Addressing hepatitis C–related legal, policy and practice discrimination in a post-cure world

The challenge

In 2018, there were an estimated 143,580 people living with chronic hepatitis C in Australia. In addition to its potential health effects, people living with the hepatitis C are frequently subject to stigma and discrimination, largely because of the association between the virus and injecting drug use. Examples of such discrimination can include being refused dental work, surgery or other health care services, and the refusal of employment, health or life insurance, among other things. Both discrimination and the stigma associated with hepatitis C may increase social isolation, impede diagnosis and treatment, and have been proven to increase the risk of new infections.

However, the advent of direct-acting antiviral drugs (DAAs) for the treatment of hepatitis C may make these challenges a thing of the past. These drugs, which bring about a sustained virological response to hepatitis C in over 90 percent of people treated, have been heralded as a ‘revolutionary’ and ‘transformative’ cure. Following the World Health Organization’s global elimination targets, the Australian Government has now invested billions of dollars in DAAs, setting the ambitious goal of achieving virtual elimination of hepatitis C in Australia by 2030.

Importantly, medical treatment alone will not solve the multiple social, political and structural issues that confront those with a hepatitis C diagnosis. Many Australian laws and policies devised in a pre-cure world may have ongoing negative impacts on people with a history of hepatitis C. These laws and policies may operate as barriers to a revolutionary ‘new’, ‘future’ life, where people who once had hepatitis C are no longer subjects of stigma and discrimination. If laws, policies and practices that perpetuate discrimination and stigma are not urgently addressed, the elimination agenda risks being undermined.

The project

This three-year project aims to review the laws and policies that impact people with hepatitis C in Australia and identify opportunities for reforming law, policy and practice in order to reduce stigma and discrimination. It seeks to generate new knowledge about the experience of new hepatitis C treatments, including whether hepatitis Crelated stigma and discrimination persists post-cure, and what forces causes or shape ongoing stigma and discrimination.

Its central objectives are to:

  • Document the post-cure experiences of people successfully treated for hepatitis C
  • Document the views of key stakeholders, such as policymakers and peer advocates, on latent and emerging discrimination-related challenges pertaining to hepatitis C in a post-cure world
  • Map legal, policy and practice frameworks impacting people with hepatitis C
  • Devise practical strategies and reforms for reducing post-cure discrimination.

Work on the project is underpinned by two central premises. The first is that although medical advances may work to eliminate the presence of hepatitis C in the bodies of individuals, they may not eliminate the multiple and deeply entrenched social problems that accompany people’s experiences of hepatitis C as a social identity. The second is that Australia’s significant investment in medical cure must be accompanied by commensurable investment to address the interlocking social, policy and legal challenges that continue to affect the lives of people treated for and cured of hepatitis C.

The method

The research, which commenced in late 2020, consists of the following 4 stages:

  1. Speculative legal and policy mapping, involving the collection and analysis of legislative frameworks, statutes, case law, rules of evidence and policies relevant to hepatitis C
  2. Qualitative interviews with key stakeholders who have experience working on hepatitis C law, policy and service provision, including drug user organisations, legal services, and policymakers in government departments with responsibility for providing advice to government and/or developing policy on hepatitis C
  3. Qualitative interviews with people who have undergone hepatitis C treatment about their post-cure experiences
  4. Using data from stages 2 and 3 to update data collected in stage 1, followed by specific recommendations for reform.

The impact

The project will produce much-needed new knowledge that will directly inform strategies to reduce discrimination and stigma against people with, and treated for, hepatitis C and improve the social outcomes of those affected. By investigating what reforms – to law, policy and practice – are necessary in a post–hepatitis C world, the project makes a major contribution towards realising Australia’s goal of eliminating hepatitis C by 2030.

The results

Expected outcomes of the project include recommendations for legal, social and policy reform relating to the management of hepatitis C. The research findings will be presented in plain-language reports available to people with lived experience and to those working in the prevention and treatment sector. These will enable people undergoing treatment for hepatitis C to better understand their rights and options in a post-cure world, and will enable policymakers, peers, advocates and service providers to address the implications of the research findings for their practice.

We will be posting more about what we find as the study progresses.

Project contact

Associate Professor and Future Fellow Kate Seear leads this project. You can contact the project team via our ‘Contact’ page.

Project supporters

The Australian Research Council funds this project.

DP200100941.

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