Echoes and antibodies: Lingering legal issues for people affected by hepatitis C in a post-cure era

Kate Seear, Suzanne Fraser, Dion Kagan, Emily Lenton, Adrian Farrugia, and Sean Mulcahy,
Australian Research Centre in Sex, Health, and Society, La Trobe University
kylie valentine, Social Policy Research Centre & Centre for Social Research in Health, University of New South Wales

Hepatitis C is a blood-borne virus that is largely acquired through the sharing of needles, syringes, and ancillary injecting equipment. Over time, hepatitis C is potentially life-threatening. The virus primarily affects the liver and, if untreated, can lead to cirrhosis and cancer.

Though new drugs for the treatment of hepatitis C have emerged in recent years with the capacity to cure over 95% of people with the virus, people with (a history of) hepatitis C often continue to experience discrimination connected to the illicit and illegal status of injecting drug use and the stigma associated with addiction to drugs.

Importantly, antibodies exist in the blood of people with (a history of) hepatitis C that indicate that the virus was once present. Even after cure, these antibodies persist in the body. While antibodies pose no risk of disease progression or of viral transmission, healthcare professionals and others sometimes understand the presence of antibodies as evidence of having the virus and the disease.

Lingering traces of the virus are not only found in antibodies, but in legal records such as medical files and instruments. As hepatitis C is a notifiable condition, a record is made of any person who contracts the virus, and this is retained in their medical history. In other words, health records and antibodies are two ways that a person’s history of hepatitis C can linger in their lives, echoing beyond the point at which treatment has successfully cured them of the virus. These lingering traces of hepatitis C can generate ongoing stigma and discrimination, even after cure. And this is important, as people with (a history of) hepatitis C and people who inject drugs face routine discrimination, and the law can exacerbate this discrimination.

Laws and legal processes can shape discrimination, stigma, and mistreatment experienced by people (with a history of) hepatitis C, with the capacity to both reduce and reproduce it. Part of a major Australian Research Council funded project on addressing hepatitis C-related legal, policy, and practice discrimination in a post-cure world, our research has examined how hepatitis C surfaces in many different legal contexts, including criminal law, family and child protection law, social security law, migration law, insurance law, and other contexts.

The project comprised several stages, including a stage of ‘speculative legal mapping’ in which we collected statutes and case law that either explicitly reference hepatitis C or which may be relevant to the lives of people who have (or had) hepatitis C. In another stage of the project, we conducted 30 in-depth interviews with key stakeholders who work with hepatitis C-affected people and communities, such as lawyers, policymakers, service workers, and those in peer-led drug-user organisations, to understand the emerging and latent areas of concern in law, policy, and practice pertaining to post-cure lives. In a later stage of the project, we conducted 30 in-depth interviews with people who have undergone treatment for hepatitis C, to understand what life is like after cure and whether hepatitis C-related stigma and discrimination persists.

Our recently published project report has found that laws and legal practices have been slow to respond to the advent of new treatments, and the circumstances and needs of people living post-cure lives.

• In crimes compensation law, we found that mental or nervous shock due to concern about the possibility of contracting hepatitis C counted as an ‘injury’ for the purposes of victims of crime compensation, even if that shock only lasted for a short period, and even if the possibility of infection was deemed to be low.
• In criminal law, we found that courts have commonly taken an offender’s hepatitis C status into account in sentencing and that it can be an aggravating factor when the offending occasions an assumed risk of transmission to a victim, but it can be a mitigating factor when it impacts the health and wellbeing of the offender in prison.
• In insurance law, we found that even inadvertent and unintentional non-disclosure of (a history of) hepatitis C can be deemed material to the nature and extent of the risk to be underwritten and can effectively void insurance contracts; and that there is a lack of industry transparency from insurers about the data relied on in both the formation of insurance policies and in insurance practices.
• In social security law, we found that applicants for the disability support pension with a history of hepatitis C are placed in a double bind: hepatitis C – like any other disability – is only regarded as an impairment if it has been treated, but once hepatitis C is treated successfully, it is no longer considered an impairment.
• In migration and refugee law, we found that difficulties accessing treatment for hepatitis C in a home country may be considered in decisions about visa cancellation and refoulment.
• In health privacy law, we found that emerging public health technologies are expanding the collection and use of hepatitis C notifications data in ways that may perpetuate stigma and discrimination.

Across our research, we consider the implications of these legal and administrative approaches, including for public understandings of hepatitis C and injecting drug use, and for how these approaches towards the virus might relate to stigma and discrimination. Overall, we found that approaches to hepatitis C across different areas of law are variable, unpredictable, and inconsistently shaped by developments in biomedicine and health care. We found that, even for those who have undergone treatment, these laws create legal subjects who are simultaneously (medically) ‘cured’ and (legally) ‘marked’ as perpetual hepatitis C subjects.

Based on these findings, we have developed four key recommendations to address discriminatory practices.

• First, all Australian governments should consider removing requirements under law that all new hepatitis C notifications are identifiable and consider a mechanism by which people with a history of hepatitis C can remove their past hepatitis C status from medical records or restrict access to that information.
• Second, we need to explore the possibility that misconceptions about antibodies are still circulating in health and legal contexts and, if necessary, work with health and legal professionals and others to address any misconceptions of what antibodies mean or do.
• Third, insurers should ensure that policies and questionnaires around hepatitis C are necessary, based on up-to-date actuarial and statistical data, and framed in sensitive, non-stigmatising ways. In addition, other jurisdictions should follow the Australian Capital Territory’s lead and enact reforms to ensure insurance decisions are transparent and that insureds are given access to actuarial or statistical data upon which any decisions are based.
• Fourth, all governments should undertake comprehensive law reform in recognition of the advent of curative hepatitis C treatments, with particular attention to discrimination law, migration law, insurance law, and criminal law.

Tackling these aspects of law and policy may prove challenging but they are not impossible. Reform will, however, have positive implications for the treatment of people with (a history of) hepatitis C, with the potential to dramatically reduce the stigma and discrimination they face. Although our research focuses on the Australian context, it is likely that similar dynamics are at play in other legal systems around the world, and that there is a need to examine how various areas of law impact on people with a history of hepatitis C.

Read more by the authors

Dion Kagan, Emily Lenton, Sean Mulcahy, Kate Seear, Adrian Farrugia, kylie valentine, Michael Edwards, and Danny Jeffcote, Hepatitis C-Related Stigma and Discrimination in a Post-Cure World: Summary Report of Project Findings and Recommendations (La Trobe University, 2023)

kylie valentine, Emily Lenton, Kate Seear, Suzanne Fraser, Dion Kagan, Adrian Farrugia, Sean Mulcahy, Michael Edwards, and Danny Jeffcote, ‘Hepatitis C data justice: The implications of data-driven approaches to the elimination of hepatitis C’ (forthcoming) Critical Public Health

Sean Mulcahy, Kate Seear, Suzanne Fraser, Adrian Farrugia, Dion Kagan, Emily Lenton, and kylie valentine, ‘Performing hepatitis C, problematising “cure”: The construction of hepatitis C (cure) through legal discourse’ (forthcoming) Law and Literature

Kate Seear, Suzanne Fraser, Sean Mulcahy, Dion Kagan, Emily Lenton, Adrian Farrugia, and kylie valentine, ‘Echoes and antibodies: Legal veridiction and the emergence of the perpetual hepatitis C subject’ (2023) 32(2) Social and Legal Studies 216-236

Kate Seear, Sean Mulcahy, Dion Kagan, Emily Lenton, Suzanne Fraser, kylie valentine, and Adrian Farrugia, ‘Complicating cure: How Australian criminal law shapes imagined post-hepatitis C futures’ (2023) 45(1) Sociology of Health and Illness 179-195

Sean Mulcahy, Kate Seear, Suzanne Fraser, Adrian Farrugia, Dion Kagan, Emily Lenton, Liam Elphick, and Nic Holas, ‘Insurance discrimination and hepatitis C: Recent developments and the need for reforms’ (2022) 32(2) Insurance Law Journal 93-105

About the Authors

Kate Seear, Suzanne Fraser, Dion Kagan, Emily Lenton, Adrian Farrugia, and Sean Mulcahy are based at the Australian Research Centre in Sex, Health, and Society at La Trobe University. kylie valentine is based at the Social Policy Research Centre and the Centre for Social Research in Health at the University of New South Wales. This work was supported by the Australian Research Council, grant number DP200100941.