David Njabulo Whiters, PhD, not only loves stepping up to talk about life after hepatitis C, he also loves steppin’—the Chicago-derived urban Black dance style that’s a bit like swing and disco dancing combined.
“It’s a fairly difficult dance to learn, but I love it,” says Whiters, 61, a behavioral health manager at the HIV/AIDS, hep C and substance treatment agency Someone Cares Atlanta. The first Saturday night of the month, he says, “I’ll put on linen slacks, a short-sleeved shirt and some dress shoes. Blue is my favorite color. And I do have a white suit.”
He’s also involved in the 12-step recovery community and with his church, so all around he’s a busy guy with a thriving life.
But things weren’t always so good. Raised in Pontiac, Michigan, Whiters didn’t finish high school because he was deep into heroin, as were many in his family and neighborhood. He bounced around the country between relatives in Michigan, Atlanta and Oakland, California, often using drugs with a nephew his age who was his best friend. Then one day, that nephew was arrested.
“That was my wake-up call,” says Whiters. “The next day, I went to a 12-step meeting, an all-white meeting that I later figured out was a gay meeting. I shared for what must have been an eternity. Later, two guys came up to me holding hands. At this time, I was your classic homophobe, but they hugged me and told me that I might feel more comfortable going [to a meeting with more straight and Black people]. That’s where recovery really started for me.”
But then, in 1991, his beloved nephew was lost to AIDS. Whiters was devastated. He also remembered that as far back as 1976, when he, too, was injecting drugs, a doctor had told him he had the symptoms of hepatitis. Thankfully, he had tested negative for HIV on several occasions. After getting sober, he earned his GED and then his bachelor’s and master’s degrees in social work. He also worked at Morehouse School of Medicine in Atlanta, where he recruited students to consider careers in substance use treatment.
He liked his work, but as the ’90s wore on, he increasingly suffered from fatigue and joint pain. “I dragged myself through work, then came home and got ready for bed,” he says. He took the test for hepatitis C virus (HCV), which had become available in the 1990s, and learned he was HCV positive. “I thought, Damn, David, you got clean, got a degree and now you’re about to die.” He was offered interferon, “but I’d heard enough people talk about how bad the side effects were that I said I’d die before taking it.”
He also told nobody about his hep C. “I didn’t have the courage,” he says.
I did what
was the right
thing to do.
Then, in 2007, he read an article about impending new HCV drugs. His primary doctor sent him to a gastroenterologist, Shirley Harris, MD, who told him he’d have better options if he could sit tight for about five more years but still suggested he start interferon. He refused.
A year later, Harris called, alerting him to a clinical trial combining ribavirin with an investigational drug, sofosbuvir, which later became Sovaldi. He joined the trial in 2012. “I had zero side effects,” he says. “Not a single one.” Better yet, after a week, he learned that his hep C viral load had plunged from 6 million to less than 100. After 12 weeks, he was declared cured.
Full of gratitude and wonder, “I did what I thought was the right thing,” he says. “I posted my story on Facebook. I’d never told anyone I had hep C before. I was afraid people would treat me like a leper. I realize now I was a hypocrite, because in my job I would convince people to become spokespeople for living with HIV.”
The reaction to his post was “mind-blowing,” he says. “I had people from as far away as East Africa and Europe asking how to get the medication.” Then Gilead, the maker of Sovaldi, expanded its trials, the sign-up number for which Whiters put up on Facebook. “My girlfriend left me because of that,” he says. “She was embarrassed that I posted all my business.”
On the brighter side, people nationwide signed up for the study—and were cleared of their HCV. “Less than a year ago, I was in Charlotte, North Carolina, and a woman walked up to me and said, ‘You don’t know who I am, but I’m alive because of you,’” he says. “Same thing happened with a guy in Philly.” He even called an old drug buddy with whom he’d had a bitter falling-out and told him about the trial. The buddy, too, cleared the virus “and walked up to me next time I saw him and hugged me.”
Suddenly, he was talking about the new treatments at recovery conferences. “Audiences full of brothers and sisters who’d been living with hep C for years and not telling anyone,” he says, “including a woman who said she’d had a hard time accessing the drug.” Whiters helped her cut through the red tape. “She called me and said, ‘Guess what? I’m on it.’” Both in and out of his job, “I’m the hep C spokesperson in Atlanta now,” he says, laughing.
He admits it’s sometimes hard to get people to consider treatment—especially African Americans with a long history of distrust of the medical establishment because of such incidents as the infamous 1930s to 1970s Tuskegee experiments, in which researchers withheld syphilis treatment from Black men in order to study the disease’s progression.
“There’s still a lot of paranoia,” he says. “I let folks know I’ve had those same concerns but also let them know I’m one of many who were tired and in pain all the time but aren’t anymore since doing the treatment.”
Meanwhile, Whiters remains plenty busy with his work—and, of course, his steppin’. “I just came off a seven-day Caribbean cruise where I danced two to three times a day for seven days straight.” The trip was the refresher he needed as he carries on his hep C advocacy, which he sees as “paying forward” the gift of his own cure. “To whom much is given, much is required,” he says, paraphrasing Luke 12:48. “This work makes me feel good inside. I think of how proud my nephew would be of me.”
And on top of it all? He’s now a doctor, having earned his PhD in social work from the University of Georgia in 2010. “Every time I hear that, I laugh,” he says. “I used to be a drug addict, and now I’m a doctor!”