- A Toronto study analyzed differences in hepatitis C treatment experiences based on drug use
- People who injected drugs reported barriers to treatment access rooted in stigma
- They also reported receiving misleading information about treatment eligibility
Hepatitis C is a major and ongoing public health threat and is among the most burdensome infectious diseases in Canada. However, hepatitis C infection can be cured with highly effective direct-acting antiviral (DAA) treatment. Being cured of hepatitis C improves quality of life and long-term health outcomes and prevents transmission to other people.
People who inject drugs are a population that is disproportionately affected by hepatitis C in Canada. This is due to structural and social factors that create health inequities, such as the criminalization of drug use, poverty, housing insecurity and pervasive stigma. Canadian guidelines recommend that all people with chronic hepatitis C be considered for treatment, including people who use drugs. However, some studies have found lower uptake of treatment among people who inject drugs compared with people who do not inject drugs. Research on people who inject drugs’ experiences with hepatitis C treatment can help us understand facilitators and barriers to treatment access for this population. This is needed to tailor the planning and delivery of treatment services for people who inject drugs and to increase treatment uptake in this population.
Study details
Researchers in Toronto wanted to better understand barriers to hepatitis C treatment access. They compared experiences and perceptions of DAA treatment among people who do and do not inject drugs. Participants were recruited with assistance from a hospital-based liver clinic and three community-based hepatitis C clinics that provide treatment support for people who use drugs or alcohol in downtown Toronto.
This study conducted four focus groups with 23 adults who had completed or were about to begin hepatitis C treatment. Two focus groups included only people who currently or previously injected drugs, while the other two groups consisted of people who did not inject drugs. The researchers asked questions about participants’ experiences being diagnosed with hepatitis C and navigating access to treatment. They used qualitative methods to analyze and interpret participant accounts.
Results
The researchers identified five themes to describe participant experiences of accessing hepatitis C treatment:
- being “worthy” of the cure
- stigmatizing environments
- importance of wraparound services and peer supports
- ongoing perceptions of contagiousness
- challenging stigma with population-based testing
These themes help to show the role of stigma in creating barriers to treatment for people who inject drugs.
Being “worthy” of the cure
After diagnosis, people who didn’t inject drugs were immediately referred and supported to connect with hepatitis C treatment services. These participants described how healthcare staff made them feel supported and comfortable through an organized process to obtain treatment.
Conversely, participants who used drugs said that they were not immediately informed about or referred to treatment by healthcare providers. Instead, many learned about treatment from other people who use drugs. In some cases, participants reported that they were told they would need to abstain from drugs and/or alcohol to receive treatment. They expressed needing to prove themselves worthy of being cured. These experiences fueled internalized stigma, which acted as a barrier to pursuing treatment for people who injected drugs.
Stigmatizing environments
People who didn’t inject drugs accessed hepatitis C care in healthcare settings that were not visibly identifiable as places that offered hepatitis C treatment. On the other hand, participants who injected drugs often accessed treatment in places that were known to be for people who use drugs and/or for people with hepatitis C. They pointed out that visiting these services meant disclosing their hepatitis C status or their drug use and that this could be a deterrent to accessing treatment in these spaces.
Importance of wraparound services and peer supports
Although using services designed for people who use drugs was sometimes seen as stigmatizing, the supports they provided helped participants who injected drugs overcome barriers that made it difficult for them to access care. These participants suggested that providing accessible harm reduction services, reimbursement for transportation costs, and support to address food and housing insecurity can make hepatitis C treatment more accessible.
People who injected drugs reported that the involvement of peers with lived and living experience of hepatitis C and drug use in the design and delivery of treatment services helped them develop trust and feel safe while accessing care. Participants recommended the involvement of peers in patient navigation, support groups and wraparound services.
Ongoing perceptions of contagiousness
Participants in both groups expressed concerns around their hepatitis C diagnosis. They described feeling shame and worry about passing hepatitis C to family members or being ostracized by peers.
For people who didn’t inject drugs, hepatitis C treatment allowed them to return to normal life – curing them not only of the virus but also of the stigma, shame and worry about being a potential source of infection. However, people who injected drugs reported having an ongoing sense of hepatitis C identity, in that they often felt challenged to prove they had been cured of hepatitis C. In healthcare settings and within their social networks, some people who injected drugs felt that they continued to be treated as though they were an ongoing source of infection even after being cured.
Challenging stigma with population-based testing
Participants in both groups reported a lack of public awareness about hepatitis C and its curability. They also noted that the common association of hepatitis C with injection drug use perpetuates stigma and can lead to missed diagnoses among people without known risk factors. Participants advocated for broader population-based testing for hepatitis C that can be incorporated into routine care. They felt that this could help to reduce stigma while also reaching more currently undiagnosed people.
Implications
This study discovered important differences in hepatitis C treatment experiences between people who do and do not use drugs. It provides insight into several ways that stigma can create barriers to treatment for people who inject drugs.
Accessible treatment for all, including people who use drugs, is needed to eliminate hepatitis C as a public health threat in Canada. Hepatitis C treatment programs should aim to reduce barriers to care commonly experienced by people who inject drugs (sometimes called low-threshold or low-barrier programs). This study emphasizes the importance of facilitating better access to care by preventing stigma in the ways and places that hepatitis C treatment services are offered. Frontline workers can support equity in treatment access by offering treatment regardless of patients’ drug use, countering the idea that people who inject drugs are inherently contagious, and helping patients access treatment discreetly, if desired. When possible, treatment services can also offer wraparound supports such as warm referrals, harm reduction services, peer supports and food supports to help people who inject drugs complete treatment.
REFERENCES:
- Lourenco L, Kelly M, Tarasuk J et al. The hepatitis C epidemic in Canada: an overview of recent trends in surveillance, injection drug use, harm reduction and treatment. Canadian Communicable Disease Report. 2021;47(12):561-70. Available from: https://doi.org/10.14745/ccdr.v47i12a01
- Popovic N, Williams A, Périnet S et al. National hepatitis C estimates: incidence, prevalence, undiagnosed proportion and treatment, Canada, 2019. Canadian Communicable Disease Report. 2022;48(11/12):540-9. Available from: https://doi.org/10.14745/ccdr.v48i1112a07
- Antoniou T, Pritlove C, Shearer D et al. Accessing hepatitis C direct acting antivirals among people living with hepatitis C: a qualitative study. International Journal for Equity in Health. 2023; 22(1):112.