By: HELEN MITTERNIGHT
Photo: ABBY MURPHY
You can cast the blame at shame, lack of access or lack of transportation. Whatever the reason, HIV in South Carolina is keeping pace with the state’s high level of other chronic diseases, like diabetes or hypertension.
In fact, the Federal government has given the Deep South the dubious distinction of being the new epicenter of HIV, says Kimberly Butler Willis, director of the Ryan White Wellness Center at Roper St. Francis Hospital. The center, a grant-funded department at Roper, has seen a rise in patients seeking treatment for HIV from about 350 a year in 2000 to almost a thousand a year, she says.
“We are a comprehensive sexual health center providing services for those living with HIV or who are at a high risk for HIV,” Kim says. “And when I say high risk, you have to understand the epidemic really has come down toward the southeast, so if you are living in South Carolina, that is a risk in and of itself.”
According to Kim, the Tri-County area is 26th in the country for numbers of people living with HIV, falling between Greenville, which is in the top 50 and Columbia, which is in the top ten.
“We have, in this state alone, about 16,000 people living with HIV,” she says.
The center, named for the young man who contracted AIDS from a blood transfusion in 1984 and became the face for AIDS education, is designed to attract patients and put them at ease.
“When you walk into our space, it does not feel like a clinic. It looks like a high-end medical practice, with smiling faces and aromatherapy. We have case managers for all of our patients because we find it’s essential. While the medical care is important, the hand-holding and navigating through the experience is equally important,” Kim says, adding that the center also has a food pantry and a pharmacy so that it is, as much as possible, a one-stop shop for patients. For those who need to get to a specialist, the center has a HIPAA-compliant contract with a ride service.
About half of new referrals at the center are for HIV care and half for PrEP, a pre-exposure prophylaxis that Kim says is “like birth control for HIV, it prevents HIV.” Only about 15% of the center’s patients overall are HIV-negative.
Kim notes that the center helps everyone who walks in its doors.
“Some people may be worried about their residency status. We don’t ask and we don’t care. We just want to make sure you receive the care,” she says.
It used to be that you would always see HIV-AIDS, the two paired as though one always led to the other. In the past decade, Kim says, that has changed.
“With advances in HIV medication, people are living with HIV and not AIDS, and we want to make sure we recognize that,” she says. “To hear a diagnosis of AIDS tends to sound like death and dying, while with HIV you can live many decades as long as you take the medication. The life expectancy of someone who is HIV-negative is 78 and, with compliance, with HIV it’s 72.”
The compliance is the key.
“It’s a gift and a curse,” Kim says. “Our young people don’t see HIV as a death sentence and they’re a little more casual about it and still reluctant to receive care. Older patients tend to be more fastidious about coming in and staying on medication. Unfortunately, we’ve seen the sickest in people between 18 and 30 and more diagnoses with AIDS because they’re not complying with medication. You know, young people think they’re invincible and it all feels good until something breaks, and when it breaks, it doesn’t feel good.”
The antidote is education, and the upcoming Charleston Pride is one splashy bit of education. Kim says the center started participating in the Charleston Pride Parade five or six years ago, hesitant about how a Catholic hospital like Roper St. Francis would respond.
“We asked, ‘Are you in?’ And they said, ‘Absolutely!’”
Last year, more than 100 employees from the hospital marched or rode a float. This year, the events stretch for three days, Sept. 12-14, and the center has partnered with the ACLU and the Charleston Pride Committee to present a forum on HIV criminalization and voter rights, a Twerk & Twirl event, along with lots of education about condom use and HIV prevention. Many of the events, including an after-party the day of the parade, will feature guest appearances by drag performer Latrice Royale, who appeared on RuPaul’s Drag Race.
But, Kim says the education must go beyond that one weekend.
“While HIV is going down nationally as a whole, the South and the West remain pretty stagnant,” she says. “So, while we’re not feeding into the increase, we’re not helping with the decrease. You can talk about HIV care and testing more with your family and friend group. Make it a common conversation—if not for you, then for people you love. And you can be tested more often. One out of seven people living with HIV are unaware of their status. Talk more, do more. We’ve got the rest.”