Valerie Wojciechowicz was diagnosed with HIV in 1985. “My doctor told me I had no more than 18 months to live and to not have kids,” she said. “We’re talking about the mid-’80s, when we had no computers, no cell phones, no medications. It was horrible. People were just dying left and right. We didn’t know what to do.”
Wojciechowicz has worked in HIV/AIDS advocacy for over 25 years and is currently a medical peer navigator with CAN Community Health, a nonprofit organization providing medical and counseling support to people living with HIV. The peer navigator program, which Wojciechowicz helped spearhead, connects newly diagnosed patients with people living with HIV.
“Many peer programs are designed just for someone who is newly diagnosed or not taking their medication, but we decided early on that we were going to see everybody,” Wojciechowicz said.
Medical peer navigators guide their patients through doctor visits to managing medications, but it’s the emotional support that really makes a difference in a patient’s life. “The minute we disclose our status, there’s a different level of connection,” Wojciechowicz said, “especially when people are just diagnosed. That’s the greatest gift for us, to be able to work with them because we all know how that feels. We know that fear, that terror, and so working with someone who’s just finding out they have HIV is such a gift.”
CAN Community Health began in Florida, which in 2018 had the third highest rate of HIV infections in the United States, according to the CDC. CAN has since initiated peer navigator programs in Texas, New Jersey, Virginia, Arizona, and South Carolina, and has been serving the needs of the Southeast United States for over 29 years, with now 36 locations nationwide.
Isaiah McCall, one of four peer navigators in Columbia, South Carolina, was diagnosed with HIV in 2009. “I started becoming an advocate for HIV and AIDS because one of my very close friends passed from HIV/AIDS,” McCall said. “Ever since then I’ve been an advocate for people going out and getting tested, practicing safe sex, and trying to reduce stigma.”
Even today, when HIV has become medically manageable, the stigma around the virus prevents many people from getting care. “They don’t want to tell anybody their status so they’re not taking their medicine,” McCall said. “The rate here in South Carolina keeps going higher and higher.”
In states like South Carolina, where the HIV infection rate is increasing — they have the ninth highest HIV rate in the country — there are other factors that exacerbate the situation. “Housing is one of the major barriers,” McCall said. “If I don’t have a house to stay in, I’m not going to be focused on my medicine. The same barriers apply for unemployment. So many people think they have to disclose their HIV status to their employer. I tell them, no. That is a personal matter. The only person you need to tell your HIV status is your doctor or the person you’re having sex with.”
Working as a peer navigator, McCall has helped establish transportation for people living in rural areas to have access to inner-city medical care, connected with church groups to educate congregations about safe sex, and visited colleges to offer testing, counseling, and prevention options such as PrEP. “It’s my goal to break down all of these barriers to make sure patients are mentally and emotionally prepared for this journey,” McCall said.
Becoming a peer navigator gave McCall a sense of purpose and connection. “In my community, being an African American male, being LGBT, being a pastor, it’s something that needs to be done,” he said. “It’s not the same for a client to come in and talk to somebody that’s not living with HIV. At least with me they know we share a similar story, so it’s easier for them to open up to me and talk about things that they won’t talk about with their doctors.”
What makes the role so fulfilling is making the connections with patients, McCall said. One of his current patients is a young man McCall met when they were both working at McDonald’s years earlier. “Something told me to reach out to him,” McCall said. “He came by later that week and I got him enrolled in care. We got him on his medication. It really brightens up my day that I have an 18-year-old who went through so much. It’s little stuff like that when you know you’ve made a positive change in someone’s life.”
Disclosure and support
Disclosing one’s status can be one of the biggest hurdles for newly diagnosed patients, particularly in areas where the stigma surrounding HIV is still prevalent. “We can’t get people to attend our support groups, even virtually — they can do it anonymously — because they’re afraid someone’s going to figure out who they are,” Wojciechowicz said. “There’s still a lot of closed-minded people out there and the discrimination manifests in so many different ways for us.”
One of Wojciechowicz’s patients, who asked to remain anonymous, found the peer navigator program so helpful because he had no one else with whom he could discuss his status. “I didn’t have anyone to talk to at all and I was really scared,” he said. “I didn’t feel like I had anyone to turn to.”
The peer support program partnered the patient with Wojciechowicz, who has helped him through some of his most difficult times. “Valerie was able to help me survive and get through all of this,” he said. “When I first got out of the hospital, they told me I was better, but they had had me on all these really strong steroids.” The patient’s steroids induced powerful hallucinations — a common side-effect but one the patient wasn’t prepared for. Wojciechowicz was able to connect with the patient and he received care he might otherwise not have had. “There’s not a moment or day that goes by where I don’t think of my peer navigator,” he said. “She means the world to me.”
“The impact of our peer navigators is evident with our clients in overcoming the stigma-related barriers. Peer navigators assess the situation to determine what works for each individual and how they can help a newly diagnosed person through a very frightening time,” shares Richard E. Carlisle, president and CEO of CAN. “They are the stars of our organization, and without them, we couldn’t do what we do.”
As well as being a peer navigator, Wojciechowicz speaks nationally about HIV awareness, particularly in schools, and she said she gets asked this question a lot: If you could give it back, would you? “My answer is always no,” she said. “I’ll do everything I can in prevention — from preventing anyone else from having to live this life — but I get up every single day and I get to make a difference in the world. Watching my team grow and them watching our clients grow, it’s the most amazing thing.”