The Deep South has the highest death rate of newly diagnosed AIDS cases in the country, according to new research which analyzes the growing epidemic in the region and seeks to articulate its causes, which include social stigma, rural geography, and poverty.
Researchers at the University of North Carolina, Duke University, and the Centers for Disease Control worked together to analyze the diagnosis and death rates of HIV and AIDS patients in nine "target" states in the Deep South, including: Alabama, Florida, Georgia, Louisiana, Mississippi, North and South Carolina, Tennessee, and Texas.
Those states now account for 49 percent of people living with HIV/AIDS, despite making up just 37 percent of the national population, according to the research published in the Journal of Community Health. Researchers also found the region has the lowest five-year survival rate for new AIDS diagnoses in the country; nearly a third of those diagnosed with AIDS in 2003-04 died within five years of being told they were infected.
Susan Reif, of the Duke University Global Health Institute, told VICE News that the researchers wanted to look specifically at the states hit hardest by HIV infection in recent years to try and determine some of the characteristics of people diagnosed and what their outcomes were.
Compared to national averages, patients in the target states tended to be younger and more often African American, while many also attributed their infection to heterosexual transmission, and had worse outcomes, Reif said. The research also noted an increase of young African American men who identify as straight but have had sex with men, she said.
The reasons the Deep South is struggling to bring down diagnosis and death rates are complicated, Reif said, but social stigma, poverty, and lack of healthcare infrastructure likely play a role. Many people may not have health insurance, and many of the states in the Deep South are unwilling to expand Medicaid, she added. Impoverished communities also have less access to good education and good medical care, even if they are insured, she said.
In cities such as Baton Rouge, Louisiana and Columbia, South Carolina, for example, the researchers found there was good medical care available, but that factors including "stigma, poverty, and lack of insurance" were contributing to high death rates from HIV/AIDS, Reif said.
"When you have higher levels of poverty you have less access to care and prevention, and often lower levels of education," she said.
The South's geographic makeup also makes the HIV/AIDS fight different there than in other cities like New York, Chicago, or Los Angeles. The population is more spread out, and the chance of dying is higher in suburban and rural areas of the South, the report found.
The fear of stigma in a small town can prevent people from getting help, and the difficulty of traveling to another clinic where they might not be recognized may be too great a challenge, Carolyn McAllaster, the director of the AIDS/HIV and Cancer Legal Project at Duke University Law School, told VICE News.
"My educated guess is that stigma plays a part in that," McAllaster said. "In a smaller area it's more likely you'll be identified as someone with HIV, so people don't want to be seen in their state, they want to come to Duke, but it's a wide state, it's a big place, and it's not easy. So people miss their appointments."
The stigma, experts say, is layered. The perception remains in the South that HIV/AIDS is associated with gay sex, promiscuity, and drug use, McAllaster said, noting that these states are, in fact, "right in the Bible Belt," a socially conservative region across south-central and south-eastern America that is characterized by a higher Christian church attendance. Reif noted that there is an emphasis on abstinence-only education in many of the states.
"We are hearing story after story of someone who's tested positive but does not want to walk in the door of their local HIV clinic because someone will see them," McAllaster said.
Reif said that these patients often say they need a "cover story."
"When social workers ask about support systems, people will say 'my church is my most important support system'," said McAllaster, but added that many patients believe they could never reveal their diagnosis with their church. "We need more supportive churches," she said.
The research conducted by Reif's team will now be taken by McAllaster's team, which will use it to advocate for solutions. McAllaster said that one challenge they've faced in their advocacy work has been restrictions on federal program funding, much of which is specifically designated to large cities. The areas in the Deep South with the worst AIDS crises are often too small to qualify for federal housing funds for HIV/AIDS patients and money for prevention and testing, she said.
Historically, the AIDS battle has been thought of as an inner-city problem in America's largest metro areas, like New York and Los Angeles, the researchers said. But that began shifting in the late 1990s, when protease inhibitors — a class of antiviral drugs used to treat HIV/AIDS — were released and patients in those cities began benefiting from advances in medicine. Death rates have since declined in those cities, Reif said.
"There's been a shift over to it being more of a minority disease, one of impoverished communities with lack of access to care," Reif said. "So it makes sense that it became more southern over time."
Reif and McAllaster both pointed out that the same Deep South states they studied for HIV/AIDS rates often get the worst marks for a variety of other health issues.
"If you look at a map, on any indication, whether it's level of diabetes or the highest number of uninsured, we're always the dark part of the country," McAllaster said. "We don't have a high income base, we don't have a tax base that can pay for services, which is why it's so frustrating that we're not expanding Medicaid."
Follow Colleen Curry on Twitter: @currycolleen