Trauma and addiction brought the hepatitis C virus (HCV) into San Juan Caffey Jr.’s life, but then one day, he became one of the first people to benefit from the hep C cure revolution of the past decade.
Today, life in St. Louis is pretty great for Caffey. He loves his job as an engagement specialist at Williams and Associates Inc., a longtime sexual health prevention, education and treatment agency focusing on people of color. At Williams, he helps folks with substance use issues, like he once had, make their own choices about going on medication-assisted quitting or reduction therapies, such as suboxone and naltrexone.
He’s raising his adorable 4-year-old nephew (“I call him my nephew-son”), Jeremiah. And he just had a blowout 45th birthday party on the rooftop of his downtown St. Louis loft building with about 75 family, friends and coworkers—including a transgender erotic dancer friend who, he says, “gave us a very good show!”
Things weren’t always this good for Caffey. Born on a military base in San Diego, the oldest of four boys, he grew up in Paola, Kansas, raised by grandparents he says were alcoholic, including a step-grandfather who Caffey says molested him. “It was a beautiful place—rivers and creeks, hunting and fishing,” he says, “but secrets were being held.”
The trauma and the shame about being gay, led Caffey to use alcohol and drugs as early as age 13—so much so that he had to take a night class to catch up and graduate with his high school class. Before long, he was injecting everything from meth to heroin and dropping out of community college. “I had several suicide attempts and went from being the man taking care of my family to the crackhead,” he says. “Everyone I’d ever pointed a finger at—I became that person.”
Over time, the using led to dealing, which landed him in prison from 2006 to 2007, where he stopped using and started attending 12-step meetings. But almost as soon as he was out, he found that he was no match for his childhood demons and started using again and attempted suicide three more times. Eventually, he started having night sweats. Fearing that he already knew why, he had his blood tested at the health department, where, a few weeks later, he was told that he was living with HIV and HCV.
“I fell on the floor and cried right in front of the two ladies who told me,” he recalls. “But it also kick-started something in me where I wanted to live again.”
Because of his HIV status, he says, he was allowed to live for six months cost-free at the Benilde Hall rehabilitation center in Kansas City, Missouri. “I got a good taste of self-acceptance there as well as education on HIV and hep C,” he says. He started HIV treatment there, and his HIV has been undetectable (suppressed via meds) ever since, he says.
However, his hep C was a different story. At that time, only the older treatments were available, which not only usually had horrible side effects, including flu-like symptoms, exhaustion, depression and anxiety but were also was far from a guaranteed cure, working roughly only half the time.
But then in 2012, he got his lucky break: enrollment in a trial studying a combo of older treatments with a newer one. It was the start of the hep C treatment revolution that ended up making curing hep C easy—with virtually no side effects once the older drugs were taken out of the mix—and highly effective: Nearly 100% of people clear the virus in three months of treatment or less.
Such was the case for Caffey, who didn’t like the side effects of the older treatments but—likely largely because of the newer one—cleared his hep C in three months. “My doctor still monitors my liver, and I’ve had no issues since the treatment,” he says.
It would be another few years before he stopped using drugs, at which point, he says, his life changed. He held a few non-health-related jobs while volunteering at Williams and Associates. He found it to be a safe, nurturing space for Black men who have sex with men like him. In 2017, the agency offered him a paying job.
He’s been at Williams ever since and has become an advocate for fair compensation for the agency’s non-degree workers. “Some of us may not have fancy degrees,” he says, “but our lived experience is a kind of degree in and of itself that helps us connect with clients.”
He loves that his job gives him the opportunity every day to help folks, often Black and/or LGBTQ, who are facing some of the same challenges he once faced, including childhood trauma, substance use, depression and coming to terms with one’s sexuality.
He’s passionate about hep C education, including the fact that nearly everyone should be tested for it, including baby boomers, many of whom got blood transfusions or homemade tattoos before hep C was discovered. (The virus was identified in 1989.) Says Caffey: “I tell folks who test negative that they could still get it” if they engage in risk behaviors like sharing drug-using paraphernalia—not just all injection equipment but glass pipes too.
He connects those who test positive to places where they can access treatment via Medicaid or pharmaceutical patient assistance programs. He even started a program at work called The Shooting Gallery that reaches out to those most at risk—notably, injection drug users and/or sex workers. “They know about hep C,” he says, “but not necessarily that modern treatment is easy, highly effective and almost always covered through Medicaid or another program.”
He especially wants to preach the hep C gospel in the Black community. “It’s a silent killer, because we have a lot of injection drug users and men who have sex with men,” he says. (Anal sex that causes bleeding can transmit hep C—especially among those with HIV.) “It’s something we don’t discuss—the elephant in the room—so we have to keep getting the word out.”
When he’s not working, he loves going to the park with Jeremiah and serving as a chaperone on his school trips. “This is how the universe answered my desire to be a parent,” he says. “I want him to have a better life than I had. That kid is spoiled!”
And though he got therapy to address his childhood abuse, he says the real healing came through unburdening his secret shame by sharing his story in Narcotics Anonymous meetings—after which people would share their abuse stories with him. “I didn’t realize that I was helping other people by freely telling my own truth,” he says.
“I’m not just existing anymore,” he says. “I’m living. I want to keep turning my liabilities into assets and one day fall in love with my knight in shining armor!”