The Mercer County Health Department voted Wednesday to close its needle exchange program due to strict requirements under a new state law, according to reporting from the Bluefield Daily Telegraph.
“Under the new law, we can’t comply,” Health Department Administrator Roger Topping told board members. He noted almost 50 requirements that had to be approved for a license to offer a harm reduction program that includes a needle exchange.
Mercer County health officials began the needle exchange in 2019.
The law in question, West Virginia Senate Bill 334, requires programs offering syringe exchanges to deny clean needles to those who don’t return used ones and only serve clients with state IDs.
Syringe exchanges are widely seen by public health experts as a key measure in preventing the spread of infectious diseases like HIV and hepatitis C among people who inject drugs.
An initiative to combat the rise of hepatitis C infections has launched in West Virginia.
News outlets report a five-year program called HepConnect launched Wednesday at West Virginia University. It was created by California-based biotech company Gilead Sciences.
Gilead Executive Director of Government Affairs Derek Spencer says HepConnect has three purposes: improving hepatitis C detection, reducing harm through education and improving health care infrastructure.
The opioid epidemic is partially responsible for the virus’ spread. Spencer says 2.4 million people in the U.S. are living with hepatitis C and 50 percent aren’t aware they’re infected. He says the Appalachian region saw a 300 percent increase in the virus between 2006 and 2012.
About $11.3 million is being dedicated to HepConnect, which already launched in Indiana, Kentucky and Tennessee. It’s launching in North Carolina next week.
Drug maker Gilead Sciences will give $11.3 million to help prevent and treat hepatitis C in Kentucky, Indiana, West Virginia, Tennessee and North Carolina. That money is part of a five-year project aimed at a region that’s been hit hard by the viral disease.
About 43,000 people in Kentucky have hepatitis C, according to recent estimates from Emory University.
A 2017 report showed Kentucky, Tennessee, West Virginia and Indiana are among seven states with rates of hepatitis C infections that are twice the national rate. Nationwide, the number of new hepatitis C cases increased by about 300 percent from 2010 to 2015, according to the Centers for Disease Control and Prevention.
That increase was mainly driven by the use of heroin and other injection drugs. And that increase in incidence also led to more deaths from diseases of the liver that develop because of hep C. About 300 Kentuckians died in 2016 from causes related to hep C.
The money from Gilead will go toward programs that give people who use drugs clean needles and syringes, hep C screenings, and treatment. It may also go to health education about hep C and reducing the stigma that patients might face in seeking care.
Harm Reduction
Gov. Matt Bevin spoke at the event Thursday announcing the funding. He addressed people who may object to providing clean needles, screening and treatment for those who contracted hepatitis C from drug use.
Credit Courtesy Gilead Sciences
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Kentucky Gov. Matt Bevin at an event announcing the donation.
“For the crass, money-pinching people who only care about what it’s costing them and their tax dollars, think about this: the vast majority of people with hep C are on some sort of governmental assistance,” Bevin said, noting that the cumulative costs for medical services for patients with hep C that is left untreated can exceed $200,000.
“We think we can’t afford to deal with this, we can’t afford not to deal with it,” he said.
The national Harm Reduction Coalition and Gilead will hold meetings with stakeholders in states to better assess needs in specific communities. Harm Reduction Coalition Capacity Building Services Director Emma Roberts said her group will put out requests for proposals to get a chunk of the money in the fall, with awards expected to flow shortly after.
“We’re really going to let the needs dictate that specific funding piece and organizations will submit budgets,” Roberts said.
Roberts said an example of a project could be a syringe exchange that might expand services into HIV and hep C testing.
“If it’s a health department that’s already providing the testing services, how can they maybe integrate a syringe service program?” Roberts said. “Because this is new for a lot of people in this region, they’re still learning about the best practices and the ways to do this.”
In 2017 Kentucky’s Medicaid program eliminated a requirement that enrollees who needed hep C treatment must first be drug-free. Roberts with the Harm Reduction Coalition said that’s a pretty common requirement in other states. This, she said, just leads to greater spread by denying service to people in addiction.
Gilead brought the first hep C treatment, Sovaldi, to market in 2014. Even with Medicaid paying for treatment, the drug is expensive. Sovaldi cures most patients but at a steep price: $55,000 to $95,000 for the course of treatment that lasts about a year. Last fall the drug company announced it would sell a generic version that would cost $24,000.
Last year Gilead also donated $50 million in its hep C treatment to the University of Kentucky, which received a federal grant to decrease the rate of hep C in Perry County.
Loud dance music pours out of a historic church in downtown Bluefield, West Virginia, around 7 on a Friday evening. About 30 people are eating barbeque, beans and chicken at a newly formed support group for lesbian, gay bisexual, transgender and queer people.
As the guests grab their food and have a seat, Darryl Cannady stands inside the echoey church talk. He isn’t a preacher; he’s the executive director of a non-profit called South Central Educational Development, which has its headquarters inside this old church building. Tonight’s event is aimed at adults, though there is one high school student in attendance.
The guests have all received bags with information about how to prevent sexually transmitted diseases.
Credit courtesy Darryl Cannady
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Darryl Cannady is the executive director of South Central Educational Development
“Read the information. We provided you with lots of condoms and lubrications. And remember, safe sex is the best sex,” Cannady says, in a thick gravelly voice as he begins to talk about the need for more people to get tested for HIV.
The atmosphere in this room is quite different from a doctor’s office. People are laughing and singing along. One person, a drag queen, gets up to dance, and the room erupts in applause.
Credit Darryl Cannady, South Central Educational Development
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The south Central Educational Development building is located inside a former church in downtown Bluefield, W.Va.
Cannady is hosting this meeting as a way to talk with the LGBTQ community about the increasing risk of hepatitis and HIV in southern West Virginia, and other parts of Appalachia. The risks are increasing because of high rates of drug use, combined with poor access to health care. On this night, Cannady’s organization is also hosting free HIV testing, here in the church building.
“Prevention is number one. I think you got to catch it before it starts,” Cannady says. “So if you’re not doing anything preventative when you have an outbreak you can say how did that happen. You know how it happened you didn’t do anything to stop it.”
Someone who agrees with Cannady is Dr. Gordon Smith, a professor at the West Virginia University School of Public Health, who is studying the risk of an outbreak of HIV in southern W.Va. “Unfortunately, because the testing is so poor, we could be right in the middle of it and we wouldn’t even know it.”
Credit WVU
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Dr. Gordon Smith
Smith’s team received a $1 million grant last year from the National Institute of Drug Abuse, a part of the National Institutes of Health, the Centers for Disease Control and the Appalachian Regional Commission to help increase surveillance and prevention of HIV and hepatitis C in southern West Virginia.
Credit WVU
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Dr. Judith Feinberg
The other lead researcher with the project is Dr. Judith Feinberg.
“You know ideally it should have been done five years ago, because you could have prevented HIV and you could have curtailed the spread of diseases like Hepatitis C,” she says.
Hepatitis C, like HIV is spread by sharing bodily fluids, either through needles or sexually.
Feinberg says her group plans on partnering with community-based organizations, like Cannady’s organization in Bluefield, to do more testing and outreach.
Cannady says he’s on board with the partnership, but he’s concerned that the WVU researchers are not going to fund his organization’s efforts. “We’re not staffed large enough to actively go out and address this head on with the community as we used to do.”
Cannady used to do more HIV testing and prevention in southern West Virginia. But then, in 2009, his organization lost funding it had been getting from the Department of Health and Human Resources to do HIV prevention.
It wasn’t just his organization. About 10 years ago, the CDC began reducing funding for prevention and surveillance of HIV in states with a low prevalence of people who’ve tested positive for the disease.
West Virginia took some of the biggest cuts. One result has been the reduction of resources available for local, community-based organizations, says Dr. Rahul Gupta, Commissioner of DHHR’s Bureau for Public Health.
“Since 2009, HIV prevention in West Virginia has seen a reduction of about a million dollars from the CDC,” Gupta says.
“Most funding is directed to the prevention activities that are most likely to have significant and lasting results on the HIV epidemic,” A CDC representative said in a statement.
But that strategy doesn’t always work to prevent unexpected outbreaks.
Back in 2015, Scott County, Indiana, an area that hadn’t previously been a high prevalence area, experienced a massive HIV outbreak. CDC officials were quite surprised by this epidemic, recalls Dr. John Brooks, a researcher with the CDC’s Division of HIV/AIDS Prevention. “And we marshaled a lot of resources not only to stop the outbreak from growing, and then to better understand what happened there and how we can prevent it from happening elsewhere,” Brooks says.
Brooks was one of the lead authors of a 2016 CDC study that concluded many of the nation’s most vulnerable counties are in Appalachia. Now, in order to prevent more unexpected outbreaks of HIV, Brooks says the CDC is looking at shifting more of their funding back to rural communities, because the opioid epidemic is creating a higher risk here.
West Virginia will receive an 18 percent increase for HIV prevention and surveillance next year, as part of a new effort by the CDC. It will be the first increase in funding for HIV prevention the state has seen in 10 years.
Exactly how much this funding will trickle down to community-based organizations, though, is unknown.
The cost of treating hepatitis C has dropped some in the past year or so. But price – drugs can list around 100,000 for a course – is still a barrier and can put a big burden on insurance programs like Medicaid, which has to make tough decisions about who qualifies for the lifesaving drugs.
Regional Appalachian pharmacy chain Fruth got a grant in 2016 from the National Association of Chain Drug Stores to begin offering hepatitis C testing for free. Hepatitis C is a virus spread by contact with infected blood that can cause cancer or severe liver damage if untreated. Blood transfusions that happened before 1992 and unsterile tattoos and piercings also put people at risk for hepatitis C. But by far the largest factor in the disease’s spread is intravenous drug use — drugs like heroin.
“We see this as a problem in the community, this is our community that we serve,” said Jamie Bennett, clinical services leader at Fruth. Bennett is talking about the fact that West Virginia has some of the highest rates of hepatitis C in the nation.
There are 17 approved drugs for hepatitis C treatment, but a handful of the newer ones, such as Harvoni, Sovaldi and Zepatier, are much more effective than the others. They are also way more expensive.
“Currently for some of the medications, it’s almost close to 100,000 [dollars] for treatment for one person depending on the length of treatment,” she said. “So it’s really gone up of the last couple of years.”
Most people don’t pay that full price, though, especially in West Virginia where about a third of the population is on Medicaid. Jamie Bennett said the vast majority of hepatitis C prescriptions they fill are for Medicaid patients and the hepatitis C medication they fill the most of is Harvoni, made by Gilead.
Previously, Medicaid patients had to have a fibrosis, or liver damage, score of three out of four in order for West Virginia Medicaid to pay for treatment. In July, WV Medicaid moved that score to a two out of four.
“The companies are giving bigger rebates on their drugs,” explained Vicki Cunningham, director of pharmacy services for West Virginia Medicaid.
Cunningham wouldn’t say how much reimbursement WV Medicaid got from Gilead. And remember, West Virginia requires a liver damage score of two or higher for Medicaid to cover treatment. But we do have a ballpark.
In an emailed statement, Gilead said that on average, the price Medicaid pays per bottle is now less than $10,000 for states that provide open access to all patients, regardless of liver damage score. They did not respond to several inquiries for further clarification.
“The retail price looks the same if they were looking at it as a cash paying customer but for insurance companies the price has come down a bit,” said Cunningham.
According to Gilead, the actual price paid across all payers has come down by more than half since 2014.
When asked why WV Medicaid doesn’t treat everyone who tests positive for hepatitis C, Cunningham said, “We just can’t afford to treat everyone.”
And sometimes, she said, people heal spontaneously and don’t need to take the drugs at all. Research show this is true, but West Virginia University liver doctor Kevin Mullen said waiting can be risky.
“You can develop cancer of the liver, [if you wait] which is typically seen in patients that already have cirrhosis and have had it for quite a while,” he said. “So your risk of developing cancer is starting to rise as soon as you get to cirrhosis stage.”
But getting to that stage can take anywhere from one to 20 years, Mullen said.
“So the idea was to only treat people who were in imminent danger of dying from their hepatitis C so you get them on treatment when their disease is more advanced but the idea is they need it more at this point,” he said. “So we aren’t going to worry about the people who have very little fibrosis or scarring because they aren’t going to get in trouble for years. That’s not the way we usually do medicine by the way but this is the rationale behind making sure they have a lot of fibrosis before we treat them.”
And if the drugs were more affordable or accessible, Mullen said it’s possible, if everyone were to be treated and treated early, to eradicate hepatitis C.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.
As the opioid epidemic continues to devastate lives throughout Appalachia, health officials are reporting a spike in “second wave” epidemics like Hepatitis C. One way to combat the epidemic may be more needle exchange programs like the one at the Kanawha-Charleston Health Department.
Once a month, Jeff Crist, an employee of the free clinic West Virginia Health Right, goes there to gently waylay participants as they walk in.
“Would you like to get tested for hep. C today?” he asks patients over and over again.
Most people say no or that they already have been tested and are positive before heading down the hall.
“There’s on average 225-250 people who come through on Wednesday,” Crist said. “When I’m here, and I’m not here every week, I average about 25 tests. And of those about half are positive.”
West Virginia Health Right has been partnering with the county health department for about 6 months to provide rapid hepatitis C testing.
The Risk of Untreated Hepatitis C
Credit Kara Lofton / West Virginia Public Broadcasting
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West Virginia Public Broadcasting
An IV drug user show his arms at the needle exchange clinic in Charleston
“The other thing about hepatitis C is that it’s now the number one infectious killer in the United States,” said Dr. Michael Brumage, executive director of the Kanawha County Health Department. “More people die from hepatitis C than any other infectious cause.”
Untreated hepatitis C can cause scar tissue to form in the liver, causing serious damage, jaundice and cancer.
From 2010-’15, cases of acute hepatitis C infection increased roughly threefold nationally, according to the Centers for Disease Control and Prevention, with the biggest increases occurring among young, white people living in rural areas – particularly Appalachia. West Virginia’s 2015 rates were more than four times the national average.
The CDC attributes the spike to IV drug use.
IV Drug Use and Secondary Epidemics
“I was an IV user for 10 years and I contracted it through using needles and sharing needles with other people,” said Lindsay Hawkins, a woman in her late 20s.
“You know for a fact if you’re going to use needles to get high then 98 percent chance you’re going have hepatitis or you’re going to catch HIV,” she said. Hawkins said she was aware of the high risk of contracting an infectious disease, but that addiction took over her life.
Hawkins is from Fayette County and the needle exchange in Charleston opened after she had already entered rehab. She said if there had been one closer to her home, she definitely would have used it.
“When you’re on the street, it’s really hard to find needles,” she said. “So you have to keep reusing needles and using one needle to fix another needle to make a good needle. It’s insanity when you look back on it.”
Needle Exchange Programs
“We know that syringe exchange programs are very effective to reduce the spread of hepatitis C,” Brumage said. “We are also working with a pharmaceutical company that has a grant program that will allow us to test for hepatitis B, C and HIV, so we can do it on a larger scale than we are currently doing it.”
Sarah Embrey is a pharmacist at the Charleston University School of Pharmacy. She said her job is to not only help facilitate the needle exchange, but to help educate people on how hepatitis C is contracted.
“We had a patient a few weeks ago that didn’t really understand how hepatitis and HIV Is transmitted,” she said. “He thought it was something almost like chicken pox, where it would reactivate within himself. And so he was concerned that he would give himself hepatitis, and we tried to explain to him that that’s not really possible — it’s only through sharing with other people who are already infected.”
Embrey said for a lot of the patients she talks to, hepatitis C isn’t that big of a deal. That may be because most clinics won’t treat patients for hepatitis C, unless they have stopped using IV drugs for 6 months or more.
The good news is if they do stop using, hepatitis C isn’t a death sentence anymore. The bad? The drugs to treat hepatitis are incredibly expensive and the cost can be prohibitive, although Health Right does offer the drugs for free to qualified patients.
Lindsay Hawkins, the mother of four, caught a break. While in rehab, she retested. As is the case with about a quarter of those studied, she found out her hepatitis had gone into spontaneous remission.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.
