By Cat Woods -
For the nearly 30,000 Australians living with HIV, and the approximately 220,000 with Hepatitis B, justice is elusive. Though healthcare and knowledge of diagnoses and treatment of HIV, Hepatitis B, and AIDS have improved exponentially in the last decade or so, the stigma of these conditions and the availability and equity of access to legal support remains 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, international review looked into HIV and the Committee of AIDS reported during the so-called AIDS crisis.
Carter says, “The experience of living with HIV medically, socially, culturally, is different today than it was in in, say, 1992 or mid-90s. In many ways it’s better, but mainly just different.” He says this report is timely in terms of the emergence of the “undetectable equals untransmittable” concept, 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. “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.”
Carter was pleased by the initiative of states and territories to eliminate criminal offences that named HIV specifically in them. He explains that antiretroviral treatment has also been revolutionary in terms of improving life quality and expectancy.
“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. For a reasonably long period of time now, we’ve had an effective vaccine which has been widely used and which prevents the transmission or acquisition of Hepatitis B. Untreated, for some people it can and will lead to significant liver damage, cirrhosis, liver cancer and death.”
Australia has a national target to end Hepatitis B by 2030, which Carter says is “an impossible ask”. He explains, “People 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.”
Unless treatment is sought, HIV causes acquired immunodeficiency syndrome (AIDS). HIV is transmitted sexually, by blood-to-blood contact (ie. intravenous drug use), and from mother to child. The Australian Bureau of Statistics (ABS) and the UNSW Kirby Institute closely monitors both HIV and hepatitis nationally and by state and territory, indicating that HIV diagnoses have declined on the whole in the decade from 2014 to 2024 (757 HIV diagnoses in 2024, a drop of nearly 30 percent over ten years).
Hepatitis B is an infectious disease transmitted by blood and sexual contact, including from mother to child during childbirth. Over time, the virus attacks the liver by attaching to healthy liver cells and replicating. Like HIV, without treatment this virus has serious implications for health and longevity. Without management, the infection can lead to scarring of the liver (cirrhosis), liver cancer, or liver failure. Like HIV, cases of Hepatitis B have declined in the last decade.
Still, for the hundreds of thousands of people in Australia who are diagnosed, or undiagnosed, for these conditions, the legal systems and the law provide obstacles to their health and quality of life. As Health+Law has recently acknowledged, migration law has long been understood to disproportionately disadvantage those with HIV and Hepatitis B, but family law, workplace and industrial relations law also offer up challenges that have been overlooked by research, review and reform. Their 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?
Carter says, “We interviewed about 140 people with either HIV or Hepatitis B who were born overseas and migrated to Australia. 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?’ The problem of ‘blame, name and shame’.”
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 treatment has increasingly become subsidised by Medicare for HIV, Hepatitis B treatment is more complicated and costly. Carter says, “We interviewed a range of people who, because of healthcare system access issues, had chosen not to take up or continue treatment.”
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.”
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.”
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.”
Ultimately, Carter 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 November 2025.
