New Yorker Deadra Malloy was diagnosed with HIV in 1988, but she remained healthy for so long that she wasn’t completely convinced she was positive. When she started getting sick in 2006, she decided to embrace her “ancestral roots” and accepted a job down South, where her mother was from.
Malloy didn’t know that the move, first to North Carolina and then to Columbia, S.C., would make it much more difficult to manage her disease. New York offers free health care, including HIV drugs, to HIV-positive state residents who are uninsured or underinsured, while assistance is harder to come by in North Carolina and South Carolina. A single mother of two at the time of her move, Malloy couldn’t afford her medication, which cost upward of $2,500 a month. So she did without it for nearly a year — and ended up in an emergency room with a raging case of pneumonia.
“New York was already way ahead” with services for AIDS patients, says Malloy, now 52, who formed P.O.S.I.T.I.V.E. Voices, an advocacy group for women living with HIV/AIDS in South Carolina. “There were times I wanted to run back to New York. But I didn’t want to see anybody die [in South Carolina] who didn’t have to.”
The original face of AIDS was that of a middle-class, often white, gay man living in New York or San Francisco. That picture has changed over time as people of color have become disproportionately affected by the epidemic. Today, the face of AIDS is black or Latino, poor, often rural — and Southern.
Southern states now have the highest rates of new HIV diagnoses, the largest percentage of people living with the disease and the most people dying from it, according to Rainey Campbell, executive director of the Southern AIDS Coalition, a nonprofit serving 16 Southern states and the District. Fifty percent of all new HIV cases are in the South. In some Southern states, blacks account for more than 80 percent of new HIV diagnoses among women.
States in the South have the least expansive Medicaid programs and the strictest eligibility requirements to qualify for assistance, which prevents people living with HIV/AIDS from getting care, according to a coalition report. In the South, Campbell said, people living with HIV have to reach disability status before they qualify for aid. This is significant, because nationally the vast majority of HIV/AIDS patients rely on Medicaid for their health insurance, according to research conducted by the Morehouse School of Medicine in Atlanta.
None of the nine Deep South states with the highest rates of new HIV/AIDS diagnoses — Alabama, Georgia, Florida, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas — has opted to expand Medicaid under the Affordable Care Act. Those states also have the highest fatality rates from HIV in the country, according to the coalition.
People who don’t have Medicaid or other health-care coverage rarely visit primary-care doctors and aren’t getting tested for HIV, according to Michael Saag, an HIV/AIDS researcher with the University of Alabama at Birmingham School of Medicine. “That’s a large group of people who have HIV and don’t know it.” Saag said he recently treated a young man in Montgomery, Ala., who was blinded by cryptococcal meningitis, a disease typically found among HIV-positive people living in sub-Saharan Africa. The young man had been HIV-positive for years but didn’t know it. With earlier treatment, doctors might have preserved his sight. “That’s a tragedy that shouldn’t happen in our country,” Saag said.
Federal spending policies have added to the problem. Most of the federal money for HIV treatment is distributed through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. The original legislation carved out money for heavily impacted large urban areas. Now, however, smaller Southern communities are in need of help, and they are not eligible for those dollars, according to Saag.
Many of the people living with HIV/AIDS in the South are desperately poor. Many live in rural areas miles from a clinic — and they don’t have access to a car. Others have no running water, or even homes. A study by the Centers for Disease Control and Prevention released last year found that more than 40 percent of those infected have an annual household income of $10,000 or less.
“HIV is a disease of poverty,” said Saag said. “And there are a lot of poor people in Alabama.”
But it’s not just money, or the lack of it, that accounts for the disproportionate number of people living with, and dying from, HIV/AIDS in the Deep South, experts say. The escalating HIV rates are the result of a perfect storm of social factors such as poverty, persistent anti-gay attitudesand a lack of transportation in rural areas. And in the South, AIDS often still has the taint of the plague. Fear of being judged and ostracized keeps some people away from clinics and the care they need.
“There are those who see HIV/AIDS as a punishment from God,” said South Carolina state Rep. Joe Neal, a Democrat. “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.”
The stigma against HIV also plays out in the workplace, despite federal laws prohibiting discrimination against people with AIDS, said Linda Dixon Rigsby, the health law director for the Mississippi Center for Justice. “We still get a lot of cases where the employer doesn’t seem to understand that what they’re doing is illegal,” Rigsby said. “They’re very open about why they fired the person. It’s like the ’50s race discrimination cases all over again.”
South Carolina is one of the country’s HIV hot spots, according to the CDC. But the state has began making inroads in combating the infection, thanks to a collaboration among AIDS service organizations, state government agencies, the legislature and community partners. “This is a state that came into the AIDS fight late,” Neal said. “As a result, it has a strong foothold in South Carolina.”
Until eight years ago, the legislature allocated $500,000 for assistance for AIDS medication, according to Neal. There was a long list of people waiting to get medication — one of the longest lists in the country. Some died waiting.
“It was an awful time for us,” Deadra Malloy says.
The South Carolina HIV/AIDS Coalition, where she worked, formed a task force comprised of people living with the disease, AIDS organizations, hospitals and pharmaceutical companies to publicize the situation. Meanwhile, Neal and other legislators worked on their colleagues at the State House, making the case that increasing funding for HIV/AIDS prevention and treatment made good business sense, because emergency room visits and lost workplace productivity were costing the state an estimated $6 billion annually.
“When they saw those numbers, they recognized it’s not just an issue of morality,” Neal said. “It made business sense to bring the spread of this disease to heel.”
In 2006, the legislature agreed to provide $1 million to Project F.A.I.T.H, the first faith-based HIV-prevention program in the state. Over a five-year period, the program helped more than 40 churches educate their congregations about preventing HIV.
But over the past few years, AIDS funding in South Carolina has faced deep funding cuts, according to Harvard University’s State Healthcare Access Research Project. Last year, the state legislature reduced the annual funding from $1 million to about $350,000. Neal said he is lobbying hard to reverse that. In the meantime, private funds have made up the difference, he said.
This article was produced by Stateline, a journalism initiative of the Pew Charitable Trusts.