Between October 2015 and June 2018, Dr. Margo Pearce met with Indigenous people living with HCV to understand what can be done to better support and facilitate Indigenous people’s access to treatment. Canadian data shows that Indigenous people are disproportionately affected by HCV with an incidence rate of 4.7 times higher compared to non-Indigenous people1. The aim was to inform the development of decolonizing HCV programming by putting forward pragmatic recommendations based on the lived experiences of Indigenous people living with or treated for HCV and the perspectives of HCV treatment providers. Dr. Pearce interviewed 45 HCV-affected participants from the Cedar Project and CCC and 10 HCV treatment providers for this study. The interviews took place in Vancouver, Prince George, Sudbury, and Regina.
Three overarching and interdependent themes emerged from the collected data:
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- 1) Understand colonization as a social determinant of health and wellness among Indigenous people living with HCV
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- Understanding that the health disparities affecting Indigenous communities stem from colonization and the ongoing effects of residential schools and foster care systems. Colonization has fueled systemic racism, stigma, and discrimination towards Indigenous communities and has caused unremitting stress amongst Indigenous peoples.
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- 2) Treat us with respect: create and maintain trust within the doctor-patient relationship
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- Patient-provider relationships were perceived as respectful, disrespectful, and a mix of both. Respectful relationships with providers were comprised of authenticity and consistency with regards to respect, acceptance of substance use, support of overall well-being, and right to self-determination (e.g. involving Indigenous patients in each stage of their HCV treatment and advocating for Indigenous patients in instances of stigma and discrimination coming from other healthcare providers). Disrespectful relationships with providers consisted of a lack of understanding about colonization and systemic violence as determinants of health, and unsafe attitudes and actions (e.g. purposely withholding treatment and paternalistic judgments).
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- 3) Identify, build, and strengthen circles of care
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- Weaving Indigenous healing and culture into the foundations of HCV clinical care by offering helpful individuals and resources (e.g. Elders and Indigenous navigators) to help HCV-affected Indigenous people navigate health challenges and systemic barriers to healthcare, including HCV treatment and cure.
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Analyses of these interviews were presented during Canadian Association for HIV Research (CAHR) in 2018 and 2019 by Dr. Pearce and Kate Jongbloed. The manuscript has been published in the International Journal of Drug Policy. The article can be found here: https://pubmed.ncbi.nlm.nih.gov/31525640/
A word from Dr. Pearce – “I would like to thank all the study coordinators and staff at each study site for the support in this work”.