HATTIESBURG — For John, a 19-year-old from rural Mississippi, getting medication to prevent HIV came with more than just a prescription — it came with fear.
He was uncomfortable going to the clinic, nervous about being recognized and unsure how to explain the visit to his family. For his safety and privacy, John asked that his real name not be used in this story, and Roy Howard Community Journalism Center leaders agreed to his request.
“The whole time I was at the clinic, I was really uncomfortable and antsy, and I just wanted to get out of there as soon as possible,” he said. “I also felt like I couldn’t –– I mean I couldn’t talk to my family about it, about the process or any stress that it caused, ‘cause that’s just not something we talk about.”
John was trying to get pre-exposure prophylaxis, commonly known as PrEP, a daily pill that reduces the risk of HIV transmission by more than 99% when taken consistently. While he was able to get the prescription, John said he didn’t want to be seen picking it up.
“They were talking about how, in order to pick up the prescription, I’d have to go back to that clinic,” he said. “I don’t want to go back there at all because it’s known as a family planning clinic, and so (if someone saw me) they (would be) like, ‘What are you doing there?’”
Mississippi has one of the highest HIV diagnosis rates in the country, yet stigma, fear and misinformation often prevent people from accessing preventative care. Even though daily PrEP and other options are available for free in some clinics, usage in Mississippi remains among the lowest in the U.S.
Stigma and silence
Tonya Green, director of social services and Ryan White programs at Southeast Mississippi Rural Health Initiative, said fear and stigma remain major barriers when it comes to people getting tested or accessing care.
“Society has not caught up with science research,” Green said. “We have effective treatment to treat HIV. It is considered a chronic illness now. However, patients who are diagnosed with HIV still are afraid to share their diagnosis because of fear of stigma — of being rejected.”
Green said that fear extends to PrEP, which is used by people who do not have HIV but are at risk of contracting it.
“Even with PrEP — and PrEP being quite effective — a lot of patients just can’t seem to wrap their heads around taking an HIV pill to prevent HIV,” she said. “Anything related to HIV, it does carry a stigma, so that does have an impact on some patients to not want to take PrEP medications.”
Melanie Blanton, a health educator at the University of Southern Mississippi, sees another missing piece of the puzzle: education. She said many students have little knowledge of sexual health or where to find reliable information.
“(New students) don’t have sexual education or don’t talk about sexual health with their peers or maybe with their family,” Blanton said. “And so, talking about it and being offered (a chance to get questions answered), you know, from a knowledgeable nurse educator … it’s new to them.”
Dr. Logan Ramsey, a family and primary care physician and HIV specialist at Forrest General Hospital in Hattiesburg, said patients often want to have these conversations — they just don’t know how.
“If you look at some of the surveys of patients, 8 out of 10 say they would like to talk about sexual health with their physician,” Ramsey said. “But it can be a topic that might be a bit uncomfortable or taboo.”
Normalizing care, new care options
Green said her team works to make patients feel welcome and make getting care a less stressful experience.
“We treat all patients the same,” she said. “It has nothing to do with their diagnosis. It has nothing to do with their level of income, whether they have insurance or not.”
Changing the stigma, she said, requires keeping the conversation going.
“The more we normalize it, and the more we talk about it, it reduces stigma,” Green said. “And that’s what we try to do — is try to normalize talking about PrEP, try to normalize talking about HIV so that it just becomes useful — as if we’re talking about diabetes or hypertension.”
In Mississippi, nearly 10,000 people are living with HIV — one of the highest diagnosis rates in the country, according to Mississippi Today. But Green said the issue often flies under the radar.
“So when you don’t hear (about HIV), people assume that, oh, it’s not a problem anymore,” she said. “Well, that’s not true with HIV.”
New medications are starting to reshape prevention. The most recent, Lenacapavir, was approved June 19by the U.S. Food and Drug Administration. Marketed as Yeztugo, it is the first injectable prophylaxis that lasts six months — designed for people who struggle to take a daily pill.
Green and Ramsey both said the long-acting injectable could make it easier for more people to stay protected.
“Looking at once every six months — for most people, that’s going to be as close to ideal as you can get in terms of having to think about dosing a medication,” Ramsey said. “You know, we’re all busy, especially if you’re taking medicines that may be dosed multiple times a day, it’s difficult to maintain perfect adherence.”
But cost remains a major hurdle. Green said early estimates put the annual price of the injection between $28,000 and $39,000.
“(It’s) very expensive,” she said. “However, there are patient assistance programs that patients will be able to apply to for financial assistance to get the medication.”
For John, it might be the option that makes staying on PrEP feel safer — and simpler.
“I think getting a shot every six months would be a lot better than having to fill a prescription,” he said.