The Southern U.S. is Now the Region Hardest Hit by HIV/AIDS—What’s Really Going on Down South and What Needs to be Done to Turn the Tide?
by Chip Alfred
In the 1980s, the AIDS epidemic in the U.S. burgeoned in our biggest cities—Los Angeles and New York. Now more than thirty years later, America’s highest-concentrated population centers are still heavily impacted by HIV/AIDS. But in recent years, what’s happening in the rural Deep South may be the most alarming in the nation, and the situation may get even worse before it gets better.
“It’s a shift that happened at least five years ago, and we are trying to call attention to it,” says Carolyn McCallaster, clinical professor of law and director of the Southern HIV/AIDS Strategy Initiative (SASI), a broad-based coalition of HIV/AIDS advocates and their supporters led by the Duke AIDS Legal Project at Duke University School of Law in North Carolina. A research project, HIV Diagnoses, Prevalence and Outcomes in Nine Southern States, was conducted by SASI in collaboration with the CDC and published in 2014 in the Journal of Community Health. Below is a snapshot of the results.
• As of 2011, thirty-eight percent of those diagnosed with HIV in the U.S. lived in the nine Deep South states (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas), even though this area only comprised twenty-two percent of the U.S. population.
• Overall, five-year survival rates among people diagnosed with HIV or AIDS was lower in this region than in any other U.S. region.
• Fifteen percent of those diagnosed with HIV in the region had died within five years of diagnosis.
• Twenty-seven percent of people diagnosed with AIDS in the region had died within five years of diagnosis.
These “third world numbers…are just striking,” McCallaster declares. “In this day and age when you have treatment available for people, they should be living a normal life expectancy with HIV.” So why aren’t they? Stigma, the ubiquitous deterrent to fighting the spread of HIV, may be even more pervasive in the South than in other parts of the U.S. “We are in a part of the country that is the Bible Belt. There are layers of stigma that people with HIV experience,” she adds.
South Carolina state Rep. Joe Neal told the Washington Post, “There are those who see HIV/AIDS as a punishment from God. There are those who simply don’t understand. As a result, this disease creates a stigma that creates a barrier to compassion and, frankly, treatment.”
For women and mothers, learning how to live with HIV brings its own set of challenges. “When I was diagnosed in 1994, there was nothing in my community that addressed me as a woman—no programs or services out there that addressed me as a mother,” recalls Catherine Wyatt-Morley, fifty-six, founder and CEO of the Nashville-based organization Women On Maintaining Education and Nutrition (W.O.M.E.N.). After learning she was HIV-positive, Wyatt-Morley says her husband, who tested positive at the same time, turned to alcohol for solace and “emotionally checked out” of the marriage. She lost her job, was kicked out of her church, and became alienated by the people she thought were her friends. At one point, she was homeless. “All of my resources, all of my anchors, my foundation, were all removed from me. It was a very dark time, she tells A&U.[pull_quote_right] “Stigma associated with HIV has not changed. It has embedded itself even more in the fabric of communities of color.”[/pull_quote_right] “Stigma associated with HIV has not changed. It has embedded itself even more in the fabric of communities of color.” McCallaster adds, “Once tested, the stigma keeps people from getting into care. We hear stories of people being afraid to go into the local HIV clinic because they don’t want anyone to see them there.”
Jonathan Ferguson, twenty-five, has been living with HIV since 2013. He recently relocated from Philadelphia to his home town of Columbia, South Carolina, where he quickly realized accessing programs and services for young gay men wasn’t going to be easy. “Homophobia is still an issue here,” he says. “It’s a taboo topic. I know people that are still closeted, not really telling their family, sweeping things under the rug.” He says the mindset in the community is, “We know about this [men having sex with men], but we don’t want to talk about. It’s the same with HIV.” Having come from a large urban center like Philadelphia, Ferguson found there were far fewer choices for HIV treatment and services, and with no car and a limited public transportation system, those services are harder to access.
“In rural parts of our states, people have trouble getting to their appointments,” remarks McCallaster. Ryan White funding, she points out, pays for gas, but the individual would need to have a car or find someone with a car who won’t ask too many questions. In North Carolina, as in much of the South, there are no HIV specialty clinics in rural areas, so some patients travel to university hospital medical centers like Duke or University of North Carolina for their care. These medical centers provide shuttle van service for people who need it, but each patient ends up having to spend an entire day just getting to their doctor and back. McCallaster notes, “People are missing appointments. Getting them into care is happening, but what’s not happening is keeping them in care.” And in places without expanded Medicaid, linkage and retention to care may become even tougher. “A higher percentage of people with HIV are poor, and they would qualify for Medicaid if they live in a state with Medicaid expansion, yet every single Southern state has failed to expand Medicaid. There’s going to be a wide gap between the states that provide excellent medical care and the states that aren’t going to be able to.”
Though the situation in the South is dire, there are encouraging signs that things may be changing. In late 2012, the U.S. Department of Health and Human Services announced that eight states, including six southern states, were awarded $14.2 million in first-year funding as part of the Care and Prevention in the United States (CAPUS) Demonstration Project. CAPUS funds are designed to reduce HIV-related morbidity, mortality, and related health disparities among racial and ethnic minorities, with a focus on funding community based organizations. Some health departments in the South are seeing success offering financial incentives for people to stay in care, achieve viral suppression, or encourage friends in their social network to get an HIV test.
The bottom line, says Wyatt-Morley, is empowering people affected by HIV to become a part of the solution. “The resources are not following the demographic. We need to bring real people into the decision-making process. There are not enough of us at the table who are working on the grassroots level.” McCallaster believes it’s important to focus prevention efforts on the specific needs of the targeted communities. “One of our advocacy points is that one size does not fit all. If you’ve got a program that’s working in New York, that’s not necessarily going to work in some of our regions.” Ferguson says he’s still adjusting to life with HIV in the South and hopes he can be a role model for others. “I’m young; I’m a person living with HIV and I want to be an advocate here. I want to get the message out to the public that it’s okay and that there are options out there. We have to put out to the community a positive view of what HIV looks like.”
Chip Alfred is an A&U Editor at Large based in Philadelphia.