Countering 'the moral science of biopolitics': Understanding hepatitis C treatment 'non-compliance' in the antiviral era.

Although new hepatitis C treatments are a vast improvement on older, interferon-based regimens, there are those who have not taken up treatment, as well as those who have begun but not completed treatment. In this article, we analyse 50 interviews conducted for an Australian research project on treatment uptake. We draw on Berlant's (2007, Critical Inquiry, 33) work on 'slow death' to analyse so-called 'non-compliant' cases, that is, those who begin but do not complete treatment or who do not take antiviral treatment as directed. Approached from a biomedical perspective, such activity does not align with the neoliberal values of progress, self-improvement and rational accumulation that pervade health discourses. However, we argue that it is more illuminating to understand them as cases in which sovereignty and agency are neither simplistically individualised nor denied, and where 'modes of incoherence, distractedness, and habituation' are understood to co-exist alongside 'deliberate and deliberative activity […] in the reproduction of predictable life' (Berlant, 2007, p. 754). The analysed accounts highlight multiple direct and indirect forces of attrition and powerfully demonstrate the socially produced character of agency, a capacity that takes shape through the constraining and exhausting dynamics of life in conditions of significant disadvantage.

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.

Proper distance in the age of social distancing: Hepatitis C treatment, telehealth and questions of care and responsibility.

During the COVID-19 pandemic, telehealth has played a prominent role in the treatment of hepatitis C. As part of a qualitative study on the accessibility and effectiveness of telehealth for hepatitis C treatment during this period in Australia, this article considers how health-care practitioners and patients experience and manage their proximity to each other in telehealth encounters of care. Comparisons between telehealth and in-person health-care tend to focus on measures of patient satisfaction rather than qualitative changes in treatment relationships. Media scholar Silverstone (Digital media revisited: Theoretical and conceptual innovations in digital domains, MIT Press, 2003) uses the term 'proper distance' to theorise how ethical relationships are mediated by technology. Drawing on this concept, we explore how patients and health-care practitioners understand telehealth as affecting distance and proximity. We find that both groups express some ambivalence about the impact of telehealth on relationships, on the one hand expecting and privileging simple, transactional relationships, and on the other hand, expressing concerns about the loss of more intimate relationships in health care and about 'missing something' while providing health care. Given that proximity is important to the development of ethical relationships in health care, we conclude with some considerations for establishing and sustaining attentive and responsive relationships in telehealth.

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.

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.

'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.

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.

Hepatitis C cure as a 'gathering': Attending to the social and material relations of hepatitis C treatment.

Since the advent of direct-acting antiviral hepatitis C treatments, widespread enthusiasm about disease elimination has emerged. This article examines experiences of hepatitis C treatment and cure in this period. Mobilising Fraser and Seear's (Making disease, making citizens: The politics of hepatitis C, Ashgate, 2011) approach to hepatitis C as a 'gathering', we analyse cure not as a biomedical phenomenon but as a social and material event. To do so, we take a Science and Technology Studies-inspired approach to analyse three complementary cases drawn from an Australian project on experiences of hepatitis C, treatment and cure. First, we analyse the ways a friendship between two women combines with adjustments to treatment access to produce a gathering that makes cure possible. Second, we analyse the forces that gather and distribute responsibility when a cure does not occur in a context shaped by oversimplified treatment logics. Third, we analyse a gathering of relations in which hepatitis C lingers, thereby limiting the cure's possible transformative effects. We argue that, even in an era defined by highly effective medicines, the hepatitis C cure is not necessarily straightforward, but an unpredictable gathering constituted by a fragile coalescing of social and material forces.

Noticed and then Forgotten: Gender in Alcohol Policy Stakeholder Responses to Alcohol and Violence.

In this article, we analyse interview data on how alcohol policy stakeholders in Australia, Canada and Sweden understand the relationship between men, masculinities, alcohol and violence. Using influential feminist scholarship on public policy and liberal political theory to analyse interviews with 42 alcohol policy stakeholders, we argue that while these stakeholders view men's violence as a key issue for intervention, masculinities are backgrounded in proposed responses and men positioned as unamenable to intervention. Instead, policy stakeholders prioritise generic interventions understood to protect all from the harms of men's drinking and violence without marking men for special attention. Shared across the data is a prioritisation of interventions that focus on harms recognised as relating to men's drinking but apply equally to all people and, as such, avoid naming men and masculinities as central to alcohol-related violence. We argue that this process works to background the role of masculinities in violence, leaving men unmarked and many possible targeted responses unthinkable.

UNDERSTANDING PREFERENCES FOR TYPE OF TAKE-HOME NALOXONE DEVICE: INTERNATIONAL QUALITATIVE ANALYSIS OF THE VIEWS OF PEOPLE WHO USE OPIOIDS.

Background: Take-home naloxone (THN) is provided to non-medically trained people to reverse potential opioid overdoses. There is an increasing range of effective intramuscular (IM) and intranasal (IN) naloxone devices and this paper explores the types preferred by people who use opioids, using consumer behaviour literature to interpret the findings. Methods: Data derive from two unconnected qualitative studies involving audio-recorded semi-structured interviews. Study 1 was conducted in the United States (n=21 users of non-medical/illicit opioids). Study 2 was conducted in Australia (n=42 users of non-medical/illicit or prescribed opioids). Findings: Most participants preferred IN naloxone. Preferences were based on the ease, speed, safety and comfort of each device and underpinned by accounts of overdose revivals as being very rushed and frightening situations. Preferences related to complex interactions between the naloxone device ('product'); the knowledge, skills, experience and attitudes of the lay responder ('consumer'), and when, where and how naloxone was to be used ('usage situation'). Conclusions: THN programs should offer choice of device when possible and nasal naloxone if resources permit. Asking people which devices they prefer and why and treating them as valued consumers of naloxone products can generate insights that improve future naloxone technology and increase THN uptake and usage.

The "Be All and End All"? Young People, Online Sexual Health Information, Science and Skepticism.

In this article, we investigate young people's trust in online sexual health resources. Analyzing interviews with 37 young people in Australia using Irwin and Michael's account of science-society relations and Warner's conceptualization of "publics," we explore the processes by which they assess the credibility of online sexual health information. We suggest that when seeking medical information, young people opt for traditionally authoritative online sources that purport to offer "facts." By contrast, when seeking information about relationships or sexual practices, participants indicated a preference for websites presenting "experiences" rather than or as well as "facts." Regardless of content, however, our participants approached online sexual health information skeptically and used various techniques to appraise its quality and trustworthiness. We argue that these young people are productively understood as a skeptical public of sexual health. We conclude by exploring the implications of our analysis for the provision of online sexual health information.

Exclusion and hospitality: the subtle dynamics of stigma in healthcare access for people emerging from alcohol and other drug treatment.

This article explores the role of drug use-related stigma in constraining access to healthcare services. Drawing on interviews with 20 people conducted shortly after leaving an Australian alcohol and other drug withdrawal management unit, the article explores their willingness and ability to access primary care, hospital and further services. It finds repeated descriptions of feeling ignored and shamed during efforts to access care, with some descriptions relating to subtle signs of disapproval or condemnation, and others to being ignored or dismissed. Some accounts additionally emphasise unwelcoming atmospheres, and exclusion by omission of signals of welcome and encouragement. The article goes on to consider, for the first time in this field, contemporary notions of welcome and hospitality as outlined within the cosmopolitanism tradition, asking whether they offer insights into how healthcare may become more accessible for people who regularly experience stigmatisation. In concluding, the article considers the need to think further about forms of exclusion that occur when social and individual histories of stigma are not institutionally recognised, and measures to counter these histories are not actively adopted.

Take-home naloxone and the politics of care.

'Take-home naloxone' refers to a life-saving intervention in which a drug (naloxone) is made available to nonmedically trained people for administration to other people experiencing an opioid overdose. In Australia, it has not been taken up as widely as would be expected, given its life-saving potential. We consider the actions of take-home naloxone, focusing on how care relations shape its uses and effects. Mobilising Science and Technology Studies insights, we suggest that the uses and effects of naloxone are co-produced within social relations and, therefore, this initiative 'affords' multiple outcomes. We argue that these affordances are shaped by a politics of care, and that these politics relate to uptake. We analyse two complementary case studies, drawn from an interview-based project, in which opioid consumers discussed take-home naloxone and its uses. Our analysis maps the ways take-home naloxone can afford (i) a regime of care within an intimate partnership (allowing a terminally ill man to more safely consume opioids) and (ii) a political process of care (in which a consumer takes care of others treated with the medication by administering it 'gently'). We conclude by exploring the political affordances of a politics of care approach for the uptake of take-home naloxone.

Prehending Addiction: Alcohol and Other Drug Professionals' Encounters With "New" Addictions.

This article investigates the ways new forms of addiction are encountered by professionals working in the area of alcohol and other drugs. Combining interviews with policymakers, service providers, and peer advocates in three countries (Australia, Canada, and Sweden), and Mike Michael's utilization of the notion of prehension for science communication, we track the notions of addiction, drugs, and subjectivity that emerge when alcohol and other drug professionals encounter what Fraser, Moore and Keane call the addicting of nonsubstance-related practices. The analysis has three parts: constituting addiction unity, questioning addiction unity, and conflicting logics of addicting processes. We argue that specific articulations of drugs and health and specific health professional and addiction subjects are made anew in these encounters. These notions of drugs, health, and subjectivity shape how alcohol and other drug professionals engage with substance-related addictions. In concluding, we consider the implications of new addictions for professional practice.

Remaking the 'angry Narcanned subject': Affording new subject positions through take-home naloxone training.

Naloxone is a medication used to reverse opioid overdose. Alongside its lifesaving effects, it also has a reputation for producing distress, aggression and occasionally violence upon administration. This article analyses how take-home naloxone (THN) training initiatives address naloxone's reputation for producing aggression and conflict, and how new subject positions emerge in the context of this training. While the role of naloxone in producing aggression has been discussed in a range of research, this work emphasises that such conflict is neither inevitable nor even likely because it is contingent on several other issues such as administration practices. Building on this scholarship, we work with Bruno Latour's theorisation of technological 'affordances' to analyse THN as a socially co-produced technology that, rather than either determining or neutrally communicating actions and effects, 'affords' possibilities, capacities and subjects. Analysing data drawn from observations of THN training in Victoria, Australia, and in-depth interviews with training participants, we argue that the issue of conflict upon revival affords a subject position we term the 'angry Narcanned subject'. This subject, we note, has come to hold a powerful position in understandings of naloxone, not least because it tends to accord with stereotypes of antisocial drug users. From here, we argue that a much of THN training is focused on challenging and reframing naloxone's reputation for conflict and questioning related subject positions, especially that of the angry Narcanned subject. We argue that this process of challenging and reframing affords two new subject positions for consumers: the 'capable administrator' and the 'calmer revivee'. We conclude that while THN training affords multiple, potentially positive, subject positions, unless these initiatives are accompanied by broader interventions such as decriminalisation campaigns, they may inadvertently responsibilise people who consume opioids for addressing overdose and erase the role of prohibition, criminalisation and stigmatisation in producing overdose events.

'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.

Under pressure: The paradox of autonomy and social norms in drug education.

Much contemporary youth drug education operates from the assumption that young people's decisions to use alcohol and other drugs often stem from a misunderstanding that youth consumption is so common as to constitute a 'social norm'. Known as the 'social norms' approach, the stated aim of this form of drug education is to empower young people to avoid consumption by constituting it as uncommon and, therefore, abnormal. Taking the relationship between autonomy and norms as my primary concern, I examine key assumptions of the social norms approach through an analysis of a dataset of 23 'evidence-based' drug education texts currently recommended for use in Australian secondary schools. Drawing on Rasmussen's (2011) analysis of autonomy as a 'paradox' in which young people are compelled to demonstrate their autonomy by submitting to external authority, I argue that drug education constitutes young people's (lack of) autonomy as the key cause of and solution to youth drug use through three strategies: (1) decision-making exercises that position consumption as the result of an inability to make the rational choice; (2) activities that equate drug consumption with succumbing to peer pressure and failing to demonstrate autonomy; and (3) deployment of population level data on youth drug use that constitutes it as atypical. Together these strategies suggest that while drug education often purports to empower young people to make empowered decisions, it operates as a broader social intervention that seeks to produce compliant rather than autonomous subjects.

Embarrassment, Shame, and Reassurance: Emotion and Young People's Access to Online Sexual Health Information.

Introduction: Research suggests that embarrassment and shame are significant barriers to young people's access to sexual health information. In this article, we analyse the relationship between emotion and young people's engagement with online sexual health information. Methods: Drawing on the work of Ahmed on the performativity of emotion and Probyn's theorisation of shame, we analyse interviews conducted in 2020 with 37 young people in Australia on sources of sexual health information. Results: Based on themes emerging from the data, our analysis considers the role of embarrassment and shame in shaping young people's access to sexual health information, the sources they seek, and the forms of information provision they prefer. Overall, we find that shame, embarrassment, and judgement shape our participants' access to sexual health information in four key ways: (1) by enacting suitable sources of information; (2) by propelling curiosity in different directions; (3) by constituting 'normal' bodies, sexuality, and sexual health; and (4) by constituting desired forms of communication. Conclusions: As part of these dynamics, our participants use a range of strategies to avoid potential embarrassment or judgement when seeking sexual health information. The article concludes by exploring the implications of these practices and dynamics. Policy Implications: Our analysis suggests the need for research, policy, and public health initiatives that are open to the multiple effects of emotion, including those traditionally thought of as negative, and their role in materialising encounters with sexual health information.

Optimism and eternal vigilance: Gathering disease, responsible subjects and the hope of elimination in the new hepatitis C treatment era.

The advent of direct-acting antiviral hepatitis C medications has reshaped experiences of hepatitis C treatment and cure. Positioned as a treatment revolution, the new medications mean a world without hepatitis C has become imaginable, and this optimism is reflected in Australia's commitment to the WHO's target of 'eliminating' the virus as a public health threat by 2030. Alongside optimism about new treatments, Australia's current National Hepatitis C Strategy also emphasises the importance of partnerships with, and the 'meaningful involvement' of, priority populations for elimination to be achieved. We draw on Fraser and Seear's (2011) work on hepatitis C as a 'gathering' to examine these developments, and to approach hepatitis C as a disease in-the-making. Analysing 50 interviews conducted with people affected by the virus, we identify three key articulations that combine to trouble the distinction between old and new treatments: (1) the new treatment constitutes the disease as readily curable; (2) nevertheless, those who have been cured are responsibilised against acquiring it again by managing and monitoring their conduct; and (3) in the process, hepatitis C becomes re-constituted as an ongoing threat requiring continual post-cure medical and other monitoring. We argue that while treatment experiences have dramatically improved, responsibilising people affected by hepatitis C to attain cure in the context of an elimination agenda constitutes cure as valuable as much for the greater good as for self-care. This raises pressing ethical and political questions. Overall, we shed light on how, even in a context shaped by the availability of highly effective treatment, the hepatitis C-free body is never hepatitis C-free, but must be continually reproduced through regulatory practices.

Heavy drinking as phenomenon: gender and agency in accounts of men's heavy drinking.

Alcohol consumption is a significant public health concern in Australia, with men disproportionately represented in treatment for health issues related to heavy drinking. Despite this, little is known about the experiences of these men or the gender dynamics that may shape heavy drinking. Increasingly, the treatment of alcohol and other drug-related issues, including those related to heavy drinking, is based on a biopsychosocial approach. Within this framework, heavy drinking is understood as a symptom of individual pathology in the context of various social 'factors' that influence individual capacity to exercise agency. Following the work of Karen Barad, this article employs a feminist science studies account of agency to formulate heavy drinking as a gendered 'phenomenon': enacted and sustained through the 'intra-action' of other phenomena. Drawing on interviews with men who drink heavily, our analysis explores how the phenomenon of men's heavy drinking materialises through the intra-actions of gender, isolation and healthcare. We argue that heavy drinking is not a sign of failed individual agency but an expression of entangled agencies. In concluding, we suggest it is possible to enhance the well-being of men who drink heavily by addressing specific gendered intra-actions in the making of heavy drinking.