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AIDS patients in the South find little support

By Dahleen Glanton

April 14, 2009

Reporting from Henderson, N.C. -- Sheila Holt moved to this small town from New Jersey two years ago to take care of her ailing mother. But as a former heroin addict with HIV, she found that rebuilding her life in the South was harder than she had imagined.

She was shocked that the wealth of services, such as housing, transportation and medications -- available to her as an HIV patient in Newark -- were lacking in Henderson. In the North, she said, people talked openly about the disease without fear of reprisal. In the South, she said she could not sit at the dinner table with her family or talk to her neighbors about the disease without the risk of being shunned.

With no job and few housing options in this rural area, she lived for months in the basement of her mother's home, slipping upstairs only when her stepfather was at work. She eventually qualified for Medicaid, which pays for the 10 medications she takes every day. And she receives a disability check that helps cover the rent for her sparsely furnished apartment tucked away on the backside of a public housing complex.

In the eyes of many -- including her stepfather, a part-time minister -- HIV and AIDS represent sin, she said.

"People are scared in the South. They don't really understand that this is a disease," said Holt, 44, who has begun to speak out about HIV prevention to students and other women. "They are either too religious to open up or they don't want the stigma."

It is an attitude that healthcare professionals have battled for almost a decade while HIV/AIDS skyrocketed in rural Southern communities, particularly among African Americans. With too few doctors, staggering poverty and a history of inadequate AIDS education programs, the South is home to half of the 1.1 million people living with HIV/AIDS in the United States, according to the Southern AIDS Coalition, a group of health professionals.

The Obama administration said recently that it would refocus attention on HIV/AIDS in America, spending $45 million over five years on television and radio ads, transit signs and other efforts to promote education and prevention. But with most states facing severe budget shortfalls, experts fear public health could take a hard hit.

"Some states have significantly less money to engage in disease prevention in their communities, and either the state will have to make up the difference, which is hard to do in these economic times, or there will be harsh outcomes," said Jeff Levi, executive director of Trust for America's Health, a nonprofit advocating disease prevention.

A new study by the trust found that during the economic downturn, Midwestern and Southern states are receiving the least federal funding from the U.S. Centers for Disease Control and Prevention to spend on public health, including AIDS. Reasons for the funding disparities include lack of money available to the CDC and states failing to aggressively apply for all available funds.

"Without equitable spending across the country, where you live will determine how well you live," Levi said.

In 2006, the federal government revamped the formula for distributing Ryan White Program funds, which significantly increased the allocation of HIV/AIDS money to the South.

But healthcare workers in the South said they still were catching up from years of underfunding and were struggling to provide medical and support services to their primarily low-income patients at a level comparable to other regions. As a result, they said, many patients lack adequate housing, transportation and access to some medications.

"Certainly the $30 million shifted to the South helped, but we still have bigger problems," said Kathie Hiers, former co-chairwoman of the Southern AIDS Coalition. "There needs to be a better level of parity between the states. The money should follow the epidemic, but the way it stands now, the cities get way more per person than the rural areas."

The CDC said urban areas, particularly in the Northeast, continue to experience the greatest fallout from AIDS. The Northeast had the highest AIDS case rate per 100,000 in 2007 at 16.4, followed by the South at 15.1. The South, however, accounted for 46.4% of new AIDS cases in 2007 and has the greatest number of people estimated to be living with AIDS, according to a Kaiser Family Foundation analysis of CDC data.

"While the South has faced a higher burden of AIDS, the bulk of the available data do not suggest that the epidemic in the South is worsening," said Dr. Richard Wolitski, acting director of the CDC's Division of HIV/AIDS Prevention.

Dr. Michelle Ogle, director of the Northern Outreach Clinic in Henderson, has struggled to serve patients with limited resources. The recession has worsened the problem, as people who are uninsured and barely making ends meet often place their medical needs on hold for day-to-day survival.

Ogle has spent eight years working with HIV and AIDS patients in this town of about 16,000. Her small clinic, nestled out of sight in the rear of a medical complex, is the only such facility in a 50-mile radius and serves 50 to 100 patients a month from surrounding counties.

"We are not just fighting HIV, we are fighting a culture," Ogle said. "What is disturbing is that we have women who don't feel comfortable insisting that men use condoms because they are afraid he will leave -- and maybe he is paying some bills. They are victims of poor education, low self-esteem, and they don't feel empowered."

In the 12 years since she contracted HIV through unprotected sex, Jo Lee Cooper, one of Ogle's patients, has begun to talk openly about the disease, but it was not always that way. She used to laugh with her co-workers about people who had AIDS. And one day, she showed up for work and someone had posted copies of her medical records in the bathroom stalls and public areas of the factory.

"You get up in the morning, and the last thing you do before closing the door to go to work is put on a mask. The laughter was my mask," said Cooper, 44. "Now I'm not ashamed of it. I know I made mistakes but I'm human, and that's something I have to live with."

It was harder for her husband, Michael Cooper, 50, to accept because it brought attention to the fact that he too has HIV and was not ready to go public. Recently, after years of what he called "hiding in the bottle," he gave up drinking and faced reality.

"I don't know whether I gave it to her or she gave it to me," he said. "It caused some problems for us in the past but now it doesn't matter. This is my sermon now, and I'm taking better care of myself."
 

 


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