Curing Hepatitis C in People Living with HIV in the United States: A Federal, State and Local Collaboration
May 28, 2019
Hepatitis C virus (HCV) co-infection affects roughly 25% of people living with HIV (PLWH) in the United States (U.S.).[i] To effectively combat this epidemic, ongoing provider education has been identified as a key initiative to enhance screening, diagnosis, linkage to care, and treatment of HCV. While many HIV providers and educators are familiar with publicly available resources via the Health Resources and Services Administration (HRSA) HIV/AIDS Bureau AIDS Education and Training Center (AETC) Program, tools to address the co-infection epidemic within these entities were previously limited.
The HIV/HCV Co-infection: An AETC National Curriculum was created as part of the HRSA-funded Special Projects of National Significance (SPNS) project, Jurisdictional Approach to Curing Hepatitis C among HIV/HCV Co-infected People of Color. This SPNS project focuses on increasing jurisdiction-level capacity to provide and expand the provision of comprehensive screening, care, and treatment for HIV/HCV co-infection and to address health disparities associated with the cure of HCV in co-infected persons of color. The funded jurisdictional sites were comprised of three Ryan White HIV/AIDS Program (RWHAP) Part A (Hartford, New York City, and Philadelphia) and two RWHAP Part B (North Carolina and Louisiana) recipients, with the National Alliance of State & Territorial AIDS Directors (NASTAD) funded to select and support the Part B recipients as the State Health Departments Coordinating Center. The AETC National Coordinating Resource Center (NCRC) was funded to coordinate and facilitate the development of the curriculum in collaboration with regional AETCs associated with each of the Part A and B jurisdictional sites (MidAtlantic, New England, Northeast/Caribbean, South Central, and Southeast AETCs).
As such, the AETC NCRC assembled a team of AETC Program faculty and staff with content, education, and design expertise to produce the curriculum. AETC NCRC leadership recruited partners from the MidAtlantic, New England, Northeast/Caribbean, South Central, and Southeast regional AETCs with subsequent curriculum review by other academic, public health, and non-profit agency experts including the RWHAP Part A and Part B programs also involved in this project. The goal of this curriculum was to not only provide evidence-based, self-directed, online education for healthcare providers and enhance treatment of HCV among PLWH but also to provide excellent tools for educators. “HRSA and the AETC Program have a long history of providing outstanding provider education and trainer support related to HIV,” said Cody Chastain, MD, the Southeast AETC representative member on the curriculum development working group team. “Our group sought to deliver high-quality tools for both individual learning but also for trainer development and assistance.” Since its inception in 2017, the curriculum has been adapted and applied to enhance prevention, screening, diagnosis, and treatment in multiple settings.
The AETC Program collaborated on this SPNS project in three major ways: 1) The AETC NCRC coordinated and facilitated the development of the curriculum in collaboration with the regional AETCs; 2) The regional AETCs used the curriculum to provide technical assistance and training in the jurisdictions; and 3) The AETC NCRC facilitated a monthly programmatic Community of Practice and Learning (CPL) which convened the AETCs and jurisdictional sites involved in the SPNS project.
The purpose of the CPL was to provide an opportunity for the AETCs and jurisdictional sites to share successes, challenges, and opportunities associated with the SPNS project. As part of this experience, programmatic needs were identified including the need for HIV/HCV co-infection resources. The CPL group addressed identified needs and worked together to create several resources that are available for free via the AETC NCRC:
- Myths about Treating Substance Users with Hepatitis C Virus (provider infographic)
- Hepatitis C Screening and Treatment in People Living with HIV (provider flyer)
- Hep C Free (patient postcard available in English and Spanish)
- Hepatitis C: Getting Cured Is Easier than Ever (patient brochure)
- Passport to Cure (patient brochure available in English and Spanish)
Two of these resources, the Hepatitis C Screening and Treatment in People Living with HIV flyer and the Passport to Cure patient brochure, were adapted from existing products developed by the jurisdictional sites the New York City (NYC) Department of Health and Mental Hygiene’s Project SUCCEED, and the New England AETC’s Connecticut Regional Partner at Yale University, respectively.
Hepatitis C Screening and Treatment in PLWH: Project SUCCEED (Scaling-Up Co-Infection Care Eliminating Ethnic Disparities), NYC Department of Health and Mental Hygiene, is one of the Part A funded demonstration site projects. To carry out this project, the NYC Health Department is: delivering health care provider training in HCV testing, navigation, and clinical care, conducting practice facilitation work with high burden health care facilities, and reaching out to patients by telephone and linking them to care. In the needs assessment phase of the project, the NYC Health Department learned that providers were not clear on the current HCV screening and treatment recommendations for PLWH, and therefore had trouble providing clear health promotion information to patients, and appropriate services. To remedy this, the NYC Health Department developed a New York-specific guide to promote recommended screening and treatment. The NYC Department of Health researched and compiled recommendations on HCV screening and treatment in PLWH, researched current New York State health insurance coverage policies for HCV screening and treatment in PLWH and people who use drugs, identified key HCV testing and care referral resources, and integrated the recommendations into HCV training curricula. With feedback and input from the CPL, this guide was adapted for a national audience to supplement the HIV/HCV coinfection curriculum’s tools and resources. Recommendations include:
- Screen all PLWH for HCV at intake into care
- Screen with the HCV antibody test if the patient has an unknown status
- Screen with an HCV RNA test if the patient had a previous HCV antibody positive test (and has either cleared the virus or has been previously treated and/or cured)
- Screen people at risk at least annually (people who use drugs, men who have sex with men, and others with blood exposure risk)
- Screen pregnant women
- Treat all PLWH and HCV co-infection to cure HCV (unless contraindicated such as during pregnancy)
Passport to Cure: The development of the “Passport to Cure” brochure is a result of the New England AETC – Connecticut Regional Partner at Yale University director, Karina Danvers, who was involved in HIV training for the clinical providers at Nathan Smith Clinic, at Yale-New Haven Hospital. A request was made to create a binder for the waiting area with educational materials for HCV co-infected PLWH to look through. Included was educational flyers and materials that covered basic topics: HIV/HCV co-infection, HCV life-cycle, HCV testing, genotypes, and HCV treatment lengths ranging from 8 to 12 weeks, but for some, up to 24 weeks.
Karina discussed with the Yale AETC’s Principal Investigator, Dr. Villanueva, the need for a patient-specific HIV/HCV flyer or brochure, that went beyond the general educational binder, which patients could perceive as “not my HCV,” since everyone’s HCV experience is different. They discussed what information a document or brochure should include which a provider and patient could fill out together during a medical visit. The document would be customized with the patient’s specific information and would reflect their own unique treatment journey.
They felt the document should have areas to record the following items: patient’s HCV viral load at the start of treatment, at 4 weeks into treatment, and at completion of treatment; genotype; HCV medication(s) (direct-acting antivirals or DAAs) with pill pictures and dosing instructions; pharmacy information; names of clinic care team members; HIV and other medications; length of DAA therapy – 8, 12, 16 or other # of weeks; stage of liver disease; and brief information on HIV/HCV co-infection.
The concept of a patient’s unique journey led to the idea to name the document Passport to Cure. It was implemented at the Nathan Smith Clinic and was well received by both providers and patients. The original brochure was a three-fold pamphlet and customized to be site-specific with the clinic name.
Passport to Cure has revealed itself as a helpful encouragement for patients to feel engaged in their HCV treatment, and to feel empowered to achieve HCV cure. If a patient has other medical providers or an emergency department visit Passport to Cure can be used as a resource on what medications and where in the treatment a patient is, including who is a contact for the patient’s care team.
During a monthly CPL call, Karina discussed the Passport to Cure resource and showed it to the group. At the group’s request, it was submitted to the AETC NCRC to share with other partners, and at that time a redesign for a national audience was done. The new design streamlined it into a long, thin brochure that could “Z” fold into the size of a business card. This new version allowed it to be portable and easy to fit into a wallet or pocket. Feedback from the national partners has been overwhelmingly positive, and through the AETC NCRC, it is available in English and Spanish in both printed and electronic formats.
The CPL continues to identify and evaluate provider and patient educational needs to enhance screening, diagnosis, linkage to care, and treatment, to cure HCV in PLWH. More resources are currently in development including materials to support the care needs of people who inject drugs to reduce the risk of HIV and HCV infection as well as other drug injection-related morbidities and mortalities. In honor of Hepatitis Awareness Month in May, we’ve highlighted the evolution of this project from curriculum development through training implementation and resource development, in partnership with federal, state and local agencies, to demonstrate the ongoing effort to address the barriers that impact access to quality care and optimal treatment outcomes for HIV/HCV co-infected people of color in the U.S.
Learn more about this initiative in our HIV/HCV Co-infection: Treat Both, Treat Now video.
About Nirah Johnson, LCSW
New York City Department of Health and Mental Hygiene