Appalachia Has 'Most Alarming' HIV Outbreak In Nation. The Proposed Solutions Are Controversial
Decades after HIV was first discovered, there’s still discrimination. In this week’s episode of Inside Appalachia, we look back at some of the stories our newsroom has reported over the past three years about harm reduction programs. We'll look back at why a needle exchange program in Charleston, West Virginia, was shut down in 2018 amid public outcry. Three years later, the city is now at the center of the most alarming outbreak of HIV in the nation.
We'll also hear from several people here in Appalachia who are living with HIV. Elena Eimes recalled being harassed at Walmart, after a customer learned she has HIV. “That hurt so bad. [I was] So embarrassed. And that woman really thought she was warning everybody,” Eimes said.
“The biggest fear that someone with this infection has is doing it alone,” said Carl, who lives in Raleigh County, West Virginia. He said it’s been a struggle telling friends and family he has HIV because of the stigma against people with the disease.
In This Episode:
- Diving Deep into Harm Reduction Part 1: Why W.Va.’s Largest Needle Exchange Closed
- Diving Deep into Harm Reduction Part 4: Best Practices vs. Community Acceptance
- New Interest in HIV Prevention for Vulnerable Communities after Years of Defunding
- Syringe Distribution Meets City Roadblock Amid Ordinance Concerns
- Fighting HIV Amid The Opioid Crisis
- A Traveling Needle Exchange Makes Progress in Wyoming County
A bill was recently introduced in the West Virginia State Legislature that would outlaw some of the state's most effective needle exchange programs. SB 334 was introduced by Senators Eric Tarr and Amy Grady; both are Republicans for District 4, which includes Mason, Jackson, Roane and Putnam counties. SB 334 would create a stricter license application process for harm reduction programs.
Talking about HIV and other needle-borne illnesses can be scary — maybe that’s why so many of us don’t talk about it. But what if the stigmas are causing these health crises to worsen?
HIV can spread throughout communities quickly, especially in places where there are high rates of people who use drugs. Last month, the Centers for Disease Control and Prevention warned that Charleston, West Virginia, has the nation’s most alarming outbreak of HIV. Public health officials have been warning for years that Appalachia is vulnerable to outbreaks of the disease.
Those warnings date back to at least 2015, when, in another part of the country, a rural county in Indiana saw a massive outbreak of HIV.
Indiana’s Governor at the time, Mike Pence, declared a public health emergency in Scott County, Indiana. The declaration allowed public health officials there to create the first legal needle exchange program in Indiana — and the first in a non-urban area in the United States.
Needle exchange programs, also known as harm reduction programs, allow people who use injectable drugs to exchange their used, and possibly infected, needles for clean, new ones. Needle exchange can help prevent the sharing of needles between multiple people. And in southern Indiana, the needle exchange program worked. Scott County went from 153 new HIV cases in 2015 to five new cases in 2018. It also saw an 88 percent reduction in syringe sharing. Experts say the drop in cases is largely due to the needle exchange program.
Charleston now finds itself in a similar situation — except Kanawha-Charleston Health Department’s needle exchange program was closed in 2018.
The program, which began in December 2015, had two goals: to reduce the risk of diseases commonly spread by sharing needles, and to connect people who use drugs to treatment and recovery services. The program became controversial among residents in town and closed a little more than two years after it opened. Now, the only thing that remains of the program is a kiosk where people can dispose of used hypodermic needles.
According to data collected by the health department, the program served approximately 400 people a week. Residents of Kanawha County and surrounding counties accessed the program.
“It became, basically, a line of people just to line up to get needles between 10 and four on any given Wednesday,” said former Charleston Mayor, Danny Jones, an outspoken critic of the program.
Charleston residents began to report an increase in discarded needles around the city. Some blamed the needle exchange. In the two years that the program was open, around 651,000 needles were distributed. However, only about 66 percent of those needles were returned.
Still, needle litter is not linked to an increase in diseases, according to Peter Davidson from the University of California San Diego.
“No one in the world has ever obtained HIV from stepping on a needle in the street,” said Davidson.
But public outcry eventually led to the needle exchange program’s closing. Just after, Rahul Gupta, former state Commissioner for Public Health, told West Virginia Public Broadcasting that the closure could have large public health implications.
“It plays into that stigma and is more harmful long-term than it is beneficial,” Gupta said.
The science behind harm reduction programs is unequivocal — these initiatives are proven to help save lives and prevent the spread of disease. According to supporters of the program, needle exchange coupled with access to addiction treatment options can help pull people out of their addictive behaviors and get them on a path to recovery.
For these programs to be successful, most public health experts say that residents in the community must support the program. And that’s where things fell apart in Charleston.
In March 2018, just a few months after Charleston’s needle exchange program closed, then-Mayor Danny Jones wrote a letter to the state Bureau of Public Health, requesting an audit of the program. The goal of an audit, he said, was to provide recommendations on how the program could be reopened.
Recommendations included improving data collection on how many people were using the program and what services they were using, addressing needle litter across Charleston, improving communication with the community and requiring that people pick up needles in person.
After the audit was released, the Kanawha-Charleston Health Department requested a review of the audit by harm reduction experts around the country. All seven responses were critical of the audit.
“I think the best way to describe it was that the people who wrote the audit had a very particular idea in mind about what a syringe distribution program should look like,” said Dr. Peter Davidson, a harm reduction expert from University of California San Diego.
According to Davidson, harm reduction programs exist because the typical public health model doesn’t serve people who use drugs. Davidson said, ideally, harm reduction programs have low barriers of entry in order to encourage a larger amount of people to participate. The recommendations in the audit conducted by the county would actually raise the barrier of entry for those looking to access it. However, Davidson said there is room for improvement.
“I wouldn’t expect a needle exchange in rural Appalachia to look the same as a needle exchange in San Francisco for example,” he said. “That would likely lead to a program that didn’t serve the population very well at all.”
During the time Kanawha County’s needle exchange program was open, another, smaller program called Health Right was operating as well. Health Right executive director Angie Settle said she had seen a need in the community and decided to act.
Because Health Right is a clinic working with a limited number of patients with whom they already have close relationships, they could run their program differently than the health department, which was trying to do a mass public health push, serving the whole city.
Health Right is also a one for one exchange — you bring a needle back, you get a fresh one — which for most harm reduction experts is not considered best practice. But since patients can come as many times a week as they want, Settle said it seemed to be the best choice for her program.
They also require every patient to meet with a counselor when they come in for needles.
If Charleston city leaders and residents want to consider another harm reduction program in the future, a lot of tough conversations would need to happen. Perhaps the most difficult barrier? Addressing stigma around addiction and harm reduction programs.
SOAR Under Fire
At this time, Charleston doesn’t have a syringe exchange program based at its local health department. Health Right continues to serve the community. Another group, “Solutions Oriented Addiction Response” or SOAR, has been doing needle exchanges, HIV testing and naloxone training in the West Side of Charleston.
The group has recently come under fire. According to Joe Solomon, one of the project’s volunteers, some people in SOAR have even been stalked or followed, and their addresses have been published on social media sites by people who oppose their harm reduction program. He points to the CDC’s recommendations for best practices when it comes to running a harm reduction program, which SOAR follows. “It feels rough to be stalked and bullied for listening to what the CDC says we need to do to save lives and prevent the spread of HIV. But it also feels worth it,” Solomon said.
Aiming For Prevention
There are several reasons why central Appalachia is more vulnerable to HIV outbreaks. In 2016, the CDC found that places with a combination of high poverty, low access to health care and rampant IV drug use were the most likely to be at risk for an HIV outbreak, as well as the spread of Hepatitis C.
Charleston is currently experiencing the nation’s “most concerning outbreak of HIV related to injected drug use” in the nation.
Charleston had 35 new HIV cases related to injected drug use last year. The average number of cases in other cities the same size was less than one.
Our Inside Appalachia co-host Caitlin Tan spoke with Dr. Mishka Terplan, who researches addiction in Baltimore, Maryland.
“I think the big picture is that most of these cases are preventable,” Dr. Terplan said.
If an HIV outbreak does occur, treatment plans are available.
“One of the principals of HIV care is that treatment is prevention,” he said. According to Dr. Terplan, medications for HIV treatment have become more effective at stopping the spread.
“Most people can achieve low viral loads and do not transmit,” he said.
Reduced Funding For Some Programs In Hardest Hit Areas
Dr. Gordon Smith, a professor at West Virginia University School of Public Health, said prevention is the best method for avoiding HIV outbreaks. In 2017, Smith’s team was awarded a $1 million grant from the National Institutes of Health, the Centers for Disease Control and Prevention and the Appalachian Regional Commission to prevent HIV and hepatitis C outbreaks related to the opioid epidemic.
For years, smaller community-based programs in southern West Virginia saw a decrease in funding. When our producer Roxy Todd visited the non-profit South Central Educational Development in Bluefield, West Virginia, back in 2018 she attended a meeting of a LGBTQ support group aimed at preventing HIV and hepatitis outbreaks. The group handed out goody bags — filled with items like condoms and lubrication — to encourage safer sex practice.
Due to reduced funding from the CDC, West Virginia has seen a reduction of funding for prevention and surveillance of HIV.
South Central Educational Development was recently awarded a federal grant to expand its outreach and do more testing of HIV in southern West Virginia. The grant is from the Ryan White HIV/AIDS Program and is the first time this southern West Virginia organization has received federal funding in nearly 30 years.
Living With HIV
Discrimination against people with HIV can add to the risk of widespread outbreaks. Here’s why: If someone keeps their disease a secret, or sees an HIV/AIDs test as a source of shame or embarrassment, or if cases of HIV go undiagnosed, then the rate of community spread increases significantly.
Carl (we’re referring to Carl by his first name for privacy) was in his senior year at Concord University in Mercer County, West Virginia, when he had some routine blood work done during a hospital admission. It was then that he found out he had been infected with HIV. He thinks he contracted the virus from his same-sex partner. Even though he used protection, he said his partner was careless one time.
Carl has struggled to tell people about his diagnosis due to stigma around HIV and AIDS. Even within the medical field, Carl has been the victim of homophobia. The discrimination he experienced caused him to stop taking his medications, and he almost gave up. Then he contacted the Ryan White program, where he now makes a two-hour round trip for check-ups.
Elena Imes, who has been living with AIDS for over 20 years, chose to speak out about her diagnosis. Imes, who was infected by her husband, has told her story to several media outlets — not without backlash. Imes has been confronted in public and told she is infecting people by touching things on the shelves at Walmart.
“That hurt so bad,” Imes said, “And that woman really thought she was warning everybody.”
However, Imes said the response from her community hasn’t all been bad. She has also received support from neighbors and friends at church.
Seeing What Works
While controversy still exists in Charleston over harm reduction programs, there are some rural communities in West Virginia that have kept their programs going. One of those is in Wyoming County. The county actually had the first health department in West Virginia to offer a mobile needle exchange program.
Fred Cox and his team opened Wyoming County’s only traveling harm reduction unit that offered clean needles to people who use injectable drugs.
The customized van was purchased with a $80,000 DHHR grant. The van, which is all white and unmarked, remains discreet in order to help those who seek out their services to feel safe and secure.
“We’ve debated on whether we want to put a harm reduction sticker on the side of the van, but at this point, we want to keep it a plain van,” Cox said in an interview with WVPB in 2018.
The staff travel between two communities — Allen Junction and Long Branch — because of the risks these locations have of HIV outbreaks.
Those seeking out their services for the first time must fill out an anonymous, one-page questionnaire. From there, they receive a plastic ID and can receive up to 20 needles weekly. The program operates on a one-for-one basis, meaning patients must bring in one used needle in order to receive a new, clean one. They also offer other clean supplies including a tourniquet, sterile cookers for mixing drugs, cotton balls for straining and a container for used needles.
Three years later, Wyoming County’s needle exchange program is still operating, offering naloxone kits, syringe exchanges, free condoms and HIV testing. Fred Cox has since retired.
Out theme music is by Matt Jackfert. Other music in today’s show was provided by Dinosaur Burps. Michael Howard, Nathan El, and Jake Schepps.
Roxy Todd is our producer. Jade Artherhults is our associate producer. Our executive producer is Andrea Billups. Kelley Libby is our editor. Our audio mixer is Patrick Stephens. Zander Aloi also helped produce this episode.
** Correction, an earlier version of this article incorrectly quoted Angie Settle, CEO of the nonprofit Health Right in Charleston, as saying it is not best practices for patients to meet with counselors at Harm Reduction Programs. In fact, referral to treatment is an important part of successful harm reduction programs, as it helps patients who suffer from substance use disorder get into recovery. West Virginia Public Broadcasting apologizes for the error.