Dr Dion Kagan & Scientia Associate Professor David J Carter
Since 2015, the World Health Organization (WHO) has maintained bold global targets to end AIDS, hepatitis B, hepatitis C and other sexually transmitted infections by 2030. However, an inattentiveness to the operation of law is leaving some affected communities behind. In Australia, this includes migrants and people born overseas, both of which are key populations affected by HIV and hepatitis B.
In some areas, Australia has made significant progress towards WHO goals. In 2016, more than $1 billion was committed to making curative treatment for hepatitis C widely available. This year, the federal health budget allocated $126.5 million to blood-borne viruses (BBVs), including $26 million to subsidise pre-exposure prophylaxis (PrEP), which supports the prevention of HIV, and an unprecedented expansion of hepatitis B programs.
Health+Law, a partnership between researchers and non-government and community organisations across Australia, is part of these efforts. It is working to identify and eliminate the legal issues causing harm to people living with HIV and hepatitis B in Australia.
Led by Australian Human Rights Institute Associate and UNSW Scientia Professor David Carter, Health+Law’s national legal needs study (LeNS) is a multi-year assessment of the legal environment surrounding hepatitis B and HIV. Emerging data from LeNS shows that the law is a key factor in the health outcomes of people living with BBVs. Migration law and policy, for example, is an area that can lead to discrimination and serious downstream impacts to health and wellbeing.
In more than 140 interviews conducted with community members, people living with HIV and hepatitis B reported being unfairly barred from industry placements required for their degrees, being excluded from community and religious events, and missing out on jobs through pre-employment medical screenings made with ambiguous or outdated reference to the current science of transmission risk. They described coercive testing and the non-consensual disclosure of their BBV status. People diagnosed during migration processes report being left entirely alone, with no advice or referral to health care or treatment. Some resorted to illegal importation of medication to avoid generating official health-system records that would expose them to further harm, or they ceased essential treatment entirely.
Clinicians working with affected communities have observed and experienced these impacts too. Recent work published by Health+Law showed that 60% of clinician respondents from the BBV sector see legal issues interfering with their work with patients. Around 50% said legal issues had a ‘severe’ or ‘serious’ impact on their ability to provide health care and on the effective functioning of the healthcare system.
These impacts often lead people to modify their behaviour, and often radically re-direct their lives. They impact careers, relationships, family life, mental health and engagement with community. By discouraging people from accessing testing, treatment and care, they also pose fundamental obstacles to Australia’s broader public health goals.
The enabling legal environment
For decades, key voices in civil society and the law have advocated for rights-based public health approaches to communicable diseases. Even the most efficacious public health interventions rely on the presence of an ‘enabling environment’ in which the human rights and dignity of people living with or vulnerable to disease are upheld.
Global evidence shows that countries that adopt rights-based approaches have higher rates of HIV status knowledge and greater achievement of viral suppression.
The importance of an ‘enabling legal environment’ has long been recognised as central to this. For HIV, it has been a central feature of public health policy since Australia’s first national HIV strategy in 1989. Emerging research makes a similar case for the role of law in the response to hepatitis C and Health+Law’s advocacy has contributed to a renewed focus on law in the current national hepatitis B strategy.
As epidemics and the science and technology used to address them change, so too must the law adapt and change to ensure that no one is left behind.
Further information about the legal needs of people living with hepatitis B and HIV is available on the Health+Law website.
Dr Dion Kagan & Scientia Associate Professor David J Carter (Australian Human Rights Institute Associate) are in the School of Law, Society & Criminology, UNSW Faculty of Law & Justice.