ACT UP and the AIDS Crisis: The Deaths That Changed Medicine

The first cases of what would eventually be called AIDS were reported in the United States in June nineteen eighty-one. The patients were gay men in New York and Los Angeles. By the end of that year, hundreds had died. By nineteen eighty-three, thousands. By the time an effective treatment was approved in nineteen ninety-six, approximately one hundred thousand New Yorkers had died of the disease.

For most of the nineteen eighties, the federal government under President Reagan did not hold a major policy address on AIDS. The New York City government under Mayor Koch was slow to respond. The public health infrastructure that would have been deployed instantly for a disease affecting other populations was deployed reluctantly, inadequately, and years late for a population that much of official America was comfortable letting disappear. The reasons were not complicated. The people who were dying, primarily gay men, intravenous drug users, and Haitian immigrants, were people that official America had already decided were expendable.

The AIDS Coalition to Unleash Power, known as ACT UP, was founded at the Lesbian and Gay Community Services Center in Greenwich Village in March nineteen eighty-seven. Its first action was a demonstration on Wall Street. Subsequent actions included a die-in at the Food and Drug Administration's headquarters in Maryland in nineteen eighty-eight that shut the building and accelerated the agency's drug approval timeline. A die-in on the floor of the New York Stock Exchange in nineteen eighty-nine. A massive demonstration at St. Patrick's Cathedral in December nineteen eighty-nine that interrupted the cardinal's Sunday mass.

ACT UP's pressure on the National Institutes of Health and the Food and Drug Administration permanently changed how clinical trials are designed and conducted in the United States. The patient advocacy model, the principle that people dying of a disease have a right to participate in decisions about how it is treated, is a standard feature of American medical regulation today because people with AIDS demanded it and died demanding it.

The New York City AIDS Memorial, opened in twenty sixteen in a small park at the corner of Greenwich Avenue and Twelfth Street in the West Village, is inscribed with words from Walt Whitman: 'I am large, I contain multitudes.' It faces the building that was once the HIV clinical center at Saint Vincent's Hospital, which closed in twenty ten. The hospital is condominiums now.