Brooke Parker has spent the past two years combing riverside homeless encampments, abandoned houses, and less traveled roads to help contain a lingering HIV outbreak that has disproportionately affected those who live on society’s margins.

She shows up to build trust with those she encounters and offers water, condoms, referrals to services, and opportunities to be tested for HIV — anything she can muster that might be useful to someone in need.

She has seen firsthand how being proactive can combat an HIV outbreak that has persisted in the city and nearby areas since 2018. She also has witnessed the cost of political pullback on the effort.

Parker, 38, is a care coordinator for the Ryan White HIV/AIDS Program, a federal initiative that provides HIV-related services nationwide. Her work has helped build pathways into a difficult-to-reach community for which times have been particularly hard. It’s getting increasingly difficult to find a place to sleep for the night without being rousted by police. And many in this close-knit group of unhoused individuals and families remain shaken by the recent death, from complications of AIDS, of a woman Parker knew well.

The woman was barely in her 30s. Parker had encouraged her to seek medical care, but she was living in an alley; each day brought new challenges. If she could have gotten basic needs met, a few nights’ decent sleep to clear her head, Parker said, she would have more likely been open to receiving care.

Such losses, Parker and a cadre of experts believe, will continue, and maybe worsen, as political winds in the state blow against efforts to control an expanding HIV outbreak.

In August 2021, the Centers for Disease Control and Prevention concluded its investigation of an HIV outbreak in Kanawha County, home to Charleston, where people who inject opioids and methamphetamine are at highest risk. The CDC’s HIV prevention chief had called it “the most concerning HIV outbreak in the United States” and warned that the number of reported diagnoses could be just “the tip of the iceberg.”

HIV spreads easily through contaminated needles; the CDC reports the virus can survive in a used syringe for up to 42 days. Research shows offering clean syringes to people who use IV drugs is effective in combating the spread of HIV.

Following its probe, the CDC issued recommendations to expand and improve access to sterile syringes, testing, and treatment. It urged officials to co-locate services for easier access.

But amid this crisis, state and local government officials have enacted laws and ordinances that make clean syringes harder to get. In April 2021, the state legislature passed a bill limiting the number of syringes people could exchange and required that they present an ID. Charleston’s City Council added an ordinance imposing criminal charges for violations.

As a result, advocates say, a substantial number of those at highest risk of contracting HIV remain vulnerable and untested.

Public health experts also worry that HIV infections are gaining a foothold in nearby rural areas, where sterile syringes and testing are harder to come by.

Joe Solomon is co-director of Solutions Oriented Addiction Response, an organization that previously offered clean syringes in exchange for contaminated ones in Kanawha County. Solomon said the CDC’s recommendations were precisely what SOAR once provided: co-location of essential services. But SOAR has ceased exchanging syringes in the face of the efforts to criminalize such work.

Solomon, who was recently elected to the Charleston City Council on a platform that includes measures to counter the region’s drug crisis, said the backlash against what’s known as harm reduction is “a public attack on public health.”

Epidemiologists agree: They contend sidelining syringe exchanges and the HIV testing they help catalyze may be exacerbating the HIV outbreak.

Fifty-six new cases of HIV were reported in 2021 in Kanawha County — which has a population of just under 180,000 — with 46 of those cases attributed to injection drug use. By the end of November, 27 new cases had been reported this year, 20 related to drug injection.

But the CDC’s “tip of the iceberg” assessment resonates with researchers and advocates. Robin Pollini, a West Virginia epidemiologist, has interviewed people in the county with injection-related HIV. “All of them are saying that syringe sharing is rampant,” she said. She believes it’s reasonable to infer there are far more than 20 people in the county who’ve contracted HIV this year from contaminated needles.

Pollini is among those concerned that testing initiatives aren’t reaching the people most at risk: those who use illicit drugs, many of whom are transient, and who may have reason to be wary of authority figures.

“I think that you can’t really know how many cases there are unless you have a very savvy testing strategy and very strong outreach,” she said.

Research shows sustained, well-targeted testing paired with access to clean syringes can effectively slow or stop an HIV outbreak.

In late 2015, the Kanawha-Charleston Health Department launched a syringe exchange, but in 2018 shuttered it after the city imposed restrictions on the number of syringes that could be exchanged and who could receive them. Then-Mayor Danny Jones called it a “mini-mall for junkies and drug dealers.”

When officials abandoned the effort, SOAR began hosting health fairs where it exchanged clean syringes for used ones. It also distributed the opioid overdose-reversing drug naloxone; offered treatment, referrals, and fellowship; and provided HIV testing.

But when the new state restrictions and local criminal ordinance took effect, SOAR ceased exchanging syringes, and attendance at its fairs plummeted.

“It’s indisputable and well established. It’s comprehensive; it’s inclusive,” Pollini said of research supporting syringe exchange. “You can’t even get funding to study the effectiveness of syringe service programs anymore because it’s established science that they work.”

Syringe exchanges are credited with tamping down an HIV outbreak in Scott County, Indiana, in 2015, after infections spread to more than 200 intravenous drug users. At that time, then-Gov. Mike Pence — after initially being resistant — approved the state’s first syringe service.

A team of epidemiologists worked with the Scott County Health Department on a study that determined that discontinuing the program would result in an increase in HIV infections of nearly 60%. But in June 2021, local officials voted to shut it down.

In Kanawha County, SOAR was making inroads. Interviews with numerous clients underscore that people felt safe at its health fairs. They could seek services anonymously. But most acknowledge that the promise of clean syringes was what brought them in.

Charleston-based West Virginia Health Right operates a syringe exchange that Dr. Steven Eshenaur, executive director of the Kanawha-Charleston Health Department, credits with helping reduce the number of new HIV diagnoses. But advocates say the imposed constraints — particularly the requirement to present an ID, which many potential clients don’t have — inhibit its success.

HIV diagnoses are up this year in nearby Cabell County and Pollini worries that without more aggressive action, an HIV epidemic could take root statewide. As of Dec. 1, 24 of West Virginia’s 55 counties had reported at least one positive diagnosis this year.

HIV is preventable. It’s also treatable, but treatment is expensive. The average cost of an antiretroviral regimen ranges from $36,000 to $48,000 a year. “If you’re 20 years old, you could live to be 70 or 80,” said Christine Teague, director of the Ryan White program in Charleston. That’s a cost of more than $2 million.

Saving lives and money, Pollini said, requires being both proactive — ongoing, comprehensive testing — and reactive — ramping up efforts when cases rise.

It also requires “meeting people where they are,” as it’s commonly put — building trust, which opens the door to education about what HIV is, how it’s spread, and how to combat it.

Teague said it also requires something more: addressing the fundamental needs of those on the margins; foremost, housing.

Parker agrees: “Low-barrier and transitional housing would be a godsend.”

But Teague questions whether the political will exists to confront HIV full force among those most at risk in West Virginia.

“I hate to say it, but it’s like people think that this is a group of people that are beyond help,” she said.

This story was published by Kaiser Health News on December 19, 2022. It is republished with permission.