"If this article doesn't scare the [beep] out of you, "we're in real trouble. "If this article doesn't rouse you to anger, fury, rage, "and action, gay men may have no future on this earth. "Our continued existence depends on just how angry you can get." That's how writer Larry Kramer started his essay, "1,112 and Counting", a landmark text that helped ignite the movement to end the AIDS epidemic. And that number in the title? That was the number of people living with serious cases of AIDS in the United States at the time. It was March, 1983, and Kramer was panicked, but he was also pissed. Nearly a thousand people had already died from the disease, many of them gay men, and Kramer believed that bureaucratic negligence was slowing the search for a cure. In his essay, Kramer called out pretty much everyone with any connection to the American healthcare system for letting the AIDS crisis turn into an epidemic. And his list was specific by the way. It included officials at the Centers for Disease Control and Prevention, officials at the Food and Drug Administration, researchers at the National Institutes of Health, doctors at the Sloan Kettering Cancer Center, all of the insurance companies, and he even named checked local policymakers too. Kramer's public letter was an early example of the kind of resistance that AIDS activists would take in the late '80s and early '90s and would prove to be successful. It was a form of resistance that they'd later call "inside-outside strategy." It started with researching what policies needed to be improved inside walled off government agencies and drug companies, and then moved to the streets, finding creative ways to build momentum for their movement outside of bureaucracy. Their methods of resistance didn't just benefit people living with HIV and AIDS, it ended up changing the way the government researches important new drugs and how people access certain treatments even today. I'm Felecia For the Win, and this is "Roots of Resistance."

(Describer) Words appear: Roots of Resistance. Hosted by Felicia for the Win.

[gentle upbeat music]

In the early 1980s, movie lovers were just getting to know Indiana Jones. Everyone seemed to be obsessed with aerobics, and HIV and AIDS were still shrouded in mystery. In fact, while the AIDS disease was given its name in 1982, researchers had yet to uncover the actual virus behind it. In those early days, information about the virus and the fatal illnesses it caused was still evolving. But after a group of cases among gay men in Los Angeles suggested that the disease could be sexually transmitted, a dangerous and false narrative took hold. Misinformation spread that the mysterious new illness was a "gay disease," even though there were cases of the same infections in straight people. And people with a lot of visibility like nationally recognized newscasters and politicians repeated that misconception. And yet, for the first six years of the crisis, Ronald Reagan, who was the president at the time, didn't speak publicly about it at all.

(speaker) And it so it was clear that there was an anti-gay backlash already going on before the advent of AIDS in 1981. As young gay people, we were all very aware of the news stories about it, but there was a huge mystery about: What was AIDS? How was it transmitted? Was it a virus? Were there sexual practices or other practices that could protect you or protect others? By the time I moved to New York in '86, it really was clear that federal government was not committed to making a response, and even whatever response they were doing wasn't meeting our needs and was creating a research infrastructure that wasn't accessible to people that were living with AIDS.

(Felecia) By 1987, the U.S. death toll from AIDS had risen to 40,000, and worldwide, HIV infections were in the millions. In New York City, where the number of cases and deaths were climbing, large groups of people, people who were grieving their friends and concerned for their own health, started assembling at the Lesbian and Gay Community Services Center, hoping to find information that could lead to better treatment and a cure. On March 10th, 1987, Larry Kramer was invited to the center to speak. During his talk, he asked one side of the audience to stand up. Then he turned to them and said, "At the rate we are going, you could be dead in less than five years." Well, that made an impact. Two days later, about 300 people came back to the center. Many of them were members from smaller disparate activist projects and together they formed the AIDS Coalition to Unleash Power or ACT UP for Short. ACT UP brought together a diverse group of activists, people with lived and organizing experience in not only the queer community, but also in the feminist, racial justice, and criminal justice reform movements as well. Some people joined who had no history of organizing at all. And it was this intersectional understanding of who was affected by HIV/ AIDS, and how that brought tremendous depth to the way that the group worked.

(Describer) Katrina Haslip.

(Katrina) I represent the excluded and underrepresented groups of women, minorities, and HIV-positive individuals, and also prisoners of which I am a member of all the above. It is important to us that we educate ourselves, that we learn what treatments are available and how effective they are and that we'd be given unlimited access to them.

(protestors) Shame, shame, shame, shame!

(Felecia) ACT UP's inside-outside strategy paired in-your-face, attention-grabbing protests with deeply researched policy recommendations. ACT UP members delivered their findings directly to employees within the government agencies and then held them accountable through demonstrations outside the building gates. Instead of marches on Washington DC, ACT UP favored less conventional, but still high-profile locations for protests and demonstrations, places that had specific relevance to their message. In 1987, ACT UP descended on Wall Street to protest the obscene price tag on AZT, which was the only medication approved to treat AIDS at the time. In the '80s, AZT cost $10,000 a year. Accounting for inflation, that'd be about $27,500 a year today. Then they disrupted mass at St. Patrick's Cathedral to protest its opposition to lifesaving safe-sex education and condoms. They also waged a multi-year campaign in the early '90s urging the CDC to expand the definition of AIDS because it didn't include symptoms and illnesses experienced by women. Without an official diagnosis, women with AIDS were unable to receive the same government benefits and care that men with AIDS could. When ACT UP requested to meet with the FDA, they were initially rebuffed and that's when they decided to take their message outside.

(protestors) Seize control of the FDA!

(Describer) Protesters hoist signs.

Fifty-two have died today.

(Felecia) On October 11th, 1988, ACT UP staged a massive demonstration outside the FDA's headquarters in Rockville, Maryland. The protest brought together more than a thousand activists from across the country, all fired up to disrupt the FDA's workday and make their demands known. In order to put a stop to the AIDS crisis, they wanted the FDA to get more drugs into trials, to speed up their unnecessarily slow approval process, to stop the unethical use of placebos, and to broaden access to treatments by making HIV drugs more affordable and trials more inclusive. My name is Vito Russo, and I have AIDS, and I'm here today because I don't want to die. I know that there are drugs out there that can save my life. We are simply asking the FDA to do it quicker. -(protestor) What do we want? -Fight for AIDS.

(Describer) Mark Harrington.

-When do we want it? -Now.

(Mark) You know, we got up before dawn. We took the subway to the FDA headquarters, which is this massive bureaucratic looking office building in suburban DC. And somebody puts some stacked up stickers on the walls of the subway, and became the very first person to be arrested. Then later in the day, over 100 people were arrested either trying to get into the FDA building or doing something else that pissed off the Montgomery County Police that were all decked out in gloves. They were informed wrongly that you could get HIV by handling somebody with your hands. ACT UP made the AIDS crisis national news for the very first time. Their demonstration was on the front page of papers in Boston, Baltimore, Dallas, Houston, Orlando, and Miami. And the FDA took ACT UP's call the very next day. And when other government offices wouldn't meet with them, they took it outside an organized protests, at the CDC, at the New York Stock Exchange in 1989, and the NIH building in 1990. The thing that I want to point out is that that process doesn't work. That process of having meetings with people in government doesn't work unless we can mobilize thousands of people like we are tomorrow at the NIH. We have to break down the cult of the expert in every area of this society. The people with AIDS are the experts in this disease.

[audience applauding]

(Felecia) That's Mark Harrington, speaking before ACT UP's NIH action in 1990. It's the same with women's health. It's the same with the health problems of people of color and poor people in this society. Until people turn to their government and say that "You're spending our money and you're supposed to be saving our lives, and you're not," then we won't get anywhere.

[audience hooting]

(Felecia) Through the media coverage of their protests, ACT UP was able to reclaim the narrative on HIV and AIDS. Following ACT UP's demonstration in Rockville, the FDA took a hard look at ACT UP's proposal for an accelerated drug approval process, and they decided to speed up its trial timelines for AIDS treatments and therapies. The NIH succeeded in pushing through an ACT UP concept called "Parallel Track," which allowed for the early release of experimental treatments to people who were living with HIV who had no other options. ACT UP's inside-outside tactics were vital to the overall movement success, but as the organization grew, so did ideological tensions between members who worked on either side. In 1991, some members of ACT UP who favored demonstration and invisible protests began to worry that prioritizing government relationships behind the scenes would undermine their momentum. They called for the larger group to vote on placing a six month moratorium on meetings with government officials. At the same time, debate within ACT UP over a contentious drug trial had gotten particularly heated. The trial sought to determine whether giving AZT to pregnant women would prevent HIV transmission from mother to infant. But many women in ACT UP were concerned that taking AZT in this way might make the mother resistant to future treatments. The clash echoed pervasive inequalities in the American healthcare system. These ideological differences between ACT UP's members were also emotionally charged, heightened by the urgent life-or-death stakes of their movement. And many members of ACT UP did this work while facing the very real emotional battle of living with the disease themselves. This rift was the final straw in the gradual splintering of that early group, and soon after, many of ACT UP's most fervent early leaders, including Mark Harrington, parted ways with the organization. Now, ACT UP still exists today with multiple active chapters across the country, and although new HIV drugs can prevent infection, transmission, and reduce viral load to undetectable levels, there is still no cure for AIDS. So ACT UP's mission remains the same-- "United in anger and committed to direct action to end the AIDS crisis." The policies that ACT UP developed and pushed agencies to adopt have made a huge impact on healthcare in the United States, even beyond AIDS. Many of ACT UP's proposals were codified into law in 1997 and allowed the United States to have a much quicker response to the COVID 19 virus in 2020. For example, parallel track paved the way for the United States' first approved COVID-19 treatment, remdesivir, and accelerated approval helped to fast track vaccines and COVID-19 diagnostic tools like PCR and Rapid antigen tests. I mean, imagine if we were still waiting for COVID vaccines and treatments today. ACT UP's inside-outside methods are a greatest hits compilation of time-tested resistance ideas. Teach-ins from the movement against the Vietnam War, community education and health programs from the Black Panther party's campaign to address sickle-cell anemia, and the congressional hearing on the negative side effects of the birth control pill by the Women's Health Movement in 1970. And all of it really worked. Despite being up against government negligence, media silence, and moral stigma, all the members of ACT UP fought to have their grief and good ideas taken seriously. And it's a really good thing they did because their tenacity and strategic thinking has benefited all of us. Thanks for watching "Roots of Resistance" on PBS. I'm Felecia For the Win, and I'll catch you on the next episode.

[gentle upbeat music]

Accessibility provided by the U.S. Department of Education.

(Describer) Accessibility provided by the U.S. Department of Education.