When Billy Duckett of Greenwood was diagnosed with the Human Immunodeficiency Virus in 2014, he was certain he was going to die.
He had already lost 111 pounds and developed thrush, rashes and a number of other symptoms associated with the disease.
A healthy adult man has a CD4 count, or white blood cell count, of between 400 to 1,600, and a person is considered to have Acquired Immune Deficiency Syndrome when that count drops below 200. When Duckett was diagnosed, his count had fallen to eight.
He’d known for months something was wrong and suspected he had contracted HIV, but something stopped him from seeking help.
“All of my ignorance prevented me from getting diagnosed,” Duckett said. “The stigma is what keeps people out of treatment. It scares them and they don’t know about the services that are offered.”
Today, with treatment, Duckett is healthy, his HIV is undetectable — meaning it is very unlikely he could transmit the virus to someone else — and he volunteers at Palmetto AIDS Life Support Services, doing testing and outreach.
“The stigma is that if you get it, you die, or that you can pick it up from sweat or you can pick it up from saliva. So I’ve seen it, and it’s everywhere,” he said. “Part of the reason I tell my story is to educate people so the person coming behind me doesn’t have that stigma. If my son was diagnosed, I wouldn’t want him to have that stigma.”
Duckett is among the lucky.
Elizabeth McLendon, an advocate with the AIDS Healthcare Foundation, said one of her closest friends was a Greenwood resident who was diagnosed with HIV. He had a public position and was active in his church and community. Terrified of being identified as HIV positive in Greenwood, he began driving to Columbia for his treatment.
“I asked him why he would drive such a distance when you’ve got Self Medical Center and you’ve got excellent doctors and nurses up there, but it was the stigma. He didn’t want to be recognized,” McLendon said. “He used to stay at my house when he had overnights down here.”
When he died several years ago, his death was said to be a result of complications caused by AIDS, but McLendon said she suspects it was embarrassment — at least in part — that killed her friend.
“The last time I saw him, he had wasted away. He was emaciated and his skin was having the issues that crop up when someone is seriously ill with AIDS-related conditions. It just broke my heart, because he had been such a healthy, thriving person,” McLendon said. “When he was so sick, he wouldn’t have had the energy to make the trip. When he was healthy, he used to drive himself and it would have been phenomenally expensive to have someone drive you down there. And he probably would not have asked any family. I, to this day, don’t know if his family knows what killed him.”
With modern treatment, HIV is no longer a death sentence, but McLendon said the shame surrounding the virus is more deadly than the disease itself. As of 2015, 18,340 people in South Carolina had been diagnosed with HIV, but about 6,235 of them had not received any form of treatment, according to the state Department of Health and Environmental Control. McLendon said because many people live with the virus without knowing it or are never formally diagnosed, the number of people not receiving treatment is likely higher. Particularly in rural areas, such as Greenwood County — where there were about 82 people diagnosed with HIV as of 2014, according to AIDS VU — McLendon said the actual number of infected people is likely much larger.
Factors such as a lack of access and shame often keep people from getting diagnosed at all, McLendon said.
“People are just so afraid to talk about these issues,” she said.
At a testing event in June at a South Carolina Church, McLendon said she met a man who had recently tested positive for HIV. He wasn’t surprised by the diagnosis. In fact, he’d known for some time he’d had the virus, but shame and a lack of resources — the man was homeless — had prevented him from getting treatment. The only reason he’d gone in to get tested was that he was hungry and the volunteers at the event were handing out free hot dogs to anyone willing to get tested.
“When the minister and he were waiting at the medical provider’s office, the man told the minister — who was wearing a collar — that he could not believe that a clergy person would care about him,” McLendon said. “He assumed that people of the church would not approve of him or want anything to do with him, much less help him or be kind.”
But it’s not just those in poverty who are afraid to seek help. Duckett and his husband, who’s HIV negative, have a steady income and live in a stable home. After Duckett’s diagnosis, he said it took his husband months to get tested.
“He was afraid to get tested for a long time because of the stigma, because we were still learning about a lot of stuff,” Duckett said. “He ended up getting MRSA and that’s what it took for him to get tested and find out he was negative.”
But even for the financially stable, treatment, at first glance, might appear cost prohibitive. For instance, Duckett’s medication costs $3,000 a month. However, AIDS service organizations — nonprofits that help people infected with the virus — provide comprehensive financial assistance to anyone seeking treatment.
“At the clinic I volunteer at, when we do find a positive, the first thing we do is link them to an ASO so they can get the treatment,” Duckett said. “And the ASOs, they help you with medicines and every single thing you could need.”
McLendon said people who engage in unprotected sex with multiple partners or use intravenous drugs — though IV transmission accounts for less than 1 percent of all infections in the state — are more open to the disease, but anyone who’s had sex in the past 35 years, even in a monogamous relationship, is at risk.
“A woman, who I’ve become good friends with, discovered just a year ago that she was living with HIV and she had had it for years,” she said. “The only two men she’d slept with were her first husband and her second husband. She insisted that her second husband get tested once she was diagnosed and he does not have HIV. So it was her first husband.”
There have been huge strides made in combating the disease with 136 people dying in the state in 2015, down from 259 in 2006, according to DHEC. Education and acceptance, McLendon said, are the best ways to combat the spread of the virus.
“In care, the disease is utterly manageable,” she said. “There are stories, not just in South Carolina, but throughout the world, where it’s the silence that is brought on by stigma. That’s what’s killing people.”
