Community Education Group Fights Overlapping Epidemics
With the COVID-19 pandemic dominating the news, it’s easy for other public health issues to drop out of sight. Shepherdstown-based Community Education Group (CEG) is pointedly focused on West Virginia’s ongoing substance-use disorder epidemic, which itself is directly linked to highest-in-the-nation rates of viral hepatitis, three HIV outbreaks in the past four years, and the highest rate of drug overdose deaths in the nation. CEG Founder and Executive Director Toni Young emphasizes the Mountain State’s unfortunate reality: “Ultimately, this is a story about the need to provide opioid support and prevention services statewide in order to keep the spikes of HIV and hepatitis — needle-sharing-related diseases — at bay.”
CEG is structured as a 501(c)3 not-for-profit organization with a mission to eliminate disparities in health outcomes and improve public health in disadvantaged populations and under-served communities. The group accomplishes this by conducting research, training community health workers, educating and testing people who are hard to reach or at-risk, sharing expertise through national networks and local capacity-building efforts, and advocating for practical and effective health policies that lead to social change.
Identifying the Gaps
Young described CEG’s current focus on deconstructing the silos that currently shape the state’s approach to viral hepatitis, HIV, and substance-use disorder — and to develop policies, programs, and training opportunities to support a more unified response. “For example, we have our monthly stakeholder meeting [conducted as a video conference at the moment], where we’ve discovered that many people didn’t know there is a moratorium on methadone facilities in the state,” she pointed out. “We want to try and either amend that current regulation or overturn that rule.”
What CEG does know, Young said, is that substance-use disorder, as well as the HIV crisis in the state, is basically going unchecked. “We don’t have a statewide testing program that should be in place. I think we have a syndemic [a concurrence of multiple epidemics] in this state and we need a plan, and the funding, to address it. Taking the opioid crisis in isolation has allowed people to focus on drug-treatment and drug-education programs, but they haven’t realized its relationship to other public health considerations.”
Removing the Barriers
The stakeholder meeting that Young describes is called the West Virginia Statewide Stakeholder Coalition (WVSSC). As the name suggests, “the group’s primary mission is to break down technical, regulatory, and administrative barriers that limit testing, treatment, and support across HIV, viral hepatitis, and substance-use disorder programs,” Young explained. “Such barriers create treatment silos that fail to reflect the medical and social realities behind the interrelated health crises — and thereby impede effective intervention.” Young convened the first meeting of this stakeholder group in September and plans for a monthly schedule to address the aforementioned syndemic of HIV, Hepatitis C outbreaks and drug-overdose deaths.
Young hopes that the WVSSC will ultimately assemble the expertise and collaborative strategy to spearhead a productive, sustainable response: “The WVSSC will focus on expanding awareness, education, rapid testing for HIV and viral hepatitis, treatment for substance-use disorder, and linkage-to-care networks which refer those recently diagnosed with HIV or viral hepatitis to treatment resources.”
Connecting the Stakeholders
Thus far, the WVSSC meetings have brought together state government and public health officials, healthcare providers, national organizations, school board officials, community-based organizations and members, and others from across West Virginia. But Young also wants the public to know that anyone can attend — in fact, she urges everyone to do so. “This is an opportunity to bring federal partners to the table, to talk about issues, but it’s also an opportunity for state health officials to attend, as well as the provider community and individual consumers,” she said. “What we’re really trying to use this meeting for is an opportunity to access the people that can give you the information you need — to create an opportunity to make West Virginia better.”
Young shared that the group is now putting together a monthly training calendar, “so people will be able to get training on rapid HIV testing, ACEs [Adverse Childhood Experience] testing, hepatitis, and substance-use disorder. We’ve partnered with Gilead; we’re talking to Merck and some others to put together a training that folks can access online, at home.”
Young is determined to bring people together through the WVSSC. “It’s the only way we can understand these crises, and hope to fix them,” she stressed. “People need to know that their voices have weight — they can join us… help us figure out how we address things like the opioid treatment moratorium, what we can do to get a statewide viral hepatitis plan, how we do more to get a statewide HIV plan, how we integrate these things. But we have to get together to figure out what these groups need — and how to get it to them.”Finding The Resources
An additional burden for a state already straining beneath the weight of a substance-use epidemic is the additional load that comes with COVID-19 — where state officials across the nation are reporting spikes in opioid deaths amid lockdowns as increased isolation combines with a lack of in-person treatment options. In fact, substance abuse of all kinds is on the rise, with more and more people increasingly vulnerable as they work from home. In response, CEG recently rolled out West Virginia’s first county-by-county list of opioid addiction and health-support services, accessed through an online directory and map.
“It’s been something that I’ve wanted to do for West Virginia for quite a while,” said CEG West Virginia Policy Directory Marcus Hopkins. “It emerged from the thought that, as a patient, if I’d just been diagnosed with HIV somewhere in West Virginia, I might first Google ‘HIV in West Virginia’ looking for help, and that would send me to the state website. But when we looked at the state site, it didn’t actually have any resources. It lists where you can go to get tested, and almost all of those locations are county health departments. There’s no link to who treats HIV, or where someone can find a doctor. And if HIV meds are expensive, then my income is going to be affected — I’m going to potentially struggle with housing and utility bills. Where are those resources?”
One of the things Hopkins and his team discovered when building the resource was that, not only was this information not available on state websites, but it’s hardly readily available anywhere at all — which led him to drill down from a patient perspective. “People need somewhere they can go to find information, so we built this tool with an interactive clickable map, where you can click any county in the state and it will provide the county health department, list the county government resources, HIV services, substance-use disorder services, viral hepatitis services, and additional services — such as wraparound nutrition services and housing assistance.”
The intensive process required Hopkins to do individual outreach to people in every West Virginia county asking questions such as, “Is there someone who tests for HIV? Is there someone who provides treatment there?” Hopkins described that, “what we were finally able to develop is a tool where, not only can people get the information they need, but providers or organizations that provide services can click on the county where they operate, and if they see a gap in services, then it creates an opportunity to say, okay, well no one is filling this gap here — how do we fill it?”
And anyone can add resources to the guide, Hopkins added. “Once they fill out a form that tells people what they offer, where they’re located, and what their hours of operation are, that information will get added to the resource guide within forty-eight hours and remain dynamic content that gets updated regularly.”
Young noted that CEG is excited to offer this innovation to the state when it seemingly needs it most. “At the end of the day, we’re responding to a once-in-a-lifetime COVID-19 pandemic, a series of HIV outbreaks, we’ve been number one or two on the national list for viral hepatitis for a number of years, and we’re responding to a nearly decade-old opioid crisis,” she pointed out. “So that’s the work we have ahead. But all of those things are interrelated. And none of us can do it alone — not our federal partners, not state partners, not philanthropy, not the individual consumer. We’ve got to get everyone to the table and say that West Virginia’s public health is a priority. We all have to be willing to invest in the health of West Virginia.”
You can visit the CEG’s website at to connect to the statewide resource guide for West Virginia, learn about upcoming events, and make donations to support their mission.
Deconstructing silos – Dec. 14, 2:00 – 4:00 pm
The Rural Health Service Providers Network will host a National Day of Advocacy in collaboration with the Community Education Group based in Shepherdstown, WV. A panel of speakers will focus on the topic of Deconstructing Silos – Increasing Access in Rural Health and discuss some of the challenges of HIV, Substance Use Disorders, and Viral Hepatitis testing, treatment, services, and care.
Event details & registration on CEG’s website.
By Mike Chalmers