In early March 1987, Larry Kramer, a co-founder of the Gay Men’s Health Crisis in New York City, stood up at a meeting at the Lesbian and Gay Community Services Center in Greenwich Village. By that time, the number of HIV-positive diagnoses had topped 40,000 in the United States, and the disease had killed almost 60,000 people worldwide.

“OK, I want this half of the room to stand up,’’ Kramer later recalled saying. “I looked around at those kids and I said to the people standing up, ‘You are all going to be dead in five years. Every one of you fuckers.’ I was livid. I said, ‘How about doing something about it? Why just line up for the cattle cars?’”

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Kramer’s call to action would inspire a unique meeting of skills in response to the epidemic, what members of ACT UP, formed just two days after Kramer’s speech, termed its “inside-outside strategy.” 

ACT UP is most famous for its media-savvy protest actions, which called out the Reagan administration for ignoring the disease, and raised public awareness of the crisis with its ubiquitous “Silence = Death” campaign.

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Less well-known is the “inside” part of its strategy, which helped reorder the drug approval process and centered patients’ rights in the process.  

The genesis of the idea that “People With AIDS” — a term adopted by the community to combat the stigma associated with the monikers “victims” and “patients” — should have a voice in their treatment came with a meeting of activists from San Francisco and New York in 1983.

The result was the Denver Principles.

Two years into the epidemic, two distinct camps had emerged in the cities most impacted by the disease about how to frame it.

In San Francisco, a nurse and activist named Bobbi Campbell spoke for many, describing themselves as cancer patients, arguing AIDS wasn’t their fault, and asking for tolerance. In New York, musician and advocate Michael Callen advanced the theory that AIDS was the result of ecological conditions favorable to pathogens, and that “promiscuity” among gay men was at least partly to blame.

Both argued, hopefully, that AIDS was not a death sentence, and that those with the disease should neither be scapegoated nor mourned. It was an effort to avoid another condition associated with terminal illness: “social death,” the concept that those in the process of dying are “already dead”.

The camps came together in June 1983, at the Second National AIDS Forum in Denver, Colorado.

Between conference workshops, Campbell and Callen and others from the two cities caucused on their own for hours to share their experiences and goals. They came up with a document that put the rights of people with AIDS first.   

Central to those Denver Principles was claiming agency in their care: “Be involved at every level of decision-making”; “Be included in all AIDS forums with equal credibility as other participants”; “Share their own experiences and knowledge”; “Choose their own agenda”; “Obtain full explanations of all medical procedures and risks”; and “Choose or refuse their treatment modalities.”

By centering their rights in treatment, and equating “their own experiences and knowledge” to the experts’, the authors both redefined the doctor/patient relationship in the AIDS era, and shut down the specter of “social death”: A person with AIDS respected for their knowledge and active in their own care is not “already dead,” they said.

The Denver Principles became foundational for the work of ACT UP and its “inside-outside strategy.” 

The group, formed in the aftermath of Kramer’s call to action in 1987, took a parallel approach to their work, echoing one of their most significant contributions to patients’ rights: “parallel track” drug testing at the FDA.

While ACT UP was organized with a diffuse, bottom-up structure (a “radical democracy” in the words of one member) there were two threads that ran parallel toward achieving its goals: protests to garner attention, and the knowledge to realize those goals.

“When ACT UP did civil disobedience, it’s because we had a concrete demand and we knew who could help us get it,” said Sarah Schulman, an ACT UP member and author of Let the Record Show: A Political History of ACT UP New York, 1987-1993. “And so we would target them.”

That was the case at ACT UP’s “Seize Control of the FDA” protest at the agency’s headquarters in Maryland in October 1988. Roughly 1,500 activists blocked entrances and staged a “die-in” at the building, demanding faster access to AIDS drugs — 176 protesters were arrested.

Within days, officials agreed to meet.

That’s when the “inside” track was activated. Members of ACT UP’s “Science Club,” by now well-versed not only in AIDS’ etiology but the bureaucracy that made the FDA and National Institutes of Health (NIH) run, started talking with officials at the agencies.  

Nine months later, the National Institute of Health’s Dr. Anthony Fauci formally proposed “parallel track” testing for experimental AIDS drugs, realizing the “Drugs into bodies” mantra that ACT UP and people with AIDS had been advocating for.

More successes followed: ACT UP pressured the CDC to update the AIDS definition to include symptoms affecting women, opening up access to trials. They protested exorbitant drug prices, forcing the pharmaceutical company Burroughs Wellcome to lower the cost of the foundational antiretroviral medication AZT. ACT UP demanded that insurance companies and Medicaid cover experimental treatments for people with AIDS, and piloted early syringe exchanges to reduce HIV infections amongst intravenous drug users. ACT UP also championed community-based health projects to address various aspects of the disease.

In sum, people with AIDS shifted healthcare from passive treatment to active advocacy, a leap forward for patients’ rights that’s still with us.

The adoption of “parallel testing” alone — augmenting the prevailing practice of testing drugs on a small number of people over a long period of time with testing a huge sample of people over a short period of time — was a landmark change that significantly sped up drug trials.

The change yielded a second antiretroviral drug to treat HIV within a year, along with hope.

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