By Cat Woods -
For many among the nearly 30,000 Australians living with HIV, and the approximately 220,000 with hepatitis B, justice is elusive. Although HIV and viral hepatitis treatment and care have improved exponentially in the last decade, the legal issues and access to legal support and information remain problematic.
A new, comprehensive report on the obstacles that these Australians face in challenging injustices aims to inform long-awaited reforms around how individuals with HIV and/or Hepatitis B access legal advice and support across broad areas of law. Australia’s ninth National HIV Strategy 2024-2030 set the goal of eliminating HIV transmission by 2030, but for the hundreds of thousands of Australians who face stigma or discrimination at present, this goal is less urgent than addressing legal frameworks to protect their rights within the workplace, home, and in the contexts of migration and property.
Dr David Carter is a Scientia Associate Professor in the Faculty of Law & Justice at the University of New South Wales (UNSW). His expertise lies at the intersection between medical and health law, public health law and criminal law. He is also the Lead Chief Investigator of the Health+Law Partnership. He spoke to LSJ Online about the first nationwide study into the daily experiences of people with HIV and Hepatitis B, the Legal Needs Study (LeNS).
It has been 30 years since a comprehensive review of the law surrounding HIV was conducted in Australia.
Carter says, “The experience of living with HIV medically, socially, culturally, is different today than it was in in, say, 1992 or mid-90s.” He says this report is timely in terms of the emergence of “undetectable equals untransmittable”, which means that a person living with HIV is able to sustain an undetectable viral load while on medical treatment and therefore cannot transmit HIV to another person.
“I think this was a really big watershed, biomedically, but also culturally and indeed legally. That’s a really big landscape shift,” Carter says. He explains that antiretroviral treatment has also been revolutionary in terms of improving life quality and expectancy.
In the legal landscape of HIV, the conversation hasn’t changed as dramatically. Carter was pleased by the initiative of states and territories to eliminate criminal offences that named HIV specifically in them. However, he says other areas have been neglected. “Most of the conversation in the last 30 years has been about criminalisation and the kind of discrimination that goes along with that, and to a lesser degree, healthcare rights, employment discrimination, and other matters.”
“Hepatitis B is a slightly more complicated matter”, he says. “We estimate that about 225,000 people live with hepatitis B in Australia, and it happens to be concentrated in migrant populations who were born overseas, and Aboriginal and Torres Strait Islander communities.”
Hepatitis B is a blood-borne virus that may be transmitted through blood and sexual contact, including through mother to child during childbirth.
“For a reasonably long period of time now, we’ve had an effective vaccine [for hepatitis B], which has been widely used and which prevents the transmission or acquisition of hepatitis B. For some people [living with hepatitis B], it can lead to significant liver damage, cirrhosis, liver cancer and death [if left untreated].”
Australia has a national target to end hepatitis B by 2030, which Carter says is likely “an impossible ask”. Many people, he explains, “are either not diagnosed and able to engage in healthcare and monitoring, or they’re unable to access treatment and expertise from clinicians and other health professionals.”
The Kirby Institute monitors both HIV and hepatitis nationally and by state and territory. Recent data indicates that HIV diagnoses have declined on the whole in the decade from 2014 to 2024. Like HIV, cases of hepatitis B have declined in Australia during the last decade.
Still, for the people in Australia living with these conditions, the legal systems and the law provide obstacles to their health and quality of life. As Health+Law’s national legal needs study (LeNS) has recently acknowledged, migration disproportionately disadvantages people living with HIV and hepatitis B. People who acquired HIV after migrating to Australia can experience interrupted plans around migration, employment and career progression. For those on an employer-sponsored visa, there is an additional layer of complexity and risk, which raises the stakes of having a discussion with an employer about what’s needed in terms of adjustments to work hours or workplace environment.
While advocates have recognised issues in migration law for some time, other areas of law, such as family law, workplace and industrial relations law also offer up challenges that have been overlooked by researchers and law reformers.
Health+Law’s primary questions were:
How do people living with HIV and hepatitis B experience and respond to the law in everyday life?
How does the law impact their health and wellbeing, both in relation to living with HIV or hepatitis B and more generally?
“We interviewed about 140 people with either HIV or Hepatitis B who were born overseas and migrated to Australia,” says Carter. “We are grateful that people are willing and able to share their stories with us, it’s a great honour.”
The interviews confirmed that while criminalisation of HIV was less impactful today, the law-related problems extended to nearly all facets of justice. Carter lists: “Domestic violence, coercive control, family law, child-rearing, divorce, housing – including aged care facilities – and division of assets.”
“There’s a lot of fear about the law and confusion around ‘what are my rights, and is it worth me enforcing them, and would people then know about my HIV status, and do I want them to?’”
Following these in-depth interviews, the team conducted a national survey with more than 1000 people living with hepatitis B and HIV. The results showed a worryingly high prevalence of legal issues among people living with HIV and hepatitis B, constraints on their ability to access justice, and with significant implications for their health and wellbeing.
In terms of family law, the LeNS research indicated that HIV and Hepatitis B are complicating factors in divorce, custody, division of assets, fostering, violence and coercive control. “Women especially were experiencing violence or coercive control, with threats [by their partners] to out their HIV or Hepatitis B status or control their access to treatment or care.”
Health+Law is developing educational material on how to effectively work with, and be responsive to, those living with a blood-borne virus. “In my work with medical practitioners, the partnership between lawyers and medicine, is incredibly important. We want to encourage that partnership to be more two-way, so that lawyers and medical practitioners can feel comfortable referring to each other.”
Carter says, “There are some stellar lawyers and migration agents who work in multiple areas of practice who are great advocates, so it’s possible that people can do this work well without specialising in HIV in the law. We are working with the profession to develop and support those stellar practitioners, but to also invite others into the story, because it’s about 1 per cent or more of the population living with these conditions and it stretches from childhood well into older age.”
Ultimately, he says, “This report provides the evidence needed to inform decisionmakers and lawmakers at all levels of government.”
The LeNS study has been shared with LSJ Online but was yet to be published publicly at time of interview. It is expected to be published in early 2026. See the Health+Law website for more information and results from LeNS.
