For many, the final moment of the Sixth International Conference on AIDS here provided an outrageous sight: The conference’s last speaker, Secretary of Health and Human Services Louis Sullivan, stepped to the microphone and was drowned out by protesters shouting “Shame! Shame! Shame!” and blowing whistles and air horns.
When the din ended, the debate erupted: Had the protesters, members of ACT UP, the AIDS Coalition to Unleash Power, gone too far by infringing upon Sullivan’s right to speak and be heard? Or had they simply done what was necessary to call attention to and confront an inadequate government response to a disease that is killing one U.S. citizen every 12 minutes and shows no signs of abating?
Would the disruption alienate supporters of more funding for AIDS research and care, already the target of a backlash?
Sullivan lost no time in calling the protesters “un-American,” adding in an interview with the San Francisco Examiner and Chronicle: “I will not in any way work with those individuals.”
“ACT UP couldn’t resist shouting down Sullivan, turning a faceless bureaucrat into a martyr,” said David Kirp, professor of public policy at UC Berkeley.
“It was undoubtedly an act of personal integrity and authenticity, and I am sure that it made them feel better,” Kirp added. “But sometimes, personal authenticity and political effectiveness are incompatible.”
Even within the homosexual community, grieving and angry over the epidemic’s mounting toll, there was criticism of ACT UP, which has emerged as the nation’s dominant AIDS activist organization. “The protesters were wrong in their strategy,” said Steve Morin, an openly gay aide to Rep. Nancy Pelosi (D-San Francisco). “It is a First Amendment issue, to let people speak and be heard.
“But the Administration was wrong as well,” Morin added. “The message President Bush sent to the conference was: ‘I am not going to exert any leadership to be with you during this time of national crisis. Instead, I am going to go to North Carolina to campaign for Sen. Jesse Helms (R.-N.C.) and to call him a ‘man of vision.’ ”
Bush, who declined an invitation to address the conference, appeared at a Helms fund-raiser in Charlotte on the day the conference opened. Gays and many scientists and public health experts consider Helms the U.S. Senate’s biggest obstruction toward the enactment of sound AIDS policies.
It was Helms who led the fight against the type of explicit AIDS prevention materials that public health experts believe are necessary to stem transmission of the virus; it was also Helms who authored U.S. travel restrictions on foreigners infected with the AIDS virus that led to a boycott of the conference. Bush’s embrace of Helms, said Morin, “was insensitive at best and, more likely, inflammatory.”
Adding to the tension, the Bush Administration formally announced on the eve of the conference its opposition to the federal AIDS disaster-relief bill. The bill, which sailed through both houses of Congress, would provide funds to cities whose public health structures are sagging under the weight of the epidemic.
As a result, many who are fighting their own personal battles against AIDS thought the eruption against the Administration’s highest-ranking official at the conference was right on target. “He talks, we die,” read the banner unfurled by the protesters as the noise-making began.
“To have ended this conference with everybody arm in arm, grinning, would have misrepresented the direness of the situation,” said Los Angeles writer Paul Monette, who chronicled the death of his lover, Roger Horwitz, in his book “Borrowed Time.”
“We who are in the trenches know that the nightmare is absolutely continuing,” said Monette, who is also infected with the human immunodeficiency virus. “This is not a time for good manners.”
“People are offended? Well, let them join the club,” added David Barr, a lawyer and member of ACT UP/New York. “I’m offended that there are 99 drugs that should be in clinical trials now but aren’t, that there are thousands of homeless people with AIDS in New York, that 37 million Americans live without health insurance.”
Mark Cloutier, executive director of the National Public Health Project on AIDS, said critics of ACT UP misunderstand its role: “ACT UP wouldn’t be doing its job if it didn’t stir things up. As long as they are not violent, they provide a steam valve for an incredibly volatile situation.”
Since ACT UP was founded three years ago, the group’s white-hot rage has drawn more attention than more polite forms of AIDS activism, such as the Names Project’s AIDS Memorial Quilt. ACT UP boasts 50 chapters and thousands of members and is best known in Los Angeles for its frequent attacks on the county Board of Supervisors.
“You can think of the quilt as Martin Luther King and ACT UP as Malcolm X,” said Thomas Watson, a Harvard student who is spending his senior year analyzing the divergent strains of AIDS activism.
Other less visible forms of activism include the quiet lobbying done by such organizations as Project Inform, which seeks greater access to experimental drugs, and the AIDS Action Council.
The conventional wisdom in AIDS circles is that ACT UP strengthens the hand of the moderates by making them seem reasonable in contrast. Said Cloutier: “I feel enormously energized working within the system, knowing that ACT UP is there. By what they do, they are a constant reminder that settling for compromises are not going to solve this epidemic.”
UC Berkeley Professor William Kornhauser, an authority on social protest movements, sees parallels between the rise of ACT UP and the anti-war movement of the 1960s. Like the anti-war movement, he said, ACT UP’s rise is “driven by a sense of frustration, one of anger, one of futility.”
“But there is one great difference. By the late ‘60s, the American people had turned against the Vietnam War. I think America is still rather apathetic when it comes to AIDS,” he added.
Because gays and the minority group members typically stricken with AIDS in the United States “are marginalized and invisible, I can see why ACT UP feels the need to take drastic measures--even ones that seem rude and counterproductive.”
“I don’t feel AIDS activists are going to lose support from our ‘many supporters,’ ” said Monette. “We don’t have ‘many supporters.’ What’s out there is vast, vast apathy.”
ACT UP is more than the street theater and demonstrations staged for television cameras.
The group’s tightly reasoned critiques of clinical drug trials, produced by a band of amateur scientists, helped spur the National Institutes of Health to create expanded access programs for such experimental drugs as DDI and DDC.
In fact, ACT UP’s protest in the AIDS conference’s final moments overshadowed an unusual harmony that had prevailed between scientists, public health officials and AIDS activists attending the conference.
Flanked by ACT UP member Peter Staley and National Institutes of Health AIDS research chief Dr. Anthony Fauci, speaker after speaker paid homage to the activists’ contributions in confronting the epidemic and invoked the need for a partnership among activists, scientists and public health officials.
“When it comes to clinical trials, some of them are better informed than many scientists can imagine,” Fauci said in his speech to the conference. Scientists, Fauci added, “do not have a lock on correctness. Activists bring a special insight into the disease that can actually be helpful in the way we design out scientific approaches.”
“Nothing will make us go back on (the partnership),” said Dr. Paul Volberding, chief of AIDS activities at San Francisco General Hospital and a conference co-chair.
However the debate is resolved, there seems to be no question that the kind of activism symbolized by ACT UP is not fading.
ACT UP’s best-known slogan used to be: “Silence Equals Death.” Now, it has added a new one, aimed especially at public officials hoping for a respite from criticism: “Until there’s a cure, there’s ACT UP.”