For all of Appalachia’s much-profiled health concerns, HIV/AIDS has historically not been one of them.
In 2017, when West Virginia flashed in national headlines detailing the carnage of the opioid epidemic, the Mountain State still had one of the nation’s lowest rates of HIV diagnoses (4.3 cases per 100,000 residents), according to the Centers for Disease Control and Prevention. Neighboring Kentucky (7.9 per 100,000) and Ohio (8.8 per 100,000) have fared similarly.
But a recent HIV cluster in Cabell County, West Virginia, along with a scattering of others beginning to crop up across the region, reflects that more cases of HIV are being transmitted among intravenous drug users – potentially devastating for communities already ravaged by the opioid epidemic.
Cabell County’s current cluster – the only one currently known in West Virginia – is now up to 49 confirmed cases, according to the West Virginia Department of Health and Human Resources. All of those were contracted by intravenous drug use through the sharing of contaminated syringes.
The cluster, tracked from January 2018 to the present, represents a sharp uptick from the baseline average of eight cases annually over the past five years.
It’s particularly troubling considering Cabell County has an estimated 1,800 active IV drug users, creating an ample at-risk population for the virus to spread.
HIV is difficult to track and impossible to predict, but introducing the virus in the region’s drug-using population is an obvious cause for concern for West Virginia’s state health officials.
“We expect the case count to increase just because we know there’s people out there that have not yet been tested,” said Shannon McBee, senior epidemiologist at DHHR, in a joint interview alongside Dr. Cathy Slemp, West Virginia State Health Officer, at the state office in Charleston.
“Until we can get a handle on how many people have been tested in Cabell County, it’s likely we’ll continue to see cases,” McBee said.
HIV cases are still comparatively sparse in West Virginia. The dynamics for addressing it have changed, however, as the chief at-risk population shifts, and it’s created new challenges for those in public health.
Unlike typically close-knit and stable LGBTQ communities, reaching intravenous drug users can feel like chasing shadows. More than half of those in the current Cabell County outbreak are homeless; they’re typically transient and often from out of town, and aren’t likely to seek assistance on their own.
That means meeting them where they’re being housed, where they get their meals and where they encounter the medical system, McBee said – and that’s been the major new challenge from a public health perspective.
While the diseases themselves aren’t comparable, much of the lessons and community partnerships built during last year’s hepatitis A outbreak can be applied to HIV outreach. As in HIV, hepatitis A spread primarily among the homeless and transient.
“This is not something that public health can just step in and fix,” Slemp said. “This is about how we work together as a community to come together. We can guide, support and lead in public health, but it really is about how a community and providers come together to help diagnose and link people to care for HIV.
“It’s very hard to take your medication for HIV if you’re living on the street,” she added.
Where could the next cluster be?
HIV isn’t as easy to track as other diseases because of how difficult it is to transmit. Unlike hepatitis A, which is passed through the fecal-oral route, HIV is bloodborne and not shared through casual contact.
Because of that, HIV doesn’t “spread” in a predictable fashion, but rather “pops up” independently.
Some counties are at greater risk than others. According to a national CDC study in 2015, 220 counties in the United States were vulnerable to HIV, and 28 were in West Virginia. McDowell and Mingo counties were ranked second and seventh, respectively, in the nation for being at risk. The list also included Cabell (122nd), Kanawha (209th), Logan (20th), Wyoming (16th), Wayne (62nd), Mason (85th), Boone (22nd) and Raleigh (18th).
The disease could migrate within West Virginia from Cabell County, though Slemp said that’s not necessary. As it stands, West Virginia’s counties are at different levels of preparedness to respond to their own potential cluster should it occur.
“We’ve got counties at risk in their own ways, and this is a good time to bolster those services available,” Slemp said.
Cabell County is well equipped to handle its own HIV cluster, Slemp and McBee agreed, both through the services it provides and the partnerships built in response to the opioid epidemic, which can easily adapt to HIV prevention.
That includes the Cabell-Huntington Health Department’s syringe exchange program – which offers clean syringes to IV drug users in exchange for used ones to curtail the spread of bloodborne illnesses. Syringe exchange clients, who must physically come pick up and drop off their needles, are five times more likely to seek treatment for their addiction, McBee added.
But neither could speculate what might happen if an HIV cluster developed 50 miles away in Charleston, which scrapped its syringe exchange program in 2018 under public and political pressure. Both, however, expressed their support for it as a valuable asset to stopping the spread of devastating diseases.
“(Syringe exchanges) need to be one part of a comprehensive approach, but they are one of the most effective components of that approach,” Slemp said.
A study published last week by Johns Hopkins University concluded Charleston is more at risk for an HIV outbreak now since the syringe exchange was killed. Researchers found Charleston’s IV drug users are now far more likely to share used syringes to inject drugs and much less likely to be tested for HIV now that they’re no longer coming into a regular clinical setting for their syringes.
“An HIV outbreak doesn’t have to happen,” said Dr. Sean Allen of the Johns Hopkins Bloomberg School of Public Health and leader of the research. “But we need policymakers to really begin to take those steps to prevent another HIV epidemic.
“Any program that’s keeping people alive and reducing the risk of HIV and overdoses, I think it’s hard to argue against that.”
But the fact that Cabell County’s current HIV cluster occurred more than three years after the program was well-rooted could be hoisted as an indictment that the program is failing, particularly by those who oppose the program – chiefly arguing that the free syringes it provides may find themselves littered in the public.
Dr. Michael Kilkenny, physician director of the Cabell-Huntington Health Department, stands by the syringe exchange. It’s rooted in hard science, he said, while the arguments of naysayers contribute nothing to solving the problem.
“We certainly have a climate of misinformation in our country, and that misinformation tends to drive us to failure,” Kilkenny said from his office in Huntington. “We can’t go that direction.”
The HIV efforts at home
Cabell County heeded advice by the state Bureau for Public Health to increase HIV surveillance as early as 2017 – which Kilkenny noted would only have worked in counties with the capacity to do so like Cabell.
The county has since worked closely with the state and the CDC to beef up and fine-tune existing tracking methods. In April, the department ratified the prescription of pre-exposure prophylaxis from its clinic – a drug given to those not infected but at risk for HIV to decrease their chances of contracting it.
Locally, the health department is still tapped into a large network of outside community partnerships, particularly those who serve the homeless, which are still fresh from the hepatitis A outbreak and the ongoing opioid epidemic.
Those ties can easily pivot to HIV efforts, and Kilkenny said it’s part of what’s made Huntington able to respond so well to its past problems.
“Huntington works really well together; we always have. From that standpoint, we are a great community to attack a problem,” Kilkenny said.
But reaching the IV drug use population is still the major challenge, even for more nimble, grassroots groups.
The gay community has long known about the Tri-State AIDS Task Force – founded 30 years ago when the then-mysterious AIDS virus killed by the thousands. The donor-fueled local nonprofit distributes 100% of its funding to HIV patients in need, and those traditionally at risk have always seemed to know where to find help.
Like in public health, connecting the new at-risk population to the readily available help is the main problem.
“A lot of them aren’t from here and they don’t know folks who can help, and they don’t know how to reach out to us,” said Lisa Cremeans, Tri-State AIDS Task Force executive director, in an interview last weekend.
“That’s the big difference: They’re spread out throughout our community, and they don’t know each other a lot of the time.”
They’ve started campaigning at places where IV drug users frequent, primarily Huntington’s homeless outreaches, offering incentives like food packages and gift cards to enter care.
But too often they come to care the first time, get tested and don’t follow through on treatment. That’s another new dynamic, Cremeans added.
“Those IV drug users are lost in their addiction,” Cremeans said. “Men who have sex with men or other folks infected don’t have that addiction personality, so they want to stay healthy and get better.”
In West Virginia, most if not all HIV treatment is covered through Medicaid, though Cremeans noted it’s more difficult for Ohio or Kentucky residents. The majority of those locally at risk for HIV are presumably Medicaid eligible, meaning those likely to contract the disease have the resources to be treated if they’re reached.
Without insurance, HIV medication costs about $6,000 per month, she added.
The medication to treat it, while still brutal, has changed dramatically over the past 30 years. What was once a four to five times a day regimen can often be taken with a single daily pill, and survivors are now living healthy lives decades after contracting it.
Living to the fullest with HIV
Convincing someone to talk about his or her HIV isn’t easy, even in the openness of 2019 and the medical science dispelling the long-held taboos. But a 58-year-old Huntington man did. A jovial, well-liked and active community member, he’s long been open with friends and acquaintances about being HIV-positive, but chose anonymity when speaking to The Herald-Dispatch.
He’s also been open about being gay, but that didn’t contribute to being diagnosed with HIV in 1995. A hemophiliac, he was given tainted blood, likely as early as the 1970s, only to spot it later in life.
His white blood cell count was at 32 (normal is well over 100), and news came at a time when the virus was extremely lethal.
“I prepared to die,” he said flatly. “Life was pretty miserable back then.”
But it was at a time when new medications made living with HIV a real possibility, and he was fortunate enough to have the insurance to cover it.
“It’s a shock when you realize that you’re going to live again,” he quipped. “And then it’s a shock to know you’re going to live again with this disease.”
It became a part of his life, but it didn’t control his life. His weakened immune system means there’s almost always some ailment to worry about, like random tumors on his body or thrush infection in his mouth. There are some days when he simply wakes up feeling exhausted – his “HIV days” – that hit like a bout with the flu.
He got sick every time his infant children were. When he began a job working with young children, his doctor didn’t worry at all about him passing HIV to them, but rather their germs coming to him.
The antiretrovirals he’s taking are brutal, and he’s grown resistant to several types of available regimens over time. He compared it to chemotherapy. They make you sick, they can make a man sterile and all his foods taste like metal.
“The medications are hell, but they have to be because they’re killing a virus that’s difficult to control,” he said.
But given all that, HIV survivors are given two paths, he continued – give up and die, or get up and keep moving. He’s chosen the latter.
“It really depends on how hard you want to live,” he said. “And you need to just throw yourself at life.”
There is currently no cure for HIV.
Where to get help
The Tri-State AIDS Task Force provides help and financial assistance to those living with HIV. They can be reached at 304-522-4357 or through Facebook by searching “Tri-State AIDS Task Force.”
This article was originally published by the Herald-Dispatch.