The shape of AIDS in North Carolina
Posted by Dave on February 10, 2010 | 2 Comments
What does AIDS look like where I live, in North Carolina? People often think of HIV and AIDS as an urban problem, and indeed, the disease does disproportionately affect major urban areas like New York and San Francisco. But that doesn’t mean that AIDS doesn’t exist in places like North Carolina. The national HIV diagnosis rate is about 18 in 100,000. In North Carolina, it’s 20 per 100,000. And in Mecklenburg County, where I live, the rate is 42 per 100,000—the highest in the state. Currently about 1 percent of residents of Charlotte, the city that dominates this county, have HIV/AIDS. That’s nearly 8,000 individuals.
Last night I attended a social event with about 75 of those people, the annual Charlotte RAIN Dance. RAIN is the acronym for the Regional AIDS Interfaith Network, a group dedicated to serving people with HIV/AIDS and educating the public about the disease.
Amy Brooks, a part-time employee of RAIN, introduced me to several of the people at the gathering. I decided not to conduct formal interviews, but just to sit and listen to people’s stories. I met the first person to have ever been diagnosed with HIV in Spartanburg, South Carolina. He had to come to Charlotte, 75 miles away, for treatment. I met a single mother raising a 16-year-old daughter. The child’s father died of AIDS without ever telling either of them about his disease. Fortunately, their daughter is healthy, but her mother must live with her disease in addition to all the challenges of raising a teenager alone.
I met a man who had spent 9 months living at the House of Mercy, originally a home for people dying of of AIDS. Now the home’s six rooms are still used for people with advanced AIDS, but given the advances in HIV and AIDS research, some of their residents recover and are able to live on their own again. He thought he had reached the end, he told me. His dark black skin had turned to mottled white over his entire body. Yet he persevered, and recovered. He’s been on his own now for more than two years, and he’s working to help start a non-profit organization that will give free HIV tests and spread the word about HIV and AIDS at a grassroots level.
Most of the people I met said they still felt there was a stigma associated with their HIV status.
One common theme at the meeting was the inability to work. I heard many people say that they would like to find work but the double whammy of the bad economy and the requirements of qualifying for medicaid mean that it often doesn’t make sense for them to get a job. In North Carolina, if a single person earns over $903 a month, they no longer qualify, but HIV medications alone can be over $1400 a month. It could take upwards of $60 thousand a year for a job to actually pay off, and those jobs don’t grow on trees (and as Charles has pointed out, they’re often the sort of jobs that ask people to work 60-70 hour weeks, which is difficult to sustain if you’re suffering even mild symptoms of HIV disease).
I talked to a man who was getting unemployment money for a previous job, enough to cover expenses. Again, even if he could find work, there was little incentive for him to do so, because every penny he earned would be subtracted from his unemployment compensation. And if he earned too much, he’d lose eligibility to pay for his medications.
I met an eleven-year-old boy who has HIV. He doesn’t tell his schoolmates about the disease because he knows they’ll tease him. He comes to social events like this—mostly filled with adults—because it’s one of the few places where he can be open about his medical condition.
Amy explained to me that RAIN holds six events like this each year, a way of getting their clients together in a social setting, just to have a little fun. There was a DJ playing music a little too loud for my tastes, but most people seemed to be enjoying the it, a mixture of classic Motown and Michael Jackson tunes from the 80s and 90s. There were more crock pots than I’d ever seen together in one place, holding soup cooked by the RAIN staff.
Most of the time, Amy told me, her job is helping clients through difficult times: helping them find housing they can afford, driving them to doctor’s appointments, or reminding them of the importance of staying on their medication. The get-togethers help people relax a little—just have a little fun and forget about their disease.
There was some dancing. It seemed to me that the RAIN staff danced more than just about anyone. “It’s fun for them to see us dancing,” Amy said. I have to say, it looked like Amy was having fun too!
Like many RAIN staff members, Amy juggles a complicated schedule. She has a new baby, 18 months old. She’s a community minister and has temporary job preaching in a friend’s church in Hendersonville, two hours away, so she’s now only working about 10 hours a week for RAIN, down from full time.
When I told Amy that I wanted to follow her along on her job to see how she helps people with HIV and AIDS, she told me that there were many others that I should be talking to, people who were doing more than she was. Almost everyone I met at this event was like that: always introducing me to another person, someone they saw as more dedicated than themselves. Many of these people, who donate hours of their time to help others, are HIV-positive (Amy is not). Some have been hired by RAIN, only to find that their insurance, with its copays and deductibles, isn’t as good as Medicaid.
Still, they see the importance in the work they do. Some of them told me they thought AIDS had paradoxically given them new life, by giving them a purpose—helping others.
I’ll be telling more of their stories in the coming weeks.
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February 10th, 2010 @ 5:26 pm
The shape of AIDS in North Carolina http://goo.gl/fb/te88
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February 10th, 2010 @ 8:16 pm
The shape of AIDS in North Carolina : The Daily Monthly http://bit.ly/9qXVNl
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