My name is Katrina Mathieson and I am the research coordinator for the Health+Law Partnership. We value this opportunity to share our research on the legal needs of people living with hepatitis B in Australia.
The law is a powerful determinant of health, and it shapes people’s everyday lives. For people living with a blood-borne viruses (BBV), including hepatitis B, the law has the potential to enable better health outcomes and support individuals to assert their rights, but it can also create obstacles. One of the most glaring examples in the current Australian legal landscape is migration law, which can have huge and often negative impacts on the lives, health and wellbeing of people living with hepatitis B (PLHBV) who are migrants, visitors or non-citizens, with ripple effects on their families and communities.
At Health+Law, our research is focused on the legal experiences and ‘legal needs’ of people living with BBVs, including a major focus on hepatitis B. A ‘legal need’ arises when professional legal support is needed by a person to deal with or resolve a problem. As our emerging research shows, PLHBV in Australia experience a significantly higher level of legal need than other groups in the community, and these are a substantial—and largely unaddressed—driver of health inequities. Unmet legal needs not only have the potential to diminish quality of life, but for PLHBV they can directly compromise health by disrupting access to treatment and care, exacerbating stress, increasing exposure to stigma and discrimination, compounding social disadvantage, and more.
With the support and lived expertise of PLHBV across Australia, as well as inputs from healthcare practitioners, peers, lawyers and others working with affected communities, the Health+Law research partnership is developing an evidence base around the law and hepatitis B, including the legal needs of PLHBV, the impacts of law on their health, and what works to address and improve these issues. Alongside parallel work examining HIV and the law, our recent and current projects have produced important new findings in this area.
For example, an online survey we conducted with members of the sexual health and BBV workforce showed that patients and clients with BBVs were coming forward to healthcare professionals with legal problems that generate a ‘severe impact’ on health. In this clinicians’ survey, 76% of respondents said they had been directly approached to help resolve a patient’s legal issue, while none said they felt confident to effectively screen patients for legal issues. 52% said they would like to make more legal referrals for their patients and clients. These results highlight the pivotal role health professionals can play in supporting people to get their legal challenges addressed. Health+Law are now working on a suite of resources and professional networks to support clinicians to better identify and connect their clients or patients living with hepatitis B to legal help, including a legal needs screening and referral tool specifically designed for the Australian context.
Also, at a national roundtable held by Health+Law with leaders of hepatitis B-related community organisations in Australia, we conducted a deliberative process to identify and prioritise legal issues that these community organisations were responding to. This was the first such process of its kind in Australia, aiming to identify, carefully consider and then reach a consensus about what some of the most pressing legal areas are, and to inform the design of interviews and surveys with PLHBV for further research into them. The results included four priority legal areas: hepatitis B testing and disclosure, migration law, public health orders, and hepatitis B-related stigma and discrimination. More details about these priority areas and other discussions from the national roundtable are coming soon in The Journal of Bioethical Inquiry.
Another recent project—a ‘legal mapping review’ of Australian case law entitled ‘Hepatitis B and the Law in Australia: A Mapping Review of Contemporary Case Law’—is another step toward better understanding the legal environment surrounding hepatitis B in Australia. This review used legal mapping techniques to screen and analyse court and tribunal decisions and judgements related to hepatitis B from every Australian state and territory. Despite estimates that 200,000 people are living with chronic hepatitis B nationwide, we found only 40 relevant case decisions. The precise reasons for this are unclear, however emerging evidence from other Health+Law work suggests some reasons for it: one is that many members of the communities where hepatitis B is most prevalent have limited access to legal services, and so their legal issues seldom make it as far as courts and tribunals. In other words, it’s not that people with hepatitis B don’t experience legal challenges of all kinds, including ones directly related to their having hepatitis B, but rather that their ability to access legal remedies has been limited. To hear more about this legal mapping, you can stream a short webinar where members of our team talk through this review and reflect on what its findings mean.
Informed by our research, the Health+Law team have also been collaborating with healthcare professionals, lawyers, epidemiologists, peers and community advocates across the Australian BBV sector to create resources for immediate, direct use by people in the community. One example is the ‘Hepatitis B Visa & Migration FAQ’, a shared effort between LiverWELL, Hepatitis B Voices Australia, the WHO Collaborating Centre for Viral Hepatitis and the Health+Law team. The FAQ is a resource to address real-life migration and visa-related questions that individuals and families affected by hepatitis B grapple with. It was designed to demystify the migration process and provide clear, up-to-date, reliable guidance for migrants and non-citizens affected by hepatitis B, their families, and the peers and professionals that support them. The FAQ is hosted by LiverWELL and you can read more about it here.
Other such resources include the ‘Hepatitis B and Immigration Guide’, developed with ASHM Health, guides clinicians supporting PLHBV who are applying for a permanent visa. We also hosted a series of webinars introducing migration law and hepatitis B and answering key questions about navigating the migration process while living with hepatitis B. In addition to these, our team conducted evaluation work with the HIV/AIDS Legal Centre (HALC) in New South Wales and independent evaluators to assess how the specialist legal services provided by the Centre improves the lives of people facing legal issues related to living with a BBV.
Last but certainly not least, the Health+Law has been working away in the background on a significant large-scale national Legal Needs Study (LeNS), in which we have spoken directly to PLHBV in every state and territory of Australia through in-depth interviews and a national survey. The LeNS is our flagship project, and the first study of its kind in Australia to directly address how PLHBV experience the law. Data from LeNS is still being analysed, but preliminary results show that PLHBV experience ‘justiciable’ (legal) issues across multiple areas of law, including in the areas ofgoods and professional services (including healthservices), employment, debt, housing, government services and state intervention linked to hepatitis B status.
While many of the early findings from the LeNS are stark, we hope these will inform targeted improvements to the legal environment, including the expansion of specialist legal supports for PLHBV in Australia. More detail and findings from the LeNS will be released later this year. We hope these findings will not only record the breadth of unmet legal need among PLHBV but will lead to serious steps to address that need.
To stay up to date with our work and receive the findings from LeNS directly to your inbox, sign up to the Health+Law newsletter here. Our newsletter comes out every few months, and includes updates and information on research and resources addressing this important area where chronic hepatitis B and other BBVs intersect with the law.