "forgotten where they came from. ...People started gaining entrance and sitting at those tables, but they truly forgot who they were supposed to be advocating for."

Some splits caused divisions that never really healed: ACT UP/New York's Treatment and Data Committee, upset with what activist Mark Harrington calls "a lot of infighting" and convinced of the need for a group to focus solely on research and treatment, left to form the Treatment Action Group (TAG). Today, TAG sits on many government committees dealing with research issues.

Harrington credits ACT UP with many achievements, but says, "It makes me sad that some people are holding on to strategies that are just not as effective as they used to be."

In San Francisco, a split over treatment priorities led to two chapters -- ACT UP/Golden Gate and ACT UP/San Francisco. Today, ACT UP/San Francisco is a pariah among ACT UP groups nationally because of what they call its disruptive, violent tactics.

It was probably inevitable, says D'Emilio, that a militant, all-volunteer, ultra-democratic organization would have difficulty functioning permanently at a high level. But the election of Bill Clinton as president in 1992 probably did as much to weaken ACT UP as any event, many activists believe.

"The current politics of AIDS," says Denny Lee, a former media coordinator for ACT UP/New York who now works full time for the American Civil Liberties Union, "makes it much harder for a direct-action group like ACT UP to command attention, not just with the general public but with the Gay and AIDS communities.

"Before, there were big-headed monsters out there that were easily identifiable. It was easy to motivate people to go out and do protests. It's not that easy now....The fact that you have the president talking about AIDS and holding [AIDS] summits makes it much harder to say that nothing's happening." Nevertheless, the remaining ACT UP chapters, which confer every two months or so on a telephone conference call, say they find no dearth of issues. Some examples of local activism:

--In Washington, D.C., Wayne Turner and Steve Michael, spokespeople for the small ACT UP chapter here, have garnered considerable publicity by spotlighting what Turner calls "the gulf between Bill Clinton's rhetoric and his actions." Turner criticizes Clinton for such stands as supporting the ban on federal funding for needle exchange programs and opposing medical use of marijuana.

--In San Francisco, ACT UP/Golden Gate activist Jeff Getty says the chapter publishes a column on treatment issues in a Gay newspaper, hosts monthly breakfasts with AIDS researchers, speaks out on state legislation, and helps individuals deal with problems.

--In Cleveland, where activist Kelly Thompson estimates there are four core members, ACT UP successfully pressured the city to release $400,000 in federal AIDS funding.

--In Los Angeles, ACT UP has mounted demonstrations against the county for failing to seek state and federal funding.

In New York, last year, ACT UP plastered the offices of Stadtlander's Pharmacy, a major source of AIDS drugs nationally, with anti-profiteering posters that won a reduction in the price of Crixivan; the chapter also helped lead a successful effort to stop the state from cutting back drug access.

Nevertheless, it sometimes takes a Herculean effort to hold a group together. In Atlanta, where activist Roger Garza says the chapter's active membership fluctuates between two and ten, he says potential members often think ACT UP is just about protesting.

"I tell them ... the idea is to know a lot about treatment and a lot about government," says Garza, to be able to lobby effectively.

Fauci of the NIH says ACT UP is not as powerful as it once was "because many of the issues are not there" anymore. But most AIDS activists agree there are still urgent issues to be addressed; the question is whether ACT UP has the capacity to affect them.

"Until a cure is in place and is available to every single person in the world," asserts Denny Lee, "I think ACT UP still has a role to play."

But D'Emilio says, "I can see there being some chapters of a few stalwarts hanging on ... on a local level, but the ACT UP moment is in the past. That's neither a bad nor a good thing. It's just a fact."

A conference on AIDS activism will be held from March 20-23 in New York. The plenary session begins at 10 a.m., Saturday, March 22, at Hunter College, East 68th Street and Lexington Avenue, in the West Building. More information can be obtained by calling (212) 966-4873 or going online at www.actupny.org

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