Life after cure – preliminary findings from the post-cure project

What does life look like for people after they have cleared hepatitis C?

Researchers in the GLaD program recently explored these questions by conducting 30 interviews with people who work with hepatitis C–affected communities, including peers, policymakers, community health workers, nurses, lawyers and practitioners from a range of organisations in New South Wales, Victoria and Queensland. These interviews focused on perceptions of the individual impact of treatment with direct-acting antivirals (DAAs) and the larger public health efforts to eliminate hepatitis C, including what legal, policy, social and service-delivery systems shape ongoing experiences of stigma and discrimination in the affected communities.

This is the second of two posts outlining preliminary findings from these interviews. You can read the first here. 

Hepatitis C-related stigma and discrimination persists

Many participants believe that the DAA revolution has not eradicated stigma and discrimination. A majority of participants said that hepatitis C–related stigma can persist for people after cure. It also operates as a barrier, in their view, that prevents people from accessing testing and treatment to begin with. As well as fears of and misunderstandings about blood-borne viruses more broadly, the stigma around hepatitis C remains heavily associated with – and hard to disentangle from – attitudes to injecting drugs.

When asked about settings in which discrimination was most commonly experienced, participants overwhelmingly nominated primary health settings including general practices, outpatient hospital departments and mental health services, echoing the findings of other studies. It was said that there is a perception among practitioners, particularly in general practice, that people who use drugs are ‘complex’ patients with multiple health problems to treat or may be ‘difficult’.

As for the post-cure experience, several stakeholders felt that if a person’s previous hepatitis C status remained on their medical records, judgements may be made in these settings, including assumptions about people’s drug use, and that negative attitudes to people who use drugs could hamper access to health care. Several participants speculated that even among people cured of hepatitis C, past negative and discriminatory experiences often mean they may continue to avoid primary health care settings. ‘It doesn’t just go away for people when they’ve had those kinds of experiences’, one interviewee commented, ‘you know, treated as an infectious person.’

In prisons and in some alcohol and other drug treatment services where there are potentially larger cohorts of both people who use drugs and people who are hep C positive, discrimination is reported to operate differently, but still to occur.

Hepatitis C antibody test widely misinterpreted

An emerging issue in the post-DAAs landscape was a perceived-to-be widespread misunderstanding of the meaning of positive hepatitis C antibodies in a person’s blood test results. According to several stakeholders, positive antibodies are sometimes understood to mean that a person ‘has hepatitis C’ and that there may be a risk of onward transmission. These misinterpretations of antibody test results are said to arise in medical, employment and some other settings, and to potentially foster assumptions about individual’s past or ongoing drug use.

The stigma of reinfection

The issue of reinfection and the challenges it poses to elimination efforts is being widely discussed in public health conversations, and was raised by a number of the stakeholders we talked to. It emerged as a particular matter of concern through its capacity to (re)activate feelings of shame, self-blame or failure in individuals who are re-infected. ‘They often feel as though they’ve failed, and they know we’ve invested time and energy and, I guess, taxpayer’s money… when they come back reinfected, they feel as though that’s a failure’, one participant explained. Several participants also pointed to the occurrence of reinfection as a catalyst for potentially negative judgements among those administering or enabling treatment about which types of people ‘deserve’ to receive treatment. Some recommended a need to revise or carefully consider the language and meanings around both re-infection and re-treatment.

Other barriers remain

While many stakeholders are optimistic about the impact of DAAs and the impetus that elimination targets can provide for positive public health interventions, a significant number are also concerned about a too-narrow focus on elimination. A broad swathe of issues compete for the attention of people living with hepatitis C, including, for some, homelessness, unemployment and other chronic health – and mental health – conditions. Treatments alone won’t resolve these diverse challenges. As one stakeholder put it: ‘the free, easy-to-take, super-effective treatments that will cure your hep C in in 8 weeks do nothing about these systemic factors… For someone who is homeless and has no safe place to store medication, an 8-week course of tablets is just as inaccessible as a 6-month course of interferon injections.’ Social, housing, employment, health issues and other facets of people’s lives may create complex barriers for people across the communities of people affected by hepatitis C.

Other concerns that emerged from these conversations included the impact of elimination efforts on both harm reduction and disease prevention efforts, including access to needle-syringe programs and opioid substitution therapy coverage. The criminal status of injecting drug use was identified by some as a key mechanism that reinforces stigma and discrimination for people with, at risk of contracting or cured of hepatitis C.

The next stage

These preliminary findings are from the second stage of the post-cure project, following an initial stage in which project researchers mapped the existing Australia case law and statutes relevant to hepatitis C. The findings of both stages one and two will help to inform and understand the next stage, which consists of focused interviews with people who have themselves undergone treatment with DAAs. Please contact us if you would like to be included in this phase of the project, or if you would like to find out more.

For more details on this project, click here.