Hepatitis C prevention, testing and treatment among Indigenous people in Canada

Prevention in Focus PiF 2025 Fall

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Indigenous people are included as a priority population in the Blueprint to Inform Hepatitis C Elimination Efforts in Canada.1 Priority populations are defined in the Blueprint as populations that experience challenges in accessing hepatitis C care and services and that may need tailored interventions to ensure they have equitable access to care as part of the effort to reach the World Health Organization goal of eliminating hepatitis C as a public health threat by 2030. Other priority populations named in the Blueprint include gay, bisexual and other men who have sex with men; immigrants and newcomers from countries where hepatitis C is common; people born between 1945 and 1975; people who use drugs; and people with experience in the prison system.

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This article summarizes key points from a literature review on the historical and current context of hepatitis C prevention, testing and treatment among Indigenous people in Canada and the importance of Indigenous-led hepatitis C programs and initiatives.2 The review notes that Indigenous people are the only priority population in the Blueprint included on the basis of their identity rather than on the basis of a specific action or circumstance. This review does not view Indigeneity as a risk factor for hepatitis C but rather emphasizes a strengths-based approach in which Indigenous communities, identities, culture and wellness practices contribute to the liver health and wellness of Indigenous people.

In examining hepatitis C prevention, testing and treatment among Indigenous people in Canada, the article reviews the literature in eight areas:

  • colonial context and the current experience of hepatitis C
  • acknowledgment of Indigenous lived experience within current approaches to hepatitis C
  • community-directed knowledge sharing and integration
  • relevant data connected to community experience
  • wellness-focused equitable healthcare
  • successes through micro-elimination, task shifting and creative innovation
  • regional roadmaps to hepatitis C elimination
  • data ownership

Colonial context and the current experience of hepatitis C

The colonization of what is now Canada by Europeans introduced systems that continue to impact the experiences of Indigenous people today. Colonial systems disrupted the traditional practices promoting and supporting the well-being of Indigenous people, such as Indigenous ways of self-governance, social customs, and medicinal and spiritual practices. These colonial systems of control include:

  • legislation that defines the relationship between the Canadian government and Indigenous people, including their access to healthcare
  • relocation of Indigenous people to reserves
  • the separation of Indigenous people from their communities and culture through the residential school system

The loss of culture and autonomy and the resulting grief, trauma and related psychological and emotional impacts of these losses continue to affect Indigenous people and their wellness today. The review notes that substance use by Indigenous people is one related psycho-emotional outcome that can carry its own sense of stigma, psychological and emotional challenges and risk for hepatitis C transmission. Indigenous people continue to be impacted by current gaps and inequities in the healthcare system, including limited infrastructure and funding and a focus on healthcare in urban settings.

While the literature recognizes the disproportionate impact of hepatitis C among Indigenous people, the review found few examples of initiatives to address hepatitis C from a wellness or healing perspective and emphasizes the need to disrupt the current disparaging narrative of hepatitis C among Indigenous people with these perspectives.

Acknowledgment of Indigenous lived experience within current approaches to hepatitis C

An outcome of the historical and ongoing impact of colonial systems on Indigenous people is a mistrust of the healthcare system and healthcare providers by Indigenous people. Current disparities in how healthcare is delivered include a lack of culturally supportive care for Indigenous people, with the literature identifying:

  • dismissal of the medical needs of Indigenous people by healthcare providers
  • experiences of racial discrimination
  • stigma toward Indigenous people with a history of substance use
  • lack of trauma-informed care
  • dismissal of traditional healers and practices by healthcare providers
  • care delivered with rigid timelines and in stark, clinical spaces
  • a focus on addressing disease rather than wellness
  • a focus on the individual rather than the community
  • lack of relational care or engagement by healthcare providers

The review notes that hepatitis C is identified as a colonial illness by Indigenous people and it is necessary to address hepatitis C with anti-colonial awareness in a way that builds trust and supports healing.

Community-directed knowledge sharing and integration

Knowledge sharing is an important component of addressing hepatitis C among Indigenous people. This includes creating resources for Indigenous people that are not stigmatizing and address fear of hepatitis C treatment. It also includes creating resources for service providers that are not stigmatizing, that address the reluctance of some service providers to treat hepatitis C among Indigenous people and that scale up their ability to deliver services and remove barriers to treatment.

The review found that while the literature acknowledges the need for cultural safety training and culturally safe care, there is less evidence that recommendations on cultural safety are being put in practice; more work is needed in this area. As an example, the review highlights that connections to culture, land, ceremony, traditional knowledge sharing and community-based approaches with a focus on wholistic well-being should be integrated into engagement, funding, strategy, innovation and awareness campaigns for Indigenous people as they are integral components of their wellness and resilience.

Relevant data connected to community experience

Quantitative data in the literature continue to present Indigenous status as a risk factor for hepatitis C and focus on rising incidence rates, increasing mortality and increasing disparities in hepatitis C diagnosis and care. Prevalence data also provide an incomplete picture of hepatitis C among Indigenous people because of limitations in how the data are collected; for instance, some provinces do not collect prevalence data among Indigenous communities. If incomplete data are used to make decisions about funding and hepatitis C programming for Indigenous people, the decisions may not be appropriate.

The review discusses the importance of pairing quantitative data on Indigenous people who have hepatitis C with stories from the living experience of Indigenous people to provide context for the numbers collected. For example, data illustrating delayed linkage to hepatitis C care following testing should be viewed alongside information on the barriers to care experienced by Indigenous people.

Wellness-focused equitable healthcare

Many barriers impact Indigenous people’s access to and engagement in hepatitis C treatment and care, including:

  • lack of access to primary care, resulting in people seeking care through emergency departments, which may not prioritize the diagnosis and treatment of hepatitis C
  • social instability that impacts individuals’ capacity to start or stay connected to treatment and care
  • lack of communication
  • experiences of stigma and devaluation

The review highlights the fact that current hepatitis C care pathways are limited in their ability to account for individual and community needs and that while it is important to minimize structural barriers to care, it may be more relevant to tailor care in ways that are significant to Indigenous people. This includes care that is decolonized, connected to culture, focused on wellness, land based and inclusive of self-governance. The review highlights a framework incorporating the five Rs of respect, relationship, responsibility, relevance and reciprocity that can be used to inform a community-based approach to addressing hepatitis C within Indigenous communities.3

Successes through micro-elimination, task shifting and creative innovation

The review presents examples of projects addressing hepatitis C within a specific community or region that have had a positive impact on Indigenous communities and that have addressed hepatitis C through Indigenous understandings of self, community and wellness. These successes include efforts involving micro-elimination, task shifting and creative innovation. Here are some examples:

  • A nurse-led model in British Columbia provides hepatitis C screening and treatment within a housing site that includes Indigenous people. Nurse-led teams have been shown to decrease barriers to care and increase community collaborations while supporting wholistic engagement in care.
  • The Know Your Status model of care from the Ahtahkakoop Cree Nation in Saskatchewan includes a focus on oneself within the community, not just as one individual patient. Community approaches align with traditional Indigenous perspectives of wellness and culture.
  • A hepatitis C testing collaboration between two Indigenous communities in northern Ontario and an urban liver clinic took a community-wide, health-based approach to hepatitis C, rather than a risk-based approach.
  • ECHO+ is a telemedicine program in Alberta that provides hepatitis C care to Indigenous communities in a way that incorporates both Western and Indigenous approaches to health and wellness.
  • Wholistic Conversations on Liver Wellness: An Indigenous Perspective, Docustory film co-created and produced with First Nations and Metis community members in Alberta, combined culture, land-based visuals and storytelling to create a hepatitis C and harm reduction resource that includes biomedical information and personal wellness stories. This approach can help to destigmatize these topics.

Regional roadmaps to hepatitis C elimination

In addition to the national Blueprint to Inform Hepatitis C Elimination Efforts in Canada, regional roadmaps are in development across Canada that provide local context for a regional response to hepatitis C elimination and Blueprint recommendations. An Indigenous roadmap is also in development. 

The development of the regional roadmaps provides additional opportunities for consultation and community input, including consultations with and input from Indigenous people. For example, an Indigenous working group was formed during the development of the Ontario roadmap, and it continues to provide implementation insight for the roadmap after its launch. The Ontario roadmap also includes nine recommendations for policy and service delivery that address the response to hepatitis C among Indigenous people in Ontario.

Data ownership

The review highlights data collection and use issues of concern to Indigenous people, including the following:

  • Jurisdictional complications created by the Indian Act and the oversight of healthcare services for Indigenous people by the federal government impact how data are collected.
  • There is mistrust of biomedical data practices among Indigenous people following experiences of data abuse and theft, as well as the theft of traditional knowledge. This includes experiences with deceptive research practices such as population data being collected and shared without permission or community involvement.
  • The current focus on health disparities among Indigenous people does not include an equal consideration of the colonial origins of these disparities and their continued impact and there is a lack of focus on the strengths and resilience of Indigenous people and their community-led response to hepatitis C.

A community-led, collaborative approach centred around Indigenous authority and ownership is needed to address data collection and use issues. A reorientation of assumptions and approaches to data collection requires incorporating the following principles:

  • The First Nations principles of ownership, control, access and possession (OCAP) assert that First Nations must have control over the collection, ownership and use of their data, information and cultural knowledge.
  • The CARE Principles for Indigenous Data Governance (collective benefit, authority to control, responsibility and ethics) were developed in response to calls for more open sharing and use of government and research data. The open data movement does not take into consideration the historical context and power imbalance impacting the collection of Indigenous data, and the CARE principles call for use of Indigenous data in ways that respect and advance Indigenous self-determination and benefit Indigenous people.

The review highlights two initiatives exemplifying principles of Indigenous data ownership:

  • The Cultural Responsiveness Framework developed by the Federation of Sovereign Indigenous Nations incorporates data ownership in the shaping of strategic directions, objectives and an operating plan for a wellness-based approach to healthcare delivery for Indigenous people.
  • The Cedar Project in British Columbia, an Indigenous-governed cohort study involving young Indigenous people who use drugs, has used project data to develop actionable initiatives to address wellness and healing.

Implications for service providers

The literature review promotes a fuller understanding of hepatitis C among Indigenous people that considers the impact of colonial and other disrupting factors on Indigenous communities. It also promotes using a strengths-based approach informed by Indigenous understandings of wellness to address hepatitis C among Indigenous communities and provides many examples of Indigenous-led programs and initiatives. Key considerations for service providers from this review include the following:

  • Indigenous culture and community should be recognized as strengths fundamental to the health, wellness and resilience of Indigenous people and promoted in place of narratives that present being Indigenous as a risk factor for hepatitis C. This includes recognizing family, ceremony, land-based perspectives and anti-colonial approaches to health and wellness. Disparaging narratives of Indigenous people and hepatitis C such as high prevalence rates should be considered within the historical context and current inequities shaping Indigenous people’s experience of hepatitis C.
  • Indigenous worldviews and understandings of wellness should be part of programs and services for Indigenous people, training for those providing hepatitis C care to Indigenous people, and research initiatives related to Indigenous people. This includes incorporating the living experience and voices of Indigenous people into hepatitis C programs, services and research, and more importantly, supporting Indigenous-led programs, services and research. It also includes using Indigenous-led frameworks reflecting Indigenous understandings of wellness to inform program development and delivery.
  • Service providers should be mindful of how data on Indigenous people and hepatitis C are collected and used. This includes pairing quantitative data with stories from the living experience of Indigenous people and an understanding of colonial context and current inequities to create a fuller picture of the experiences of Indigenous people. A reorientation of assumptions and approaches to data collection and use also includes incorporation of the Indigenous-led OCAP and CARE principles.

Incorporating these considerations into frontline work, policy development and research will help service providers to redefine their relationship with Indigenous people and drive them to promote liver health and wellness in ways that are meaningful to Indigenous communities.

Resources

Hepatitis C testing and treatment within supportive housing sites – CATIE evidence brief 

Ahtahkakoop Know Your Status Hepatitis C Program

A collaborative approach to hepatitis C testing in two First Nations communities of northwest Ontario — Canadian Liver Journal

Wholistic conversations on liver wellness: An Indigenous perspective – Docustory co-created and produced with First Nations and Metis community members in Alberta

The Ontario hepatitis C elimination roadmap – Ontario Hepatitis C Elimination Planning Group, Advisory Committee and Working Groups

Journeys to wellness: prairie hepatitis C roadmap – Waniska Indigenous Centre

The First Nations Principles of OCAP – First Nations Information Governance Centre

CARE Principles for Indigenous Data Governance – Global Indigenous Data Alliance

Cultural Responsiveness Framework – Federation of Sovereign Indigenous Nations

CanHepC National Indigenous Roadmap – Waniska Indigenous Centre

References

  1. Canadian Network on Hepatitis C. Blueprint to Inform Hepatitis C Elimination Efforts in Canada. Montreal: Canadian Network on Hepatitis C; 2019. Available from: https://cdn.ca.yapla.com/company/CPYfgPV3CnIUJxhGEwBsuytvM/asset/files/blueprint/blueprint_hcv_2019_05.pdf
  2. Dunn KPR, Biondi MJ, Lee SS. Hepatitis C diagnosis and treatment among Indigenous people in a Canadian context: challenges and community-led solutions. Microorganisms. 2024;12(11):2364. Available from: https://www.mdpi.com/2076-2607/12/11/2364.
  3. Dunn KPR, Williams KP, Egan CE, et al. ECHO+: improving access to hepatitis C care within Indigenous communities in Alberta, Canada. Canadian Liver Journal. 2021;5(2). Available from: https://utppublishing.com/doi/full/10.3138/canlivj-2021-0027.

About the author(s)

Erica Lee is CATIE’s manager of website content and evaluation. Since earning her master of information studies, Erica has worked in the health library field, supporting the information needs of frontline service providers and service users. Before joining CATIE, Erica worked as the Librarian at the AIDS Committee of Toronto (ACT).