What does life look like for people after they have cleared hepatitis C? Do people whose blood shows no detectable amount of the hepatitis C virus need to inform their doctor or dentist about their previous hepatitis C status? What about prospective employers or insurance providers? Does hepatitis C–related stigma and discrimination remain a challenge for people post-cure? In what ways, and in what settings?
Researchers in the GLaD program recently completed 30 interviews with people who work with hepatitis C–affected communities about these questions and more.
As part of a major Australian Research Council–funded project on the post-cure lives of people treated for hepatitis C, GLaD researchers Emily Lenton and Dion Kagan interviewed peers, policymakers, community health workers, nurses, lawyers and practitioners from a range of organisations in New South Wales, Victoria and Queensland. The focus of the interviews was the impact of direct-acting antivirals (DAAs) on individuals who have had treatment and on work in the sector. The interviews investigated how Australia is going in its efforts to eliminate hepatitis C, perceptions of ‘post-cure’ life, and an exploration of any legal, policy, social and service-delivery practices that might shape ongoing experiences of stigma and discrimination among affected communities.
Although many of these stakeholders remain positive about the benefits of DAAs and the project of elimination, they are also concerned about a range of issues, including equitable access to health care for people with hepatitis C and people who inject drugs, and how to keep these cohorts of people connected to care after cure. The management of and messaging around re-infection and re-treatment was another recurring topic in these interviews, as were the unintended effects of a public health model heavily focused on elimination.
Hepatitis C cure is still a good news story, but post-cure lives remain mysterious
Some years into the era of DAAs, many of our participants remain optimistic about the impact that treatment can have for individuals and excited about the prospect of elimination in Australia. And, by transforming the meaning of a hepatitis C diagnosis from one of chronicity to one of cure, DAAs offer health practitioners a ‘good news story’ to deliver to patients.
Some suggested that the new treatment regime may also help to ‘normalise’ hepatitis C, through a radically simplified treatment pathway that can be delivered outside of the specialist or hospital context, in general practice and other community settings. ‘If it can be addressed more quickly and painlessly’, one stakeholder said, ‘that has implications for prevalence and people’s experiences. You know, not feeling like they have to go through something that is punishing’. Other participants told us that the reduction in workload for prescribers and the professional and personal rewards of delivering a cure for a chronic condition to patients have contributed to this normalising effect. ‘We are seeing more [practitioners] in primary care less reluctant to prescribe and more GPs more likely to be prescribing out in the community’, reported one stakeholder. ‘I think the DAAs have also gone a long way in that respect.’
However, a number of stakeholders also expressed concern that post-cure lives weren’t well-documented. Several told us that post-cure experiences were not well understood, not part of their work, and not often prioritised in conversations taking place across the sector more broadly. ‘Once you are cured, we are done with you in a public health sense,’ reported one interviewee. ‘That space post-cure and any attendant stigma and discrimination… hasn’t come up in policy discussions at all.’ A number of those we talked to across a range of roles suggested that people may have particular needs post-cure, but that post-cure lives were not adequately addressed in the hepatitis C ‘cascade of care’.
To read more about their concerns in part 2 of these preliminary findings, click here.