Editor’s Note: This week CNN Health’s team is taking a close look at the HIV/AIDS epidemic in the Southeastern United States with a series leading up to World AIDS Day on December 1. Learn more about the problem and our upcoming stories here.
HIV/AIDS is a big problem in the rural South, where treatment and resources can be lacking
Pastor Brenda Byrth says helping people with basic needs is the first priority
Byrth works to spread awareness and education about HIV/AIDS in her community
The fan by the window pushed humid air uselessly against the church pews.
Diana Martinez made small talk as Tommy Terry shifted uncomfortably in his seat. The man sitting next to Martinez cracked a joke. Nobody laughed.
A clock on the back wall ticked minutes away in a mocking cliché.
Only three people had shown up for this month’s HIV/AIDS awareness meeting. Usually, there are 10 to 12 – a surprisingly good turnout for a congregation of 25, which just goes to show how many people the disease affects in this small Southern town.
It’s a problem all across the Bible Belt. In 2007 – the most recent data available from the Centers for Disease Control and Prevention – the rate of diagnosed AIDS cases in the Southeastern United States was much higher than in other regions of the country: 9.2 per 100,000 people, versus 2.5 in the Midwest, 3.9 in the West and 5.6 in the Northeast.
Rural areas like this have it particularly bad. The CDC reports that while HIV diagnoses have slowly decreased in metropolitan areas since 1985, rural areas are still showing an increase because of stigma, poor education and a lack of funding.
Standing at the front of the Bibleway Holiness Church, Pastor Brenda Byrth kept a close eye on the door. She had hoped she’d made enough progress that her group would feel comfortable opening up about their experiences.
Another woman slid silently into a pew in the back, the fourth and last member to arrive.
A reporter was in town, and the rest had a secret to keep.
If Byrth was being honest, she would tell you that she really doesn’t want to be where she is. A big-city soul, she has trouble explaining why she lives in Dorchester, South Carolina, population 2,593.
“I’m pretty sure you can’t get more rural than this.”
Her mom is the reason she’s here. Byrth spent part of her childhood in Dorchester before leaving to go to college. She wasn’t planning on coming back. She eventually moved to Europe with her husband, Carl, and their five girls. But when her father died of lung cancer and her mother, Marie, had a stroke, Byrth returned to South Carolina in 2000 to take care of her.
At the time, Marie was the pastor of Bibleway Holiness Church. Marie told her daughter that she would have to take over – to continue the work Marie had started. Byrth said no.
“I said, ‘I’d give my life for you, but I can’t do that,’ ” she remembers. “I saw how my mom had run herself into the ground. I didn’t want to do that. I wanted to go on a cruise, take a vacation. Mom just said, ‘You’ll do it.’ Turns out, she was right.”
The way Byrth tells the story, it all started with a red clay road. If you know anything about red clay, you know it gets muddy fast. So when Dorchester’s Marion Road got rained on, it literally washed away. That meant no school for the kids, no church services, no vehicles in or out.
That was a problem when an elderly resident died, and the ambulance couldn’t reach him for three days because a thunderstorm had flooded the area.
“Some of the men in our community rolled up their pants legs, got the stretcher and went and got him, and brought him out to the end of the road.”
Byrth was outraged.
She attended county council meetings every month for two years before the council finally agreed to pay to put asphalt on the road. Then she started hearing about other parishioners who were too old or sick to leave their houses. She began delivering food and clothing to people in a 40-mile radius of the church.
“My mom always said: Just standing around and looking doesn’t help the problem, you’ve got to get involved,” Byrth says with a sigh and a glance to the heavens. “Even when it’s someone else’s problem, it’s your community, and you’re a part of that community.”
It was during a visit to the “sick and shut-in” that Byrth had her first encounter with AIDS in Dorchester.
It was 2009. A couple had moved to town, and Byrth heard through the grapevine that the husband was ill.
When she got to the house, the middle-aged man was lying on excrement-soiled sheets, struggling to take shallow breaths.
His wife had packed up and left.
If this were a movie, Byrth would have made the visit earlier. The man would have lived – bolstered by antiretroviral drugs and a caring hospital staff.
Instead, his death was simply another symbol of the fear surrounding HIV/AIDS in rural South Carolina.
“I said if things can’t change, then I need to leave, because I can’t live like this.”
Byrth stayed in Dorchester.
The stigma starts with sex, says Dr. Leandro A. Mena, an expert on infectious diseases at the University of Mississippi Medical Center.
Many socially conservative residents of the Deep South have a hard time talking about sex with their children, never mind discussions about condoms with complete strangers.
“That’s one of the first barriers to really having an open discussion about how HIV is transmitted,” Mena says.
The second barrier is religion. Some in the South believe they could go to hell because of their actions, he says, be they drug use, premarital sex or homosexuality.
“Imagine the challenge that this may present in terms of HIV prevention. How can you persuade someone – who believes that no matter what you do, in the end you’re going to hell – that you have to do something to protect yourself?”
Tommy Terry has a love/hate relationship with religion and the pastors who preach it in Dorchester County. A faithful man, he attends Byrth’s HIV/AIDS meetings as a tribute to his partner, Michael, who died in 2005.
The couple spent 10 years together. Terry could do nothing as he watched Michael fade away, losing weight and friends at an equal rate.
Sitting on the concrete porch outside the Bibleway Holiness Church, Terry struggles to keep tears from falling as he talks about the last few months of Michael’s life. Terry called pastors from around the county to come pray at Michael’s side in the hospital. They all refused.
“When somebody has AIDS, they just walk away from you,” Terry says in his gentle drawl. “They don’t want nothing to do with you.”
Byrth’s husband, Carl, used to be one of those people. He believed that if you were in “the lifestyle,” you deserved what came. But working closely with Terry and others affected by HIV/AIDS has changed his perspective.
“These are just people – they went down a different way, but they’re not bad,” Carl says. “This disease does not care who you are, where you are from, how much money you make. It does not discriminate.”
It’s a fine line for Byrth, who avoids preaching outright to those she helps but won’t shy away from provocative Scripture in the pulpit. She disagrees with the lifestyle, she says, not the person.
“Religion has its place, but when people need help, they need help,” Byrth says. “The first thing that I tell them is Jesus loves you. That’s the Gospel. At this point, they need to know somebody loves them, somebody cares. And the second thing Jesus said? ‘Come as you are.’ “
A silver cross swings from the rearview mirror as Byrth pulls into a gravel driveway. She drives hundreds of miles a week, shuttling HIV patients to doctors’ offices. There are experts in Charleston, but most of her neighbors want to travel the extra 30 miles to Columbia, a bigger city where there’s less chance of running into people they know.
After the appointments, she listens to them claim they have everything from cancer to a bad case of the flu.
“They say, ‘Oh, the doctor doesn’t know what he has.’ They know, and the doctor knows,” Byrth says, shaking her head. “They keep it to themselves, and they don’t take care of themselves. [By the time] it gets bad and they go to the hospital, you can’t reverse it.”
Lack of treatment is one of the biggest reasons the rural South has such a prevalence of HIV/AIDS, says Dr. Bill Yarber, senior director at the Rural Center for AIDS/STD Prevention.
Rural residents face special challenges in getting the proper care. Even if there is a doctor close to home, he or she usually isn’t a specialist in infectious diseases. A mistrust of modern medicine also adds to patients’ fears, Yarber says.
In many Southern states, economic conditions make affording treatment difficult. HIV antiretroviral drugs cost $800 to $900 a month, and there’s a waiting list for AIDS Drug Assistance Programs.
Back at the Bibleway Holiness Church, Byrth lays out pamphlets by the door. Not everyone will feel comfortable talking to her, so she wants the information available to slip into a handbag or back pocket.
Once in awhile, she has a visitor from another congregation who whispers as he walks out: “Please don’t tell my pastor.”
Parishioners have left her church since Byrth began pushing for a more open attitude about HIV/AIDS.
“A lot of the folks here are what they call ‘RTC’ – resistant to change,” Carl says. “[But] you’re not going to end a disease like that by keeping it hush-hush and sweeping it under the rug. Because the more you try to hide it, the bigger the pile gets.”
The couple recently bought another property that they’re renovating in nearby Summerville, South Carolina. They plan to call it the Angel House but keep it listed as personal property.
“We’re not saying ‘This is an AIDS house,’ ” Byrth says. “We just couldn’t do that.”
Angel House will be a temporary refuge for people who have fled from their families after being diagnosed and veterans who don’t have a home.
“I think that’s the biggest thing and the greatest thing anyone can do – stick by somebody in their time of need,” Byrth says. “Because when you become isolated and you don’t have anybody, I think you tend to go downhill faster than if you had the support, the love, the encouragement there.
“It might be a bad situation, but you won’t do it alone.”