As national eyes turn to HIV in WV, experts urge hope as advocates lament lack of clean syringes
‘It doesn’t have to be this way,’ said a national harm reduction expert who successfully changed Florida’s laws banning syringe service programs
Last week, the Presidential Advisory Council on HIV/AIDS held its 78th meeting at the University of Charleston in Charleston, W.Va. It was the first time PACHA visited Appalachia. (HIV.gov | Courtesy photo)
The Florida doctor who led the effort to change his state’s laws to support low-barrier harm reduction and syringe service programs has a message for West Virginia: “Have hope, because change is possible.”
In 2016, Dr. Hansel Tookes founded a pilot syringe service program in Miami-Dade County. The program proved so successful in reducing rates of HIV and other diseases known to spread from sharing needles that the deeply conservative state Legislature passed a law in 2019 expanding it statewide.
“If we could do that in Florida — and don’t get me wrong, it took a long time and a lot of work — but if it can be done there, it can be done anywhere, and that includes West Virginia,” Tookes said during a visit to the Mountain State last week.
The initial syringe service program, based in Miami, was created as the city was experiencing a cluster of HIV cases. Unlike in West Virginia, Tookes said, that cluster never advanced to an outbreak.
“And that is only because of the program we were able to run,” Tookes said. “Our Legislature understood that if the syringe service program weren’t there, we wouldn’t have been able to diagnose the HIV cases we were seeing. We wouldn’t have been able to get those patients into care, and now, I’m very proud to say, all my patients are virally suppressed.”
Tookes is one of more than 30 professionals who sit on the national Presidential Advisory Council on HIV/AIDS. Last week, the Council held its 78th meeting in Charleston — its first time coming to Appalachia. Tookes and his colleagues spent Tuesday out on site visits, where they watched service providers in the Kanawha Valley offer HIV testing and outreach for people who use drugs.
“What I’ve heard here have been some of the most devastating stories in the world when it comes to the limits on harm reduction and the toll they’re taking on people,” Tookes said. “It’s just devastating. That’s the only word that comes to mind, and even more so because it doesn’t have to be this way.”
Understanding West Virginia’s HIV cases and the laws that complicate response
In 2021, the Centers for Disease Control and Prevention dubbed Kanawha County as home to “the most concerning” HIV outbreak in the nation tied to injected drug use. That year, the county saw what many are hoping was a peak in new HIV diagnoses, with 46 out of 55 total cases reportedly tied to injected drug use, according to the state Department of Health and Human Resources.
Until 2018, the average number of annual HIV cases in Kanawha County was 14, with just two of those tied to IV drug use, according to DHHR. Between 2018 and 2022, the average number of cases involving intravenous drugs skyrocketed to 22 annually.
Simultaneously, Cabell County was experiencing its own cluster, reporting in 2019 the second-highest increase of the disease in the intravenous drug-using population in the country, just behind Scott County, Indiana. Epidemiologists studying the increased HIV rates in both Kanawha and Cabell said at the time that sequencing showed the virus strains — and therefore the outbreaks — were molecularly separate.
While HIV rates in Kanawha County have been falling over the last two years — to date in 2023 there have been 18 new HIV diagnoses, with half of those tied to IV drug use — the trend is in spite of state and local regulations that outlaw needs-based syringe service programs, not because of them.
Senate Bill 334 was passed by the Legislature in 2021 despite the CDC’s visit, numerous testimonies from experts and decades of research showing that needs-based, low-barrier syringe service programs are proven to reduce disease rates, limit needle litter and increase recovery rates for people who use drugs. The law makes it illegal to run such programs, and forces any harm reduction program that offers a syringe service to be licensed annually by the state. Those that don’t comply — or fail to operate with “the goal” of reaching a 1:1 return ratio for syringes — are subject to a $10,000 fine and potential legal injunctions.
On the local level in Charleston, the city council passed a law that takes the regulation further: any syringe service program operating in the city must collect at least 90% of the syringes it distributes or be subject to criminal misdemeanor charges as well as monetary fines.
Today, there is just one syringe service program running in Charleston, at West Virginia Health Right, a health clinic that predominantly serves underinsured people across the city. In August, Charleston City Council voted down a bid by another independent clinic, the Women’s Health Center of West Virginia, to operate an additional syringe program. The proposed program would have met all the standards set by both the city and the state, but that wasn’t enough to convince councilmembers.
Several critics of the proposed program said it wasn’t needed because of Health Right’s work, but harm reduction experts including Iris Sidikman, the harm reduction program coordinator at the Women’s Health Center, disagree.
The need in the region for clean syringes, they said, vastly outweighs the services currently available for people who use drugs.
In 2022, Health Right distributed 3,960 syringes to 142 individuals across its two locations on the East End and at Covenant House, according to annual reports filed with the state Office of Health Facility Licensure and Certification.
That’s less than 1% of the more than 617,000 syringes distributed to 331 people that same year by the LIGHT Project at Milan Puskar Health Right in Morgantown. Since 2018, Monongalia County has reported fewer than four HIV cases annually tied to drug use.
“We don’t and we haven’t had an HIV outbreak tied to IV drug use, but both Huntington and Charleston do, and it’s largely because they don’t have the same robust programs that we have,” said Laura Jones, executive director of Milan Puskar Health Right, which has no connection to Charleston’s West Virginia Health Right. “The only way to make harm reduction work — to have fewer cases of HIV, of hepatitis, of all these bad things — is to saturate a community with syringes, and unfortunately no one wants to hear that, but it is the truth.”
What harm reduction looks like now
At a health fair last Wednesday, dozens of people — including those who use drugs and their service providers — gathered in the gym behind Kanawha United Presbyterian Church in downtown Charleston.
Tables set up around the room and staffed by volunteers offered a myriad of supplies — including food, hygiene products, hand sanitizer, naloxone, Plan B, period products, reflective strips for backpacks and more — as well as services like veterinary care, free legal advice, voter registration and disease screenings.
Tookes, who arrived at the church after the day-long PACHA meeting at the University of Charleston, said this is what he’d been waiting to see and the people he’d been waiting to hear from while visiting West Virginia.
“When we were out yesterday, you know, I kept thinking ‘where are my people at?’” Tookes said. “Now, standing here, I’ve found them. This is phenomenal.”
Wednesday’s PACHA meeting included a number of panels featuring local service providers talking about the programs they run and the challenges they face in doing so. Despite the council — and its meetings — centering on HIV and the efforts to raise awareness for the disease and treatment while limiting spread, discussions of local services mostly centered around recovery and rehabilitation.
During the few instances where syringe service programs were discussed, members of the council expressed shock at some of what they heard. Upon learning that the state requires a near 1:1 return ratio, one member of the council reacted with a surprised “What?!” as she shook her head in disbelief. At another point, as they were discussing viral suppression of people diagnosed with HIV, Tookes called the state’s rates “horrific.”
“Everyone keeps telling you that we have these laws, but they’re not telling you what they are, so I’m going to,” said Cassie Province, who works as a case manager at Covenant House, before explaining the limits on services that are able to be provided in West Virginia to the PACHA members.
“We’re losing people every day, not just to HIV but to other drug related diseases too because we can’t get clean needles,” Province said. “The walls are just up so hard against us sometimes. These are people we care about, that we are trying every day to help, and we can’t get them the services they need.”
Tookes said he was surprised to hear so much of Wednesday’s meeting center around recovery.
“That’s a real concern,” he said. “Your outbreak here will not end unless you treat and serve people who are actively using drugs, and that doesn’t seem to be happening in the best way here.”
The mutual aid health fair held that evening was hosted by Solutions Oriented Addiction Response (SOAR), a grassroots nonprofit that ran a syringe service program in Charleston until 2021, when the city law passed and it was the subject of unfounded police scrutiny. Standing around the gym, people who use drugs weren’t shy about saying what their community needs and where local providers are falling short.
Daniel Quarequio, who uses mostly marijuana now but spent time years ago injecting both meth and crack, said Charleston needs to think more about how to lower barriers for people who use drugs, and specifically for those who inject them.
When he injected drugs, Quarequio overdosed four times and was saved by naloxone. He said he considers himself lucky to be here today, and even more so that it’s without a life altering disease like HIV.
Another man, who said he injects heroin regularly and opted not to give his name for fear of retaliation, lamented the lack of a syringe service in Charleston. He was a regular client at SOAR’s syringe program on the West Side. When asked if he uses the program at Health Right, he said he couldn’t because he didn’t have an ID.
His friend, who also withheld his name for fear of retaliation, said he’s never injected a drug in his life and doesn’t plan to.
“But even I know they need to get a clean needle exchange back up — we all know that,” he said.
Of nine people interviewed by West Virginia Watch who were attending the health fair for services Wednesday, everyone said they knew someone, if not several people, who had been diagnosed with HIV or hepatitis.
“Everyone is sharing needles, that’s just the way it is now and you know there are bad things that happen with that, but we don’t have another place to go,” said the first man.
Tookes let out a small sigh as he took in the health fair and the people attending it.
“This really is amazing — I want to do this in Miami because this is incredible, having all these people, all these services in one place. We need to replicate it,” he said.
In turn, he wants to see West Virginia replicate the success he’s seen take hold in Florida. He knows more than most that it’s possible.
“It takes building a coalition that includes people who are using drugs and strategy. You need to show up to legislative session after legislative session and find out what approach works best for the lawmakers you need to convince,” Tookes said. “I want to invite all the legislators who voted against syringe services to come to Florida and see what we do and what’s possible. To see what could happen if they just follow the science of what we know works.”
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