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"A better than nothing response:" Amid an HIV outbreak in WV, needle exchange rules increase risk

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Cabell County wasn’t prepared.

Health officials have warned for years that West Virginia should prepare for an HIV outbreak, in large part because of injection drug use. They recommended harm reduction programs that provide new syringes to people who inject drugs to reduce the risk of transmission through needle-sharing. The Trump administration’s surgeon general Dr. Jerome Adams has endorsed that recommendation.

Decades of research and experiences from other states and countries demonstrate that these programs reduce the risk of HIV and Hepatitis C. That research and those experiences also demonstrate how to run effective programs and prevent people from contracting a potentially fatal disease.

But in spring of 2018 – around the same time Charleston’s needle exchange program closed under political pressure – Cabell County implemented new rules for its program. Those rules flew in the face of what those decades of research show best works to prevent disease.

Now, more than 80 people have been diagnosed. Health officials have said that one death was “associated” with the outbreak. And people working with the population have said it’s been difficult to get some of those diagnosed, primarily those who are homeless and those who inject drugs, into treatment.

If they don’t, more people will die.

Just around the block from the Huntington police station and down the street from a homeless day shelter, a group of men sat in the mid-90s heat. Huddled under the shade of a storefront as summer lingered into fall, they agreed they knew many at-risk people not using the exchange.

The men said many homeless people lack ID cards, while others worry police will ask for a list of names of exchange participants.

“Nobody wants their name on that list,” said one man, who asked to remain anonymous.

“Who knows what they do with it?” he said. “They feel like they’re being trapped.”

In recovery from alcoholism, Bill Friary visits the Huntington City Mission for camaraderie. He understands the fear of police.

“They go after the ones they can catch – the small fish,” he said.

Danny McKnight said he saw eight people sharing one needle on the street the day before. He gets it. When he was using, he lost all hope. Although he does notice some people taking more precautions.

“But it’s too late,” he said.

Two counties open needle exchanges, then pull back in face of political pressure

In 2015, the federal Centers for Disease Control and Prevention warned that 220 counties in the country were at high risk for an outbreak. Of those, a disproportionate share, 28, were in West Virginia, a state with 55 counties.

To reduce the risk, both Kanawha and Cabell county officials were among the first in the state to open needle exchanges at their health departments in 2015. Along with syringe exchanges, those harm reduction programs also offered other services, such as access to recovery coaches and the opioid antidote drug naloxone, also known by its brand name Narcan.

In 2017, southern West Virginia experienced a 57-person HIV outbreak, beginning in Raleigh, Wyoming and Summers counties. While that outbreak was tied to sexual activity between men, public health officials have since reported injection drug use in the population. Both Raleigh and Wyoming lacked harm reduction programs at the time. Summers and Monroe continue to lack a syringe exchange.

In 2018, Charleston city officials claimed that the needle exchange was bringing crime and needle litter to the city. Research has shown that needle exchanges aren’t associated with increased needle litter or crime – although drug use itself may be.

Even so, the controversy became the central issue during a mayoral race and divided the capital city. The police chief sought to implement new rules that public health officials said would block people from coming to the program. And in March 2018, Charleston closed its needle exchange program under political pressure.

Meanwhile, Cabell-Huntington Health Department officials implemented some of the rules. They began limiting patients to 40 syringes, told them they must return the same number of needles they received, and required them to prove Cabell County residency.

Cabell health officials repeatedly declined to comment on the controversy an hour away in Charleston. They said public officials weren’t threatening closure, but instead said they were accommodating “community expectations.”

According to the Cabell-Huntington Health Department’s data, participation in the program dropped dramatically in the months following.

In April 2018, the needle exchange served 1,050 patients. The number steadily declined each month, and by December the number of clients was down by more than half, to 463.

Three months later, in March when health officials first reported they’d detected an HIV increase, the number was still down, to 791.

That month, Dr. Michael Kilkenny, director of the health department, reported that 28 people, primarily people who use drugs and homeless people, had been diagnosed with HIV, in a county that typically sees about eight new cases a year.

Public health experts have noted that such outbreaks often don’t remain within the most at-risk population. HIV, which is treatable, can be spread not only through needle-sharing, but also through sex and from mother to baby.

“Diseases do not pay any attention to county lines ... or state boundaries”

Amanda Coleman, executive director of the Cabell-Huntington Coalition for the Homeless, noted that homeless people in Wayne County, which her program serves, wouldn’t be able to use the Cabell County exchange because of the residency requirement.

“Diseases do not pay any attention to county lines or rivers or state boundaries or anything like that,” she said, “so if we’re truly trying to protect a population of people from, for instance, HIV or Hep C, then we need to capture everyone within the area that has the potential to be exposed.”

Research has also found that the most effective syringe exchange programs allow patients to remain anonymous. According to a best practices guide developed by experts from Johns Hopkins University, the Harm Reduction Coalition, Yale University, the New York City Department of Health and Mental Hygiene and others, requiring identifying documents will discourage people who use drugs from using the program “if they believe that association will increase the likelihood they are identified as an illicit drug user by any authorities.”

Many local homeless people mistakenly believed they needed a government identification card to receive services at the syringe exchange. According to Coleman, they don’t. They do, however, need to sign a release, and then health department workers send an email to homeless program workers to check if that person has received homeless services in Cabell County. They’re then given badges and a number.

So, people who haven’t accepted those services could be turned away.

Coleman said that most of those who don’t stay in shelters would still have a record of receiving homeless services in Cabell County because her program employs outreach workers to attempt to help local homeless. But she said that some people with substance use or mental health problems are less likely to accept help.

According to Jewsenda, a former nurse who sleeps by the train tracks in Huntington, some homeless people can’t prove they’ve received homeless services, because some homeless programs also require ID. Several homeless people also noted that their belongings are often stolen.

After making adjustments, Kanawha health officials reported an uptick in HIV

Jewsenda, the “camp mom,” has gotten so used to the passing trains, she can’t sleep without hearing them. She is part of a group of about seven homeless people, her “street family,” who sleep by the tracks. Many local homeless said they don’t speak to their blood relatives.

Whom would they ask for help, if they wanted to get clean?

“No one,” said 32-year-old Kacie, who chose to go by her middle name.

Jewsenda responded to Kacie: “I’d ask you.”

The women sat cross-legged on the hot concrete parking lot, cuddling their pet kittens and keeping watch over their duffel bags of belongings.

Jewsenda remembers being interviewed about homelessness when she lived in Charleston. Domestic violence brought her to Huntington.

She recently brought some needles there.

One girl, Jewsenda said, cried. She’d been using the same needle for four months.

“She was like, ‘Oh my God, you’re a lifesaver.’”

Although the Kanawha- Charleston Health Department’s syringe exchange closed, a local free clinic, Health Right, continues to operate a smaller and more restrictive exchange. Earlier this month, Kanawha health officials reported an uptick in HIV spread through needle-sharing – six people so far in 2019.

The most effective harm reduction programs don’t set arbitrary limits

Dr. Michael Kilkenny, director of the Cabell-Huntington Health Department, acknowledged the program isn’t following practices.

“Community responsiveness is important to being open,” he said. “It’s also important to best practices, if we can achieve that. I don’t know a program that does best practices, but if I did, it would be because their community agrees with that.”

He said research “would indicate that the model we’re operating is going to give us an intermediate response – a less than ideal, but a better than nothing response.”

Research shows that the most effective harm reduction programs don’t set arbitrary limits on syringes. They provide syringes based on patient need, aiming to provide a clean needle for each injection and knowing that sometimes needles are confiscated by police, lost or stolen.

While Kilkenny acknowledged that “one-to-one” exchanges, which require one syringe returned for one syringe distributed, aren’t as effective, he said clients understand the request to bring them back.

“There are people who misunderstand substance use disorder as if the brain stops functioning,” he said. “People are people and you can talk to people.”

He disputed the notion that the health department keeps a list of names.

“It’s as anonymous as you can be and still require proof of residency,” he said.

Michelle Perdue, harm reduction coordinator, said city officials, law enforcement, and the Board of Health were all involved in changing the rules at the exchange.

“I don’t think it was based on nay-sayers,” she said. “I think it was just sitting down with community leaders and trying to figure out what was best to fit the needs of the community because every program looks different throughout the United States.”

When presenters from Pittsburgh first provided harm reduction education to Morgantown organizers, Caitlin Sussman, a social worker with Milan Puskar Health Right, said she was hesitant.

Now, Health Right’s program follows best practices – it provides syringes based on need, and doesn’t require participants to prove residency or provide identification. They’ve seen no uptick in HIV.

“We don’t want to have programs that just help the most functional of drug users,” Sussman said.

She noted that change comes in increments, and that according to the federal Centers for Disease Control and Prevention, people who use harm reduction programs are three times more likely to stop using drugs.

“We do need some leadership,” she said, “because unfortunately, to do harm reduction, you have to stick your neck out a little bit.”

“If it weren’t for that place, I’d be using dirty needles all the time.”

Many local homeless in Huntington also had good things to say about the syringe exchange program.

Standing outside of the Mission around mealtime, Thomas Devitt, 30, is drenched in sweat. When he was using, he went to the exchange.

One worker there agreed to drive him to rehab. But he wanted to get high before he left.

The worker said: I’ll give you a ride, buy you food and cigarettes, but I’m not going to wait for you to get high.

“He basically did for me what I couldn’t do for myself.”

Outside a Huntington day shelter, Kaitlin, 27, said one of the women at the Cabell health department is going to help her find furniture for a new apartment.

“It’s always the same people,” she said. “They don’t judge.”

Sabrina, 31, is worried about contracting HIV.

“If it weren’t for that place, I’d be using dirty needles all the time and sharing them,” she said. “Now, tell me how that would make the problem go away.”

Forum on homelessness and addiction was held at church high on a hill

Later that day, politicians in Huntington hosted a forum in Huntington on homelessness and addiction inside a West Virginia version of a megachurch. Attendees drove up a winding road to the top of a hill, a mile and a half from the Huntington City Mission, to get to Christ Temple Church.

During the question and answer portion, Aaron Llewellyn, of Huntington, pointed out that the venue was inaccessible to homeless people.

Kelli Sobonya, former legislator and Cabell County commissioner, said the event was to find collective solutions to the drug crisis and related issues, such as property crime.

The sound system carried the panelists’ voices – public officials, advocates, law enforcement – to hundreds of Huntington residents, sitting in soft blue seats. An American flag hung behind them.

Sobonya said she was hoping “we can come together and see things through each other’s eyes.”

Earlier that day at the day shelter, many local homeless said they hadn’t heard about the forum.

But they talked about similar problems, and they talked about people who say the needle exchange brings people who use drugs to Huntington.

Well, so do the drugs, Sabrina responded.

“The war on drugs – they’re losing it,” Kaitlin said. “For what?”

Sabrina said some at-risk people don’t go to the exchange because they don’t want to be looked at as a “junkie.” Such judgments, she said, don’t bother her.

“Everybody has an opinion,” she said.

She is soft-spoken. She’ll only agree to a picture after she puts on sunglasses, to cover her eyes.

Email: ebeck@register-herald.com; follow on Twitter @3littleredbones

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