- Hepatitis C affects an estimated 11% of inmates in federal prisons, and 14% in provincial prisons
- People with prison experience report healthcare stigma and distrust as barriers to testing
- Hepatitis C self-testing would be welcomed after release from prison, researchers found
More than 200,000 people are estimated to have chronic hepatitis C virus (HCV) infection in Canada. If left undiagnosed and untreated, chronic HCV can cause serious liver injury. This leads to a range of complications, including an increased risk of liver cancer.
Treatment for HCV is generally safe and simple, with pills taken once daily. It is also highly effective, with cure rates greater than 95 per cent. However, to treat people effectively, screening for HCV infection is necessary. One potential option for that in the future could be HCV self-testing.
People with prison experience
People who are currently imprisoned or have been in the past are disproportionately affected by HCV. Research indicates that about 11 per cent of inmates in federal correctional facilities have HCV, and the figure is 14 per cent in provincial correctional facilities.
A team of researchers in Montreal and Toronto conducted interviews with participants who had lived experience with correctional systems in Canada. The researchers gained valuable insight into the views and needs of people who have been imprisoned. This insight could be used to help inform HCV self-testing programs as a new option for HCV screening (and treatment, if necessary) of this population. Although HCV self-testing kits are not approved in Canada, the study by the researchers could be used to influence policy makers to bring this testing method to Canada. Self-testing could theoretically be another option to help populations become aware of their HCV status and facilitate their entry to care.
Study details
The study was done in cooperation with the Prisoners HIV/AIDS Support Action Network (PASAN), a community-based organization that works in harm reduction, HIV and HCV. The researchers stated that PASAN provides “support, education and advocacy for individuals who are currently or formerly incarcerated in Ontario.” PASAN also works with other organizations involved in providing housing, social services and healthcare to help reduce barriers faced by formerly incarcerated people.
Participants were recruited with the help of PASAN. Overall, 15 people (11 cisgender males and four cisgender females) were interviewed. Participants were asked about HCV self-testing kits, their views on potential print and online materials to promote the kits and how to order them, follow-up contact, and concerns and overall thoughts on self-testing for themselves and others who have been imprisoned.
Results
The interviews provided researchers with useful information. The researchers grouped their findings into key themes, as follows:
- authentic representation
- altruism triumphs in the face of stigma and uncertainty
- distrust of society, systems and self
- low barriers to testing
We now briefly explore these themes.
Authentic representation
The researchers stated that images appearing in print and online need to include “authentic pictures of real people who had been incarcerated or pictures of prison art done by people with experience in corrections.” They added that such imagery was appealing to participants because it made them feel represented.
Researchers stated that participants advised them that potential advertisements on HCV self-testing “should have just enough information without overwhelming the reader.” Furthermore, the researchers added that participants told them to include positive messaging to counteract HCV stigma, some statistics about HCV, and key information on how HCV is spread, as well as a list of key resources. Participants recommended that materials promoting an HCV self-test kit should emphasize that such kits are supplied at no charge.
The discussion about representation and testing led to another one about HCV care and treatment. One participant stated: “A lot of folks […] don’t know where to get treated, especially without being stigmatized.” The researchers stated that “access to stigma-free, supportive healthcare is essential for people with HCV who have been incarcerated.”
The participants suggested that a future website promoting HCV self-test kits for former prisoners could also facilitate access to other resources and materials, such as the following:
- fentanyl test strips
- naloxone kits
- HIV self-testing kits
The researchers emphasized the importance of using the right language for people with experience of incarceration. According to the researchers, participants noted that it was important to use language that “fostered dignity and empowerment” while not inadvertently reinforcing stigma against people living with HCV.
Altruism triumphs in the face of stigma and uncertainty
According to the researchers, “altruism led to a strong preference for receiving HCV self-testing kits immediately upon release from correctional facilities, so that people who have been incarcerated could have the option to self-test prior to going back to their communities.”
Participants disclosed experiences of profound stigma when they sought healthcare in the past. These negative experiences resulted in them not accessing subsequent healthcare. The researchers stated that the negative experiences of participants in the past “further reinforces the need for nonjudgmental and trauma-informed approaches to HCV self-testing initiative.” Their research uncovered that “stigma and feelings of shame can erode confidence and hinder engagement in care.”
Through the interviews, researchers found that participants “were not only motivated to self-test for their own health, but they also felt a sense of responsibility and desire to protect their families, partners, friends and the community around them from unknowingly transmitting HCV.”
Distrust of society, systems and self
As mentioned earlier, participants encountered stigma around HCV from healthcare providers and other parts of society. According to the researchers, this stigma caused participants to “distrust systems, such as healthcare organizations and even new technologies.” Participants were worried about the security of websites and other technologies with regards to privacy. The researchers stated that such distrust likely stemmed “from their experiences with the carceral system.” This distrust was a significant barrier to accessing services, particularly healthcare and HCV testing.
The researchers added that at times participants “struggled to trust themselves.” That is, they worried that they would [incorrectly] interpret instructions in potential self-test kits.
Low barriers to testing
According to the researchers, “participants recognized the ease of self-testing and related this to their experiences of COVID-19 self-testing.” One participant said to the interviewers: “Make [the testing procedure] easy so that we can execute it. [So that] I don’t have to jump through rings and hoops to get it done […]. Especially if I want to get it done. So, you need to break it down as [simply] as possible.”
If HCV self-testing kits become approved in Canada, participants recommended that they be dispensed in places where they routinely go—places that provide support to people who were incarcerated and where participants feel comfortable, such as the following:
- community organizations
- harm reduction sites
- supervised consumption sites
- health centres
- pharmacies
One participant also suggested that HCV self-testing kits could be distributed by probation officers.
Most participants were agreeable to getting access to HCV self-testing immediately after leaving prison. They stated that providing an HCV self-test upon release from prison would likely be helpful.
Should HCV self-testing kits become available in Canada in the future, the researchers encourage health systems to make the process (accessing the test, completing the test, reporting the result and getting a confirmatory test result) “simple, efficient, and easy to navigate.”
Bear in mind
The present study was an exercise to explore the views of people with lived experience of incarceration on HCV self-testing. The study collected much useful information that could be used by policy planners to help inform the implementation of HCV self-testing for this population.
The World Health Organization (WHO) has encouraged cities, countries and regions to help eliminate HCV as a public health concern by 2030. For this to happen, priority populations (such as those who inject drugs or who are currently or formerly incarcerated) need low-barrier access to HCV testing and, if they are found to have active infection, swift access to HCV care and treatment.
—Sean R. Hosein
Resources
Global Health Sector Strategies on, respectively, HIV, viral hepatitis and sexually transmitted infections for the period 2022-2030 (GHSS) – World Health Organization
The epidemiology of hepatitis C in Canada – CATIE
Canada’s progress towards eliminating viral hepatitis as a public health concern – Public Health Agency of Canada
REFERENCES:
- Barnett T, Muncaster K, Gemma O, et al. Hepatitis C self-testing and self-collection among people with experience in the Canadian carceral system: a qualitative study. BMC Infectious Diseases. 2026; in press.
- Akiyama MJ, Bialek T, Simonson R. The carceral-community cascade and HCV elimination. JAMA. 2025 Feb 4;333(5):369-370.
- Al Rawashdh N, Ferrufino CP, Cheng MM, et al. Cost-effectiveness of point-of-care hepatitis C virus RNA testing in the US. JAMA Network Open. 2026 Mar 2;9(3): e262658.