CHARLESTON, W.Va. — More than three years have passed since federal health officials arrived in central Appalachia to assess an alarming outbreak of HIV spread mostly between people who inject opioids or methamphetamine.

Infectious disease experts from the Centers for Disease Control and Prevention made a list of recommendations following their visit, including one to launch syringe service programs to stop the spread at its source. But those who’ve spent years striving to protect people who use drugs from overdose and illness say the situation likely hasn’t improved, in part because of politicians who contend that such programs encourage illegal drug use.

Joe Solomon is a Charleston City Council member and co-director of SOAR WV, a group that works to address the health needs of people who use drugs. He’s proud of how his close-knit community has risen to this challenge but frustrated with the restraints on its efforts.

“You see a city and a county willing to get to work at a scale that’s bigger than ever before,” Solomon said, “but we still have one hand tied behind our back.”

The hand he references is easier access to clean syringes.

In April 2021, the CDC came to Charleston — the seat of Kanawha County and the state capital, tucked into the confluence of the Kanawha and Elk rivers — to investigate dozens of newly detected HIV infections. The CDC’s HIV intervention chief 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.”

Now, despite attention and resources directed toward the outbreak, researchers and health workers say HIV continues to spread. In large part, they say, the outbreak lingers because of restrictions state and local policymakers have placed on syringe exchange efforts.

Research indicates that syringe service programs are associated with an estimated 50% reduction in HIV and hepatitis C, and the CDC issued recommendations to steer a response to the outbreak that emphasized the need for improved access to those services.

That advice has thus far gone unheeded by local officials.

In late 2015, the Kanawha-Charleston Health Department launched a syringe service program but shuttered it in 2018 under pressure, with then-Mayor Danny Jones calling it a “mini-mall for junkies and drug dealers.”

SOAR stepped in, hosting health fairs at which it distributed naloxone, an opioid overdose reversal drug; offered treatment and referrals; provided HIV testing; and exchanged clean syringes for used ones.

But in April 2021, the state legislature passed a bill limiting the number of syringes people could exchange and made it mandatory to present a West Virginia ID. The Charleston City Council subsequently added guidelines of its own, including requiring individual labeling of syringes.

As a result of these restrictions, SOAR ceased exchanging syringes. West Virginia Health Right now operates an exchange program in the city under the restrictions.

Robin Pollini is a West Virginia University epidemiologist who conducts community-based research on injection drug use. “Anyone I’ve talked to who’s used that program only used it once,” she said. “And the numbers they report to the state bear that out.”

A syringe exchange run by the health department in nearby Cabell County — home to Huntington, the state’s largest city after Charleston — isn’t so constrained. As Solomon notes, that program exchanges more than 200 syringes for every one exchanged in Kanawha.

A common complaint about syringe programs is that they result in discarded syringes in public spaces. Jan Rader, director of Huntington’s Mayor’s Office of Public Health and Drug Control Policy, is regularly out on the streets and said she seldom encounters discarded syringes, pointing out that it’s necessary to exchange a used syringe for a new one.

In August of last year, the Charleston City Council voted down a proposal from the Women’s Health Center of West Virginia to operate a syringe exchange in the city’s West Side community, with opponents expressing fears of an increase in drug use and crime.

Pollini said it’s difficult to estimate the number of people in West Virginia with HIV because there’s no coordinated strategy for testing; all efforts are localized.

“You would think that in a state that had the worst HIV outbreak in the country,” she said, “by this time we would have a statewide testing strategy.”

In addition to the testing SOAR conducted in 2021 at its health fairs, there was extensive testing during the CDC’s investigation. Since then, the reported number of HIV cases in Kanawha County has dropped, Pollini said, but it’s difficult to know if that’s the result of getting the problem under control or the result of limited testing in high-risk groups.

“My inclination is the latter,” she said, “because never in history has there been an outbreak of injection-related HIV among people who use drugs that was solved without expanding syringe services programs.”

“If you go out and look for infections,” Pollini said, “you will find them.”

Solomon and Pollini praised the ongoing outreach efforts — through riverside encampments, in abandoned houses, down county roads — of the Ryan White HIV/AIDS Program to test those at highest risk: people known to be injecting drugs.

“It’s miracle-level work,” Solomon said.

But Christine Teague, Ryan White Program director at the Charleston Area Medical Center, acknowledged it hasn’t been enough. In addition to HIV, her concerns include the high incidence of hepatitis C and endocarditis, a life-threatening inflammation of the lining of the heart’s chambers and valves, and the cost of hospital resources needed to address them.

“We’ve presented that data to the legislature,” she said, “that it’s not just HIV, it’s all these other lengthy hospital admissions that, essentially, Medicaid is paying for. And nothing seems to penetrate.”

Frank Annie is a researcher at CAMC specializing in cardiovascular diseases, a member of the Charleston City Council, and a proponent of syringe service programs. Research he co-authored found 462 cases of endocarditis in southern West Virginia associated with injection drug use, at a cost to federal, state, and private insurers of more than $17 million, of which less than $4 million was recovered.

Teague is further concerned for West Virginia’s rural counties, most of which don’t have a syringe service program.

Tasha Withrow, a harm reduction advocate in bordering rural Putnam County, said her sense is that HIV numbers aren’t alarmingly high there but said that, with little testing and heightened stigma in a rural community, it’s difficult to know.

In a January 2022 follow-up report, the CDC recommended increasing access to harm reduction services such as syringe service programs through expansion of mobile services, street outreach, and telehealth, using “patient-trusted” individuals, to improve the delivery of essential services to people who use drugs.

Teague would like every rural county to have a mobile unit, like the one operated by her organization, offering harm reduction supplies, medication, behavioral health care, counseling, referrals, and more. That’s an expensive undertaking. She suggested opioid settlement money through the West Virginia First Foundation could pay for it.

Pollini said she hopes state and local officials allow the experts to do their jobs.

“I would like to see them allow us to follow the science and operate these programs the way they’re supposed to be run, and in a broader geography,” she said. “Which means that it shouldn’t be a political decision; it should be a public health decision.”