Dealing with It Alone

The AIDS epidemic only made the discrimination the LGBTQ+ community faced more apparent. It provided people with yet another reason to look down on anyone who deviated from the status quo, and, at this time, homosexuals fit the bill perfectly. Although the government preferred to keep quiet about AIDS, private citizens did not. The Christian ministers who were part of the religious right argued that the disease was “God’s punishment for homosexuality.” Some government officials did choose to speak out on the issue. Pat Buchanan, the communications director for President Reagan, referred to AIDS as “nature’s revenge on gay men.” As the epidemic grew beyond the LGBTQ+ community, however, so did the general public’s fear of contracting the disease.

Members of the gay communities in New York and San Francisco realized they needed help that the government simply refused to provide. They soon came to face a harsh, but all too true reality: the gay community would receive no aid.


On August 11, 1981, a group of men met in author Larry Kramer’s apartment in New York City. They gathered to hear Dr. Alvin Friedman-Kien speak about the “gay cancer.” After hearing more about the disease that was killing so many people they knew and cared for, the group raised $6,600 that they planned to donate to medical researchers. Just five months later, on January 4, 1982, six of the men in that original group, including Larry Kramer, met again, ready to do more. They intended to begin with raising funds for research and care, but they soon realized that people needed much more. By the end of that meeting, their mission stretched wider than anyone could have imagined, and they founded the world’s first AIDS-advocacy organization, the Gay Men’s Health Crisis (GMHC).

They started with a hotline offering what little information they had. It received a hundred calls the first day. Because the people calling needed more than just information, GMHC began to put together the Patient Services Division. That division provided social services that the city refused to offer to people with AIDS. GMHC also started a buddy program to fight social isolation and help those who were sick and had no one around to help them. These buddies would do everything from take people to the doctor to perform household tasks for the person they were assisting when they were too weak to do so. GMHC was run and operated entirely by volunteers. While the LGBTQ+ and AIDS community still had a long way to go, the creation of this organization was a flicker of light in the darkness, a sign that people were, in fact, capable of coming together in a time of crisis.

Only four months later, a group of men in San Francisco set up the Karposi’s Sarcoma Research and Education Foundation, later renamed the San Francisco AIDS Foundation, in a small office on Castro Street. According to Cleve Jones, one of its cofounders, the phone started to ring as soon as it was turned on and it has been ringing ever since. Just like GMHC, the goal of the San Francisco AIDS Foundation was to get the most up-to-date information out to the community. A step ahead of the medical community, the members of this foundation stood in the streets, telling men to practice safe sex to anyone who would listen.


By 1983, Larry Kramer’s blunt style had caused the GMHC and Kramer to part ways. Kramer’s departure from the group didn’t mean he was done being loud. He had always favored using direct action and civil disobedience tactics to get attention. Knowing that it would be harder for the government to remain silent if activists were regularly in the news, he formed the group known as AIDS Coalition to Unleash Power (ACT UP).

Playwright Larry Kramer was one of the first HIV/AIDS activists. He was a primary force behind the Gay Men’s Health Crisis and ACT UP.

The group’s first action was a march on Wall Street in New York City to demand better access to experimental AIDS medication. Many of the members of ACT UP belonged to the theater industry. As such, they understood how important it was for their dramatic style of protest to have a clear message, often one that told a narrative.

Some saw the group’s actions, like their Stop the Church protest on December 10, 1989, in Saint Patrick’s Cathedral in New York, as disrespectful. The protest was in response to the Roman Catholic Church’s prolife stance and their disdain for AIDS education and the distribution of condoms. During the protest, ACT UP members entered the church during Mass, throwing condoms and lying down in the aisles. These activists thought the church’s position against safe-sex education in schools and its view of people who partook in gay sex was equally disrespectful and deadly. While many were horrified by the protest, it proved to be effective in that it brought attention to ACT UP and changed many people’s views of the Catholic Church. The insitution had previously been seen by some as untouchable, but not anymore. On September 14, 1989, ACT UP members chained themselves to the VIP balcony of the New York Stock Exchange to protest pharmaceutical company Burroughs Wellcome setting a $10,000 yearly price tag on the lifesaving AIDS medicine AZT. Days later, the company dropped the price to $6,400.

While ACT UP can be credited with many victories, there was one that completely changed the medical world as far as AIDS was concerned: the ending of double-blind medical testing for terminal diseases. Usually, when a new drug was being tested, one patient would be given the drug and another would be given a placebo, and neither the doctor nor the patient would know who had gotten which pill. Although these kinds of studies are often the best way to go about medical testing, the quick progression of AIDS meant placebo patients in the double-blind study would die before being treated with lifesaving medicine.

ACT UP activists are seen here holding a die-in at the Food and Drug Administration to call for the end of double-blind medical trials for terminal diseases.


Harvey Milk was a politician in San Francisco and the first openly gay elected official in California. He was assassinated in 1978. Every year since his death, his good friend and fellow activist Cleve Jones organized a march in his honor. When it was time to plan the 1985 march, nearly everyone Jones knew was dead, dying, or caring for someone dying of AIDS. He learned that more than one thousand of his neighbors had died of the disease. He realized, “There was no way to adequately memorialize their death, and no place where we could gather to collectively mourn.” Jones knew that that year’s march needed to change that. He asked marchers to bring cards with the names of the loved ones they’d lost to AIDS. At the end of the march, they taped each name to the wall of the federal building. It reminded him of a patchwork quilt.


Iris Long was a retired pharmaceutical chemist from Queens, New York. In 1987, she attended an ACT UP meeting despite having no connection to the LGBTQ+ community. She just wanted to volunteer her time to help fight the epidemic ravaging the city she called home. With her background in chemistry and medical research, she was able to explain the complicated information about the types of drugs being used to treat HIV in terms everyone could understand. This clarification helped patients understand their treatment and health better. Her guidance also allowed the group to understand how to better target their demands and which protest causes were the most important and pressing. Her help raising awareness about treatment and clinical trials for HIV patients worked to save countless lives.

The sight would inspire the NAMES Project Foundation. Its goal was to create a quilt square to honor the death of every person with AIDS. Jones said he meant the quilt to be “A traditional American symbol of family and community, applied to myfamily and my community, to channel our love and grief and to break through the ignorance and prejudice that were stalling the nation’s response to AIDS.” The response to the project was huge. People from all over the country volunteered to help in its creation.

The AIDS Quilt was laid out on the National Mall on October 11, 1996. It stretched from the Washington Monument to the US Capitol.

On October 11, 1987, the quilt was laid out for the first time on the National Mall in Washington, DC. The names of the dead covered more space than that of a football field. During the National March on Washington for Lesbian and Gay Rights, millions of people viewed the quilt. There were immediate requests from cities that had been hit particularly hard by the AIDS epidemic asking for NAMES to bring it to them, initiating what became a four-month tour of the quilt. In 1989, the world’s largest community art project was nominated for a Nobel Peace Prize. The quilt project carries on in its quest to raise awareness about AIDS and AIDS prevention as it continues to tour. Unfortunately, the quilt continues to grow as more people die of the disease.

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