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According to 2020 data by the Centers for Disease Control and Prevention (CDC), the American South accounted for 51% of HIV diagnoses, the highest percentage in the U.S. by region, also leading the country in new HIV diagnoses. Black Americans accounted for the highest rate of HIV diagnoses in nearly every U.S. region except for the West. The racial disparity was particularly pronounced in the South.

In episode two of Black HIV in the South: How Did We Get Here? host Anna DeShawn welcomes back award-winning photographer and HIV awareness and education advocate, Duane Cramer, to further explore the experience of the Black American community, particularly in the American South, in navigating the early years of the HIV/AIDS epidemic.

Cramer shares his experience of becoming positive with HIV in 1996 in his 30s, several years after the emergence of the epidemic in the early 80s, a time when “people were dropping like flies,” Cramer says. By the mid-90s, Cramer describes a less dire situation. “Antiretrovirals were out, people were living, and viral loads were able to come down. So [it was] a different time.” But navigating life as he knew it was a different challenge. The stigma regarding his positive status was palpable. “There was a lot going on, just with the stigma; when to disclose, how to disclose, making new friends, finding new support groups and places where I could share my personal experience,” he says.

Cramer describes the horrific and visible side effects of the initial medications developed to treat the disease like AZT, which exacerbated the stigma around HIV/AIDS. “Those drugs back in those days had a lot of really horrible side effects and also distorted people’s bodies and the way they looked, whether they had facial wasting, whether they had lipodystrophy… So when you would walk around and see certain people, you would go, oh they look like they have ‘it.’ And so it was more noticeable because… the effects that they had on the body.”

DeShawn shares a clip of a conversation with Nathan Townsend, HIV Prevention Programs Manager for the National AIDS Education & Services for Minorities (NAESM). Founded in 1990, NAESM is one of the first African American community-based non-profit organizations fighting HIV/AIDS in Atlanta, Georgia. This time, Townsend shares the difficulties that came with taking multiple regimen therapies. “The side effects were just so horrific,” he tells DeShawn. “One medication, it was a wafer. And you had to crush it up and put it in orange juice. I was working at the postal service… I was going to the bathroom and crushing medicine up like it was cocaine. And so if you were an addict and you were doing stuff like this, you know, this is triggering.”

Townsend was taking 14 pills a day, 98 pills a week, just to survive. He sold his life insurance and spent the money, thinking that he was living out his final days. “I bought coats, cars, gave the money away, bought jewelry, did all the things thinking that I’m just gonna live my best life for that moment. And then I didn’t die.” It was then that he realized, “God won’t put more on you than you can bear. You don’t know what you can bear until you go through the fire… I’m a much better person than I was then. It took the broken me to become the better me.”

Coming from a different generation, Cramer recognizes the struggles that those that came before him had to endure. “He talked about a lot of therapies, and all those pills and wafers, and it made me realize that a lot of people just slightly older than I am had to go through all of those things,” he says.

DeShawn notes the progress that has been made since then. “Science has taken us from 98 pills a week to maybe you taking a shot once every couple months,” she says. “Maybe you take one pill everyday, and that can lead you to being untransmittable, undetectable; you can’t even pass HIV anymore. There is a story here of how we do go from hopelessness to hope, but also how much work had to be done and how much people had to go through in order for us to get where we are today.”

This brings us to the HIV epidemic in the American South. DeShawn met with Deirdre Speaks at the Saving Ourselves Symposium (SOS), an annual conference about educating and empowering the Black LGBTQ+ community in the South. DeShawn notes that HIV/AIDS-related illness is among the leading causes of death among Black women between 20 and 44 years old. “It feels like poetic justice… that a Black woman is leading the charge to change legislation around how her community is allowed to survive with HIV,” DeShawn says. Speaks and her team were instrumental in decriminalizing HIV in Virginia, the first state in the South to do so.

Speaks explains, “HIV criminalization is, in its simplest form, criminalizing a person for their HIV status, and we have seen that show up in a bunch of different ways.” In the early days of the epidemic, in order to receive federal funding to combat HIV/AIDS, states were required to enact laws that effectively criminalized a person’s positive status. “These laws really came about back in the Eighties when the Ryan White funds became available from Congress. And the way that they wanted to make sure that states would get it was they had to have a law on the books that if someone transmitted HIV to someone else, then they would be penalized for that or incarcerated,” Speaks says.

“It completely works against public health,” she adds. “And that’s what we noticed not just in Virginia but across the country, is that folks didn’t want to know their status because they knew [that] ‘if I know my status then I could be charged.'”

“For me, it is still a very mind-blowing moment that this is still the case in 2023,” DeShawn says.

DeShawn and Cramer reflect on the long journey ahead in decriminalizing and destigmatizing HIV/AIDS in the U.S. “It’s an unacknowledged consequence of HIV criminalization that ‘I’m alone in this because I can’t tell anyone,’” DeShawn says. But progress is being made through the work of people like Deirdre Speaks who are making a real difference in people’s lives by working to undo harmful legislation from the past.

Listen to the Black HIV in the South: How Did We Get Here? podcast by clicking here.


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