Ending HIV transmission in America within the next decade — a stated goal of the Trump Administration — isn’t a question of coming up with new medication. The medicines to prevent and treat HIV infections already exist.
But the road to eliminating HIV and AIDS runs through the deep South, where racism, poverty, and homophobia can be formidable obstacles to testing and treatment, particularly for black gay men. According to a Centers for Disease Control and Prevention report in 2017, more than half the new HIV diagnoses in the U.S. were in Southern states, where gay and bisexual black men make up a disproportionate share of people with HIV.
Shawn Esco lives and works in Jackson, Miss. — a city with one of the highest HIV rates in the country.
Esco remembers the moment he realized he was HIV positive. Eleven years ago, he went to a clinic to get a routine HIV test. Workers there invited him into a private room for the results, and he says he knew — before they even said a word.
“When they opened the door,” Esco says, “there was all this new literature that said ‘HIV this,’ ‘AIDS that.’ And you could tell it was there for me.”
Esco is now 37, and lives in an apartment with an affectionate pit bull named Nibbler. He’s stayed healthy in the time since his diagnosis, but the same can’t be said of many of the other HIV-positive people in his life.
In 2011, after good HIV treatments were available, Esco’s best friend from high school died of AIDS-related causes.
“I was extremely pissed off at him,” Esco says,” Because it could have been avoided. All he had to do was want to live.”
Esco says the death of that friend was the hardest to endure, but not his only loss. One of Esco’s exes also died of an AIDS-related condition. And another friend took his own life after he got his diagnosis — out of fear his family would find out.
A few years ago CDC researchers estimated that, at current infection rates, about half of all black men who have sex with men (and 25 percent of Latino gay and bisexual men) in the U.S. will be diagnosed with HIV in their lifetime.
When Esco considers the possibility of ending the epidemic in the next 10 years, he takes into account issues like homophobia, racism, lack of education and stigma, and is blunt: “Given the way things are now, that’s not going to happen.”
In the South, many gay and bisexual black men don’t know the extent of the HIV problem, he says. And, if they do, they may not have access to the tools to prevent and treat the disease.
These are problems that Dr. Leandro Mena tries to solve. He’s an HIV researcher and clinician, and a professor of population health science at the University of Mississippi. Mena also works with My Brother’s Keeper, a community-based nonprofit working to eliminate health disparities in underserved populations.
“Science has given us the tools to end the HIV epidemic,” Mena points out. “The challenge that we have is that we need to make sure those tools can reach those who actually need it most.”
HIV seems easy to keep in check, he says: There’s a daily pill that can keep someone who is infected with the virus healthy.
But things can get complicated fast if you’re poor.
“What are the chances that you may remember to take a medicine that you have to take every day,” he says, “if, this morning, you wake up and you don’t have electricity or you don’t have any money to feed your family?”
Getting access to good health care of any kind — let alone lifesaving medicine — can be especially difficult for people living in rural parts of the south, Mena says. And Mississippi is the poorest state in the country.
Some people in Mississippi who are living with HIV wind up on the doorstep of Grace House, which was once a hospice for people dying of AIDS. Today the organization offers hundreds of people in Jackson financial assistance for housing, and also provides rooms for a few dozen people facing particularly severe challenges, such as addiction or mental health issues.
The Grace House compound in Jackson consists of a cluster of several homes, with a shared backyard and a garden.
It also includes a memorial grove, where statues of angels stand around the base of a tree, memorializing people whose deaths were AIDS-related.
Catherine Sullivan, executive director of the organization, says the ashes of more than 45 people have been spread in the grove — “some of whom were with us at Grace House when they died; some of whose families wouldn’t pick them up from the morgue. And so we buried them.”
Just four months ago, a Grace House resident named Donna died of an AIDS-related illness. She had spent her life struggling to live openly as a transgender woman.
Sullivan keeps photos from Donna’s funeral on her phone: Donna lying peacefully in a coffin, impeccably made up, in a long white gown.
“It makes me really sad,” Sullivan says, looking at the photos. “Because, in death, who she was is honored in a way that got lost in life most of the time.”
Those sorts of stories are familiar to many at Grace House, where residents now are able to live openly and get access to care.
Jeremy Williams, 32, got HIV from his college boyfriend. Williams grew up in rural Mississippi, where HIV treatment was hard to come by.
“You have to drive like an hour or two or three for quality care,” he says.
Williams got HIV before there was a daily pill to prevent infection in people who are at high risk. That pill is known as PrEP — pre-exposure prophylaxis. A lot of gay and bisexual men in the South are not on PrEP — either because they don’t know it exists, or because they can’t afford it. It can cost up to $1,600 a month without insurance. Mississippi has fought against expanding Medicaid, which could have given more people access to HIV prevention and treatment.
Williams says the cost of treatment was kept in check when he was first diagnosed, because he was on his father’s insurance. “But once I got over a certain age, I couldn’t be on his insurance no more, and I couldn’t afford the treatment,” he says.
Today, a daily HIV treatment pill, paid for by the state-administered AIDS Drug Assistance Program, has made his viral load undetectable. So it’s extremely unlikely that he could infect anyone else.
Williams says there’s another issue that makes it hard for him and many other young gay or bisexual black men to protect their sexual health: He was raised in a church that tried to convert gay people to heterosexuality. Shame was part of his daily life.
“The words that people say, they linger,” Williams says. “They linger on for years. And you just — it was like a repeated broken record over and over again. You know: ‘You’re not good enough.’ ‘You’re never going to have anybody.’ ‘No one is going to love you because you have this disease.’ I was just carrying it, you know, like it’s a garment — like all of my shame and stuff.”
There’s also a lack of specialized HIV/AIDS knowledge among too many doctors in the South, says Sandra Melvin, the chief operating officer at Jackson’s Open Arms Health Clinic, where HIV-positive patients can receive care. She says many physicians in the region don’t know about PrEP. And that goes to a broader issue.
“In some cases, I think the training has something to do with it,” Melvin says. “Medical schools don’t focus on certain things — cultural competence, how to deliver health care in rural areas. Those are all things that I think in medical school need to be a focus for young and upcoming physicians or health care providers.”
Attitudes among Mississippi’s elected leaders are also part of the problem, Melvin believes.
“I think that part of what has to happen in this state is that we have to start electing people who reflect the demographics of our society,” she says.
People working to fight the HIV epidemic in Mississippi point to one recent example of a law that they believe promoted homophobic values that could increase the stigma around HIV. In 2016, the state passed a bill into law that allows doctors to refuse to serve certain patients, based on the doctor’s religious beliefs — even if those beliefs seem to be anti-gay.
While there’s no public evidence yet of a doctor refusing to treat a gay patient, critics of the law fear it could deter many people from seeking health care.
One of the Republican sponsors of the bill, Rep. Dan Eubanks, says those fears are misguided.
“I think it’s reaching to try and say that this bill is going to make it worse for people with AIDS, because that was never the intention of the bill,” Eubanks says. “The intention of the bill was to protect people’s First Amendment right to adhere to the tenets of the faith — which is guaranteed in our Constitution.”
Eubanks believes that ending HIV requires education, including education about abstinence and about personal responsibility.
“If you know that participating in unprotected sex is dangerous, but yet you do nothing to try and alleviate that, you greatly increased your odds and chances of contracting a disease,” Eubanks says. “So there’s a certain amount of personal responsibility — and that has nothing to do with sexual preference.”
The Open Arms Health Care clinic operates a mobile clinic that visits college campuses so students can get tested for HIV and other sexually transmitted diseases.
DeAndré Steward, 20, showed up for the clinic when it came to Tougaloo University, outside of Jackson. Steward is black and gay, and he’s aware of the soaring infection rates in his demographic.
“It is honestly very scary,” Steward says. “We’re all sexual creatures, so we’re going to have sex.”
Condoms are cheaper than PrEP, and also effective at preventing HIV transmission. Steward knows this but he also knows another reality.
“You need to always use protection,” he says. “But people don’t, which is why they’re scared half to death when they’re going to get tested.”
Steward faces many of the same challenges that Esco and Williams do, but he’s from a younger generation. When asked whether he thinks the HIV epidemic can become a thing of the past, he’s optimistic.
“Absolutely,” he says. “The older generations, they still weren’t as educated on AIDS as they should have been. You know, their minds aren’t that open — our generation’s minds are.”
Steward tested negative for HIV at the clinic, and he plans to stay that way. But one of the best ways to do so would be to get on PrEP. He’d like to do so, he says, but it costs too much.
Editor’s note: In the audio version of this story, which first aired Feb. 14, Jeremy Williams’ last name was not used at his request. He has since decided he is comfortable having NPR using his full name and photograph for this digital version.
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