For over 40 years, folks have been working hard to not only help end the HIV epidemic, but to address the disparities among Black people. 

Since the epidemic first started in the 1980s, Black people have been heavily impacted. Today, we account for just over 40% of all new HIV diagnoses in the United States, even though we’re only 12.4% of the entire population. 

So, in honor of National HIV Testing Day, we brought together activists and researchers to discuss how HIV continues to spread in our community and share best practices for prevention and care. 

The June 27 Twitter Space, “HIV in the Black Community” included Tori Cooper, who serves as Human Rights Campaign’s Director of Community Engagement for the Transgender Justice Iniative; and Dr. Grazelle Howard, board chair of the Black AIDS Institute — the only Black domestic “think and do” tank focusing on HIV/AIDS. 

Also part of the conversation was Rae Lewis-Thornton, an Emmy award-winning AIDS activist and author who’s lived with HIV for 36 years and AIDS for 26; and Leisha McKinley-Beach, a national HIV/AIDS consultant and trainer for PrEP (Pre-exposure Prophylaxis). 

Our researchers included Dr. Jelani Kerr, an assistant professor at the University of Louisville who researches HIV-risk among people in the African diaspora; and Dr. Sherry Molock, an associate professor at George Washington University who develops HIV prevention programs in Black faith-based communities. 

Yes, I can take pills and it’ll keep me here, but aging with HIV ain’t no joke.

Rae Lewis-Thornton, hiv/aids activst

Howard has been on the frontlines of HIV activism for decades. While medical advancements over the years have made it possible for people with HIV to “go from death sentence” and “surviving to thriving,” Howard says the Black community is missing out on these healthcare opportunities. 

“Today, what we have is a disease that ravages Black persons. And as a health advocate, all of us must work to remove stigma and inform our communities,” she said. “We won’t be virally suppressed as a community in 2030. We don’t talk about it enough. We’re not about it enough.”

Lewis-Thornton says the reality of HIV is not being communicated to our community. There are important parts being left out — that we’re still dying from it, and living with it isn’t as easy as it’s sometimes advertised. 

“Part of the problem is how they market Black folk. Pharmaceutical companies are so busy pushing PrEP and telling people they’re getting ready to go sailing and fishing when they get HIV and get on HIV medicine,” she said. “And so, I don’t believe we’re giving the most honest, intelligent information to people to begin to make some real decisions. Yes, I can take pills and it’ll keep me here, but aging with HIV ain’t no joke.” 

Young people are afraid of being rejected because of their status.

dr. Sherry Molock, Associate Professor at George washington university

HIV is a concern for all age groups, but it hits young adults the most. According to 2019 data from the Centers for Disease Control and Prevention, the number of new HIV diagnoses was highest among people aged 25 to 34, and second-highest among ages 13 to 24. 

Molock says prevention barriers and stigma operate a bit differently among youth compared to adults. 

“First of all, young people are afraid of being rejected because of their status. And we forget that when you’re younger, developmentally, you have different kinds of understanding of what sexual behavior is,” she said.

Young people are “more likely to romanticize sexual behavior” and be spontaneous or impulsive about it, Molock said. And because of this, it’s not always planned well and they “don’t bring protection.”

She says to attack contraction rates among youth, debunking myths about sex is important. 

“Above and beyond HIV stigma, we have to really combat stigma about sexual behavior, period.” 

Learn more about how incarceration contributes to high rates of HIV and what can be done on a community level to promote prevention and care by listening to the replay here.