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.

'I'm not hep C free': afterlives of hepatitis C in the era of cure.

Since the advent of more effective, new-generation treatment for hepatitis C, immense resources have been devoted to delivering cure to as many people with the virus as possible. The scale-up of treatment aims to prevent liver disease, liver cancer and onward transmission of hepatitis C, but social research shows that people also approach treatment with its social promises in mind, including the hope that it might reduce or eradicate stigma from their lives. Such hopes reflect broader ideas about medical cure, which is seen as an end point to illness and its effects, and capable of restoring the self to a (previous) state of health and well-being. But what does cure mean among people for whom treatment does not produce an end to the social effects of a heavily stigmatised disease? While new treatments promise to eliminate hepatitis C, accounts of post-cure life suggest that hepatitis C can linger in various ways. This article draws on interviews with people who have undergone treatment with direct-acting antivirals (n=30) in Australia to explore the meanings they attach to cure and their experiences of post-cure life. We argue that dominant biomedical understandings of cure as an 'ending' and a 'restoration' can foreclose insight into the social and other effects of illness that linger after medical cure, and how individuals grapple with those afterlives. Drawing on recent conceptual re-framings of cure from medical anthropology and disability studies, we suggest that thinking at the limits of 'curative reason' helps to better address the afterlives of chronic illness. In the case of hepatitis C, reconceptualising cure could inform improved and less stigmatising ways of addressing people's post-cure needs. And in the era of hepatitis C elimination, such reconceptualisation is increasingly important as the cohort of people undergoing treatment and cure expands worldwide.

The trouble with normalisation: Transformations to hepatitis C health care and stigma in an era of viral elimination.

Modern health-care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as 'HIV exceptionalism'. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS-related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other 'boutique' public health strategies. The recent availability of highly effective, direct-acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its 'normalisation'. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C-affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.'s (2017, International Journal of Drug Policy, 44, 192-201) theorisation of stigma, and Rosenbrock et al.'s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99-202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma-reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C.

Complicating cure: How Australian criminal law shapes imagined post-hepatitis C futures.

In recent years, highly tolerable and effective drugs have emerged promising a radical new 'post-hepatitis C' world. Optimism about medical cure potentially overlooks discrimination and stigma associated with hepatitis C and injecting drug use. Legal frameworks are especially relevant to hepatitis futures, since the law has the potential to reinforce or alleviate stigma and discrimination. This article explores how hepatitis C figures in Australian criminal law and with what potential effects. Drawing on Bruno Latour's work on legal veridiction, Alison Kafer's work on futurity and disability and case law data collected for a major study on hepatitis C and post-cure lives, we explore how the criminal law handles hepatitis C in the age of cure. We find that law complicates cure, constituting hepatitis C as disabling despite the advent of effective cures. The law steadfastly maintains its own approach to disease, disability and illness, untouched by medical and scientific developments, in ways that might complicate straightforwardly linear imaginaries of cure, transformation and progress of the kind that dominate biomedicine. We explore the implications of these tensions between law and medicine.

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.