Inaugural West Virginia Statewide Stakeholder Meeting a Resounding Success

#CEGInWV hosted a very successful inaugural West Virginia Statewide Stakeholder Meeting, on Tuesday, September 1st, 2020.

The meeting brought together 65 individuals and organizations, including state government and public health officials, healthcare providers, national organizations, school board officials, Community-Based Organizations, and others from across West Virginia.

CEG’s Founder and Executive Director, A. Toni Young, presented about CEG’s work in the state of West Virginia, including the following:

  1. Working to deconstruct disease state silos between Substance Use Disorder, HIV, and Viral Hepatitis by increasing awareness, education, and building linkage to care networks;
  2. Working to overturn West Virginia’s 2007 legislative moratorium (§16-5Y-12) on new Opioid Treatment Programs that offer Methadone for use as Medication-Assisted Treatment (MAT);
  3. Working to expand HIV screening, rapid testing, surveillance, treatment, and linkage to care throughout West Virginia, reaching into hard-to-reach and hard-to-treat parts of the states;
  4. Working with the West Virginia Bureau for Public Health, Department of Health and Human Resources, and Office of Laboratory Services to clarify, adapt, and revise West Virginia’s HIV testing statute (§64-64);
  5. Working to increase Viral Hepatitis vaccination, testing, surveillance, and treatment services throughout the state;
  6. Helping to develop statewide elimination plans for HIV and Viral Hepatitis;
  7. Developing statewide working groups focused on SUD, HIV, and Viral Hepatitis;
  8. Establishing regular statewide stakeholder meetings to discuss strategies for addressing West Virginia’s most pressing public health needs.

Toni was joined by Ana Paula Duarte (Southern AIDS Coalition), Adrienne Simmons (National Viral Hepatitis Roundtable), Nicole Elinoff (National Alliance of State and Territorial AIDS Directors – NASTAD), and Mike Weir (NASTAD), all of whom presented on their respective areas of expertise.

The video of this first meeting has been made available on CEG’s YouTube channel (here), and the full meeting was streamed live on CEG’s Facebook page (here). You can also download the slides used during the meeting by clicking on their respective buttons.

Thank you, to everyone who attended this first meeting, and we look forward to working with our partners across West Virginia to build a stronger community, one project at a time.

Of Quarantines and Cashflows

Marcus J. Hopkins
Policy Director
Community Education Group

By: Marcus J. Hopkins

In March of this year (2020, in case this is being read in some post-apocalyptic hellscape where Internet access has finally been restored), I attended a conference in Raleigh, NC, along with CEG’s Founder & Executive Director, A. Toni Young. The day before we got on the plane, we both conferred over the phone:

 “So…have you heard anything about this conference being cancelled,” asked Toni.

“Nope, which actually surprises me, given that this is a conference about preventing the spread of infectious disease among People Who Inject Drugs (PWIDs),” I relied.

“Well, you’re still going, right?”

“Unless you tell me that we shouldn’t go, I plan on being there,” I hedged.

“I’ll see you, tomorrow.”

By the day the conference was scheduled to end, the organizers had fundamentally changed the final day’s activity to discuss COVID-19, and the fact that many of us were headed back to states where the public health infrastructures were not prepared to deal with a pandemic outbreak – Kentucky, North Carolina, Tennessee, Virginia, and West Virginia. Outside of the handful of urban areas, once you get outside the suburbs, access to healthcare in Appalachia becomes not only scarce, but virtually non-existent.

But our discussions on that final day weren’t about the spread of COVID-19, itself, but how potential shutdowns were going to impact the lives of those whom our organizations were committed to serving.

When looking at rural and suburban areas where opioid (and occasionally meth) addiction is high, there are certain factors that tend to coalesce to create an environment ripe for the growth of addiction: lower incomes, higher rates of unemployment, areas where industries have left, lower levels of educational attainment, less access to economic resources, and areas where industries that require hard labor are the drivers of the economy (Office of Disease Prevention & Health Promotion, 2020).

Those factors essentially are Appalachia.

An economy built upon hard labor? Coal mining, logging, and agriculture.

Areas where industries have left? Coal mining’s not quite dead, yet, but it’s been dying for decades, and the fossil fuel industry’s hold on this part of the country is lessening, every day.

Lower levels of educational attainment? For the percentage of residents reporting less than high school completion, Kentucky (15.5%), Tennessee (14.2%), and West Virginia (14.4%) all have percentages of their population higher than the national average (13.1%) (Appalachia Regional Advisory Committee, 2016).

Less access to economic resources? Most of Appalachia is typified by bucolic scenery, the majority of which is geographically isolating.

Lower incomes? While the national poverty rate is 15.6%, the combined Appalachian regions of Alabama, Kentucky, Tennessee, Virinia, and West Virginia is 19.7% (Federation of Appalachian Housing Enterprises, n.d.).

When I brought my last partner, a born and bred Los Angeleno, to West Virginia to visit family over the holidays, in 2010, we drove up from Tennessee, through Virginia and West Virginia, to get to Morgantown. Along the way, he got an education in what “poverty” means, in Appalachia, versus Southern California.

For him, his perception of poverty existed in an urban desert: rundown apartment complexes, neighborhoods whose shopfronts were mostly boarded up or empty, and food being bought from “liquor stores,” because grocers had long since departed the area.

While driving through Preston County, WV, he turned to me and asked in horror, “Is that a shack?!”

“No…that’s someone’s home, and they likely have neither electricity, nor running water.”

Many of the clients served by 501(c)(3) organizations, Community-Based Organizations, and other non-profits in Appalachia live in these kinds of conditions. Whenever I go to conferences on HIV, Viral Hepatitis, and other infectious diseases, I keep trying to explain to people that the numbers coming out of West Virginia (e.g. – the highest rates of new Hepatitis B and Hepatitis C infectious in the U.S. per 100,000) are only a fraction of the story.

Because of the geographically isolated nature of Appalachia, there are tens of thousands of residents who are not reached for testing, alone, much less treatment. This is where small, community-based organizations – Rural Health Service Providers (RHSPs) – come into play. They serve as the links that get isolated populations to services, or, in most cases, take those services to the isolated.

So, when shutdown protocols were being announced, we immediately predicted two outcomes:

  1. Feelings of social isolation would increase, driving many people to overindulge in drugs, thus increasing the number and rate of overdose deaths;
  2. Delivering services to these people would become both more vital, and more difficult to achieve, as the delivery model largely depends upon isolated people coming to more central areas to access services (meaning that house calls would become necessary.

Though both predictions came to fruition – overdose deaths did increase, particularly in Appalachia – the second issue has proven to be the most difficult to overcome.

The issue that exists, for many of these small groups, is that their entire operations often rely upon both volunteers, and individual donations, meaning that there are no consistent sources of revenue. A lot of these organizations are put together by local people doing their best to bring resources to local residents, and they all have day jobs. In the past month, I received an E-mail from one of these organizers asking for a personal donation; another organizer told us that her group received a grant of $350 to purchase supplies.

$350 is awesome, but it falls extremely short of what is needed to combat the problem.

Moreover, while the people who organize these groups have hearts full to bursting and are dedicated to their missions, what they often lack are the kinds of resources they need to apply for and receive private and federal grant monies that could support their organizations.

Whenever federal funds are allocated for use in “rural health,” they are almost instantly gobbled up by Federally Qualified Health Centers (FQHCs), Rural Health Clinics (RHCs), and Look-a-Like (LALs) who have staff members whose jobs are dedicated to finding, applying for, and receiving grants.

So, how do these organizations compete?

Right now, they largely don’t, and that is a serious problem that CEG, along with TruEvolution, Inc. (Riverside, CA), is trying to address.

In the coming month, we will be unveiling a new national project that is aiming to create a way for these organizations to access federal, state, and local funds that would allow them to build, repair, expand, modernize, and mobilize their operations to meet clients and patients where they live, rather than expecting them to travel to urban areas to access services.

That’s all I can say, right now, but look forward to this unveiling in the coming weeks, because I think this one has a lot of great potential.

References

Appalachia Region Advisory Committee. (2016, October). Identifying and Addressing Regional Education Needs, Figure 1. Educational attainment by state, 2014. A-1. Washington, DC: United States Department of Education: Appalachia Regional Advisory Committee. Retrieved from: https://www2.ed.gov/about/bdscomm/list/rac/appalachian-region.pdf

Federation of Appalachian Housing Enterprises. (n.d.) Appalachian Poverty. Berea, KY: Federation of Appalachian Housing Enterprises: Appalachian Poverty. Retrieved from: https://fahe.org/appalachian-poverty/

Office of Disease Prevention and Health Promotion. (2020). Substance Abuse Across the Life Stages. Washington, DC: United States Department of Health and Human Services: Office of Disease Prevention and Health Promotion: Leading Health Indicators: 2020 LHI Topics: Substance Abuse: Life Stages & Determinants. Retrieved from: https://www.healthypeople.gov/2020/leading-health-indicators/2020-lhi-topics/Substance-Abuse/determinants

Disclaimer: Blog posts on CEG’s Community Perspectives blog do not necessarily reflect the views of the Community Education Group, its grantors, its corporate sponsors, or its organizational partners, but rather they provide a neutral platform whereby each author serves to promote open, honest discussion about issues specific to their personal expertise, lived experience, and perspective. Please note that some of the content on Community Perspectives may be graphic due to the nature of the issues being addressed by the author.

Photo of an outline of the state of West Virginia made out of white powder, presumably heroin or cocaine, and a rolled up straw for snorting it

Community Education Group RESPONDS: Misreading the Tea Leaves on West Virginia’s HIV Outbreak

At his recent abstract presentation delivered at the Conference on Retroviruses and Opportunistic Infections (CROI), Dr. R. Paul McClung presented a portrait of a successful HIV intervention in Cabell County, West Virginia. By his estimation, the response to what was then the third HIV outbreak in that state, beginning in January 2018, was a fine example of a successful infectious disease responseMedPage Today described it as “A Blueprint for Public Health Response,” and McClung cited a strong public health infrastructure in the county, including “…a large academic medical center, a large network of community health centers, and a ‘growing capacity to treat substance use disorder,’ such as a syringe service program in place since 2015” (Walker, 2020). Given the consistently negative press both the state and the county receive, this glowing review of Cabell County’s response is a welcome change—but it is also, unfortunately, a largely incomplete portrayal of events as they occurred, and of circumstances on the ground as they still stand.

While the staff of the Cabell-Huntington Health Department, their Harm Reduction Program, and the local community-based organizations and healthcare providers did an excellent job of working together to identify new cases of HIV among People Who Inject Drugs (PWIDs) and others in the county, what Dr. McClung fails to mention is that many—a significant percentage—of those cases identified in Cabell County between January 2018 and December 2019 were patients who were not/are not residents of Cabell County.

Huntington sits on the border of both Kentucky and Ohio and is also surrounded by several rural counties. It serves as one of the primary hubs of drug trafficking in the region, a place where people drive hours and hundreds of miles to get their drugs and, unfortunately, often contract infectious diseases in conjunction with the injection of those drugs. As Dr. McClung’s reporting correctly identified, a majority of the new HIV diagnoses were directly related to Injection Drug Use (IDU). According to the West Virginia Office of Epidemiology and Prevention Services (OEPS), of the 69 new cases identified in 2019, 63 (91.3%) reported IDU as a risk factor (OEPS, 2020). It was not, however, until January of this year (2020) that the state redefined how they count reported cases of HIV, allowing for counties to correctly attribute newly identified cases back to the patients’ counties or states of origin.

Dr. McClung’s reporting leaves out the important fact that little to no investigation has been done on the ground in the rural counties that surround Cabell and Kanawha Counties, the site of the fourth HIV outbreak, identified in 2019. This is not because nobody wants to conduct these investigations, but because the resources simply do not exist for them to be done. Even in Cabell County, the Harm Reduction Program operates with only a handful of staff members for a job that requires ten. In these rural counties, entire county health departments operate with similarly small staffs, yet their responsibilities extend beyond just Harm Reduction and HIV testing. They are also tasked with protecting communities from environmental health risks, and with inspecting houses, institutions, recreational facilities, sewage and wastewater facilities, and drinking water facilities.

When we discuss West Virginia’s response to the inaccurately defined “cluster,” we cannot do so without acknowledging that we do not know whether or not the HIV outbreak was

contained to Cabell (nor if the outbreak in Kanawha Count was contained) simply because neither adequate testing, nor case investigation, has been conducted outside of Cabell and Kanawha Counties. To paint a portrait of a successful public health intervention without addressing the existing gaps in public health infrastructure and surveillance outside of urban areas of rural states is misleading.

When it comes to both drug use and infectious disease, two things are certain: (1) neither are contained solely within urban areas, and (2) both have been growing in rural America for more than a decade. We have yet to effectively grasp or contend with these rural health crises, despite the best efforts of county and state health departments.

Despite Dr. McClung’s accurate observation of Cabell County, there is a greater story to be told and greater needs to be met. We need more resources. We need enough funds dedicated to hiring appropriate staff. We need enough funds to adequately provide infectious disease testing and epidemiological reporting. We need enough funds to provide treatment. Right now, West Virginia’s rural counties lack those resources, putting a strain on Cabell to pick up where they cannot.

References

Driesbach, E. (2020, March 16). Treating patients ‘rapidly and effectively’ helped contain HIV outbreak in West Virginia. Thorofare, NJ: SLACK Incorporated: Healio: Infectious Disease: HIV/AIDS: Meeting News. Retrieved from: https://www.healio.com/infectious-disease/hiv-aids/news/online/%7Bd14dcd…

Office of Epidemiology and Prevention Services. (2020, March 01). HIV Diagnoses by County, West Virginia, 2018-2020. Charleston, WV: West Virginia Department of Health and Human Resources: Bureau for Public Health: Office of Epidemiology and Prevention Services. Retrieved from: https://oeps.wv.gov/hiv-aids/documents/data/WV_HIV_2018-2020.pdf

Walker, M. (2020, March 11). West Virginia HIV Outbreak: A Blueprint for Public Health Response – Used four pillars of federal initiative to manage local HIV epidemic. New York, NY: MedPage Today, LLC: Meeting Coverage: CROI. Retrieved from: https://www.medpagetoday.com/meetingcoverage/croi/85378

Screenshot of Steven W. Thrasher, PhD's opinion piece, HIV is Coming to Rural America, in the New York Times

Community Education Group Founder and Executive Director, A. Toni Young, in The New York Times

CEG’s founder and executive director, Toni Young, was featured in a piece published in The New York Times Opinion section: “H.I.V. Is Coming to Rural America And rural America is not ready” by Dr. Steven W. Thrasher (Northwestern University), speaking about West Virginia and rural America’s burgeoning HIV crisis lurking beneath the bucolic scenery: As A. Toni Young, an AIDS activist, puts it, the “epidemic of opioid addiction — fueled by drug companies’ promotion of pain medications beginning in the 1990s — is a crisis for rural regions in part because these regions are completely unprepared to deal with the magnitude of the problem.” Ms. Young founded what is now called the Community Education Group in Washington, D.C., in 1993, originally to address H.I.V. and AIDS in women. An African American lesbian, she has spent most of the past 30 years working to help members of the Black, gay and urban communities it affects.

Follow the link to read the full article: HIV Is Coming To Rural American And Rural America Is Not Ready