Troubling complaint: Addressing hepatitis C-related stigma and discrimination through complaint mechanisms.

The need to grapple with hepatitis C-related stigma and discrimination in Australian health-care settings has been recognised in public policy, and work is underway to address it. But how likely are people to raise a complaint when they experience stigma or discrimination? And how effective and accessible are complaints mechanisms? Given complaint procedures are considered important parts of the delivery of safe and ethical health care, these are important questions that have yet to be substantially explored. Drawing on interviews with people with lived experience of hepatitis C (n = 30), this article considers how affected people feel about complaints processes and the act of complaining. Alongside these perspectives, we discuss complaint mechanisms, and the views of stakeholders who work with hepatitis C-affected communities in policy, health, legal and advocacy roles (n = 30) on the institutional and cultural dynamics of complaint. We draw on Sara Ahmed's Complaint! and Fraser et al.'s work on drug-related stigma to analyse these concerns that have yet to be researched, and argue that the (unlikely) prospect of successful complaint is a key part of the network of forces that perpetuate stigma, discrimination and disadvantage among people who have (lived with) hepatitis C. Although people with lived experience are often powerful advocates and acutely aware of the deficiencies in the quality of their treatment, our interviews suggest that the obstacles they face to accessing health care are seen as commonplace, intractable and insurmountable; and, that mechanisms for addressing them-where they exist at all-treat complaints in narrowly individualising terms and expose complainants to dismissal. Following Ahmed, we call for a 'troubling' of complaints-responding to them not as individual problems but rather as collective, structural concerns, necessitating new approaches.

'We've got a present for you': Hepatitis C elimination, compromised healthcare subjects and treatment as a gift.

With the advent of highly effective and tolerable direct-acting antiviral treatments for hepatitis C, widespread optimism for and investment in the project of disease elimination now informs the public health response. In Australia, the Commonwealth government has invested heavily in elimination by universally subsidising treatment, promising access for all. Reflecting concerns that commonly accompany ambitious public health projects, cost for governments supporting access to the treatment and cost for individuals consuming it have emerged as central issues. Drawing on 30 interviews with people who have been cured of hepatitis C with direct-acting antivirals, this article examines how cost shapes experiences of hepatitis C treatment and cure in Australia. Drawing on Lauren Berlant's (2011) influential work on 'cruel optimism', we analyse three interconnected ways that notions of cost shape participants' views of treatment as a beneficent gift from the state: (1) understandings of treatment access as a form of 'luck'; (2) conceptions of the cost of treatment; and (3) criticisms of others who are seen to waste state resources by not taking up treatment or by re-acquiring hepatitis C. We argue that, together, these dynamics constitute people affected by hepatitis C not as citizens worthy of public investment and fundamentally entitled to care, but as second-class citizens less deserving of treatment and of the health care to which they might otherwise be considered entitled. It is within this dynamic that the compromised quality of elimination optimism takes shape, binding people affected by hepatitis C to an inequitable relationship to health care, reproduced through the very things that promise to free them of such inequality - investments in access to treatment and cure.

Between Public and Private: Electronic Health Record-sharing, Health Privacy Principles, and Hepatitis C.

People with (a history of) hepatitis C have concerns about privacy and the confidentiality of their health information. This is often due to the association between hepatitis C and injecting drug use and related stigma. In Australia, recent data breaches at a major private health insurer and legislative reforms to increase access to electronic health records have heightened these concerns. Drawing from interviews with people with lived experience of hepatitis C and stakeholders working in this area, this article explores the experiences and concerns of people with (a history of) hepatitis C in relation to the sharing of their health records. It considers the potential application of health privacy principles in the context of hepatitis C and argues for the development of guidelines concerning the privacy of health records held by health departments and public hospitals. Such principles might also inform reforms to legislation regarding access to health records.