Last year, for the first time since 2015, West Virginia health officials detected HIV in rural Taylor County. And that county isn’t alone: as officials are still trying to get outbreaks in the state’s more urban areas under control, the virus is popping up in new places. New HIV cases were found in 29 West Virginia counties last year. For eight of those counties, it was the first case in recent years.
The exact number of cases isn’t public: to protect privacy, the Department of Health and Human Resources will only say it’s somewhere between one and four. But it’s not just the public that’s in the dark about the prevalence of HIV in the county.
“I don’t receive that information,” said Nelda Grymes, nurse director at the Grafton-Taylor County Health Department. “Unless we test the person, we don’t know anything about it. That goes for any sexually transmitted disease in this entire state.”
As state resources are concentrated on ongoing HIV outbreaks linked to drug use in counties like Kanawha and Cabell, health officials like Grymes in rural counties lack key information about the extent of the problem within their borders.
Few people are focused on understanding the true scope of infectious diseases associated with drug use in these counties — even the counties themselves because they don’t know what’s going on. And even if they did, they’re up against new laws that make it harder for them to address the problem with harm reduction programs and a state approach that is geared toward reacting to outbreaks, not preventing them.
The result is a spread of HIV around West Virginia.
“When I look at these numbers, what I’m seeing is a statewide problem. Because now we’ve got cases in places like Mason and Pocahontas and Mineral,” said Robin Pollini, a substance abuse and infectious disease epidemiologist at West Virginia University. “And to me, that calls for a statewide testing strategy. Because this is no longer Kanawha and Cabell’s problem, we’re starting to see cases in multiple counties.”
HIV attacks the body’s immune system and can be highly infectious, especially through the sharing of syringes. But the virus’ effect on the body can be controlled with proper medical treatment. For the last few years, West Virginia has been facing an HIV epidemic associated with injection drug use.
HIV cases in West Virginia rose sharply in 2019 and have been elevated ever since. Last year the state had 147 new HIV diagnoses, nine more than in 2020. Kanawha, Cabell, and Berkeley counties accounted for 100 of those new infections. The county with the next-highest number of new cases — five — was Mason County, which had recorded zero in the previous year.
Like health department employees in Taylor County, Mason County Health Department workers also weren’t aware of any HIV infections in the county last year.
“We’ve lived and breathed COVID for the last two years,” said administrator Jennifer Thomas. “It would be nice if we knew [about new HIV infections].”
That’s the way West Virginia’s system is designed: HIV and other sexually transmitted diseases have long been under the purview of the Bureau of Public Health within the DHHR.
New HIV cases are often discovered in a hospital or other clinical setting when a patient is seeking care. Positive results are reported directly to the DHHR. State disease intervention specialists are then supposed to follow up with the person, determine who they could have spread the disease to, and connect them with treatment.
Many county health departments aren’t directly involved in mass or routine HIV testing, particularly for hard-to-reach populations, such as people who don't have access to transportation or are afraid of being arrested for their drug use.
This routine process leaves out county health departments, at least until the state determines there's a larger problem. In an email, DHHR spokeswoman Allison Adler said the state monitors the new cases and reaches out to local health officials if there's a need for a response.
“Currently, Cabell and Kanawha are the only counties experiencing significant increases of HIV among [people who inject drugs],” Adler said.
In response to a follow-up question about the number of cases that would have to be diagnosed before the state informs the county, Adler said the agency reaches out when a “significant increase” is detected, or counties could check the public website where DHHR publishes the data.
Pollini says that it should be considered a significant concern when HIV appears in any county that previously had no cases, but especially in rural counties where access to care is limited. There are actions that counties can take — from ramping up testing to creating harm reduction programs — by just knowing the number of HIV cases popping up in the county.
“How can you prevent an outbreak or even know that you have an outbreak if you don't let the local health department know that they have a growing number of injection-related HIV cases?” she said.
But with the current landscape — stressed by COVID, underfunded, and with new laws restricting the types of harm reduction programs they can offer — county health departments have few opportunities to address potential outbreaks, even if they see them coming.
HIV and harm reduction
Health experts say harm reduction programs that distribute clean syringes are one of the best ways to prevent the spread of HIV among people who inject drugs. The Centers for Disease Control and Prevention says that effective syringe service programs are those that are “needs-based,” meaning they serve anyone who needs it, rather than requiring people to return a used needle to get a clean one. They also recommend building community trust and having fewer requirements to ensure simpler access to services. Models like these are intended to educate people about harms associated with drug use, and connect them with any social or health services they may need.
In 2021, when the CDC came to Charleston to assist with the HIV outbreak, the first recommendation in their report was to increase the availability of clean syringes and expand harm reduction programs.
But a few months before then, lawmakers had already moved the state in the opposite direction: they passed a bill to place more restrictions on syringe exchange programs. The new law requires programs to offer a range of health services in addition to the exchange, only serve people with a West Virginia ID card, and aim to get one used syringe back for each new one they give out.
At the time, experts and advocates said the new law would likely force some programs to close. And they warned that even if some stayed open, they may not attract the most high-risk people because of the identification requirements, driving them away from health services. At least some of their predictions seem to have come true: Before the law, the DHHR’s website listed sixteen harm reduction programs in the state that offered clean syringes. Now, only nine distinct programs are operating in West Virginia.
Mason County, where there are at least five new cases of HIV, didn’t have a needle exchange before the new law, and doesn’t have one now. But Michelle Simpkins, a program manager at My Hope for Tomorrow, a substance use recovery center in Point Pleasant, says they could use one.
Simpkins says the clinic saw an uptick in patients with HIV last year, both in patients who were tested there or came to the clinic already knowing they were HIV-positive.
“We’ve seen an increase in sharing needles,” she said. “We don't have a clean needle exchange here. That’s something I personally would like to see. We actually just had a patient come through yesterday that we had to test for HIV because he shared a needle with someone who was HIV positive.”
“People just have a whole different outlook on needles, they're going to do it anyway, so they should have clean needles,” she added.
But even places with syringe exchanges don’t necessarily have access to the tools and information they need. Back in Taylor County, the Grafton-Taylor County Health Department is one of the harm reduction programs that applied for certification after the syringe exchange law was passed last year. Nurse Director Nelda Grymes says that every week, her staff tells their 30 or so clients about the health services available to them, educates them about needle sharing and offers HIV tests. But over the last few years, the counties’ positive HIV tests haven’t come from her clinic.
That’s why experts like Robin Pollini say it’s not enough to just create an ad hoc system of testing; instead, a true statewide testing strategy is needed.
“A response strategy is reactive. A testing strategy is proactive,” she said. “Let's go out and have a really good plan across the state for finding people who are positive and conducting ongoing surveillance so we can find new cases as they occur, particularly if they're occurring in places where we have not had injection related cases before. Reacting to outbreaks should not be our status quo. Preventing outbreaks should be our status quo.”