CHARLESTON, http://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 2023, 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.”

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Gavinn McKinney loved Nike shoes, fireworks, and sushi. He was studying Potawatomi, one of the languages of his Native American heritage. He loved holding his niece and smelling her baby smell. On his 15th birthday, the Durango, Colorado, teen spent a cold December afternoon chopping wood to help neighbors who couldn’t afford to heat their homes.

McKinney almost made it to his 16th birthday. He died of fentanyl poisoning at a friend’s house in December 2021. His friends say it was the first time he tried hard drugs. The memorial service was so packed people had to stand outside the funeral home.

Now, his peers are trying to cement their friend’s legacy in state law. They recently testified to state lawmakers in support of a bill they helped write to ensure students can carry naloxone with them at all times without fear of discipline or confiscation. School districts tend to have strict medication policies. Without special permission, Colorado students can’t even carry their own emergency medications, such as an inhaler, and they are not allowed to share them with others.

“We realized we could actually make a change if we put our hearts to it,” said Niko Peterson, a senior at Animas High School in Durango and one of McKinney’s friends who helped write the bill. “Being proactive versus being reactive is going to be the best possible solution.”

Individual school districts or counties in California, Maryland, and elsewhere have rules expressly allowing high school students to carry naloxone. But Jon Woodruff, managing attorney at the Legislative Analysis and Public Policy Association, said he wasn’t aware of any statewide law such as the one Colorado is considering. Woodruff’s Washington, D.C.-based organization researches and drafts legislation on substance use.

Naloxone is an opioid antagonist that can halt an overdose. Available over the counter as a nasal spray, it is considered the fire extinguisher of the opioid epidemic, for use in an emergency, but just one tool in a prevention strategy. (People often refer to it as “Narcan,” one of the more recognizable brand names, similar to how tissues, regardless of brand, are often called “Kleenex.”)

The Biden administration last year backed an ad campaign encouraging young people to carry the emergency medication.

Most states’ naloxone access laws protect do-gooders, including youth, from liability if they accidentally harm someone while administering naloxone. But without school policies explicitly allowing it, the students’ ability to bring naloxone to class falls into a gray area.

Ryan Christoff said that in September 2022 fellow staff at Centaurus High School in Lafayette, Colorado, where he worked and which one of his daughters attended at the time, confiscated naloxone from one of her classmates.

“She didn’t have anything on her other than the Narcan, and they took it away from her,” said Christoff, who had provided the confiscated Narcan to that student and many others after his daughter nearly died from fentanyl poisoning. “We should want every student to carry it.”

Boulder Valley School District spokesperson Randy Barber said the incident “was a one-off and we’ve done some work since to make sure nurses are aware.” The district now encourages everyone to consider carrying naloxone, he said.

Community’s Devastation Turns to Action

In Durango, McKinney’s death hit the community hard. McKinney’s friends and family said he didn’t do hard drugs. The substance he was hooked on was Tapatío hot sauce — he even brought some in his pocket to a Rockies game.

After McKinney died, people started getting tattoos of the phrase he was known for, which was emblazoned on his favorite sweatshirt: “Love is the cure.” Even a few of his teachers got them. But it was classmates, along with their friends at another high school in town, who turned his loss into a political movement.

“We’re making things happen on behalf of him,” Peterson said.

The mortality rate has spiked in recent years, with more than 1,500 other children and teens in the U.S. dying of fentanyl poisoning the same year as McKinney. Most youth who die of overdoses have no known history of taking opioids, and many of them likely thought they were taking prescription opioids like OxyContin or Percocet — not the fake prescription pills that increasingly carry a lethal dose of fentanyl.

“Most likely the largest group of teens that are dying are really teens that are experimenting, as opposed to teens that have a long-standing opioid use disorder,” said Joseph Friedman, a substance use researcher at UCLA who would like to see schools provide accurate drug education about counterfeit pills, such as with Stanford’s Safety First curriculum.

Allowing students to carry a low-risk, lifesaving drug with them is in many ways the minimum schools can do, he said.

“I would argue that what the schools should be doing is identifying high-risk teens and giving them the Narcan to take home with them and teaching them why it matters,” Friedman said.

Writing in The New England Journal of Medicine, Friedman identified Colorado as a hot spot for high school-aged adolescent overdose deaths, with a mortality rate more than double that of the nation from 2020 to 2022.

“Increasingly, fentanyl is being sold in pill form, and it’s happening to the largest degree in the West,” said Friedman. “I think that the teen overdose crisis is a direct result of that.”

If Colorado lawmakers approve the bill, “I think that’s a really important step,” said Ju Nyeong Park, an assistant professor of medicine at Brown University, who leads a research group focused on how to prevent overdoses. “I hope that the Colorado Legislature does and that other states follow as well.”

Park said comprehensive programs to test drugs for dangerous contaminants, better access to evidence-based treatment for adolescents who develop a substance use disorder, and promotion of harm reduction tools are also important. “For example, there is a national hotline called Never Use Alone that anyone can call anonymously to be supervised remotely in case of an emergency,” she said.

Taking Matters Into Their Own Hands

Many Colorado school districts are training staff how to administer naloxone and are stocking it on school grounds through a program that allows them to acquire it from the state at little to no cost. But it was clear to Peterson and other area high schoolers that having naloxone at school isn’t enough, especially in rural places.

“The teachers who are trained to use Narcan will not be at the parties where the students will be using the drugs,” he said.

And it isn’t enough to expect teens to keep it at home.

“It’s not going to be helpful if it’s in somebody’s house 20 minutes outside of town. It’s going to be helpful if it’s in their backpack always,” said Zoe Ramsey, another of McKinney’s friends and a senior at Animas High School.

“We were informed it was against the rules to carry naloxone, and especially to distribute it,” said Ilias “Leo” Stritikus, who graduated from Durango High School last year.

But students in the area, and their school administrators, were uncertain: Could students get in trouble for carrying the opioid antagonist in their backpacks, or if they distributed it to friends? And could a school or district be held liable if something went wrong?

He, along with Ramsey and Peterson, helped form the group Students Against Overdose. Together, they convinced Animas, which is a charter school, and the surrounding school district, to change policies. Now, with parental permission, and after going through training on how to administer it, students may carry naloxone on school grounds.

Durango School District 9-R spokesperson Karla Sluis said at least 45 students have completed the training.

School districts in other parts of the nation have also determined it’s important to clarify students’ ability to carry naloxone.

“We want to be a part of saving lives,” said Smita Malhotra, chief medical director for Los Angeles Unified School District in California.

Los Angeles County had one of the nation’s highest adolescent overdose death tallies of any U.S. county: From 2020 to 2022, 111 teens ages 14 to 18 died. One of them was a 15-year-old who died in a school bathroom of fentanyl poisoning. Malhotra’s district has since updated its policy on naloxone to permit students to carry and administer it.

“All students can carry naloxone in our school campuses without facing any discipline,” Malhotra said. She said the district is also doubling down on peer support and hosting educational sessions for families and students.

Montgomery County Public Schools in Maryland took a similar approach. School staff had to administer naloxone 18 times over the course of a school year, and five students died over the course of about one semester.

When the district held community forums on the issue, Patricia Kapunan, the district’s medical officer, said, “Students were very vocal about wanting access to naloxone. A student is very unlikely to carry something in their backpack which they think they might get in trouble for.”

So it, too, clarified its policy. While that was underway, local news reported that high school students found a teen passed out, with purple lips, in the bathroom of a McDonald’s down the street from their school, and used Narcan to revive them. It was during lunch on a school day.

“We can’t Narcan our way out of the opioid use crisis,” said Kapunan. “But it was critical to do it first. Just like knowing 911.”

Now, with the support of the district and county health department, students are training other students how to administer naloxone. Jackson Taylor, one of the student trainers, estimated they trained about 200 students over the course of three hours on a recent Saturday.

“It felt amazing, this footstep toward fixing the issue,” Taylor said.

Each trainee left with two doses of naloxone.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.