The Australian Department of Health will soon embark on developing the sixth iteration of the national hepatitis C strategy, anticipated to be its last, and firmly upholding the strategy of setting targets aligned with the global goal of eliminating hepatitis C as a public health concern by 2030. Australia was one of the first countries to commit to the 2030 elimination agenda, and its progress is being closely monitored internationally. The next national strategy will therefore be of global interest, with the potential to influence other countries’ approaches.
Of the estimated 188,951 people living with chronic hepatitis C in Australia, 88,798 have initiated treatment. It has been suggested that the next phase of elimination in the Australian context will require new approaches to engage those who have not been treated, including people who may be unaware of their status and/or available treatments, are ‘hesitant’ or face other barriers to receiving treatment. The need to engage people who are untreated is critical and is likely to be a central focus of the next strategy.
In our view, and based on ongoing research, the next national strategy needs to consider challenges that exist beyond simply identifying, engaging and treating those yet to be treated, and preventing future transmissions. Here we identify three important issues that should be addressed in the next strategy, and that other countries might also wish to consider in their strategic planning.
1. Australia must address stigma and discrimination, including persistence after cure
A range of challenges have emerged in the era of new treatments, including challenges that persist beyond the point of cure. In particular, there are ongoing experiences of stigma and discrimination for people who have ever lived with the virus – including those post-cure. Such stigma and discrimination are enabled by numerous forces and factors, including insecure housing, unemployment, racism, the criminalisation of drugs and other laws and policies that can impact the lives of people who have lived with hepatitis C.
Our research has also found numerous areas of law that are relevant to the lives of people who have, or who once had, hepatitis C. These laws and policies raise important questions, including whether they enable discriminatory treatment against people who have or had hepatitis C and should be updated to account for cure. In addition to existing laws and policies, new laws and policies may perpetuate stigma and discrimination, such as the 2021 Mandatory Disease Testing Act in New South Wales, that allowed for people to be tested for blood-borne viruses without consent, if there was a risk they’d exposed certain workers to the virus. This law was opposed by many stakeholders, including our team because of its potential to undermine the national strategy and elimination goals, and to perpetuate stigma and discrimination.
These issues matter because people who once had hepatitis C should be able to enjoy lives free of stigma and discrimination, and because stigma and discrimination can increase the risk of re-infection and new transmissions. They may also undermine confidence in the purportedly ‘transformative’ potential of cure. As such, our first recommendation is that the national strategy should prioritise eliminating hepatitis C-related stigma and discrimination, including for people living post-cure. This requires careful attention to the forces and factors that shape stigma and discrimination, including existing laws and policies designed before the advent of DAAs. It also requires us to monitor proposals for new policies and laws that might perpetuate stigma and discrimination and adversely affect the lives of people who have had hepatitis C. This focus would also align with the current National Strategy’s focus on an ‘enabling legal and policy environment that addresses criminalisation, stigma and discrimination’. Under this more expansive approach, the next national strategy would explicitly recognise what we have elsewhere called ‘the indivisible flow’ of pre-cure and post-cure environments.
2. Australia must adopt new and more careful language, in acknowledgement of the challenges of post-cure life
While elimination of the hepatitis C virus may be achieved, markers of past infection remain detectable for life. As such, even those who have been ‘cured’ of hepatitis C remain ‘tethered’ to the virus. Furthermore, since hepatitis C antibodies are the first line of testing for infection, a positive antibody result in a person cured of the infection still carries the ‘mark’ of hepatitis C which can also be misinterpreted. Emerging findings from our current research suggest that misdiagnoses from screening tests may adversely affect the lives of people who have lived with hepatitis C. We need to recognise the barrier that this may pose for people in moving on to a new post-cure life that remains marked by the past.
One way we may address this is through changes to the language used to describe the targets and beneficiaries of the next national strategy. The strategy should focus on the needs and experiences not only of those who currently have hepatitis C, but those who have had the virus in the past. Our second recommendation, therefore, is that the language of the next strategy be sufficiently expansive to acknowledge the ways hepatitis C continues to affect people’s lives post-cure, and that it should focus on both ‘people living with hepatitis C’ and ‘people who have been cured of hepatitis C’.
3. Australia must reconsider its approach to human rights
Human rights feature as a ‘guiding principle’ of the current National Strategy. The Strategy states that:
People with hepatitis C have a right to participate fully in society, without experience of stigma or discrimination. They have the same rights to comprehensive and appropriate information and health care as other members of the community, including the right to the confidential and sensitive handling of personal and medical information.
The key principles of the right to equality and the right to privacy are not the only rights relevant to people who have lived with hepatitis C. Our new research program has identified some of the limitations of human rights, including the way that the rights of people who use drugs are routinely restricted based on problematic claims or assumptions about the role of substances in generating crime and undermining public safety. If human rights are to be incorporated into the next strategy, we need to recognise, first, that various rights can be impacted by hepatitis C, and also continue to be impacted post-cure. Second, we must acknowledge that human rights are not a panacea, and that they are routinely restricted by parliaments for various reasons. Our third recommendation is therefore that if human rights are to be acknowledged in the next strategy, any reference to rights should not be limited to specific rights, and must incorporate strategies and methods for ensuring that rights are not unjustifiably or unreasonably restricted based on assumptions of the kind we have identified in our aforementioned research.
No potential conflict of interest was reported by the author(s).
The research reported in this paper is funded by the Australian Research Council (DP200100941).