"Apparently, you can only be treated once": A qualitative study exploring perceptions of hepatitis C and access to treatment among people who inject drugs visiting a needle and syringe program

Guillaume Fontaine; Justin Presseau; Julie Bruneau; Andrea M Patey; Zack van Allen; Sameh Mortazhejri; Stine Bordier Høj; Jui-Hsia Cleo Hung; Jeremy M Grimshaw

doi:10.1016/j.drugpo.2023.104124

"Apparently, you can only be treated once": A qualitative study exploring perceptions of hepatitis C and access to treatment among people who inject drugs visiting a needle and syringe program

Int J Drug Policy. 2023 Nov:121:104124. doi: 10.1016/j.drugpo.2023.104124. Epub 2023 Jul 12.

Authors

Guillaume Fontaine¹, Justin Presseau², Julie Bruneau³, Andrea M Patey⁴, Zack van Allen⁵, Sameh Mortazhejri⁶, Stine Bordier Høj⁷, Jui-Hsia Cleo Hung⁶, Jeremy M Grimshaw⁸

Affiliations

¹ Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; Faculty of Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5; The Kirby Institute, UNSW, Wallace Wurth Building (C27), Cnr High St & Botany St, Kensington, NSW, Australia 2052. Electronic address: guil.fontaine@mcgill.ca.
² Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3; School of Psychology, University of Ottawa, 136 Jean-Jacques Lussier, Vanier Hall, Ottawa, ON, Canada K1N 6N5.
³ Research Centre, Université de Montréal Hospital Centre, 900 Saint Denis St, Montreal, QC, Canada, H2×0A9; Department of Family and Emergency Medicine, Université de Montréal, 2900, boulevard Édouard-Montpetit, Montréal, QC, Canada, H3T 1J4.
⁴ Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3; School of Rehabilitation Therapy, Queen's University, Louise D Acton Building, 31 George St, Kingston, ON, Canada K7L 3N6.
⁵ Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Psychology, University of Ottawa, 136 Jean-Jacques Lussier, Vanier Hall, Ottawa, ON, Canada K1N 6N5.
⁶ Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3.
⁷ Research Centre, Université de Montréal Hospital Centre, 900 Saint Denis St, Montreal, QC, Canada, H2×0A9.
⁸ Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; Faculty of Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3.

PMID: 37451942
DOI: 10.1016/j.drugpo.2023.104124

Abstract

Background: Access to hepatitis C care within harm reduction community organizations for people who inject drugs is crucial for achieving hepatitis C elimination. However, there is a lack of data on how perceptions of hepatitis C and treatment have changed among individuals visiting these organizations during the era of direct-acting antivirals (DAAs). This study aimed to explore the perceptions of hepatitis C and treatment access for (re)infection among individuals visiting a needle and syringe program in Canada.

Methods: Eighteen semi-structured interviews were conducted with individuals who recently injected drugs and visited a needle and syringe program. The interviews were guided by the Common-Sense Self-Regulation Model (CS-SRM) and aimed to explore cognitive and emotional representations of hepatitis C, perceptions of treatment, coping strategies and sources of information. Interviews were audio recorded, transcribed, and coded using thematic analysis.

Results: Most of the participants identified as male, were of white ethnicity and had a median age of 45. While most underscored the therapeutic advancements and the effectiveness of DAAs, they expressed confusion regarding the mechanisms of access to treatment, especially in cases of reinfection. Perceptions of the controllability of hepatitis C were significantly influenced by the stigmatizing discourse surrounding treatment access, cost, and public coverage. This influence extended to their intentions for seeking treatment. Participants emphasized the social consequences of hepatitis C, including stigma. Emotional representations of hepatitis C evolved along the care cascade, encompassing initial shock at diagnosis and later fear of reinfection following successful treatment.

Conclusion: Nearly a decade after the advent of DAAs, misinformation about treatment access persists. Findings underscore a nexus of internalized and institutionalized stigma associated with hepatitis C, drug use, and the challenges of cost and access to treatment, pointing to a clear need for education and service delivery optimisation in harm reduction community organizations.

Keywords: Harm reduction; Hepatitis C; Implementation science; Needle syringe program; People who inject drugs; Qualitative research.

MeSH terms

Antiviral Agents
Drug Users*
Health Services Accessibility
Hepacivirus
Hepatitis C* / complications
Hepatitis C* / drug therapy
Hepatitis C, Chronic* / drug therapy
Humans
Male
Pharmaceutical Preparations
Reinfection / complications
Reinfection / drug therapy
Substance Abuse, Intravenous* / complications
Substance Abuse, Intravenous* / drug therapy

Substances

Pharmaceutical Preparations
Antiviral Agents