The Human Immunodeficiency Virus emerged 40 years ago this month and created an epidemic that still devastates the communities where it was found.
On June 5, 1981, the Morbidity and Mortality Weekly Report from the Center for Disease Control shared that five otherwise healthy gay cisgender men had been diagnosed with pneumocystis pneumonia—a rare pneumonia that typically shows up in people with suppressed or compromised immunity—and two had died. Then on July 3 of that year, the New York Times reported that 41 cisgender gay men had been diagnosed with a rare cancer, Kaposi’s Sarcoma. This was when it hit the fan for LGBTQ communities, Black and Latinx communities, injection drug users, and people with blood disorders who require transfusion.
This history has been largely seen through a white lens, an illness drawing attention for ravaging white men and cultural touchstones like the film Philadelphia, about a gay white man who had AIDS. But we know HIV has been affecting Black Americans in the U.S. since at least the 1960s. The whitewashing of the epidemic helps explain why today, even as HIV/AIDS rates decline across the U.S., Black and Latino Americans are eight and four times respectively more likely to be vulnerable for HIV infection than white Americans, and as of 2019 in Philadelphia, nearly 64% of newly diagnosed cases were of Black city residents, per Health Department data.
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It wasn’t until 1987 that scientists realized the first American to die of AIDS was likely a Black teenager: 15-year-old Robert Rayford from St. Louis, who died in May 1969. Medical providers, not clear on exactly what killed him, saved his blood and other specimens. On October 25, 1987, the Chicago Tribune reported that Rayford tested positive posthumously—that his preserved blood showed he had HIV infection.
Today, HIV has claimed the lives of at least 32 million people globally. In 2018 there were 346 deaths among people living with HIV in Philadelphia, 57 HIV-related, per Health Department data, showing we still have a fight on our hands against the epidemic locally.
Louie Ortiz-Fonseca, creator of the storytelling project Gran Varones, lost his uncle, aunt and father to AIDS and hopes to tell more diverse stories of the people impacted by the epidemic, launching a digital arts fellowship for “Latinx/Black-Latinx Gay, Queer, Bisexual, and Trans men and bois living with HIV aged 21-35 years old.”
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Ortiz-Fonseca also tested positive for HIV in 2005 at age 27. Born in North Philadelphia and Black Puerto Rican, Ortiz-Fonseca has worked in nonprofit spaces since he was 15 and experienced the “complicated duality” of testing positive while doing HIV work. José DeMarco, also a Black Puerto Rican from West Philly, tested HIV positive in 1991. Joining ACT UP Philadelphia in 1996, the first direct action DeMarco organized called attention to the incarceration of a comrade and member of ACT UP, Gregory Smith. Smith was an HIV-positive activist in a Camden jail. He was convicted of attempted murder when police claimed that by biting an officer, he was knowingly transmitting HIV. Sentenced to 13 years in prison, Smith died of AIDS complications while incarcerated on November 10, 2003, at 40 years old.
Smith’s death was state-sanctioned and reflected HIV-phobia, since science shows HIV is not transmitted through saliva—and also reflects the legacy of HIV criminalization. The conservative American Legislative Exchange Council, which also drove “Stand Your Ground” laws, was responsible for criminalization laws requiring HIV-positive people to disclose their status before sexual activity, opening them up to accusations of exposing others to the illness.
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This criminalization was folded into the 1990 Ryan White Cares Act, which required states to have a process for prosecuting those who “knowingly exposed” others to HIV in order to receive much-needed federal dollars to support people living with HIV/AIDS. Even today we see the stigma of criminality linked to HIV diagnosis. Mayor Jim Kenney publicly disclosed the HIV status of a former city employee charged with rape in 2017, violating privacy and irresponsibly linking HIV status to assault.
But community leaders are giving reason for hope. Tatyana Woodard, a Black trans woman from Nicetown, the mother of the Ballroom house Escada, and Prevention Services Manager at the Mazzoni Center, said there are more programs available for community members than before and we are seeing more leaders that reflect the community, noting that she is the rare trans woman in a management role across the city: “I think we still have a long way to go. I do believe that more of the community needs to be in leadership roles.” She added that she thinks “it’s very sad that we don’t get those opportunities for housing for jobs and, you know, other resources for trans women here,” and that before someone comes in for HIV testing, their other needs such as housing, food access, and gender-affirming support services should be met.
As we journey forward in our collective quest to end the HIV epidemic, may we remember the beautiful flowers bloomed and wilted by AIDS—and resolve in the future that no more lives are lost.
Abdul-Aliy Muhammad is an organizer and writer born and raised in West Philadelphia. @MxAbdulAliy
