The stigma surrounding AIDS is a key reason that the South is the epicenter of new HIV infections in the United States. Half of all new infections in the United States are in the South, although the region has only a little more than a third of the country’s population, according to the U.S. Centers for Disease Control and Prevention. The South also has the highest death rate due to HIV.
The disproportionate number of cases in the South has many causes: widespread poverty, a shortage of health care, a lack of HIV testing and education, a shortage of accessible medical specialists for the many who live in small rural areas and a persistent prejudice by many in the Bible Belt against homosexuals, the group most affected by HIV/AIDS.
“For many people in the South, HIV is not on the radar,” said Jonathan Mermin, director of the CDC’s HIV/AIDS prevention division. “But the South is heavily affected.” The Deep South — Mississippi, Alabama, Louisiana, Georgia, North Carolina, South Carolina and east Texas — has been hit hardest. “HIV is exploding in these states,” said Carolyn McAllaster, director of the Southern HIV/AIDS Strategy Initiative. A key reason, she said, is because people don’t get tested.
Lynette Oliver, 46, an unemployed nursing assistant in Houma, a town of 34,000 in southeast Louisiana, had her HIV infection diagnosed this year. “People are scared to talk about it. I’ve had friends with HIV; their family disowns them, doesn’t let them eat off the same plates or drink out of the same cups.”
Oliver decided to get tested when she kept losing weight. She is unsure, she said, of how she got infected but she is not all that surprised: “In my younger days, I did a lot. I been there, done that.”
She has no health insurance; her medicine is paid for through state and federal programs for the indigent. “People just keep back from you” when they know you have HIV, she said. “I’ve felt it, that feeling that you’re not wanted.”
Those who earn less than $10,000 a year are three times more likely to be infected with HIV than those who make more than $50,000, according to the CDC.
“HIV is clearly a disease of poverty,” said Michael Saag, director of the Center for AIDS Research at the University of Alabama at Birmingham. “And there is a lot of poverty in the South.”
Once infected, poor people face steep obstacles to adequate care: They often have no health insurance and little money for medicines, tests and doctor’s appointments. The largest HIV clinic in southern Alabama, Medical AIDS Outreach of Alabama (MAO), treats 1,200 patients scattered across a broad swath of the poorest, most rural part of the state. More than three-quarters of its patients have an income below the federal poverty level, which is $23,050 for a family of four. Just 10 percent have private health insurance, and 40 percent have no insurance.
African Americans have been hit hardest. They account for half of men, and nearly three-quarters of women, in the South whose HIV infections are newly diagnosed, according to the CDC. The situation in Mississippi is typical: African Americans make up 37 percent of the state’s population, but they account for nearly three-quarters of those with HIV. Rates are especially high for gay black men in the South; a 2011 study by researchers at the Florida Department of Health calculated that one in five were infected with HIV.
Researchers say that African Americans in the South are especially likely to see homosexuality as immoral. In response, gay black men in the South often live on the “down low,” leading ostensibly straight lives with girlfriends and wives while having sex with men.
“In the African American community, men who are gay are more likely to hide their sexual activity,” said Saag, who also directs a HIV clinic in Birmingham. “So it’s more common for the virus to spread from gay men to heterosexual women.”
Because so many people in the South do not get tested for HIV, many who are infected don’t know it — and are likely to keep infecting others. “There are a lot of undiagnosed people out there,” said Laurie Dill, medical director of MAO.
Cedric Wherry, a community outreach worker with Selma AIR, regularly sees patients who are afraid to get tested because of the stigma. “They will tell me ‘If I’m positive, I’d rather not know.’ ”
By the time these people receive diagnoses, their disease has often progressed to full-blown AIDS, which significantly increases their risk of death. In Louisiana, for instance, nearly a quarter of people who test positive for HIV learn they already have AIDS. “We are seeing a lot of late testers,” said DeAnn Gruber, director of Louisiana’s HIV/AIDS program.
A significant number of people diagnosed with HIV simply don’t get treatment, even though state and federal government aid often provides medicine for those who can’t pay. “There are many, many people in this state who have been diagnosed but are not in care,” said Harold Henderson, who directs an HIV clinic at the University of Mississippi Medical Center in Jackson. Some don’t realize that treatment can keep the disease at bay and mistakenly think there’s nothing to be done, Henderson said.
Throughout the South, sex education and HIV-prevention education tend to be limited, with most states and counties relying on abstinence as the touchstone. In general, state public health departments in the region are badly underfunded and have a hard time meeting the varied needs of people who have HIV or are at risk of being infected.
Patients in the South often live far from doctors and specialists and lack transportation to get to them. In South Carolina, one in four of those with HIV live in rural areas, as do four in 10 in Mississippi — by far the highest percentage in the country.
Many of these patients can’t afford a vehicle and have trouble getting to doctors, who are often 100 or more miles away.
Some clinics in the South provide rides for patients or send doctors, nurses and case managers to rural areas.
But mobile medical care is expensive. To improve this system, MAO recently began a telemedicine program designed to provide an instant long-distance link between doctors and patients. The first site, Selma, started operating in January, and now, once a week, doctors and case managers in Montgomery talk to patients in Selma via a high-speed video linkup.
“It’s face to face in real time,” Dill said. “You can see the patients. You can see the medicines. It’s hard to do that on the phone.”
On a recent humid, overcast morning in a small, windowless room in Selma’s sole hospital, Vaughan Regional Medical Center, 58-year-old Michael Young sat facing a large computer monitor. The thin, soft-spoken man with tinted glasses and short jheri-curled hair lives in Dixons Mills, a small community an hour west of Selma. His HIV infection was diagnosed six years ago; he said he was probably infected after having unprotected sex with a female partner. On the screen talking to him was Prashanth Bhat, a physician who specializes in HIV; Bhat is in Montgomery, 50 miles away.
Bhat told Young he had “fantastic news”: The medicine was working so well that the HIV was undetectable in Young’s body. But Young had other chronic health issues — some likely related to HIV — including diabetes and kidney and liver problems. That day, in his monthly visit to this clinic, Young said he had pain from an apparent blocked artery in his leg that kept him up at night. Bhat promised to talk with a vascular surgeon about how to ease the pain.
Bhat saw six patients on this day from various parts of the state — something that wouldn’t have been possible had he spent hours traveling. “It saves a ton of time,” he said.
By next year, MAO and two partner clinics elsewhere in the state will have a total of six telemedicine sites. The expansion will allow the clinics to provide remote care to more than two-thirds of the state’s counties. The program, which is funded by MAO, the federal government and the national group AIDS United, will initially run for three years at a cost of $2.4 million.
In another attempt to lessen the HIV/AIDS rate, Louisiana has instituted “opt-out” HIV testing in prisons and county jails, as well as state public health clinics. For these tests, providers assume that all patients want the test; patients who don’t want to be tested can opt out. The number of tests increased from 60,000 in 2007 to nearly 100,000 in 2010. Of those tested, about 1,000 were positive.
“These are people who may not have gotten tested on their own,” Gruber said. The state is working to expand the opt-out approach to public hospital emergency rooms, which would further increase the number of tests.
Many who work with HIV patients including Saag, the Birmingham HIV clinic director, are trying to win over churches. Many say that churches in the South often foster HIV stigma, presenting the disease as part of a sinful gay lifestyle. Saag and others are working to persuade pastors to see HIV as a health problem rather than a moral issue. Some observers are hoping that the new Affordable Care Act will improve HIV care in the South, and elsewhere, by increasing funds for Medicare and Medicaid recipients.
Wherry, the Selma outreach worker, says success depends on a much wider acknowledgment that HIV is a real problem in the South. “People think if they ignore this, it will go away. It’s the elephant in the room,” he said. “We could get a handle on this virus if we just faced it.”
Kohn is a freelance writer