In an effort to reduce the rise in hepatitis C (HCV) rates mostly caused by to a spike in opioid use, the Harm Reduction Coalition (HRC) has launched a targeted campaign to reduce hepatitis C in five states in the Appalachian region.
Supported by funding from Gilead Sciences, HRC will re-grant up to $6 million dollars to organizations of varying sizes in Indiana, Kentucky, North Carolina, Tennessee, and West Virginia. The initiative, HepConnect, will build partnerships with local community and regional organizations in the five states, helping to better equip the region with the knowledge, tools, and resources to curb hep C infections.
Through the HepConnect initiative, HRC hopes to mobilize communities in the impacted areas, increase awareness about HCV, create more opportunities for hep C screening and linkage to care, expand harm reduction education and strategies, and build capacity among health care providers.
But talking to the people in the Appalachian region is the first priority.
Taeko Frost, Dr.P.H., Western region director of HRC, said that for the first three months of the project HRC plans to engage over 100 providers, people who use drugs, and other people who are vulnerable to forms of structural barriers to hep C care (i.e., people of color and LGBTQ+ people) to understand where there may be service gaps. “We will be spending a lot of time listening and learning,” Frost said.
This initiative marks a new way of approaching their work, leaders at HRC have said. While the organization has a 25-year history of providing technical assistance in harm reduction work to community leaders and grassroots organizations, local partners told HRC last year that more direct funding to local programs helping to build capacity at scale in a region (as opposed to an individual person or organization) is what would have the most impact.
HRC declares on the HepConnect page on its website, “You have been very clear, you need resources and boots on the ground. As we presented our new strategic priorities during our national conference, we heard again that in order to build the harm reduction movement and center the voices of people who use drugs, we must find ways to strengthen and expand local programs.”
The Appalachian region is a 205,000-square-mile region along the Appalachian Mountains from southern New York to northern Mississippi. It includes all of West Virginia and parts of 12 other states: Alabama, Georgia, Kentucky, Maryland, Mississippi, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, and Virginia. And while about 42% of the area is rural, other characteristics of the region may surprise some. A 2018 study published in JAMA found that three of the 10 states with the highest hepatitis C prevalence and five of the nine states with the highest rates of new HCV infections from 2013 to 2016 were in the Appalachian region.
And despite the misconception that the region is exclusively white, a 2017 report from the Appalachian Regional Commission shows a growing diversity among Appalachian residents. People of color make up 18% of the population (rising slightly from 16% in 2010), with 9.7% of the region’s people being of African descent and 4.9% Latinx.
The HepConnect initiative will be a big step toward addressing the needs of marginalized communities impacted by hep C as well, said Donald Davis of the Kentucky Harm Reduction Coalition.
“There are few organizations that focus on services for people of color, [and this is] especially limited for services related to HIV and hepatitis C,” Davis said. “We need to bridge the gap between health services for people who use drugs and communities of color. As a Black man who had hepatitis C who has been working in the field for over 20 years, I’ve seen this gap and I’m excited that HepConnect will offer opportunities to address the expansion of services for people of color.”
Hepatitis C is defined by the Centers for Disease Control and Prevention (CDC) as a liver infection caused by the hepatitis C virus. About 2.4 million people are estimated to being living with HCV in the United States, with many being unaware they have the disease. People at high risk for HCV include people who use intravenous drugs and people living with HIV.
About 25% of people living with HIV are also living with HCV, according to the CDC. And between 2012 and 2013, rates of acute HCV increased 33% among blacks/African Americans, 28% among whites, and 5% among Hispanics/Latinos.
Over the past decade, the number of HCV infections in correlation to opioid use has spiked. The CDC reported that in the U.S. from 2004 to 2014, there was a 133% increase in acute hepatitis C, and a 93% increase in admissions to treatment facilities for opioid injection.
HCV is curable, however, and there are effective treatments for HIV.
The HepConnect initiative will run for five years and be tweaked depending on community needs. What would be the measure of success?
“We want to be open to possibilities on how different communities define hep C reduction success,” Frost said, but she did say that one of the hopes is a stronger network of resources and tools for people who want to reduce hepatitis C.
In addition to reducing hepatitis C, HRC still remains committed to addressing substance use through a harm reduction lens — a phrase that has been growing in popularity but that many advocates feel has a precise meaning that is being lost.
“At its core, harm reduction centers the voices of people who use drugs and communities most disproportionately impacted by racialized drug policies,” said Monique Tula, executive director of Harm Reduction Coalition. “As providers, we focus on reducing the harm that substance use may cause to individuals. As advocates, we work alongside community members to address harms that society inflicts on the individual. True harm reduction is a holistic approach that attempts to mitigate the harms caused by structural violence — and exacerbated by institutionalized racism — which lead to poor health, inter-generational trauma, poverty, and social isolation.”