Hepatitis C from disability to cure – preliminary findings from ‘speculative legal mapping’

As Australia works towards its ambitious target of reducing hepatitis C stigma by 50% by 2022, it is necessary to investigate and understand the issues that continue to affect people who have – and have been treated for – hepatitis C. One significant example of such issues is the set of laws and policies devised in a pre-cure world that have yet to be reformed since the advent of curative treatments. Do people who had hepatitis C need to disclose this to insurers or prospective employers? And could you be refused employment or insurance on such a basis? Does the fact you once had hepatitis C need to be retained in your medical records? There are literally dozens of questions like these to be asked.

Members of the GLaD research team are examining these issues as part of a major, ARC-funded project on hepatitis C and post-cure lives. A key early stage of this project has involved collecting laws, statutes and other legal frameworks that may continue to impact people living with and cured of hepatitis C. The development of this database can help us to better understand the (shifting) status of hepatitis C within law, including how hepatitis C–related stigma and discrimination plays out. If Australia’s ambitious target to reduce and eventually eliminate this stigma is to succeed, we need to examine – and potentially reform – legal structures that continue to affect both those that are living with and have been cured of hepatitis C. This is one of the underlying premises of this stage of the project.

We called this first stage of the project ‘speculative legal mapping’ and it has largely involved a thorough search of all cases and statutes that mention ‘hepatitis C’. As at January 2021, we identified 1102 mentions in case law, 232 of which involved substantive discussion of hepatitis C, and 55 that occurred since direct-acting antiviral (DAA) treatments became available on the Pharmaceutical Benefits Scheme in 2017.

In terms of statutes, we found 31 with relevant mentions of hepatitis C. These commonly fell into the following six different areas of law: identifiable notifications under public health (11 statutes); combat sports (9); discrimination (9); workers’ compensation (6); mandatory testing; and blood donation (5).

Other relevant laws that have affected people living with and those that have been cured of hepatitis C include social security laws, which raise questions about whether hepatitis C can be classified as an ‘impairment’ for the purposes of accessing the disability pension or a ‘wartime injury’ for the purposes of accessing the veterans’ pension, and also whether it affects one’s capacity to work. Hepatitis C also figures in workplace laws, including health and safety laws, such as whether workers in the food industry can continue their work after acquiring hepatitis C, compensation claims where workers have contracted hepatitis C from needle-stick injuries, and industry-specific requirements to disclose hepatitis C in medical certificates in order to gain a pilot’s license. There have also been instances in medical negligence cases where people who acquired hepatitis C through blood transfusions have sought to discover donor information.    

Hepatitis C also figures in criminal law in a number of ways. For example, it can affect a sentence if an offender has hepatitis C, particularly during COVID-19 where access to medical treatment in prisons has been more limited. It can be an aggravating factor in sentencing where there is a risk of the criminal act leading to transmission, including through biting, spitting, syringe use and gouging. In such cases, even the fear of acquiring hepatitis C from a criminal act can lead to a higher award of compensation for victims of crime. Furthermore, the risk of acquiring hepatitis C from sexual offenders has been taken into account in ordering ongoing detention.

Hepatitis C also figures in migration and refugee laws. Difficulties accessing treatment and drugs for hepatitis C in a home country may be taken into account in visa cancellation and refoulement decisions, for example.

In the hepatitis C case law, stigma and discrimination emerged as a key theme. In one case, a local councilor discriminated against the council CEO by disseminating information about the CEO’s hepatitis C condition. In other cases, asylum seekers with hepatitis C were told that they will not face discrimination if returned to their home country if they keep their hepatitis C status private (emulating experiences of lesbian, gay and bisexual asylum seekers). As many of these cases are ‘historical’ – that is, occurring before the availability of DAAs – other, later stages of the project will need to explore whether these types of discrimination continue in the era of cure. However, understanding the historic cases is a key first step.

Another theme that emerged is a noticeable shift in the rhetoric around hep C in these cases from one of ‘disability’ to one of ‘cure’. In earlier cases, hepatitis C is described as something that ‘probably does exclude’ a person from employment in certain industries. It is described as ‘that unfortunate illness’, a ‘deadly virus’, something fatal and incurable. In the language of these cases – often deployed by the presiding judge – the person living with hepatitis C tended to be cast as unfortunate, incapable of work and bound to die. In later cases, hepatitis C is described as something that can be beaten or cleared. And once cured, it is cast as something that no longer affects the life of a person. It is described as merely temporary.

In spite of these quite significant changes in rhetoric, one thing that has remained is the requirement for the person with (or cured of) hepatitis C to tell the story of their status, to ‘confess’ their illness to the court. Given this need for retelling, it is unclear whether the stigma connected with that status can, like the virus, be beaten. While hepatitis C is recast in post-cure cases as temporary, the stigma associated with it – and perhaps exacerbated through the telling and retelling of one’s status before a court of law – may be more lasting and less easily cleared. These changes in rhetoric gesture to the way in which the law shapes ‘disability’, ‘illness’ and ‘cure’, and later stages of the project will continue to investigate the discursive and performative construction of hepatitis C illness and cure.

Three research papers are underway reporting on the results of this legal mapping, and we will be posting more about our findings from this stage of the project. Keep an eye on the post-cure project page for updates.