By: A. Toni Young
I’d like to welcome readers to the first entry in CEG’s new blog, Community Perspectives. This post will serve as a brief introduction to the purpose of this blog, and a brief explanation of why I think it’s so important to hear from people we might not otherwise encounter.
The work that CEG has done in Washington, DC, West Virginia, Australia, Mexico, and beyond has consistently focused on the underserved and unheard. When I first started, we were the National Women and HIV/Project. In would become the Community Education Group, back in 1994, part of what called me to service was my dear friend Stephen M. Clement – the first, but not the last, of my dear friends to parish from “The Plague”.
On one of my last visits with Stephen, a gay, white, red-headed Texan, he looked me and said, “One day, HIV is going to look more like you than me. More women, black and brown people.”
I was a bit shocked, but he went on to say, “I would be one of your only friends in a position to pay your medical bills if you got sick.”
Most women and people of color impacted by AIDS at this time – 1992 – had few resources, organizations, or a voice in policy.
Founded in 1993 as the National Women and HIV/AIDS Project (NWAP), Community Education Group’s (CEG) focus has always been on the Black community, particularly the risks and challenges faced by Black women. NWAP’s immediate goal was eliminating the myth that HIV only affected homosexual white males. Broadcasting the message that everyone was at risk, the new non-profit conducted face-to-face outreach and distributed culturally conscious pamphlets and posters to other organizations and the public, nationwide.
In 1999, NWAP became the Community Education Group (CEG), as I sought to expand the organization’s efforts to better address the challenges facing my Southeast DC community. At this time, in addition to reaching out to heterosexual men and the recently incarcerated, CEG began to focus on creating strong, innovative community-based programming and providing training and technical assistance to fellow nonprofits. With the knowledge that the HIV/AIDS epidemic could not be stopped by only talking to women, nor by only talking about HIV, CEG became the organization most capable of offering HIV testing to the DC neighborhoods hardest hit by the HIV epidemic, best able to develop and spread health messaging in our Black community, and a leader of collaborative and capacity building efforts.
CEG’s Organizational Mission - CEG seeks to stop the spread of HIV and eliminate health disparities in high-risk communities by training community health workers, educating and testing hard to reach populations, and sharing our expertise with other organizations through national networks and local capacity-building efforts.
Over the years, I, along with various team members, put together a number of programs aimed directly at aiding underserved communities in the DC area. We put out media campaigns; we engaged in direct service provision in DC neighborhoods where nobody else would go; we distributed condoms, conducted HIV tests, and linked people into care using our CHAMPs (Community HIV/AIDS Mobilization Prevention Services) model, using peer-based outreach and services. For over twenty years, CEG’s work set standards for service provision in underserved communities, and of that work I was and am immensely proud.
When I moved to West Virginia, eight years ago, my plan was to retire. I bought a cabin, moved in with my dogs and cat, and planned to stay involved in a remote capacity, at most. But, like most of my life stories (of which there are many), things never quite turn out the way I initially expect.
What I found in West Virginia was yet another community of underserved, unheard voices facing an HIV epidemic and, again, nobody was talking about it. While I knew, intellectually, that rural America had cases of HIV, what I didn’t know was how deep – how hidden – the problem was.
When we talk about HIV infection rates in the South, we think of jurisdictions like Georgia, Florida, Alabama, and Texas – areas where rates of new infections are still high, and black and brown people are paying the price. What I found in West Virginia (and Kentucky…and Ohio…and Indiana) was that a culture of “not talking about it” had led to outbreaks of Viral Hepatitis, which we were catching, and also pockets of HIV.
When the news of the outbreak in Scott County, Indiana made waves, back in 2015, I looked around West Virginia and saw the exact same circumstances, here, that made Scott County ripe for an epidemic: an area devastated by local industry job losses; high rates of physical and social isolation; high rates of Injection Drug Use and overdose deaths. On top of all of those factors, West Virginia has almost no rural public health infrastructure in place to provide healthcare services to these people who were at high risk of an HIV outbreak.
And that’s what happened. West Virginia saw a 13% increase in new HIV infections from 2017 to 2018, and a staggering 67.8% increase from 2018 to 2019. In 2019, 61.6% of those newly identified cases listed Injection Drug Use as a primary risk factor for transmission (OEPS, 2020).
Unlike the outbreak in Scott County, Indiana, what didn’t happen was the kind of national and international press coverage that put Scott County on the map for HIV advocates. Instead, little attention has been paid to West Virginians who are battling the same exigent circumstances as Scott County, but with added geographic and topographic barriers to care.
Once again, voices are not being heard. Once again, meaningful change is not occurring, because those who have been failed by our healthcare system are being scapegoated and their voices ignored.
What’s more is that this problem isn’t specific to West Virginia – rural Americans across the United States are facing gaps in service, and despite all of the rhetoric about politicians listening to “Real Americans” when making decisions, those same politicians are happy to look the other way when it comes to adequately funding healthcare programs and infrastructure building that will serve these “Real Americans.”
This is why we have started Community Perspectives. To give voice to people who might not otherwise be heard. To introduce America to the people who are in the trenches our nation’s syndemic healthcare crises, whether that be Substance Use Disorder, Viral Hepatitis, Trans Health, HIV, or even access to basic utilities like running water.
Community Perspectives will feature pieces written by myself, our Policy Coordinator, Marcus J. Hopkins, and our Project Coordinator, Ty Williams. In addition, we will be featuring voices from West Virginia and beyond, telling us their stories, and adding their Perspectives to our Community. Thank you, for continuing to be a part of Community Education Group’s community, and I hope you will follow this blog and share it with your friends, neighbors, family, and networks so that we can make these voices heard.
Office of Epidemiology and Prevention. (2020, May 01). HIV Diagnoses by County, West Virginia, 2018-2019 (As of May 1, 2020). Charleston, WV. West Virginia Department of Health & Human Resources: Bureau for Public Health: Office of Epidemiology & Prevention: HIV and AIDS. Retrieved from: https://oeps.wv.gov/hiv-aids/documents/data/WV_HIV_2018-2020.pdf
CEG is a national organization that offers local programs and policy solutions.
We serving diverse populations, prioritizing indigenous populations and populations in need
CEG's work includes Direct Service programs, Policy work, and Capacity Building
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 begraphic due to the nature of the issues being addressed by the author.