Peer Support Groups Bridge Critical Gaps in HIV Care

In 2002, Freda Jones owned a hair salon, drove her dream Cadillac, and was the proud mother of four children. She was living the life she had imagined as a little girl growing up on Atlanta’s Westside. 

“I was 32 and had accomplished everything I wanted,” she said. “I had survived a tough neighborhood.”

That June, her long-term partner caught pneumonia. Jones said she felt her spirit telling her to get an HIV test. Two weeks later, she received her HIV diagnosis from a nurse at Grady Hospital. The life she worked so hard for was over, she remembered thinking.

“I thought, ‘Oh, my god. I’m going to die. Who is going to take care of my kids?” said Jones, now 56. “I thought I was grown because I was a mom and was making money, but now I say I didn’t grow up until I found out my diagnosis.”

Jones started treatment at the Fulton County Health Department, where she attended support groups for people living with HIV. She also started volunteering at the health department. She found a new purpose as an HIV educator.

But Jones saw a significant lack of representation of Black, healthy cisgender women like herself in community support groups. So, in 2018, she founded LOTUS. Named after the flower that rises from muddy waters, the private, peer-led support group symbolizes women’s resilience and transformation, she said.

Today, LOTUS boasts over 300 members in Atlanta, Georgia, and nationwide. The group meets twice a month via Zoom and hosts social gatherings from Easter egg hunts to Christmas parties. 

Through photo shoots and community presentations, LOTUS provides a safe space for women to “share experiences, challenges, and triumphs while building community and resilience,” Jones said.

“Our mission is to develop women to reach their full potential through support and advocacy by empowering them,” she said. “When women see others thriving and surviving, they hold their heads higher.”

In 2021, the 20-county metro Atlanta area had the third-highest rate of new HIV diagnoses among U.S. metro areas, with 74% of that number among Black people. One in two Black men in metro Atlanta — 50% — is at risk for HIV, said Jeff Cheek, director of the Fulton County Department of HIV Elimination.

The slashing of federal funding for HIV prevention and research by President Donald Trump is only going to lead to worse numbers and a steeper climb in HIV rates in Atlanta, he predicted. He said this could be a return to the onset of the epidemic, when it was the community — not organizations — that formed support networks and fought for treatment.

“I think during this time of turmoil, facing funding cuts for HIV and specifically on the prevention side, calls the community back to the early days of the epidemic, in the 1980s, when we fought for funding, and we’re going to do it again,” Cheek said.

“These groups were started by people in the community because they were not getting any help anywhere else, and so individuals with HIV were starting these peer support groups,” Cheek said. 

Leisha McKinley-Beach, founder of the Black Public Health Academy and a long-time HIV activist, has witnessed the evolution of these groups. 

“Peer support groups have to retool to remain relevant in how they support people living with HIV in this current day and time,” she said, pointing to virtual groups like LOTUS as innovative models that expand access.

Numerous studies show peer support and community-led support networks can be effective in reducing stigma for people living with HIV and also improving treatment adherence, but more research is needed. 

A 2024 study, “Ending the HIV Epidemic in Metropolitan Atlanta,” has many suggestions, but ended with a stern message: “Given the lasting effects of segregation and persistent structural racism, community empowerment must form the foundation of the Atlanta HIV/AIDS response.”

Dr. Daniel Driffin is the co-founder of THRIVE Support Services (SS), which provides resources for Black gay men living with HIV. He is also an organizer of the new planning coalition seeking community input on ways to end the HIV epidemic. 

Peer support groups “bridge critical gaps in HIV care,” he said.

“Black and brown people still are unequally impacted by HIV. We see roughly two out of three new diagnoses are amongst Black and brown people,” he said. “Peer networks can stand in the gap… especially since the majority of people providing care for people living with HIV are north of I-20.”

These support groups also provide resources when it comes to medication and slowing transmission.

“Networks assist in the process of making laboratory results make sense,” Driffin said. “More times than not, you may get 15 minutes with your medical provider, and you think of all the questions once your provider walks out. Having a network of people living with HIV that you’re connected to, you can drop those types of questions into the network.”

Cody Henry, program manager at THRIVE SS, when people with shared experiences come together, they not only find comfort but also find a foundation.

“When our community is educated about HIV status, the importance of testing, understanding medication, recognizing that undetectable equals untransmittable… those are conversations that are present during peer support groups,” Henry said.  

“The peer support group offers a great mechanism to lower transmission rates.”

The post Peer support groups bridge critical gaps in HIV care appeared first on The Atlanta Voice.