When Esther Ross was diagnosed with HIV in 1993, she says her doctors told her she would die within six months. Because she was a drug user, doctors considered her a high-risk patient and refused to put her on medication, she says.
Ross, who was living in New York City at the time, eventually found a social worker who helped her get the medical care she needed. Eighteen years later, Ross is still alive.
Ross now lives in North Carolina. She says care for HIV and AIDS patients in New York City has greatly improved due to a city program that connects low-income people with HIV to medical care, food stamps, Medicaid and other resources.
Unfortunately, people in the South with HIV or AIDS can't access many of these resources, even though the region, in particular North Carolina, has the highest rates of new HIV diagnoses and HIV-related deaths in the U.S.
These numbers are part of an analysis released last week by the Southern HIV/ AIDS Strategy Initiative (SASI), which is affiliated with the Duke University AIDS Legal Assistance Project. The analysis is based on a 2009 study conducted by the Centers for Disease Control and Prevention.
About 35,000 people are living with HIV/ AIDS in North Carolina, where high rates of the infection are partly caused by the large number of rural areas, says Carolyn McAllaster, the director of the SASI project. Rural residents often have limited access to medical facilities and reliable transportation, she says.
The Triangle has more resources to help HIV patients than its rural counterparts. Both Duke University and the University of North Carolina at Chapel Hill have infectious disease clinics, and the Duke AIDS Legal Assistance Project in Durham provides free legal help to low-income patients.
While access to services is a major barrier to treatment and prevention, the report also identifies social conservatism as another contributing factor to the disproportionate prevalence of HIV and AIDS in the South.
"Stigma is probably still one of the largest factors that impact people who are living with HIV and thinking about getting tested," McAllaster says. "You would think in 2011 we would be past the stigma, but we're really not."
McAllaster, who is also director of the Duke AIDS Legal Assistance Project, says the stigma people associate with HIV or AIDS often prevents them from seeking help or even practicing safe sex or safe needle-sharing. Many people fear losing their families and jobs.
Ross says she was ostracized when she returned to North Carolina, her home state. "I couldn't even get a job in my own county," she says.
Ross says she's been open about her HIV-positive status and advocated in her community for people like her. She says it was only "by luck" that she met the director of East Carolina University's Brody School of Medicine, who hired her.
Ross is now a lead medical case manager. She helps patients living with HIV in Eastern North Carolina find resources for medical care and tries to identify the obstacles that prevent patients from getting or continuing it: lack of affordable housing, mental health problems, substance abuse—and especially insurance.
Often, Ross says, "if you don't have insurance, you won't get care."
According to the SASI study, laws in some Southern states may make it even more difficult to prevent new HIV infections. In North Carolina, it is against the law to possess or distribute syringes that are intended to be used for illegal substances. Injection drug users may be deterred from buying clean syringes at a pharmacy because they are afraid of being arrested.
"In North Carolina, we have a criminal justice solution to a public health problem," says Robert Childs, executive director of the N.C. Harm Reduction Coalition. "It's a big problem."
Criminalizing syringes prevents syringe-exchange programs from operating legally, Childs says. Sharing needles is the third leading cause of new HIV and AIDS diagnoses in the United States, according to the CDC, and improperly discarded needles can lead to accidental transmission. Police are particularly vulnerable to being accidentally pricked by a used and potentially infected needle.
Five needle-exchange programs are operating illegally in the state, according to the N.C. Harm Reduction Coalition. But that might change next year. State lawmakers Verla Insko, a Democrat from Orange County, and Pricey Harrison, a Democrat from Guilford County, pushed a bill this year that would decriminalize the possession of syringes. The bill gained bipartisan support, Childs says, but stalled in a committee. He says the bill will be reintroduced next year.
The fact that HIV and AIDS disproportionately affect people shoved to the margins of society could explain why relatively few people are aware of the epidemic in the South, McAllaster says.
"Unfortunately, they're not communities that catch the public attention like the cancer community does," she says.
The Duke AIDS Legal Assistance Project launched SASI with a grant from the Ford Foundation to raise awareness about the prevalence of HIV in the South and to develop policy recommendations. McAllaster and a group of delegates from SASI presented research from the report and a petition with more than 2,000 signatures to leaders in Washington, D.C., last week, including to Jeffrey Crowley, Director of the White House Office of National AIDS Policy. McAllaster says she hopes the research will be used as a resource in developing the next steps for the National HIV/ AIDS Strategy, developed by the Obama administration in 2010.