ACT UP’s Fearless Activism and Organizing Is a Model for Fighting for Justice

Nurses who cared for patients during the AIDS epidemic know Covid-19 is not the first disease to expose the extreme injustices of our health care system and society. Without our advocacy in coalition with patients and marginalized communities, the U.S. corporate health care industry and government will continue to fail people.

There are poignant parallels between nurses advocating for AIDS patients then and nurses advocating for Covid patients now. This LGBTQ+ Pride Month is a chance to reflect on the legacy of a trail-blazing activist organization that changed not just the conversation about the AIDS epidemic, but so much of the way we think about fighting for patients, especially those from marginalized communities. The legacy of the AIDS Coalition to Unleash Power (ACT UP) — the international, grassroots organization that fought against and changed the world’s view of AIDS — has lessons to offer nurses, trade unionists, and patient advocates everywhere.

In her book Let the Record Show, Sarah Schulman explains her view of the story of ACT UP: “This is the story of a despised group of people, with no rights, facing a terminal disease for which there were no treatments. Abandoned by their families, government, and society, they joined together and forced our country to change against its will, permanently impacting future movements of people with AIDS throughout the world and saving incalculable numbers of future lives.”

Through grassroots organizing, protest actions, public education, and scientifically informed advocacy, ACT UP was able to achieve not just notoriety as a social movement, but real, long-term wins in federal health policy. The group’s multi-faceted approach is a powerful model for fighting for health care justice. More exhaustive histories have chronicled the group’s successes, but some are worth special attention for trade unionists concerned with health justice.

ACT UP is perhaps best known for its protests. The group took action on Wall Street in New York to call out pharmaceutical companies. Together with ACT NOW, they shut down the Food and Drug Administration (FDA) headquarters in Maryland. They turned out thousands at New York’s city hall, organized a die-in outside the Center for Disease Control and Prevention (CDC) in Atlanta, and “stormed” the National Institutes of Health (NIH) with a street theatre performance to highlight how policymakers needed to tackle how the disease was impacting gay men, women, and racial minorities.

ACT UP was also central to a broad coalition of organizations tackling the AIDS crisis. Groups like the Caribbean Women’s Health Association in Crown Heights, Brooklyn, the National Black Women’s Health Project, and the Community Family Planning Council joined with ACT UP as AIDS was stigmatized not only through homophobia, but through racism (especially against people of Haitian descent) and prejudices against intravenous drug users. Working together, ACT UP and other organizations pushed back on the stigmas around HIV/AIDS while also fighting for — and winning — major policy victories that still shape medical practices today. They were able to change the conversation by making access to treatment a top political priority.

Part of that success came from picking their targets, such as Dr. Anthony Fauci, then the country’s leading AIDS scientist in his role as the head of the National Institute of Allergy and Infectious Diseases (NIAID). ACT UP shaped policy through Fauci by forcing him to listen to their advocacy work, as ACT UP founder Larry Kramer demonstrated in one 1988 op-ed headline calling Fauci “an incompetent idiot.”

In addition to policy wins like parallel track drug authorizations, ACT UP’s crowning political achievements may have been its success in defining what AIDS looked like for medical professionals. The group successfully pressured the CDC to update the range of symptoms connected to AIDS in a way that opened access to clinical trials for HIV-positive women and people assigned female at birth. According to the Lesbian Herstory Archives, the Women’s Committee of ACT UP was joined by the organization’s New York and Atlanta chapters in a protest that saw nearly 50 people arrested but tripled the size of the Atlanta chapter, eventually pressuring the CDC to update symptoms to include gynecological diseases, thereby expanding access to clinical trials for HIV-positive patients of all genders.

Through it all, AIDS patients received care from nurses and other medical professionals who faced down the fear and ignorance surrounding the disease and the LGBTQ community to provide compassionate care. Ellen Matzer and Valery Hughes, two RNs who cared for AIDS patients during the crisis, remember in their book Nurses on the Inside: Stories of the HIV/AIDS Epidemic in NYC how they would add extra calories to patients’ meals with butter or mayonnaise or make home visits, so patients didn’t feel socially isolated. And Guy Vandenberg, an RN at San Francisco General Hospital, was an instrumental part of establishing Ward 5B, the world’s first hospital ward dedicated to HIV/AIDS patients. Nurses joined the movement to demand action on the AIDS crisis through these acts of solidarity.

ACT UP’s work during the height of the AIDS crisis changed the course of disease and saved countless lives, helping pave the way for a future where HIV-positive people are not only less stigmatized, but able to advocate for themselves as they obtained new access to treatment options developed through years of medical research.

The strategic model of ACT UP — namely, the practices of researching the science, identifying policymakers to target, building coalitions across race and gender, and mobilizing massive demonstrations with loud and clear demands — is a model for all activists and organizers, especially those working in health care. They fought and continue to fight to create a world they could survive in, just as nurses fight every day for the survival of our patients. This Pride Month, NNU honors ACT UP as we continue our fight for health justice.

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National Nurses United

National Nurses United, with nearly 225,000 members nationwide, is the largest union and professional association of registered nurses in U.S. history.