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Breaking down barriers: North Carolina’s grassroots fight against HIV

shows an arm with a butterfly needle in it, a woman's hands are manipulating the needle, blood tubes to draw a sample

Story by Sinclair Holian

Raymond Velazquez stood in the Asheville post office in a daze. Holding a letter from the blood bank in his hands, he read the lines of print over and over: HIV antibodies had been detected in his blood.

He started to shake. Driving home, he fought to keep his grip steady on the steering wheel. There, his worried sister asked if he was OK. “And I sat there at the table, and I told her. And I cried.”

Velazquez is one of 1.2 million people who are estimated to be living with HIV in America. It’s been more than four decades since the first cases of AIDS were reported in New York City and Los Angeles. But the nation’s HIV epidemic is far from over — especially in the South. In 2021, the Centers for Disease Control and Prevention estimated 32,100 new HIV infections across the country. More than half of those infections (52%) occurred in the South.

This disproportionate impact is clear in North Carolina. In 2022, the N.C. Department of Health and Human Services reported that 36,581 people in the state were living with HIV. That year, 1,366 people were newly diagnosed.

Many of those people live in rural areas where HIV support and healthcare aren’t around the corner. For them, a diagnosis can be isolating and frightening, and fear of repercussions can leave them feeling frozen. Facing an overwhelming combination of distance and emotion, taking the steps to care can feel nearly impossible. And the stakes are high: the longer care is delayed, the more sick they will become.

That’s where regional agencies step in. They bridge the gap between individuals and their healthcare — and give people living with HIV the chance for a long, healthy life long after their diagnosis.    

When Velazquez received his diagnosis four years ago, he knew about HIV from friends and partners living with the virus. Still, after receiving the blood bank’s letter, he was unsure where to turn.

A Google search for “HIV testing” directed him to an organization called the Western North Carolina Aids Project (WNCAP). There, when a test confirmed what the letter reported, the staff helped him start medication. Less than two months later, Velazquez was “undetectable” — the level of HIV in his body was so low that the virus could not be transmitted.

Along with life-saving medication, Velazquez received something equally valuable that day: acceptance. Velazquez is still tearful when he remembers the kindness of the staff member who gave him his results.

“He says something very simple to me, but very profound,” Velazquez recalled. “Would you like a hug?’”

According to the CDC, a number of factors are driving the HIV epidemic in the South. These include poverty and unemployment — which are associated with poorer health outcomes — lack of access to health insurance, lack of public transportation and stigma. And the impact of the epidemic is uneven; people of color are most affected. In North Carolina, Black adults and adolescents made up 56.7% of those newly diagnosed with HIV in 2022 — even though just 22.2% of the state’s population is Black.

There’s no singular reason for the disproportionate geographical impact of HIV in the South. So, for organizations like WNCAP working to end the epidemic on the ground, there’s no singular solution. The effort spans across sectors: advancements in medicine, public education, funding, policy and tackling HIV stigma are interconnected, and equally critical to connecting life-saving care to the people that need it most.

This work is not simple. It takes staff members driving thousands of miles down remote mountain roads to bring clients to their doctors. It takes distributing thousands of tests, and thousands more clean syringes to keep the community safe. It takes grueling emotional work — challenging the deep-rooted fear and shame of HIV still entrenched in some communities.

And it takes facing heart-wrenching loss. Not everyone survives.

“It’s not because HIV is deadly anymore,” said John Chaffin, WNCAP’s community navigation coordinator. “It is if it’s not treated. It’s not treated because we face a population of individuals who are underserved.”

Serving the state 

The Western North Carolina AIDS Project is housed in a small beige building, tucked in a street corner of Asheville. From there, the headquarters offers a robust array of services to 18 largely rural counties across western North Carolina.

The nonprofit was founded by a group of volunteers in 1986, during a decade that saw more than 100,000 AIDS-related deaths across the nation. Since its founding, the organization has developed HIV aid programs in four categories: case management, prevention education, harm reduction and pharmacy services.

One of the WNCAP’s friendliest faces belongs to Chaffin. He knows firsthand that seeking help after a diagnosis might be one of the most frightening moments of a person’s life.

Chaffin never pictured a career in public health. But his career path — and his life — changed the moment he was diagnosed with HIV.

Years before his diagnosis, Chaffin worked in HIV education with the Peace Corps in Zambia. But the diagnosis still came as a shock — and loaded with personal shame.

“You’d think for someone who’s at least slightly educated in HIV,” Chaffin said, “that I would have dismantled all that stigma.”

Fortunately, Chaffin said, he had a connection at WNCAP. In 2019, he joined the team as a harm reduction specialist. Now, he oversees the nonprofit’s client case management services. The program provides many essential resources for HIV care — including housing advocacy, legal assistance, substance abuse services, behavioral health services, hospice care, food delivery, connections to medical providers and more.

Making it personal

In 2022, WNCAP’s case management team provided personalized services to 340 individuals. Many of these clients are poor or are unhoused. Many are gender or sexual minorities. And the disproportionate racial impact of HIV that is reported in the state’s overall population is reflected in WNCAP’s client population, too.

“We serve an underserved population of individuals, and a lot of the folks we serve are people of color, even though Appalachia is really white,” Chaffin said. “We know that HIV impacts people in poverty, impacts people of color a lot more heavily than it does other groups of people.”

Along with addressing physical health, WNCAP focuses heavily on each patient’s emotional wellness. Many clients struggle with feelings of shame about their diagnosis. This is especially common for those raised in rural areas lacking adequate HIV education, with families and communities hostile towards their identity and diagnosis.

Fear of negative backlash often discourages people from seeking help, Chaffin said. And delaying care can have serious consequences; the CDC states that starting antiretroviral treatment as early as possible is crucial to long-term health.

Chaffin manages a major part of WNCAP’s effort to combat the impact of stigma. He connects the nonprofit’s “high need clients,” who might be fearful, lonely or intimidated by the healthcare system, to one of WNCAP’s peer navigators.

These peer navigators are responsible for developing personal relationships with their assigned clients. Checking in with phone calls or texts, and helping clients understand their medical needs are just some of the navigators’ daily tasks. For especially nervous clients, navigators will even join them at their medical appointments, offering a comforting hand to hold.

At every step of the way, peer navigators personally understand exactly what their clients are going through — they are all living with HIV, too.

“A big problem that we have, not just for people living with HIV, but in the United States in general, is not having health literacy,” Chaffin said. “Having someone there they know living with HIV, who they’ve now built a relationship with — they’re more likely to go into care and to stay in care.”

The case management team works to overcome another barrier for people living with HIV in the South: transportation. WNCAP covers an isolated region shaped by the thickly forested Appalachian Mountain range. Many clients don’t own cars, and public transportation is scarce.

“If you’re poor, and you don’t have a car in this country, you’re up the creek without a paddle,” Chaffin said. He’s driven his Nissan Kicks up steep mountains and even through rivers to reach clients — some of whom, he said, live in trailers and even tents in the remote woods.

Getting clients to their appointments is a major responsibility for 78-year-old navigator Jody Cross. When she’s not at WNCAP’s office, she spends her days behind the wheel of her 2004 Chevy Blazer, driving through western North Carolina.

And when she’s not in her car, Cross is calling her clients to check in and chat. “And there’s a couple of them, if I don’t call them, they call me,” she said.

Many days, Cross’ clients are emotional, confused or afraid — all feelings Cross knows well from her own experience with HIV.

A health department worker was the first to inform Cross about her own status. It was 2013 — Cross knew little about HIV, and she was overwhelmed by shock. But she clearly remembers her treatment by the health department’s representative. “She was very condescending,” she recalled. “And it was almost like an accusation.”

Later that day, a neighbor found Cross sitting alone in her car, stuck “in a daze.” When Cross told him what had happened, he directed her to WNCAP.

Without her friend’s guidance that day, Cross said, “I can’t imagine what might have happened to me.”

Prevention as a solution 

WNCAP’s work doesn’t stop at individual treatment — the organization aims to reduce the spread of HIV throughout the region, overall.

The nonprofit’s harm reduction program operates a free and confidential syringe service program, which replaces un-sterile syringes with sterile ones to decrease the transmission of blood-borne infections like HIV. It is one of the largest in the state, reaching thousands of North Carolinians, as well as people from neighboring South Carolina, Tennessee and Georgia.

In 2020, Velazquez joined the organization as a harm reduction community navigator, providing one-on-one services for clients who use drugs. Today, he serves as WNCAP’s director of prevention.

The CDC reported that in 2021, one in eight of the 1.2 million people living with HIV in the U.S. did not know their status. Velazquez’s prevention team combats this by providing free rapid testing for HIV, Hepatitis C and syphilis. In 2022, WNCAP distributed more than 1,000 of those tests.

Education is another critical part of prevention. The team provides the community with safer sex education programming and distributes safer sex supplies like condoms. Velazquez’s work also includes representing the nonprofit at local colleges, where he speaks with students pursuing healthcare careers.

“We bring this material to folks before they go into these settings, so they know how to humanize a person,” he said. “Not putting their disease or substance use before the person, it makes a difference.”

Progress and setbacks

In the decades since 1981, when the first cases of HIV were reported in the U.S., major developments in prevention and treatment offer people who are living with HIV hope for a long and healthy life.

Prescription antiretroviral medication helps people living with HIV reach viral suppression, or “undetectable” status. The U.S. Department of Health and Human Services reported that in 2022, nine out of ten individuals receiving medical care were virally suppressed, meaning they can live longer lives without fear of transmitting HIV.

The Food and Drug Administration has also approved three different kinds of PrEP (pre-exposure prophylaxis), medicine taken to prevent getting HIV. People who take PrEP reduce their risk of getting HIV from sex by about 99%.

But where advancements in medicine have been considerable, progress in policy and funding has often lagged behind.

In North Carolina, change has been slow, but significant. For decades, the state’s 1988 HIV control law made it illegal for people living with HIV to have sex without a condom, and required that they disclose their status with all their sexual partners. If those measures were violated, people living with HIV would be found guilty of a misdemeanor.

After years of lobbying by HIV advocates, the policy was modernized in 2018. Now, if people living with HIV have been virally suppressed for six months or longer, they are not required disclose their status to sexual partners or use a condom.   

In 2021, the ratification of House Bill 96, a law that allows pharmacists to administer post-exposure prophylaxis (PEP) without a prescription, was another step forward. The medicine can prevent HIV after a possible exposure if taken within three days.

Most recently, in December 2023, North Carolina became one of the last states to support expansion of Medicaid. As part of the expansion, North Carolina Medicaid also removed copayment requirements for HIV antiretroviral medications.

The staff at the Western North Carolina AIDS Project is on the front lines lobbying for these changes — and discovering lingering gaps in HIV education.

In 2016, Cross met with a congressman on her third lobbying trip to D.C. Cross recalls the moment she told the representative that she was living with HIV. He was astounded. Until that moment, with Cross sitting in front of him, he said he had no idea that it was possible for women to contract HIV.

“He was just sitting there dumbfounded,” she remembered. “He just sort of fell back in his chair. Because he thought it was only for men — and gay men at that!”

 “I felt like slapping him!”

Despite progress, North Carolina still has a way to go for making access to care entirely equal.

Some policies have the potential to affect organizations like WNCAP directly. In 2021, Senate Bill 607 (the “Substance Use Disorder Safety Act”) was filed in the state Senate. If passed, the bill would have placed heavy restrictions on syringe exchange programs. “It was having to do with where they’re located, proximity to schools,” Velazquez said. “It couldn’t be mobile, it had to be fixed.”

For WNCAP, which is located less than one mile away from an elementary school, and operates a mobile syringe service unit, “that would shut down the majority of our services in harm reduction,” Velazquez said.

Recent GOP attacks on funding for HIV prevention programs also have WNCAP alarmed. Last year, in the neighboring state of Tennessee, the health department and Republican Gov. Bill Lee announced that the state would reject $8.8 million in federal grant money slated for HIV prevention-related services.  

The CDC, which was responsible for dispersing those federal grants to Tennessee’s health department, sidestepped the rejection. It sent $4 million — less than half than the original grant total — to a single Nashville nonprofit, which then dispersed the funding to other HIV organizations.

If a similar decision happened in North Carolina, Velazquez and Chaffin fear the potential fallout at WNCAP. According to the nonprofit’s most recent annual report, government grants made up 20% of WNCAP’s $6,094,382.19 income.

“We’re not a large organization. We have to rely on funding, applying to grants and things of that nature to receive the funding to do these services that really should be done by the state, or local health departments,” Velazquez said.

Healing from within 

The Western North Carolina AIDS Project is working hard to dismantle the stigma deeply embedded in its clients and community. And in the process, for many of the staff, the work has done the same for them.

“This is a family,” Cross said. “There is no separation.”

Reflecting on his career with WNCAP, Velazquez thinks back to his test years ago — and the kindness, he said, that might have saved his life.

“I’ve met people like me, who are queer and living with HIV,” he said. “I found family. Found community. Found love. Found work. And something I’m passionate about.”

“I never thought in a million years it could have started with that hug,” he said.

WNCAP cannot prevent every loss of life. And the grief is hard to shake.

“In this work when you’re dealing with overdose deaths, or people that are not receiving care, you hear more bad or sad stories than you hear good ones,” Velazquez said, barely holding back tears.

Still, the positive impact is undeniable. When clients share the stories of how WNCAP has changed their lives — whether they received an HIV test, sterile syringes or just a kind phone call — Velazquez hangs onto every word.

“When you get that diamond, you grab it,” he said. “And that’s what keeps me going.”

The post Breaking down barriers: North Carolina’s grassroots fight against HIV appeared first on North Carolina Health News.

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