The Washington PostDemocracy Dies in Darkness

Remembering the activists who helped make HIV/AIDS research possible

An AIDS symbol displayed on the North Lawn of the White House on World AIDS Day in 2010. (Jewel Samad/AFP/Getty Images)
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The news has been good recently for people infected with HIV/AIDS and those who love them. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases and one of America’s preeminent HIV/AIDS doctors, has been appointed to head a government-sponsored program pledged to eradicate the disease by 2030. Headlines announce that HIV infection has ostensibly been eliminated in three men who underwent bone-marrow transplants. Researchers are optimistic about replicating those results through the less risky procedure of gene therapy. And until a universal cure is certain, a pill a day can now reduce HIV to a chronic illness rather than a death sentence. Science has been doing its job, and government is committed to helping. It was not always thus.

It is worth remembering the immense work that it took before progress could be made. In the first decade of the epidemic, when AIDS was invariably lethal, panic and ignorance were rife even among medical professionals. Those afflicted were met with moral judgment instead of sympathy. Politicians were unhurried about — or downright hostile to — funding research to combat HIV/AIDS. It took years of struggle by militant AIDS activists before mindless prejudice about those with the disease would cease and progress could be made toward a cure.

When AIDS first appeared in the early 1980s, activists formed organizations such as the Gay Men’s Health Project, AIDS Project Los Angeles and Shanti to do what the government, families and even churches would not: provide food and shelter and succor for people with HIV/AIDS. The community helped itself. But to address the bigotry that encouraged abuse of those with AIDS, as well as foot-dragging in the search for treatment, more militant tactics were necessary.

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By 1987, over 16,000 Americans had died of AIDS-related complications. In February, the Centers for Disease Control in Atlanta hosted a conference focused on mandatory testing for HIV/AIDS. But there was no effective treatment for the disease. What would be done to those who tested positive?

A group of gay activists, the Lavender Hill Mob, descended on Atlanta. The group was led by Marty Robinson, who had co-founded the militant Gay Liberation Front soon after the Stonewall Riots. The activists invaded the ballroom of the Marriott Marquis where a pre-conference cocktail party was being held. Some Mobsters wore makeshift concentration camp uniforms. They passed out fliers to the startled participants with the message, “What does CDC stand for? Center for Detention Camps!” During the three days of conference meetings, the Mobsters popped up everywhere with leaflets and noisy chants: “Test drugs, not people!” “Drugs into bodies now!” During a plenary session, they blocked the dais with a giant “LAVENDER HILL MOB” banner. “Why are you talking about testing instead of saving people’s lives?” they screamed at the packed auditorium.

More staid activists, such as representatives from the Lambda Legal Defense and Education Fund, were also at the conference to protest mandatory testing — but it was the disruptive drama of the Lavender Hill Mob that grabbed the lion’s share of coverage in the New York Times, on CNN Headline News and on “Crossfire,” a widely viewed television talk show. The Mobsters succeeded in bringing the issue of the CDC’s wrongheadedness about the AIDS crisis into American living rooms. They also helped convince the conference participants: The mandatory-testing proposal went down in resounding defeat.

ACT UP, a militant AIDS organization, was started in New York in the wake of the Lavender Hill Mob’s success, and it quickly spread all over the country. Modeled on the tactics of the Lavender Hill Mob, ACT UP’s approach was bold and headline-grabbing — and effective. It challenged ignorance and pressured the government to put significant funding into the development of HIV/AIDS drugs.

In 1989, Cardinal John O’Connor of New York led a meeting of bishops at which the ecclesiastics agreed to make a public declaration reiterating that the use of condoms was against Catholic teaching — regardless of what the New York Health Commission said about preventing AIDS. O’Connor declared, “Good morality is good medicine.”

In quick response, hundreds of ACT UP members, dressed in their Sunday best, went to a service at St. Patrick’s Cathedral. They handed out “church programs” to the faithful that were fliers explaining why they would be disrupting the service. Many of them then lay down on the marble floor of the cathedral’s main aisle and staged a die-in. Others chained themselves to a pew or yelled, “O’Connor, you’re killing us!” or, to the congregation, “We’re fighting for your lives, too!” Outside the cathedral, some 5,000 AIDS activists gathered, many of them carrying signs: “Public Health Menace: Cardinal O’Connor,” “Condoms Save Lives,” “Papal Bull.” The protest made headlines around the world, and ACT UP chapters were started in Moscow; Cape Town, South Africa; and cities all over Europe.

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Sen. Jesse Helms (R-N.C.) had been seeking to block AIDS relief bills since the 1980s, telling fellow senators that the government had no business spending money on “a disease spread through immorality.” In 1991, ACT UP members found an advertising company that produced giant inflatables. They ordered a 35-foot yellow-beige condom made from parachute material. On it, they printed in bold letters “A CONDOM TO STOP UNSAFE POLITICS: HELMS IS DEADLIER THAN A VIRUS” — and in the early hours of a morning they draped it over Helms’s two-story home in Arlington, Va. The Associated Press understood the message: “Helms Unprotected from AIDS Protestors,” headlines blared.

But the most important of the in-your-face AIDS protests — “zaps,” the ACT UP militants called them — was the one at the National Institutes of Health around the time that Helms was trying to block a $600 million AIDS relief bill. ACT UP members from all over the country descended on the NIH campus in Bethesda, Md., setting off smoke bombs and yelling that NIH policies were killing them. Fauci (the head of the present drive to end AIDS) invited several ACT UP leaders inside and listened to them. What he learned brought about the Accelerated Approval process that helped get “drugs into bodies now,” as the ACT UP slogan demanded. “Rude, Rash, Effective: ACT UP shifts AIDS Policies” newspaper headlines declared. Such was the beginning of real progress toward defeating AIDS.

This year marks the 50th anniversary of the Stonewall Riots, a militant protest against police harassment at a gay bar in New York’s Greenwich Village that became, as wits called it, “the hairpin drop heard round the world.” Though there had been a small movement for gay rights in America since 1950, it took the drama of Stonewall and the militant organizing that followed to capture headlines calling attention to the mistreatment of gay people — and to trigger the beginning of real progress toward reform. Lavender Hill Mob and ACT UP had learned well from that recent history the effectiveness of bold action in response to dire circumstance.