When Cedric Sturdevant, of Mississippi, was diagnosed with HIV in 2005, he tried to ignore his status.
Sturdevant said he was concerned about what people would think of him for having HIV and afraid to talk openly about his diagnosis, which led him to avoiding addressing the condition and the kinds of care it required.
“Like many people, I thought I could just ignore it,” Sturdevant said. “So I didn’t seek treatment or get on medication until a year later, and that was because I almost died with complications of HIV.”
With the support of his family, community and church, Sturdevant found the treatment he needed and overcame that fear of rejection due to his HIV status, he said. Now, he’s made it his mission to help others like him living with HIV and affected by its stigma.
“A lot of people are too concerned about what people say to seek treatment or talk about their status,” Sturdevant said. “I was at first, but I’ve learned to not be worried about what people say, and I hope that by sharing my story, other people can learn that, too.”
Sturdevant co-founded Community Health-PIER (Prevention, Intervention, Education and Research), an organization based in Greenville, Mississippi, that focuses on raising awareness for the health disparities experienced within the Black community, primarily around HIV and AIDS.
Not only is Sturdevant among an estimated 1.2 million people in the U.S. living with HIV and affected by its stigma, but he’s also part of a network of organizations across the country working to overturn negative ways in which people think about the disease.
While experts and research suggest these kinds of organizations are making progress in eliminating stigma around HIV, they also say that the negative attitudes and beliefs surrounding the disease are still a major issue.
On Nov. 27, GLAAD released its 2024 State of HIV Stigma Report, which is used to track Americans’ knowledge and attitudes around HIV and its stigma.
The report found signs of progress, including a decrease in the belief that stigma around HIV still exists to 85% in 2024—down from 89% in 2020. Additionally, nearly 90% of Americans reported knowing at least a little about HIV in 2024, and half said they felt knowledgeable about the disease.
But GLAAD’s findings also showed areas where more work needs to be done. The report found a significant decrease in the belief that everyone should get tested for HIV from 77% in 2020 to 67% in 2024. This decline was seen in all regions of the country.
Additionally, there was a decrease in the belief that people living with HIV can experience long, healthy lives from 90% in 2020 to 85% in 2024, according to GLAAD.
“Despite the advances in treatment and prevention, GLAAD’s 2024 State of HIV Stigma showed that fewer Americans report knowing the fact that people living with HIV today, when on effective treatment, can live long and healthy lives and cannot transmit HIV,” said Sarah Kate Ellis, president and CEO of GLAAD. “Meaningful representation of HIV facts and people living with HIV is sorely needed in news and entertainment to increase education and decrease stigma.”
Aces Lira, manager of policy and advocacy for the AIDS Foundation of Chicago, said there are multiple factors influencing how HIV stigma manifests today, including its historical context, cultural attitudes toward the disease and how existing healthcare systems respond to it.
“The historical piece cannot be ignored,” Lira said. “There’s this initial tainted legacy in that the government was really slow to react to HIV and in fact leaving people that were impacted to die. That has consequences because people remember that.”
Additionally, receiving an HIV diagnosis can be isolating due to cultural attitudes toward the disease that need to be changed, Lira said.
“An HIV diagnosis can come with a really deep sense of shame because there are people trying to throw blame or a moral judgment on others for living with HIV,” Lira said. “You would think there would be more empathy and understanding, but some have these ideas that people living with HIV are seen as ‘dirty’ or ‘unclean,’ which only fuels this fire.”
And then healthcare systems can also contribute to exacerbating HIV stigma, Lira said.
“People don’t always think of the systems and blame the individual first, but what if they didn’t have access to insurance or healthcare?” Lira said. “Maybe they tried getting on PrEP but it fell through, or maybe it was someone who didn’t know they were at risk because it wasn’t something their primary care provider ever brought up.”
Dr. Bonnie Pete Thomas, a site medical director for Howard Brown Health, one of the country’s largest LGBTQ+-centered health providers, compared HIV stigma to a “three-headed monster” that’s fueled by ignorance.
“And I say ignorance not in a way to place blame,” Thomas said. “It’s in a sense that we didn’t do our due diligence in educating the community around what HIV is, and that education is crucial to beating the stigma.”
One effective tactic to educate people about HIV is to partner with other organizations at the grassroots level, Thomas said.
“We can always work with our friends and allies, but it’s important that we get outside of our comfort zone and create partnerships with people who traditionally haven’t had partners like us,” Thomas said.
Many HIV organizations have found success partnering with churches and community groups who will let them go in and conduct HIV screenings, blood-pressure monitoring and education around the virus, Thomas said.
“That’s a big part of reducing the stigma and getting people to sit down and listen,” Thomas said.
Then there are the larger-scale efforts like partnering with news, television, radio and other forms of media to tell stories and share education about HIV, Thomas said. Leveraging social media is also crucial.
“HIV stigma is still a very persistent challenge in healthcare, and it has to be a part of every organization’s strategy to invest robustly in our grassroots efforts, outreach teams and media to dismantle the stigma,” Thomas said.
