“I want to get better, but…”: identifying the perceptions and experiences of people who inject drugs with respect to evolving hepatitis C virus treatments

Abstract

Background The advent of highly tolerable and efficacious direct-acting antiviral (DAA) medications has transformed the hepatitis C virus (HCV) treatment landscape. Yet, people who inject drugs (PWID) – a population with inequitably high rates of HCV and who face significant socio-structural barriers to healthcare access – continue to have disproportionately low rates of DAA uptake. The objective of this study is to explore how PWID with lived experience of HCV perceive and experience DAA treatment, in a setting with universal coverage of these medications since 2018. Methods Informed by a critical interpretive framework, we thematically analyze data from in-depth, semi-structured interviews conducted between January and June 2018 in Vancouver, Canada, with a purposive sample (n = 56) of PWID at various stages (e.g., pre, peri, post) of DAA treatment. Results The analysis yielded three key themes: (i) life with HCV, (ii) experiences with and perceptions of evolving HCV treatments, and (iii) substance use and the uptake of DAA treatments. First, participants described how health and healthcare conditions, such as the deprioritizing of HCV (e.g., due to: being asymptomatic, healthcare provider inaction, gatekeeping) and catalysts to care (e.g., symptom onset, treatment for co-morbidities) shaped DAA treatment motivation and access. Second, participants described how individual and community-level accounts of evolving HCV treatments, including skepticism following negative experiences with Interferon-based treatment and uncertainty regarding treatment eligibility, negatively influenced willingness and opportunities to access DAAs. Concurrently, participants described how peer and community endorsement of DAAs was positively associated with treatment uptake. Third, participants favoured HCV care that was grounded in harm reduction, which included the integration of DAAs with other substance use-related services (e.g., opioid agonist therapy, HIV care), and which was often contrasted against abstinence-focused care wherein substance use is framed as a contraindication to HCV treatment access. Conclusions These findings underscore several equity-oriented healthcare service delivery and clinician adaptations that are required to scale up DAAs among PWID living with HCV, including the provision of harm reduction-focused, non-stigmatizing, integrated, and peer-led care that responds to power differentials.

Future destinations and social inclusion scoping review: how people cured of hepatitis C (HCV) using direct- acting antiviral drugs progress in a new HCV-free world

“…HCV is described as being largely socially accepted and expected within injecting drug using social networks; HCV is a burden to bear and this may reinforce a stigmatised identity [ 26 , 33 , 37 , 38 , 40 ]. This narrative has not changed with advances in treatment [ 32 , 41 ].…”

“…Competing priorities may be the biggest challenge to overcome this perceived inevitability. This is especially relevant for those who are asymptomatic and may provide an explanation for low engagement by some despite the availability of DAAs [ 32 , 41 – 44 ].…”

“…Restrictions on access to HCV treatment have reinforced pervasive social narratives about worthiness of those who use drugs for treatment for hepatitis C, with patients reporting gratitude rather than expectation of treatment [ 19 , 42 ]. This narrative has evolved with treatment options from perceived inability to comply in the interferon-era to questions of cost of treatment and merit to receive scarce resources in the DAA era [ 32 , 39 , 41 , 44 , 46 ].…”

“…The transformation in HCV care has been enthusiastically embraced by clinicians, however, has yet to be widely accepted by patients due to a culture of caution, confusion and doubt [ 27 , 39 ]. At a patient level there are descriptions of disappointment and scepticism that a pill could deliver the hoped for social transformation against a back drop of complex and long standing social problems and stigma [ 41 , 47 ].…”

“…The legacy of the interferon-era continues to shape how people who use drugs perceive HCV, their expectation and experience of treatment [ 39 , 41 ]. The interferon-era was synonymous with debilitating side effects and as a result patients are described to have anticipation of a similar experience with DAAs [ 27 , 41 , 46 ].…”