We Have the Tools to Eliminate Hepatitis C: Advancing Harm Reduction Strategies through Data and Storytelling

By Rebecca Erenrich, MPH and Kristin Kennedy, MS, MPH, CPH
ETR | May 27, 2022

The United States is experiencing rising rates of hepatitis C virus (HCV) infections, fueled by the nation’s growing opioid crisis. This issue is particularly acute in Appalachia, where the increase in injection drug use led to a more than three-fold rise in new cases of hepatitis among young people between 2006 and 2012.

As we close out Hepatitis Awareness Month, recognized each year in May, ETR remains committed to raising awareness, reducing stigma, and combatting the spread of HCV. As part of our fight for health equity, ETR offers science- and evidence-based resources on sexual health and safer drug use and works and maintains a portfolio of community-driven projects rooted in harm reduction, including HepConnect.

Combatting HCV in Appalachia with Harm Reduction

In 2019, in response to the intersecting opioid and HCV epidemics, Gilead Sciences launched HepConnect– a five-year initiative designed to address increasing HCV infections in Indiana, Kentucky, North Carolina, Tennessee, and West Virginia by expanding screening, linking people to care, improving healthcare professional education, and supporting evidence-based harm reduction through partnerships. ETR is the external evaluator for HepConnect, providing ongoing evaluation support and technical assistance to HepConnect’s implementing partner, National Harm Reduction Coalition (NHRC), and HepConnect-funded programs.

Harm reduction principles underlie NHRC’s work on HepConnect and all of its projects. Harm reduction rejects punitive and coercive ways of dealing with drug use. Instead, it emphasizes practical approaches that center the rights and wellbeing of those who choose to use drugs. Classic harm reduction approaches include providing unused syringes and other safer drug use supplies to people who use drugs (PWUD), educating PWUD on how to protect themselves and their community from infectious disease and overdose, and offering referrals to voluntary substance use treatment.

NHRC oversees agencies that provide these services (and additional wraparound support) throughout the five-state region of HepConnect’s focus. These programs often go where others cannot: forging deep ties with marginalized communities, visiting tent cities, and offering care at all hours of the night.

The agencies perform this work in an environment that is frequently hostile to harm reduction strategies. Legislation enacted in 2021 in West Virginia, for example, imposed draconian restrictions on syringe service programs, forcing nearly half of the officially recognized programs to close up shop. Police interference can make it difficult for people who inject drugs to carry a supply of clean needles because the equipment may be considered illegal drug paraphernalia. Angry neighborhood groups use civil lawsuits to hinder syringe service programs. Funding for harm reduction work in the area is also generally scarce, and state funding is limited to non-existent.

Evaluation Techniques to Help HCV Programs Survive and Thrive

As HepConnect approaches its fifth and final year, harm reduction programs funded by the initiative are seeking resources to ensure their longer-term sustainability. This month, ETR facilitated a roundtable discussion with them on utilizing evaluation for program sustainability. As we outlined in this presentation, strong evaluation systems can enable HepConnect agencies to build an effective response to drug overdose prevention and the increasing rates of HCV. Knowing what is working well and what is not allows agencies to fine-tune their approach and boost their impact.

Well-executed evaluation work can also elevate the impact of harm reduction programs by furnishing concrete evidence of the results they have achieved, which may pique the interest of potential funders. Proof of an agency’s results also shows the importance of investment in harm reduction – particularly for communities most harmed by the War on Drugs, including communities of color – strengthening the entire movement.

Robust evaluation requires planning, data collection, and analysis. However, as we discussed at the roundtable, evaluation is not only about crunching numbers. Storytelling also has a key role to play. Crafting authentic and meaningful stories that incorporate relevant and digestible data for various audiences can be invaluable.

How to Use Storytelling in Your Evaluation Process

Crafting a story that is authentic and meaningful

• Creating space to listen deeply to those impacted, including meaningfully engaging people who use drugs (PWUD), is essential for authentic storytelling that benefits the communities you serve.
• Impact story components: What happened? When and where was this change felt? Why does this change matter? Who is affected or benefits from this change? Are there any ripple effects (e.g., program informs policy change, which then benefits community)?

Choosing the right data for your audience and goals

• Stories make data human-centered and help to describe outcomes and impact in a digestible way for different audiences (e.g., funders/donors, academic settings and conferences, community).
• Choosing the right story to support data and convey impact begins with exploring the outcome you wish to achieve by telling the story (e.g., increasing awareness, changing public perceptions, improving access or quality of services).

We are hopeful that HepConnect-funded agencies will go on to have long and illustrious stories about their impact on HCV and the opioid crisis in Appalachia, and we are honored to have the opportunity to help them tell the tale.

To learn more about the innovative approaches that HepConnect programs are implementing and to further support their mission and vision, check out the websites below:

• Indiana: Aliveness Project of Northwest Indiana, Imani and Unidad, Indiana Recovery Alliance, The Never Alone Project
• Kentucky: Kentucky Harm Reduction Coalition, Central Kentucky Harm Reduction Coalition, Madison County Health Department, Muhlenberg County Health Department, Whitley County Health Department
• North Carolina: Center for Prevention Services, North Carolina Harm Reduction, North Carolina Survivors Union, Steady Collective, The Olive Branch Ministries, Twin City Harm Reduction Collective, North Carolina AIDS Action Network
• Tennessee: Choice Health Network / Positively Living, Next Step Initiative, Street Works, Tennessee Recovery Alliance, Partnership to End AIDS Status (PEAS), WeCareTN, Relationship Unleashed
• West Virginia: Milan Puskar Health Right, Virginia Harm Reduction Coalition, The Community Education Group, Solutions Oriented Addiction Response (SOAR) - West Virginia
• Regional: Provide Inc., Community Liver Alliance, SisterReach