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Working for HIV service organizations can often be difficult with long hours and days filled with emotions ranging from deep sadness to relief and hope. For those working in the field who are also HIV positive, the days can be filled with even more struggles. What happens when you’re the one who needs support? What happens when you’re both client and social worker? What happens when the stigma you witness in your job is against people like you?
Advancements in medication and treatment have made living with HIV remarkably different than it was in the early days of the disease, but stigma and a host of other issues still exist. Bryce Curry, Chelsea Gulden and Dale Pierce all face those issues daily while working and living with HIV. “People like to stigmatize HIV as this thing that’s just for ‘this type of person’ and ‘this group’ who lives ‘this life’ and it’s not,” says Curry. Today, approximately 1.1 million people in the U.S. are living with HIV, including people of all backgrounds, genders, races, sexual orientations and economic statuses.
Live or Die?
“It was a Monday,” Pierce says as he remembers the date of Sept. 9, 1996 — the day he was diagnosed with HIV at the Mecklenburg County Health Department. Pierce had been in an unhealthy relationship for 13 years and after a year break, the two men reconciled briefly before testing positive. “There weren’t a lot of supportive resources available in Charlotte at the time,” Pierce said, but he found Dr. Joseph Jemsek through some friends. Jemsek had diagnosed the first case of the disease in North Carolina in 1983.
“Do you want to live or do you want to die?” That was the first question Dr. Jemsek asked the then 24-year-old Pierce. Pierce was started on a “cocktail” of medications, a practice that was not recommended by most doctors at the time. The first three months were tough. Pierce had to leave his job because he was unable to work due to the side effects, but he followed Jemsek’s directions on how to survive. He never dropped below a 200 t-cell count, a threshold that changes the designation of the disease to AIDS, or Acquired Immunodeficiency Syndrome.
Pierce became undetectable during the Spring of 1997. For people living with HIV, effective treatment can be essential to a healthy future and it can also virtually eliminate the risk of transmitting HIV infection to others. It wasn’t until 2016 that the Undetectable = Untransmittable (U=U) initiative was launched by the Prevention Access Campaign. People living with HIV can achieve an undetectable viral load by adhering to their HIV treatment regimen, and once an undetectable viral load is achieved and maintained, there is effectively no risk of transmitting HIV.
After his health continued to improve, Pierce decided to leave his job running a cleaning business to work for Jemsek’s clinic. Being HIV positive in the 1990s was very different. For gay men who saw the worst of the disease, it’s difficult to get past the memory of AIDS in our community, and as Pierce mentions, learn to reconcile with the fact that HIV won’t prevent him from outliving his friends. “I still have this odd view on mortality sometimes,” says Pierce. “I just assume I’m going to die before everyone else,” but as he points out — he knows that those thoughts are irrational and self-imposed. He finds that the most important part of his work is talking about his status to help others deal with their own HIV. In 2006, he helped Dr. Frederick A. Cruickshank open Rosedale Infectious Diseases, now Rosedale Medical in Charlotte and Huntersville. “I turned my life over to this work,” said Pierce. Today, he is the executive director at Dudley’s Place, the new non-profit arm of the organization.
While medications have significantly cut the mortality rate of HIV positive individuals to the point where many, including Pierce, are more concerned about issues such as heart disease or diabetes, there are still issues that positive people face that others might not understand: isolation, depression, stigma and lack of education. “We have lost a lot, too many,” says Pierce with tears in his eyes. “Some of them get more personal than others, but the majority of them are still here now. That’s what we need to look forward to.”
Stigma Shows Up
After being diagnosed HIV positive in 2003, Chelsea Gulden started working at Metrolina AIDS Project (MAP) between her junior and senior years in college. MAP later closed in 2010 and today she is the vice president of operations at RAIN in Charlotte. While at MAP, she noticed that there were other young people that weren’t being served the way that they needed to be and was motivated to create a new space that could more effectively serve their needs. “I healed myself through the work with my clients,” says Gulden. “Creating that space for young people helped me just as much as it helped them.”
At the time of being diagnosed, Gulden was told that she could “optimistically live for twenty years.” She was pregnant and put on medication immediately, but after the pregnancy, she went off her medication which was common at the time. Over the next few years, she would be on and off, but her viral load was never over 1,000, keeping her relatively healthy. HIV viral load tests assess the progression of HIV in the body. For most clinical tests today, an undetectable viral load means fewer than 50 copies of HIV per milliliter of blood. Gulden has been undetectable since 2015.
Gulden points out that while things have changed in certain communities, dangerous stigma still shows up in different ways, especially for women. “It’s really important to have positive people working in the field, and to help cultivate leaders because of stigma,” she says. A mother of three, she still experiences stigma with other parents and worries about the barriers that may be imposed on her children because of her status.
Status has become a more common part of a gay man’s vernacular, but when the disease doesn’t show up as openly in other communities, the result is often misinformation and a decrease in opportunities for conversation. Many in the straight community still see the disease in terms of sexuality. Gulden believes it will take “negative people to move the needle” on making a significant decline in HIV stigma.
A Bright(er) Future
Bryce Curry came out when he was 19 years old and within two years he had been diagnosed HIV positive. It was February 2018, just days before Valentine’s Day, and Curry was in a two-year relationship that he thought was monogamous. He was a student at North Carolina A&G State University in Greensboro and was tested at his campus infirmary. He remembers the quietness of the moment. “It was shock and then it was just quiet,” says Curry. After being linked to care near the university, Curry talked with his personal doctor at Atrium Healthcare in Charlotte about what options were available to him, especially on a student insurance plan.
Looking for a support group, Curry came across RAIN and signed up for its Empowering Positive Youth (EPY) program. Designed for youth and young adults ages 13 to 24 years old, EPY mentors clients while providing basic case management and social support. Topics can include navigating the healthcare system, moving from pediatric to adult healthcare, disclosure, healthy relationships, social support networks and empowerment.
“For a while, I was mad at myself for being positive,” says Curry, “because I was mad at myself for trusting somebody with my body that way.” Today, he isn’t mad about it anymore. He understands how his personal experience can help others. “If I wasn’t positive, I wouldn’t be here. I wouldn’t be a client at RAIN. I wouldn’t have the opportunity to work at RAIN, and I wouldn’t have been able to meet that client who really needed my help.” Curry is a peer retention specialist at RAIN in Charlotte. His job entails finding HIV positive people who have been out of care for six months or more and getting them back in adherence to a medication regimen. He works with clients for a year before they move on to work directly with a medical case manager.
On average, there are 250 new cases of HIV in Mecklenburg County each year (based on data from 2013-2017 by AIDSVu, a project of Emory University’s Rollins School of Public Health, Gilead Sciences, Inc. and the Center for AIDS Research at Emory University). There are over 6,600 people living with HIV in Mecklenburg County and people of color represent 77.5 percent of that number. Identified earlier this year as one of the 48 “hot spot” counties around the country with the highest rates of infection, a Mecklenburg County HIV Community Planning Group has identified three key strategies to achieve a continuous reduction in new cases of HIV: education and testing, Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP).
“HIV makes life a little bit harder, but it doesn’t make it impossible. It doesn’t end your life. It’s not an end-all,” says Curry. As a young man, he thinks about dating and how best to disclose his status. “I’ve definitely been turned away,” he says, but he still finds it important to tell people face-to-face. Curry’s status was undetectable within six months after his diagnosis, highlighting the advancement in HIV treatment and the importance of care. “I feel healthy; I feel great,” he says.
When asked what he would say to himself back in 2018 if he had the chance, he says that it’s important to remember that “everything is going to be fine. Everything is going to work out the way it’s supposed to … there’s something waiting for you at the end of the tunnel.”
Pierce feels the same way. “It’s kind of like when you talk to someone at a funeral,” he explains. “I know you can’t get this now, but I need you to hear this and remember this. It’s going to be okay. It’s going to get better. Each day is going to get a little bit better.”
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