In 2019, the Australian National Drug Strategy Household Survey showed that at least 43% of Australians over the age of 14 admit to having used illicit drugs at some point in their lives. Despite these figures, drug use remains criminalised and highly stigmatised. We know, for example, that stigma acts as an obstacle to accessing primary healthcare among people who use drugs, and undermines access to harm reduction services including needle and syringe programs for safer injecting. Drug-related stigma manifests in different settings and forms, and though we have begun to talk about, research, better understand and address these forms of stigma more meaningfully in recent years, much work remains to be done.
This year, on the 30th anniversary of its establishment, the Australian Injecting & Illicit Drug Users League (AIVL) hosted the inaugural Australian Stigma Conference. AIVL is Australia’s peak organisation for people who use drugs, working to promote the health and voice and human rights of the community. Addressing and directly challenging stigma is core to its mission. The conference, held at Parliament House in Canberra, brought together people who use drugs, policymakers, service providers, healthcare professionals and researchers to discuss some of the most pressing issues related to stigma and the lives of people who use drugs, with delegates speaking to topics including safe injecting spaces, decriminalisation, overdose, pharmacotherapy, drug law reform and more. GLaD research lead Associate Professor Kate Seear gave a keynote presentation addressing drug-related and hepatitis C-related stigma and discrimination in the context of current efforts to eliminate hepatitis C in Australia.
As Kate pointed out, direct-acting antivirals have had a huge impact on hepatitis C healthcare in recent years, with approximately 50% of people living with the virus in Australia treated with these new generation curative treatments. And yet, the virus is stll the number one global cause of mortality for people who inject drugs and, locally, hepatitis C-related stigma and discrimination remains entrenched. The universal availability of new treatments alongside goals to eliminate hepatitis C in Australia are reasons for optimism, but alone these forces don’t address the net of meanings associated with hepatitis C, including its association with injecting drug use. This raises crucial challenges, which Kate posed as framing questions for her talk. She asked:
What do we imagine happens to stigma and discrimination once someone has been cured of the virus? Do we imagine that it, too, will be treated, and that people will be free to lead entirely new lives? Or do we imagine that it might linger, complicating ‘post-cure life’? Might it, too, be something we need to address? And why might this stigma and discrimination matter?
To begin addressing these, Kate drew on findings from the GLaD research program’s major ARC-funded project on hepatitis C-related legal, policy and practice discrimination in a post-cure world. Her keynote addressed three major points.
The first is that both drug-related and hepatitis C-related stigma and discrimination are baked into existing policies, laws and official administrative processes, many of which have never been updated to account for the advent of direct-acting antivirals. Some notable examples of this include medical records, insurance law and policy, migration and refugee law, discrimination law and criminal sentencing. As we have argued in a recent article on how Australian criminal law addresses hepatitis C, for example, policymakers and legislators need to address these through law reform that accounts for the advent of cure.
A second point Kate emphasised is that, in spite of Australia’s good track record on the adoption of harm reduction approaches, the continued absence of needle-syringe programs in Australian prisons means the risk of hepatitis C infection and re-infection of incarcerated people remains unacceptably high. As well as an obstacle to elimination, this is a significant human rights violation under international principles, including the ‘Mandela Rules’, which state that prisoners shall have access to the health services available in the country without discrimination on the grounds of their legal situation. ‘We are currently failing in this respect’, Kate said, with vulnerable populations in prisons denied access to the resources that can prevent transmission of blood-borne viruses and reduce other injecting-related harms.
Finally, Kate discussed the development of novel approaches, including ‘opt-out’ testing protocols, to finding ‘the missing millions’ of people whose hepatitis C remains undiagnosed, or who have been lost to follow up. These strategies have developed as part of the race to eliminate hepatitis C by 2030, and the need to increase treatment uptake to meet those goals. Drawing from findings published by GLaD researchers last year, she described a worrying trend in some approaches that seek to lessen – or avoid entirely – the need to solicit informed consent from people before testing. While national policy settings demand that informed consent is required in all instances of hepatitis C testing, and that testing for blood-borne viruses should be voluntary, accessible, non-discriminatory, confidential and of clear benefit to individuals being tested, the landscape is shifting, with individuals and their rights being described in some settings as problems or obstacles standing in the way of elimination goals.
If Australia is to reach its ambitious target of eliminating hepatitis C, Kate concluded, ‘we need to examine – and potentially reform – a broad range of structures’. Working to eliminate hepatitis C cannot wait, as recent campaigns have asserted,
but neither can reforms to legal, social, policy and cultural dimensions of hepatitis C, especially if they reinforce the types of stigma and discrimination that exclude people from access to equitable health care.
You can listen to Kate’s keynote and other presentations from the stigma conference here.