Original

Hepatitis C Care and Elimination in Nation: An Indigenous Community-­Led Model Mamata Pandey, Ph.D.,* Noreen Reed, R.N., B.Sc.N., M.N.,† Stephanie Konrad, M.Sc.,‡ Trisha Campbell, B.Sc.,§ Britin Cote, C.H.I.M.,§ Tanys Isbister, R.N.,† Vanessa Ahenakew, L.P.N.,† Patricia Isbister, B.A., D.M.S.,† Jodie Albert,† and Stuart Skinner, M.D., D.T.M.&.H.§,¶

Ahtahkakoop Cree Nation (ACN) is an indigenous HCV CARE MODEL DESCRIPTION community located in rural Central with Using the Learning Healthcare System framework,1 this a high prevalence of hepatitis C virus (HCV) infection. comprehensive HCV care model was built on the founda- Based on data from clinical records, approximately 12.5% tion of an existing community-based­ HIV model of care, of the community population (200 cases of N = 1600) 2 termed “Know Your Status” (KYS). Between 2016 and had a history of HCV infection (i.e., HCV antibody pos- 2019, the program expanded to holistically meet the itive). An existing program serving HIV clients identified needs of clients and reach a sustainable community-driven­ almost 97% of clients to be HCV antibody positive, with program (Fig. 1). The HCV care model functions through: few receiving HCV treatment. To address the need for (1) HCV education and advocacy, (2) screening, (3) treat- HCV care in the community, health care staff supported ment, and (4) knowledge translation. by ACN leadership integrated HCV care with the HIV pro- gram, operating toward HCV elimination. This review de- Phase One: KYS HIV Program Development and scribes the indigenous community-led­ HCV program and Delivery elimination campaign from inception to its current state All aspects of care in the community were and continue and outcomes. to be delivered by the community nurse-led­ health care

Abbreviations: ACN, ; BMI, body mass index; COVID-­19, coronavirus disease 2019; DAA, direct-­acting antiviral; DOT, directly observed therapy; EMR, Electronic Medical Record; HCV, hepatitis C virus; KYS, Know Your Status; LHE, Liver Health Event; NIHB, National Indian Health Board; OST, opioid substitution therapy; POC, point of care; SVR, sustained virological response. From the * Research, Saskatchewan Health Authority, Regina, Saskatchewan Canada; † Ahtahkakoop Cree Nation Health Centre, Ahtahkakoop, Saskatchewan Canada; ‡ Indigenous Services Canada, Regina, Saskatchewan Canada; § Wellness Wheel, Regina, Saskatchewan Canada; and ¶ University of Saskatchewan. Potential conflict of interest: Nothing to report. Received March 15, 2021; accepted March 25, 2021.

View this article online at wileyonlinelibrary.com © 2021 by the American Association for the Study of Liver Diseases

320 | Clinical Liver Disease, VOL 17, NO 4, APRIL 2021 An Official Learning Resource of AASLD Original HCV Care in Ahtahkakoop Cree Nation Pandey et al.

FIG 1 Timeline of phase rollout for ACN’s Hepatitis C Care Model.

team, who in response to an HIV outbreak in the commu- Education and Advocacy. The community health care team nity expanded their scope of practice to test (phlebotomy) provided HCV education to all sectors of the community, and care for clients with HIV, with support from a visiting reducing stigma and creating awareness about HCV infectious disease physician and their urban health care/ infection, risk factors, treatment options, and prevention research team (Table 1). Community leadership and mem- strategies. Health care staff advocated for HCV care as a bers supported this program development. priority to Chief and Council.

Phase Two: Expansion to HCV Care Community engagement (radio spots, educational Prior to 2016, direct-­acting antivirals (DAAs) for HCV booths) helped gain approval for KYS expansion from treatment were not covered through the federal program Chief and Council and the community at large. Meaningful for Status individuals,3 treatment was unavail- engagement with the community during program devel- able in the community, and care outside of the community opment and delivery ensured ownership, greater commit- was poorly accessed. The inclusion of DAA treatment into ment, program fidelity, and high-­quality care. Chief and the formulary in 2016 enabled the community to expand Council were given annual reports of HCV treatment out- KYS and begin an HCV program. comes (testing, incidence, number of clients in care, on treatment, etc.) that identified areas of improvement and TABLE 1. COMPOSITION OF HEALTH CARE TEAMS priorities for funding. Community Health Care Team Visiting Health Care Team Screening and Treatment Plan. Community-­based Nurse manager Infectious disease physician screening events, referred to as Liver Health Events (LHEs), Registered nurse Registered nurse Licensed practical nurse Administrative support worker were developed and run quarterly, using point-of-­ ­care Peers (individuals with lived experience) Health researcher (POC) screening to prompt on-the-­ ­spot HCV viral load and Elders Epidemiologist Community outreach worker Health information management genotyping bloodwork, coupled with a FibroScan, to yield analyst a one-stop-­ ­shop rapid treatment assessment/initiation and Mental and addictions support worker Pharmacist minimize loss of follow-­up.

321 | Clinical Liver Disease, VOL 17, NO 4, APRIL 2021 An Official Learning Resource of AASLD Original HCV Care in Ahtahkakoop Cree Nation Pandey et al.

Liver Health Event Planning Photo.

Liver Health Event Registration Photo.

322 | Clinical Liver Disease, VOL 17, NO 4, APRIL 2021 An Official Learning Resource of AASLD Original HCV Care in Ahtahkakoop Cree Nation Pandey et al.

Phase Three: HCV Elimination Campaign Knowledge Translation. Knowledge translation events ACN’s HCV Care Model aims to achieve the targets set out with academic, clinical, and administrative audiences by the World Health Organization’s strategy for viral hepa- advocated for improved access to screening and treatment titis4 through key targeted steps with ambitious goals: (1) for indigenous people. 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 Phase Four: Sustainability them during and posttreatment, (4) case-manage­ through HCV education, screening, treatment, and knowledge nurse and outreach worker follow-up,­ and (5) monitor HCV translation are delivered simultaneously. Lessons learned treatment outcomes (Fig. 2). To minimize the risk for reinfec- inform better practices enhancing client retention and tion, cohorted treatment initiations among injecting partners the program’s sustainability in reaching HCV elimination and household members were implemented where possible. goals.

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

&DVHPDQDJHPHQW +HDOWKFDUHWHDPVSURYLGHGIROORZXSQXUVLQJ 1XUVLQJRXWUHDFKZRUNHUDQGSHHUVSURYLGHGFRQWLQXHGVXSSRUW DIWHUWUHDWPHQWFRPSOHWLRQ

IXQGHGSRVLWLRQVIRURXWUHDFKZRUNHUV LQSODFH

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

FIG 2 Summary of five targeted HCV Care Model goals and measurable outcomes to achieve HCV elimination in ACN (December 2016 to December 2019).

323 | Clinical Liver Disease, VOL 17, NO 4, APRIL 2021 An Official Learning Resource of AASLD Original HCV Care in Ahtahkakoop Cree Nation Pandey et al.

HCV CARE MODEL OUTCOMES Engaging Those Not in Care HCV Education and Screening Peers provided education and harm reduction supplies and answered questions for those not yet ready or inter- The HCV elimination campaign commenced with four radio spots to create awareness and share HCV pro- ested in HCV care, bridging connections with the nursing gram goals, with community booths at Treaty Days for team. Four to six peers were employed in the program. ongoing education/awareness. Peers promoted LHE at- tendance while distributing harm reduction supplies and HCV Treatment education. ACN ran 10 LHEs between December 2016 Prior to HCV program implementation, three known in- and July 2019, with 18% of the community’s overall population and 34% of the adult population participat- dividuals started treatment for HCV infection. From 2016 ing in LHEs, following the testing algorithm shown in to 2019, the program linked 83 to care, treated 55 (66%), Fig. 3. Of these, 64% were screened for HCV (n = 189). and cured 42 (77%), as shown in Table 2. Of those identified to have chronic HCV infection, 90% were linked to care. DISCUSSION

TABLE 2. OUTCOME VARIABLES FOR LHES IN ACN With recent advances in HCV treatment, HCV elimina- (DECEMBER 2016 TO DECEMBER 2019) tion is achievable. Limited availability of health care ser- Positive vices in geographically isolated indigenous communities Tested with POC and/or Tests for creates access barriers for HCV screening and treatment. Phlebotomy HCV Treated Cured This HCV care model was developed to address gaps, aim- 189 120 55 42 ing for hepatitis C elimination.

WƌĞͲƚĞƐƚĐŽƵŶƐĞůŝŶŐĂŶĚ EŽ ,sĞĚƵĐĂƟŽŶ EĞǁ&ŝůĞ WŽŝŶƚŽĨĂƌĞƚĞƐƚƌĞƐƵůƚ ĂŶĚ zĞƐ ĞǀĂůƵĂƟŽŶ ŽĨƌŝƐŬ ĨĂĐƚŽƌƐĨŽƌ ,sĂŶĚͬŽƌ ŽƚŚĞƌ>ŝǀĞƌ ŝƐĞĂƐĞƐ dĞƐƚĐŽƵŶƐĞůŝŶŐĂŶĚ WŚůĞďŽƚŽŵLJĨŽƌ ŽƚŚĞƌĞĚƵĐĂƟŽŶ ,sǀŝƌĂůůŽĂĚ͕ ŐĞŶŽƚLJƉĞĂŶĚdž ;ƐŽŵĞůŝǀĞƌƚĞƐƚƐͿ EŽ ƌĞLJŽƵϭϴLJĞĂƌƐŽĨĂŐĞ ŽƌŽůĚĞƌĂŶĚŚĂǀĞƚĞƐƚĞĚ ƉŽƐŝƟǀĞĨŽƌ,sďĞĨŽƌĞ͍ zĞƐ

&ŝďƌŽ^ĐĂŶ ƐĐŽƌĞŚŝŐŚ

EŽ zĞƐ džŝƐƟŶŐĮůĞƌĞǀŝĞǁ ǁĞŝŐŚƚ͕ŚĞŝŐŚƚ͕D/͕ĂŶĚ ŽƚŚĞƌŚĞĂůƚŚŵĞĂƐƵƌĞƐ ZĞͲƚĞƐƟŶŐ ĂŶĚĐŚĞĐŬĨŽƌ ZĞĨĞƌƌĂůƚŽ ,sŽƌ ĐŽŶĮƌŵĂƚŽƌLJƚĞƐƚ;,s ^ƉĞĐŝĂůŝƐƚZĞͲ &ŝďƌŽ^ĐĂŶ ZEͿĚŽŶĞ ƚĞƐƟŶŐ ƌĞĐŽŵŵĞŶĚĞĚ ƌĞĐŽŵŵĞŶĚĞĚ

FIG 3 HCV testing and algorithms in Ahtahkakoop.

324 | Clinical Liver Disease, VOL 17, NO 4, APRIL 2021 An Official Learning Resource of AASLD Original HCV Care in Ahtahkakoop Cree Nation Pandey et al.

Challenges and Learning Testing events have been paused temporarily to redi- Risk for reinfections is high due to mobility between rect efforts to control the spread of coronavirus disease urban centers and other communities and active injec- 2019 (COVID-19).­ Active clients continue to be supported tion drug use during and posttreatment. Additional men- through treatment in the community by the community tal health and addiction support for individuals injecting program staff with support from urban clinicians through drugs before, during, and after treatment to prevent in- in-­person visits and virtual care. fections and reinfections is required. Program delivery and CORRESPONDENCE outcomes are dependent on the presence of dedicated, trained, and motivated health care providers engaged with Stuart Skinner M.D., D.T.M.&. H., Wellness Wheel, Regina, Saskatchewan, Canada. E-mail: [email protected] clients and fully committed toward program goals. REFERENCES

Successes and Achievement 1) Friedman C, Rubin J, Brown J, et al. Toward a science of learning systems: a research agenda for the high-­functioning Learning Health This client-centered­ care model improved knowledge System. J Am Med Inform Assoc 2015;22:43-50.­ about liver health and access to liver disease assessments. FibroScan score initially used for determining treatment eligi- 2) Ahtahkakoop know your status hepatitis C program. Available at: https:// www.catie.ca/en/pc/progr​am/ahtah​kakoo​p?tab=what. Published 2020. bility served as a visual aid for clients to make lifestyle changes Accessed March 12, 2021. and promote liver health. It was an invaluable engagement tool with clients. The health care team developed expertise 3) Non-­Insured Health Benefits program updates. Government of Canada. Sac-isc.gc.ca.­ Available at: https://www.sac-isc.gc.ca/eng/15780­ 79214​ ​ in HCV care and management. The program was acknowl- 611/1578079236​ 012#mar20​ 18a4.​ Published 2020. edged by provincial, national, and international audiences, drawing positive regard toward ACN. The model can be used 4) World Health Organization. Global health sector strategy on viral hep- atitis, 2016-2021.­ Geneva: World Health Organization. Available at: as a template and adapted to address other chronic illnesses http://apps.who.int/iris/bitst​ream/10665/​24617​7/1/WHO-­HIV-­2016.​ in other communities to address their health priorities. 06-­eng.pdf?ua=1. Published June 2016.

325 | Clinical Liver Disease, VOL 17, NO 4, APRIL 2021 An Official Learning Resource of AASLD