Hepatitis C Care and Elimination in Ahtahkakoop Cree Nation: An Indigenous Community‐Led Model

Watch a video presentation of this article Ahtahkakoop Cree Nation (ACN) is an indigenous community located in rural Central Saskatchewan with a high prevalence of hepatitis C virus (HCV) infection. Based on data from clinical records, approximately 12.5% of the community population (200 cases of N = 1600) had a history of HCV infection (i.e., HCV antibody positive). An existing program serving HIV clients identified almost 97% of clients to be HCV antibody positive, with few receiving HCV treatment. To address the need for HCV care in the community, health care staff supported by ACN leadership integrated HCV care with the HIV program, operating toward HCV elimination. This review describes the indigenous community-led HCV program and elimination campaign from inception to its current state and outcomes. Using the Learning Healthcare System framework,1 this comprehensive HCV care model was built on the foundation of an existing community-based HIV model of care, termed “Know Your Status” (KYS).2 Between 2016 and 2019, the program expanded to holistically meet the needs of clients and reach a sustainable community-driven program (Fig. 1). The HCV care model functions through: (1) HCV education and advocacy, (2) screening, (3) treatment, and (4) knowledge translation. All aspects of care in the community were and continue to be delivered by the community nurse-led health care team, who in response to an HIV outbreak in the community expanded their scope of practice to test (phlebotomy) and care for clients with HIV, with support from a visiting infectious disease physician and their urban health care/research team (Table 1). Community leadership and members supported this program development. Prior to 2016, direct-acting antivirals (DAAs) for HCV treatment were not covered through the federal program for Status First Nations individuals,3 treatment was unavailable in the community, and care outside of the community was poorly accessed. The inclusion of DAA treatment into the formulary in 2016 enabled the community to expand KYS and begin an HCV program. The community health care team provided HCV education to all sectors of the community, reducing stigma and creating awareness about HCV infection, risk factors, treatment options, and prevention strategies. Health care staff advocated for HCV care as a priority to Chief and Council. Community engagement (radio spots, educational booths) helped gain approval for KYS expansion from Chief and Council and the community at large. Meaningful engagement with the community during program development and delivery ensured ownership, greater commitment, program fidelity, and high-quality care. Chief and Council were given annual reports of HCV treatment outcomes (testing, incidence, number of clients in care, on treatment, etc.) that identified areas of improvement and priorities for funding. Liver Health Event Planning Photo. Liver Health Event Registration Photo. ACN’s HCV Care Model aims to achieve the targets set out by the World Health Organization’s strategy for viral hepatitis4 through key targeted steps with ambitious goals: (1) encourage screening uptake to identify all people living with HCV, (2) engage those not in care by offering preventative services/supports, (3) retain clients in treatment and support them during and posttreatment, (4) case-manage through nurse and outreach worker follow-up, and (5) monitor HCV treatment outcomes (Fig. 2). To minimize the risk for reinfection, cohorted treatment initiations among injecting partners and household members were implemented where possible. Knowledge translation events with academic, clinical, and administrative audiences advocated for improved access to screening and treatment for indigenous people. HCV education, screening, treatment, and knowledge translation are delivered simultaneously. Lessons learned inform better practices enhancing client retention and the program’s sustainability in reaching HCV elimination goals. The HCV elimination campaign commenced with four radio spots to create awareness and share HCV program goals, with community booths at Treaty Days for ongoing education/awareness. Peers promoted LHE attendance while distributing harm reduction supplies and education. ACN ran 10 LHEs between December 2016 and July 2019, with 18% of the community’s overall population and 34% of the adult population participating in LHEs, following the testing algorithm shown in Fig. 3. Of these, 64% were screened for HCV (n = 189). Of those identified to have chronic HCV infection, 90% were linked to care. Peers provided education and harm reduction supplies and answered questions for those not yet ready or interested in HCV care, bridging connections with the nursing team. Four to six peers were employed in the program. Prior to HCV program implementation, three known individuals started treatment for HCV infection. From 2016 to 2019, the program linked 83 to care, treated 55 (66%), and cured 42 (77%), as shown in Table 2. With recent advances in HCV treatment, HCV elimination is achievable. Limited availability of health care services in geographically isolated indigenous communities creates access barriers for HCV screening and treatment. This HCV care model was developed to address gaps, aiming for hepatitis C elimination. Risk for reinfections is high due to mobility between urban centers and other communities and active injection drug use during and posttreatment. Additional mental health and addiction support for individuals injecting drugs before, during, and after treatment to prevent infections and reinfections is required. Program delivery and outcomes are dependent on the presence of dedicated, trained, and motivated health care providers engaged with clients and fully committed toward program goals. This client-centered care model improved knowledge about liver health and access to liver disease assessments. FibroScan score initially used for determining treatment eligibility served as a visual aid for clients to make lifestyle changes and promote liver health. It was an invaluable engagement tool with clients. The health care team developed expertise in HCV care and management. The program was acknowledged by provincial, national, and international audiences, drawing positive regard toward ACN. The model can be used as a template and adapted to address other chronic illnesses in other communities to address their health priorities. Testing events have been paused temporarily to redirect efforts to control the spread of coronavirus disease 2019 (COVID-19). Active clients continue to be supported through treatment in the community by the community program staff with support from urban clinicians through in-person visits and virtual care.

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