This HIV pill saves lives. So why is it so hard to get in the Deep South?
Even in a tiny town in the Mississippi Delta, Robert Rowland, an openly gay, single, middle-aged man, has no problem finding sex partners.
What he can’t find is PrEP, the once-a-day pill that protects users against HIV infection, or a doctor who knows much about it, or a drugstore that stocks it.
So every few months, he said, he drives three hours to Open Arms, the health center here that distributes an estimated 80 percent of these pills in the state. He refills his prescription, updates a nurse on his recent sexual history and gets a quick physical exam.
Robert Rowland said he drives three hours to Open Arms health center in Jackson, Miss., to get PrEP. (Jahi Chikwendiu/The Washington Post)
It’s a long trip but worth it. “There’s no judgment, no whispering, no bull—-. It’s real here,” Rowland said during a visit in January. “And the sugarcoating, leave that at the door.”
In 2017, the last year for which figures are available, the South had about 20,000 new HIV diagnoses — more than the rest of the United States combined. A big reason: In most of the Deep South, it is difficult for people at risk of contracting HIV to find the medication critical to protecting themselves from the virus that causes AIDS and ending the 38-year-old epidemic.
On Monday, President Trump unveiled a budget request that would deliver a first installment of cash for his plan to end the spread of HIV, focused in part on rural areas such as Mississippi, where a tangle of stigma, poverty, inadequate access to health care and lingering racial bias results in a disproportionately large share of HIV infections. But the proposal faces an uncertain fate in Congress — and comes as part of a budget request that, if enacted, would also make deep cuts to Medicaid, the country’s major health-care program for the poor, on which many people with HIV depend.
The virus is now concentrated in a very small number of places in the United States: the rural parts of seven states, including Mississippi; the District of Columbia; Puerto Rico and 48 hot-spot counties scattered across the country.
If HIV transmission can be quelled there, the president’s goal is within reach, public health officials said.
“We are really at a unique moment in time now,” Health and Human Services Secretary Alex Azar said. “We have got the right data, the right tools and the right leadership to achieve this historic milestone in public health.”
The administration’s goal is to reduce HIV transmission by 75 percent within five years and by at least 90 percent by 2030, which would prevent 250,000 infections.
That depends largely on getting vulnerable people on two kinds of medication: antiretroviral therapy for those already infected — which can drive viral loads so low that they cannot transmit the virus — and pre-exposure prophylactic medication, better known as PrEP or Truvada, for those at risk. The drug is more than 90 percent effective at preventing HIV infection via sex and more than 70 percent effective in blocking it in drug injections.
“Theoretically, you could end the epidemic tomorrow if you did that,” said Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases and one of the architects of the plan.Road full of bumps
But the obstacles are formidable. Southern states accounted for 52 percent of the 38,739 HIV diagnoses in 2017, far more than any other region, according to the Centers for Disease Control and Prevention. (The annual number of new infections nationally has remained stable since 2013, according to the CDC.)
The Food and Drug Administration approved Truvada in 2012, but a 2015 survey of primary-care doctors showed that a third of them had not heard of it, according to the CDC. The health agency estimates that 1.1 million people should be on PrEP but that only 90,000 were taking it in 2016.
Use of the drug is climbing nationally, but the South still lags far behind. When researchers at Emory University’s Rollins School of Public Health calculated a ratio of PrEP use to need for the drug in 2017, they found it was more than three times higher in the northeastern United States than in the South.
Persuading many more people to take the drugs will require more federal money for health clinics as well as for education and outreach to certain groups, especially black men who have sex with other men. At current rates, half that group will be diagnosed with HIV infection.
“A large part of this is the will to actually stop the HIV epidemic,” Azar said.
In Jackson, which has the fourth-highest rate of HIV infection among U.S. cities, Open Arms tries to recruit men for PrEP from places including clinics where sexually transmitted diseases are treated. More than three-quarters of those men express interest, but fewer than 20 percent actually show up for appointments, according to research by Leandro A. Mena, Open Arms’s medical director. After three months, only 9 percent of the original group is on the drug, he said.
“The path to PrEP is full of little bumps,” Mena said. “And each little bump is an opportunity to drop off PrEP. My job is to smooth the road.”
In small, rural towns, one of the problems is hesitation to seek the drug because of the stigma of having a same-sex partner, sometimes coupled with racial bias, experts said. Both keep people from seeking care.
“If you’re in a small town, it may be that at that primary-care provider, one of your cousins or one of your aunties may be working in that practice,” said Patrick Sullivan, a professor of epidemiology at Emory University in Atlanta and one of the authors of the PrEP-to-need study, which appeared in the journal Annals of Epidemiology.
Poorer, rural communities also have significantly less access to health care. Mississippi regularly ranks among the poorest states in the nation, and the poor have the most difficulty sticking with health-care providers’ instructions and taking medications regularly.
After missing recent appointments, Nathaniel discusses his health with Kayla Parker-Logan, a licensed practical nurse, at Open Arms. (Jahi Chikwendiu/The Washington Post)
Jon’Aric Nathaniel, another Open Arms client, is in the difficult-to-serve group. He has no address in Jackson, although he spends much of his time here. He crashes at friends’ homes, selling marijuana and styling hair to bring in some cash.
He has been in jail more times than he can remember, mostly for street fights. The 29-year-old takes a wide variety of drugs for anxiety, bipolar disorder and high blood pressure. He also self-medicates, swigging from a Crown Royal bottle much of the day and night.
He was on PrEP for perhaps two years a while back, he said, and would like to stay on it. But with so many other problems, he finds it hard to stick with the daily regimen. When his father developed prostate cancer, Nathaniel found himself on the road to and from Louisiana and fell out of the routine, he said.
“I wasn’t having sex,” he said, “and in my life, there was so much I was going through.” He mostly keeps to himself, he said, because it is safer than being promiscuous. But “sometimes I let the devil come for me, and sometimes I let him win.”
Among Open Arms clients, Mena said, 55 percent of the people who start on PrEP are uninsured, and 20 percent of men under 30 who seek care miss a meal once a week because they have no money. The health clinic also runs a food pantry for anyone in need.
“We know that for them to adhere to their treatment, we need to know what they need,” said Sandra Melvin, the health center’s chief operating officer.Sensitive conversations
Rowland, 42, lives in Inverness, a farming town of about 1,000 on the western side of the state. He said he heard about Truvada in 2014 and brought it up with his doctor. The physician hadn’t heard of it but after some research advised him to begin taking the medication. He recommended Open Arms, where Rowland could receive comprehensive health services as well as help paying for the drug.
Truvada sells for more than $1,600 a month. Until recently, it was not covered by all insurance companies and sometimes carried large co-payments. That changed in November, when the U.S. Preventive Services Task Force recommended that all people at high risk of contracting HIV take the medication. When the recommendation becomes final, insurance companies will have to cover the drug without co-payments.
Robert Rowland checks in for his appointment at Open Arms after traveling hours to get there. (Jahi Chikwendiu/The Washington Post)
Rowland said he could never afford the drug. A program offered by its manufacturer, Gilead Sciences, covers all his costs. The periodic paperwork is a hassle, but at Open Arms his case manager, Isa Wrenn-Jones, helps him file it.
“Without Isa, I would not be on PrEP,” he said.
Rowland could buy the drug at a pharmacy about 15 miles south of his home, in the town of Belzoni. But that pharmacy does not stock it, so he would have to order it at least a day in advance. “They’re tight-lipped. They’re discreet. They’re very professional,” he said. But it’s easier to take care of everything at Open Arms.
During a visit in January, he answered intimate questions about his sexual practices posed by nurse Kayla Parker-Logan, assuring her that he takes his medication every day, almost always uses condoms and asks his partners about their HIV status.
“Some people like tennis, golf. I like sex,” he said. “When you do adult things, you have to accept adult responsibilities. You have to be responsible to yourself and to the person you’re having sex with.”
Such conversations are less common in other settings, where health-care providers may be reluctant to discuss their patients’ sex lives with them.
“Too many providers are not even willing to have conversations with their patients about PrEP,” said Jesse Milan Jr., president and chief executive of the advocacy group AIDS United. “Many public-health officials are very concerned that private physicians are getting off too easy around sexual health with their patients.”
The Trump administration’s HIV initiative will have to find ways to overcome all of these obstacles, until the message to adopt PrEP becomes as ubiquitous as the advice to practice safe sex, health authorities said.
“Now that we have this highly efficacious prevention mechanism, it’s about bringing it to scale,” said Aaron Siegler, an associate professor at Emory’s public-health school.
After a stressful day, Jon’Aric Nathaniel walks a pier at Ross Barnett Reservoir in Jackson. (Jahi Chikwendiu/The Washington Post)
Amy Goldstein contributed to this report.