The time of cure: hepatitis C treatment and the matter of reinfection among people who inject drugs

ABSTRACT

Australia has made considerable progress towards the public-health ‘elimination’ of the hepatitis C virus. Nonetheless, reinfection remains a key challenge, with little understanding regarding the lived complexities of post-cure life among people who inject drugs. Our analysis examines reinfection through the lens of ‘time’, a largely overlooked and under-utilised analytical concept within the field of hepatitis C. Drawing on qualitative data from a study examining treatment outcomes and reinfection, our analysis concentrates on three participant accounts or ‘cases’. Working within a new materialist framework, we combine recent social science scholarship which, firstly, posits cure as a socio-material ‘gathering’, and secondly, proposes a ‘futurology’ of hepatitis C and its treatment. We found participant accounts troubled the neat binary of pre- and post-treatment life, instead detailing the challenges of remaining virologically safe while navigating complex, local life-worlds. Rather than a singular, post-treatment future instantiated by cure, participants described the fluid, emergent nature of what we might describe as ‘lived’ or ‘embodied’ time, including multiplicities of becoming in a perpetual present. We conclude that our understanding of reinfection needs to move beyond its current, narrow biomedical conception and organising temporal logic to honour and incorporate complexity in practice.

KEYWORDS:

• Hepatitis C
• cure
• reinfection
• time
• futurology
• new materialism

Introduction

Lauded as having ‘revolutionised treatment’ (Banerjee & Reddy, 2016), direct-acting antiviral therapies (DAAs) have given rise to hopes of a world free from the hepatitis C virus (Seear et al., 2021). In 2016, the World Health Organization established ambitious targets for its elimination as a public health threat by 2030 (World Health Organization, 2016). Australia, alongside other nations, enthusiastically followed suit, launching the world’s first government-funded ‘universal access’ scheme and enshrining ‘elimination’ as its policy and programmatic centrepiece (e.g. Australian Government Department of Health and Ageing, 2019).

Nevertheless, despite the substantial reduction in active infection among priority populations continuing to inspire hopes of viral elimination, key challenges remain, including the question of reinfection among people who inject drugs. Combining empirical and conceptual analysis, this paper examines reinfection through the lens of ‘time’, a largely overlooked and under-utilised analytical concept within the field of hepatitis C. How, we ask, does time function as a constitutive, animating force within reinfection as a biomedical phenomenon, and how might we understand reinfection beyond this narrow conception, in ways which honour the complexity evident in our empirical data?

Qualitative research has painstakingly chronicled the often-complex history of hepatitis C treatment among people who inject drugs (for detailed overview, refer Rance & Treloar, 2023). Recently, however, social science scholars have turned their attention to the object of ‘cure’ itself. Drawing inspiration from the ontological or new materialist turn, their work affords two valuable insights germane to our analysis: firstly, by positing hepatitis C cure not as a biomedical phenomenon but as a ‘fragile and dynamic process’ held together by social-material relations wherein social and material forces are understood as ‘ontologically inseparable from cure itself’ (Farrugia et al., 2022); and secondly, by applying the concept of ‘futurology’ to hepatitis C, challenging us to think critically about the temporal dimensions of biomedical treatment and ‘cure’, including the embedded ‘logics of progress and inevitability’ (Seear et al., 2021). We explore three participant accounts or ‘cases’ collected as part of a study on DAA-treatment outcomes and reinfection among people who inject drugs.

Australian data indicate that of the nearly 96,000 people who completed treatment between 2016 and 2021, 7.3% received retreatment, with just over half of these – 3,614 individuals – due to reinfection (Carson et al., 2023). Among populations of people who inject drugs, reinfection risk is high in the period immediately following hepatitis C treatment completion (Hajarizadeh et al., 2020) and ameliorated by protective strategies, such as access to opioid agonist treatment programs (Grebely et al., 2022). For people in correctional settings, the risk of reinfection is compounded by the absence of prison needle syringe programs (Harm Reduction International, 2023). For example, in 2020, data from Australia’s most populous state of New South Wales confirmed that some prisoners were onto their fourth round of retreatment, with estimates indicating that at least 50% of reinfections occurred in prison (Blogg et al., 2020).

Epidemiological data tell us little, however, about the lived complexities of post-cure life among people who continue to inject drugs. Despite the great optimism inspired by new treatments, accounts of enduring social disadvantage and stigmatisation, failed hope, and a stubborn distrust in biomedical treatment, continue to emerge in the contemporary qualitative literature (e.g. Goodyear et al., 2021; Kagan et al., 2023; Madden et al., 2018). Such accounts perform a valuable counterpoint to the logic of unilinear progress which underpins elimination discourse and underplays the social and material complexities that continue to govern the post-cure lives of people who inject drugs. The accounts of the three ‘cases’ featured in our analysis similarly draw our attention to the vicissitudes and complexities of what we might think of as ‘lived’ or ‘embodied’ time, troubling assumptions of a neat pre- and post-treatment binary and a singular, post-treatment future instantiated by cure. For many, this includes the persistence of the very social and material forces which rendered individuals vulnerable to infection in the first place.

Working with ‘time’ as our analytical tool, we endeavour to draw attention to and elucidate the empirical complexities of post-cure life in novel and instructive ways. In doing so, we propose moving beyond the current, narrow conception and temporal logic of biomedical reinfection, to an understanding which recognises and incorporates the dynamic, emergent nature of lived time.

Theoretical approach

New materialist approaches, especially within the field of Science and Technology Studies (STS), have become increasingly influential within the social science of hepatitis C and illicit drug use (for a detailed overview, see Fraser, 2020). As Valentine and Seear (2020, p. 1) rightly identify, one of the reasons the ontological turn has proven ‘so compelling’ for researchers is because of ‘what it affords in terms of political and empirical analysis’. By positing the material world and its contents as relational, contingent, and emergent, new materialists have drawn our attention to the made-in-practice nature of realities and phenomena that other approaches have considered fixed, knowable, and unchanging (e.g. Fox & Alldred, 2017; Fraser, 2020; Law, 2004). This dismantling of long cherished distinctions – whereby, for example, ‘nature’ and ‘culture’ are now considered contiguous rather than separate – has enabled new questions to be asked in areas traditionally considered outside the purview of social scientists. Biological phenomena, for example – such as atherosclerosis (e.g. Mol, 2002) or, in our case, hepatitis C cure – have become legitimate objects of social scientific study and analysis. Crucially, this has also equipped social scientists to identify and elucidate the (re)production of social injustices through the dominance of certain erstwhile taken-for-granted realities and objects (e.g. Valentine & Seear, 2020).

Fraser and Seear’s (2011) seminal text is an early exemplar of social science scholarship incorporating the conceptual tools of the ontological turn to radically reappraise how we think about hepatitis C. In an explicit departure from biological and constructionist approaches, the authors propose understanding (all) diseases as emergent phenomena, constantly made and remade by social and political forces rather than distinct from them: ‘Our point, ultimately, is that conventions and values and social practices such as health policy and stigma make the disease as much as microbes do’. (p. 11)

Working within the social-material context of the contemporary treatment era, Farrugia et al. (2022) mobilise Fraser and Seear’s argument to reconceptualise cure itself as ‘a gathering’. The authors are concerned that amidst the ‘enthusiastic embrace’ of highly curative new treatments and ‘easy cures’, critical issues – including forms of social structural disadvantage such as stigma, poverty, housing and so forth – will simply ‘fall from view’. Even in an era defined by highly effective medicines, they argue, ‘cure’ is not necessarily straightforward, but an ‘unpredictable gathering constituted by a fragile coalescing of social and material forces’ (pp. 830–831). Echoing Fraser and Seear’s earlier concern regarding the ‘responsibilisation’ of the individual, Farrugia and colleagues contend that by overlooking this ‘fragile coalescing’ of forces commonly understood to be extrinsic to treatment and cure, the individual will, by default, be centred as ‘wholly responsible’ for negative treatment outcomes. By insisting on an approach that treats social and material phenomena as ontologically inseparable from the materialisation of cure, the authors not only disrupt this individualising and responsibilising tendency but challenge the notion of cure as biomedical endpoint.

While the concept of ‘a gathering’ has important implications for how we might think about the temporal dimensions of cure and reinfection – such as how time acts within a cure assemblage – Seear et al.'s (2021) recent work on the ‘futurology’ of hepatitis C engages explicitly with questions of time. Seear and colleagues are similarly troubled by what is being downplayed or overlooked in the elimination era, with its ‘promise of new drug futures, including the possibility of a post-hepatitis C world and a revolution in the lives of people affected by the disease’ (p. 1).

We argue that hepatitis C policy, practice and research can instantiate a problematic orientation towards medicine & ‘the future’ […] [G]lowing accounts of medicine’s ‘revolutionary’ potential and a ‘post-cure future’ contain a series of assumptions regarding time, medicine, change and progress that warrant careful critique. (pp. 1–2)

Seear and colleagues take inspiration from social anthropologist and activist, Cuevas-Hewitt (2011), on the ‘futurology of the present’. Cuevas-Hewitt is highly critical of an understanding of time as both compartmentalised and unilinear, and its accompanying conceptual baggage of ‘past, present, and future as three separate things’ (n.p.). Abandoning the ‘tyranny of linear time’, Cuevas-Hewitt instead advocates a notion of ‘perpetual present’ or ‘endless becoming’. Following Cuevas-Hewitt’s critique, Seear and colleagues call for those within the field of hepatitis C to:

proceed cautiously about claims of a post-cure ‘revolution’, to think more critically about linear and compartmentalised approaches to time (regarding drugs, hepatitis C, and ‘addiction’) and to confront the related logics of progress and inevitability that are often embedded within them. (p. 2)

One of the principal ways in which this logic of progress and inevitability is instantiated, Seear and colleagues contend, is through the tendency of key figures such as policymakers and researchers to ‘naturalise’ the hepatitis C epidemic, and in so doing, its ‘associated injustices’ such as stigma. The authors cite the exemplar of the ‘cascade of care’, a key public health construct which, they argue, envisages the treatment journey as a ‘frictionless’, one-directional progression through a ‘neutral’ environment towards an inevitable ‘transformative post-cure future’. Importantly, the authors note, the cascade concludes at the point of cure, effectively eliding the question of reinfection. Pushing back against this temporal orthodoxy, Seear and colleagues draw our attention to the frictions, legacies and inequitable environments that people who inject drugs may (continue to) encounter post-cure: ‘most notably, the ongoing criminalisation of drugs, but also the legacy of other laws and policies that were devised in a pre-cure world, but which continue to shape the lives of people with hepatitis C’ (p. 2).

Proposing a series of priorities for a futurology of hepatitis C, Seear and colleagues remind us of the performativity of research and writing as practices that do not merely document the world but actively shape it. In order to ‘complicate simplistic imaginaries of the transformative power of cure, and of a singular post-cure world’ (p. 4), the authors commend us to pay special attention to what happens beyond the point of cure: ‘to take account of the full range of post-cure experiences, including the possibility of multiplicities of becoming through medicine, non-linear journeys, transformations and digressions’ (p. 5). This includes attending closely to the various forces that shape suffering in the present – suffering readily obscured by a logic of unilinear progress preoccupied with the metrics of treatment uptake and cure.

A new materialist approach allows us to attend to the complex effects and relations between tangible and intangible entities. Material things (such as humans and viruses) as well as abstract concepts (such as time) affect and are affected by one another, and thus can only be understood in relation with other human and non-human actors, within networks or assemblages. Drawing on the conceptual tools briefly sketched here, our analysis treats cure and reinfection not as partial, simple, and objective matters of fact, but rather, as diverse, complex, and political matters of concern (Latour, 2004). Herein time becomes an important actor, not as a fixed and singular entity, but as situated and materialised differentially in relation to cure and reinfection.

Methods

The qualitative data informing our analysis were collected as part of a broader cohort study prospectively examining DAA-therapy outcomes and reinfection: the SHARP-C study. Recruitment for qualitative interviews focussed on five hepatitis C treatment services, all variously attached to or co-located within primary health, opioid treatment, or tertiary hospital settings: two in inner-Sydney; one in Western Sydney; one on the mid-North Coast of NSW; and one in Adelaide, SA. Interviews were conducted either via telephone (n = 9) or in-person (n = 9), determined by participant preference and location. Interviews were conducted December 2020–July 2022.

Interviews followed a semi-structured schedule lasting 30–60 min, with participants reimbursed with a $AUD60 gift card. Interviews began with demographic details and an overview of participants’ drug-use, hepatitis C, and hepatitis C-treatment histories. The substance of the interview comprised questions exploring participants’ injecting drug use during and following treatment, including any changes in regularity of use (periods of abstinence, for example) or in injecting practice (such as changes in injecting networks). In the event of reinfection, additional questions explored what participants could recall about the context and circumstances of reinfection, how they felt about the diagnosis, and the prospect of retreatment.

Interviews were digitally recorded, professionally transcribed, checked for accuracy and de-identified. All transcripts were read closely and repeatedly by JR and CT and discussed at length. These discussions were guided both by the conceptual literature outlined above and by inductive themes identified in our data. Working with the conceptual tools outlined in the previous section, we wanted to demonstrate empirically, the case for cure as a fragile and ongoing struggle, drawing on participants’ accounts of ‘lived time’ to disrupt the precepts of progress, linearity, and compartmentalisation underpinning biomedical cure.

In light of these analytical decisions and guided by the work of Fraser and Seear (2011) (see also, Farrugia et al., 2022), we chose to take a ‘case’ approach to our analysis. Informed by STS scholarship, a case approach draws primarily on Mol and Law’s (2002) work on ‘complexity’. As Mol and Law explain, while cases are not to be understood as representative of something larger, they may still be ‘instructive beyond its specific site and situation’ (p. 15); they are ‘sensitizing but also unique’ (p. 16). Cases, the authors elaborate, ‘may suggest ways of thinking about and tackling other specificities, not because they are “generally applicable” but because they may be transferrable, translatable’ (p. 15). In selecting cases for our analysis, we prioritised participant accounts that best captured a range of post-cure temporal and socio-material complexity, including our sole account of current reinfection.

Approval for this study was granted through St Vincent’s Hospital Human Research Ethics Committee (HREC) (17/SVH/377). Pseudonyms have been used throughout this article.

Analysis

A total of eighteen participants were interviewed, three of whom reported reinfection. The latter included one participant who had been retreated twice, another who was undergoing retreatment at the time of interview, and a third, the sole participant identified as living with hepatitis C at the time of interview. Below we examine three cases: firstly, Matty (noted immediately above), a First Nations man in his 40s receiving methadone maintenance and living with (re)infection following his first treatment with DAA-therapy; Rachel, an inner-city resident also in her 40s and on methadone, living without hepatitis C following DAA-therapy several years ago; and Becky, a woman in her 50s, also on methadone and hepatitis C-negative following DAA-therapy four years ago.

Our three cases capture a diversity of post-cure experience while ensuring a demographic balance. Although each case affords a unique account of post-cure life, collectively they evince the notion of cure as a socio-material and temporal process. The combination of participants with and without ‘reinfection’ underscores the commonality, the shared nature, of this complex struggle. While the reinfection case chronicles the undoing of cure (as ‘reinfection’), the two negative cases reinforce how such an eventuality should not be understood as an isolated or exceptional event, but rather as a potentiality common to all navigating the complexities of post-cure life.

Case 1: Matty

‘I just slip back again’: reinfection and the legacy of mental illness.

Matty, a First Nations man and inner-city resident, was the only participant to report reinfection but not retreatment. Matty explained that while his drug of choice is typically methamphetamines, he had developed ‘a bad heroin habit’ following his divorce and had recently begun methadone maintenance treatment. Matty reported experiencing significant ‘dramas’ since his divorce and desperately missing his young children with whom he had only infrequent contact: ‘it’s fucking killing me’. First diagnosed with hepatitis C in his mid-twenties, Matty resisted undertaking interferon-based treatment: ‘I looked into it […] People I knew were really sick, so […] I just backed out of it really’. However, in 2019, Matty successfully completed DAA-therapy through a primary healthcare clinic, attending daily in conjunction with his methadone.

Matty recalled his commitment to remaining abstinent whilst on DAA-therapy: ‘I made sure of it [not injecting]. I was so happy that I was on the treatment, and I was proud of myself for doing it you know, so I didn’t want to jeopardise anything’. However, a month or so following treatment completion he resumed using methamphetamine ‘with a vengeance’:

I thought I was sweet now and all good and I could celebrate […] that I had been clear of hep C. I sort of set a few goals too. I stayed abstinent for a while and felt good about that. Like I said, it’s contradictory. I just thought “oh yeah, I’ve been good, so now I’ll be bad”.

Nevertheless, Matty reported remaining highly cognisant of the risk of reinfection: ‘Yeah, every day. Every time I used. I was always making sure the spoon was clean, making sure I know who I’m using with and all the rest of it’. Matty also described receiving ongoing support from the service providing his treatment, including advice regarding reinfection risks and regular pathology screening. However, not long after clearing the virus (known as ‘sustained virological response’ or SVR), and despite his vigilance and the ongoing monitoring and support, Matty was diagnosed with reinfection. Here, he recalls the injecting event he believed led to his reinfection, and his response to the reinfection diagnosis:

It would have been late April and I was with a mate of mine […] Because we only had one fit, I asked him if he was clean. He said “yeah”, and I took his word for it … 

And how did you feel when you were told [about reinfection]?

Destroyed. I’d worked so hard […] I thought that once I’d done that, that was one step closer to having a normal life and having some sort of normality again. Like, it’s fucking hard […] I am always taking care, you know […] Since I’ve been reinfected, I’ve been scared to be around my kids again, just in case. A toothbrush, fucking razors being left on the sink … 

Framing ‘risk’ solely in biomedical terms would fail to apprehend the broader dynamics complicating Matty’s post-cure life, including the legacy of his serious mental illness and the profound suffering and emotional distress of his divorce and subsequent separation from his children. This is a legacy further complicated by Matty’s ongoing attempts to manage his ‘bipolar’ through methamphetamine use:

Like I said, with me it’s like a rollercoaster, the depression […] suicidal thoughts pretty often […] Drugs have always been my blanket […] A fair few things happened to me when I was younger, so I’ve always sort of used drugs as an escape and forget about everything […] I have to keep coming here [primary care service] every day and see the counsellor and just trying to keep myself right, but there’s always something that tips me back over the edge. So, still sort of struggling now; have my off days and good days […] It’s a vicious circle really.

In the context of Matty’s account, describing cure as ‘an ongoing struggle’ (Farrugia et al., 2022) affords us greater clarity not only about the social and material process of maintaining cure, but about Matty’s existence more broadly. ‘Every day’, for Matty, was about ‘just trying to keep myself right’. Matty’s struggle to maintain cure was not simply reflected in, but entangled with, his ongoing struggle to maintain life itself. Far from an inevitable, linear, and frictionless progression into a post-cure future, Matty’s account of embodied time evokes what Barad (2015, p. 388) calls the ‘thick now of the present’, in which past and future become ‘condensed’ within the present moment. For Matty, caught in what he describes as ‘a vicious circle’, his present is routinely overwhelmed, haunted, by his past.

Although the metaphor of a vicious circle connotes the intrusive recycling of Matty’s past within his present, his account also references an imagined (yet unrealised) future made possible through cure: of being ‘one step closer to having a normal life’. Consistent with accounts widely documented in the literature (e.g. Clark & Gifford, 2015; Harris, 2017), hepatitis C treatment for Matty promised not simply biological cure but personal and social redemption. While Matty had aspired to remaining abstinent following DAA-therapy, this had proven fraught:

[T]hat was the thing about the methadone. I’ve had a lot of dramas with it. Just mental health stuff going on. I would get clean for a while and then something tips me over the edge, and I just slip back again.

Far from the promised fulfilment of a telos instantiated by cure – of ‘normal life’ and the consignment to history of a problematic past – Matty’s post-cure existence approximates Cuevas-Hewitt’s (2011) notion of futurology as ever-unfolding ‘perpetual present’ (see also, Seear et al., 2021). Here, instead of experiencing lived time as linear, it becomes an indivisible flow of past, present and future, characterised by enduring shame and sadness, reoccurring mental illness, and an ongoing struggle around the desire for methamphetamines:

When you have been a meth user for ages, you get this anticipation to use and you just want to get it in you […] I know it sounds horrible, but you don’t lose that feeling in your gut until you have that shot and it gets worse and worse and worse until you have it you know […] And you get sweaty and like it’s horrible […] You can treat opioids with methadone, [with meth] there’s nothing … I know that every shot I have, I’m getting further and further away to having my life back, and yet I still do it.

Case 2: Rachel

‘My house, my rules’: familial forces and the ongoing struggle of cure.

Rachel, also an inner-city resident in her 40s, recounts first injecting heroin aged eleven before being diagnosed with hepatitis C aged fifteen. Like Matty, Rachel had similarly refused interferon-based treatment after witnessing what ‘old-school users went through’. She recalls feeling a sense of despair at the time: ‘fuck it, I’ve got hep C, they’re never to going to find something to get rid of that’. However, following the advent of DAAs and having witnessed her partner navigate the liver-related effects of his chronic hepatitis C, Rachel was motivated to address her own infection before ‘it did any damage’.

Rachel accredited achieving SVR with ‘more energy’, ‘a more positive outlook on life’, and a lessening of her ‘depression’. Interestingly, however, Rachel did not attribute cure to medication alone but instead spoke of a coalescence of social and service-related actors: ‘Like I’m hep C free … the methadone and the counselling: all that combined’. Critical to this gathering was Rachel’s primary healthcare service, integrating her daily doses of DAA-therapy and methadone, and ensuring ongoing access to therapeutic support. Here too, Rachel identified the emergence of a sense of familial responsibility. Initially a motivating force pre-treatment, Rachel now ascribed this sense of familial duty as integral to the ongoing maintenance of cure post-treatment:

Now I’ve got responsibilities. My kids want to contact me, my grandkids […] That was another main drive for me to try and at least get rid of it, because I don’t want to have to tell my kids I’ve got hep C […] I want to get my shit together. My 19-year-old daughter has made contact with me […] So, if I hadn’t gotten to where I am now, I would never been able to get in contact with my kids … 

While recognising the supportive role certain social and familial relations played in the achievement of her cure and its ongoing maintenance, Rachel also identified the threat others posed to its ongoing materialisation. Far from a neutral post-cure environment, Rachel’s home had become a site of friction. Rachel reported that her partner had become reinfected following treatment and was struggling with his methamphetamine use – ‘he’s admitted he’s got a problem’. Her partner’s drug use and recent reinfection had now become domestic, if not intimate, actors threatening to disrupt the fragile coalescence of her cure. In part, we might understand this friction as a product of their respective temporal orientations: Rachel’s time of cure rubbing up against her partner’s time of reinfection. If we understand time itself as a network comprised of socio-material actors, how then is domestic time held together when the embodied times of its two actors are effectively ‘out of sync’? Indeed, Rachel reported only recently getting re-tested for hepatitis C ‘[b]ecause I stabbed myself on a syringe that my partner had used’. Acknowledging her frustration with her partner (‘I don’t want him in the house’), Rachel nonetheless recognised that, for now at least, she could endeavour to mitigate the viral risk by enacting changes within the household:

I just realised how much I was putting myself out there, at risk, when I was letting people into my home. Me mixing up shots and I don’t know what they’re doing, whether they are washing their hands, so I minimise that by not letting anyone use in my house … My house, my rules!

More broadly, Rachel’s account connoted a building of momentum, a gathering together and galvanising of the elements of cure over time: the bearing witness to her partner’s liver damage, the twenty years ‘on and off’ methadone, the counselling, the emerging of familial responsibility. For Rachel, cure is a temporal accomplishment as well as an emotional, social, and material one: ‘I am happy finally. It’s taken me a long time to get to where I am’. Nonetheless, she is also mindful of the political and social forces that have not only enabled cure but now threaten it: ‘I’m not going to have anyone try and bring me down. I’m grateful that I got to have that treatment, because I think of all the people in countries where they can’t get this sort of treatment free’.

For Rachel, cure functions as both a means and an end; by turns the culmination of years of struggle and as an actor within that struggle. Here she suggests the latter, describing being ‘at the point where I’ve just had enough of heroin […] I think clearing the hep C … was a factor in me getting clean […] a big factor in getting to where I am now’. While Matty’s case disrupted conventional assumptions of linear time – including those animating biomedicine cure – Rachel’s account similarly unsettles the accompanying notions of ends and means. Here again, Cuevas-Hewitt’s conception of futurology is helpful, providing us with an alternative understanding of time as an ‘endless becoming that knows no discrete temporal stages, no telos […] Means and ends have only come to be regarded as mutually exclusive entities because present and future have been treated likewise’ (2011, n.p.).

Case 3: Becky

‘A bit more fanatical’: shame, stigma, and the intimate relations of cure.

Becky, in her 50s, recalled injecting for the first time in her late 30s, explaining that while she has been on opioid agonist treatment for the past five years, she continues to use heroin regularly. Diagnosed with hepatitis C in 2017, the decision to commence DAA-therapy in 2019 was neither easy nor straightforward:

I was a heavy binge drinker at the time, so I was really scared of the damage […] I was concerned, but I really put it off. It was really the alcohol that really did it for me, because I still was really into that shame and stigma of like hep C being dirty […] I felt really ashamed and dirty and bad about it. It was the alcohol that pushed me. If it wouldn’t have been the alcohol, I probably wouldn’t have done it because of the shame.

Following Fraser and Seear (2011), Becky’s internalised shame and stigma co-constituted her hepatitis C as much as the microbes and other biological constituents. Her sense of abjection not only complicated her decision-making preceding treatment but shaped her subsequent experience of it. Getting her bloods done in a public hospital was, according to Becky, ‘the hardest part of treatment’, so much so that she cancelled her initial appointment: ‘My nurses were lovely … but still, there’s a lot of shame […] I was really, really nervous of having to do my hep C in the hospital … I felt really icky and horrible’.

Featuring prominently throughout Becky’s narrative is her ‘flatmate’; his presence was integral, both to her accounting for cure and its materialisation. Early on in her account, Becky characterises the nature of her heroin use, establishing not simply the ‘facts’ but enacting a certain subjectivity or ethic of self: ‘I use with my flatmate, and we use in our own home. I’ve never been a person that’s shared needles and been on the streets, but most of the usage was with someone with hep C’. While Becky leaves the precise nature of her and her flatmate’s relationship undefined, her account of their history of domesticity and shared heroin use connotes closeness and trust: ‘it’s a very intimate thing because you know, like the needle, and when you are sharing a shot with someone […] it’s a very intimate sort of set up’. Becky goes on to explain how she and her flatmate undertook DAA-therapy together, both achieving SVR at the same time: ‘about a year ago we got our all clear’.

While it was clearly significant for Becky and her flatmate to complete treatment together, this was far from the end of their viral entanglement. Indeed, what becomes increasingly clear is how their (new) shared serostatus is not only vital to the enactment and maintenance of their intimacy but to the ongoing materialisation of Becky’s (and her flatmate’s) cure. In stark contrast to Rachel and her partner, the temporal orientation of Becky and her flatmate are aligned. Sharing the time of cure, they act as agonistic rather than antagonistic forces in the maintenance of their collective cure. As Becky explains:

We are both cleared, so therefore we can still use. So, it’s been an ongoing, organic experience. Like we care more about ourselves, but now you know, my flatmate clips his [fit] and mine is unclipped, so we know all the clipped ones are my flatmate’s, all the unclipped ones, mine.

Here again, cure is constituted as both an ends and a means, its achievement as a biomedical endpoint enfolded within both present and (an anticipated) future. This is a future in which cure is, according to Becky’s account, held together through intimacy, shared serostatus, and safer injecting arrangements. In this sense, cure becomes part of its own gathering, an actor within the coalescence of social-material relations intrinsic to cure’s ongoing realisation. Framed as such, the linear and compartmentalised time of biomedicine is displaced by an emergent and perpetual present within which the neat lines of past, present, and future are effectively dissolved. Or, as Becky puts it, ‘an ongoing, organic experience’.

Unlike either Matty or Rachel, Becky reported no desire to change her relationship with heroin or injecting drug use following treatment: ‘All I wanted to do was to be healthy if I did take drugs’. Nonetheless, Becky acknowledged her opioid agonist treatment clinic as an important actor in the maintenance of her cure – ‘[they] are really good, that’s why I still go daily … it’s good to keep having that connection’ – including providing Becky with regular prompts regarding follow-up serology screens. Like Rachel, Becky too seemed to have an implicit understanding of cure as an ongoing and potentially fragile process. She was aware of the social-material relations, arrangements and environments not only generating but threatening her cure. Attending to the latter required inaugurating changes not simply to her injecting practices but to the governance of her domestic space and its social relations. As Becky explained, this required enacting a solution that was both effective and ethical, balancing the maintenance of her cure against the needs and safety of her community:

We are a bit more fanatical. We sort of had to be, because … we are still known as people that always have clean fits and clean swabs and stuff like that. [We had to say] “If you are coming over for a fit […] I don’t want ten lines out of your dirty one and can you not use here, but at the same time I want you to use safe”.

Here, time again plays an important role. Becky’s solution requires her to balance what are in effect competing timeframes or temporalities: the tempting immediacy of free drugs (‘ten lines’), for example, versus the long termism of not just virological maintenance but community attachment and belonging. Once again, Becky’s experience of lived time is not a linear one, with a discretely compartmentalised past and an imagined future, but rather both are condensed within an emergent present. Her intention to maintain cure requires her to foresee (and foreclose) a (potential) future in which her past threatens to (re)materialise via community expectations of her domestic space as communal needle exchange and informal injecting facility.

Conclusion

In relation to hepatitis C cure and reinfection, the utility of time as an analytical tool has been largely underexplored. Drawing on Cuevas-Hewitt’s work on futurology and building on Seear’s development of the concept, we hope to have established pathways for future analysis. Both biomedical reinfection and cure, we have argued, are held together by a particular temporal orientation and logic: of progress, compartmentalisation, and linearity. Such a conception, we contend, belies the experience of time – what we have referred to as ‘lived time’ – documented in the post-cure lives of the participants in our study as well as people who inject drugs more broadly. In this paper, we have endeavoured to understand reinfection beyond this narrow conception of time to incorporate the complexities evident in our empirical data. Drawing on the conceptual insights of new materialism, including those from recent social science scholarship on the reconceptualisation of cure as a socio-material ‘gathering’ and the ‘futurology’ of hepatitis C, we have concentrated on the temporal, social, and material phenomena identified in three participant accounts.

Working with the cases of Matty, Rachel and Becky afforded us valuable insights into what Mol and Law refer to as ‘complexity in practice’ (2002, p. 6), honouring the particularities and complexities of each while also identifying their commonalities. What became clear was the failure of biomedicine to account for the temporal, social and material relations and dynamics required to not only generate cure but maintain it. Belying the ‘cure is easy’ catchcry of elimination efforts, all three cases (albeit most explicitly in Matty’s case) drew our attention to cure’s fragility and the ongoing struggle required to maintain it. Indeed, all three reminded us that ‘even when it does occur, cure remains an emergent and always unstable social and material phenomenon defined by more than a sustained virological response’ (Farrugia et al., 2022, p. 836). In different ways, each case disrupted the biomedical imaginary of a neat temporal separation between pre- and post-treatment life in which a singular, frictionless future is untethered from the legacies of the past. Instead of experiencing past, present, and future as three distinct periods, participants’ lived time connoted an indivisible flow between the three temporalities, evoking what Seear et al. describe as ‘multiplicities of becoming in a perpetual present’ (2021, p. 5).

Recent critical social science has convincingly argued that biomedical concepts and models, such as ‘cure’ or the ‘cascade of care’, should not be treated as simply neutral or disinterested ways of knowing and representing the world (e.g. Marshall et al., 2022; Rhodes & Lancaster, 2021). Instead, we should recognise them as political and performative constructs that not ‘only describe but help to produce the reality that they understand’ (Law, 2004, p. 5). How we conceptualise hepatitis C ‘cure’ has both epistemological implications and ontological effects, (re)shaping not only the clinical norms and experiential possibilities of treatment, but how we might better understand notions of responsibility for, and following, treatment. This is particularly germane in the context of hepatitis C, where individual members of highly stigmatised and disadvantaged communities are readily positioned as irresponsible or careless in the event of infection, and even more so in terms of reinfection.

Enacting cure as both the clinical endpoint of an individual’s ‘treatment journey’ and the ontological eradication of infection, biomedicine becomes the arbiter of what we might think of as ‘viral time’. By delimiting the time of cure and defining its culmination, biomedical treatment effectively disavows any further responsibility, thereby rendering the individual ultimately responsible for their viral future, including the possibility of reinfection. More broadly, it also foregoes the critical opportunity to better apprehend the various social and material forces that continue to shape post-cure life, including those that, as Seear et al. (2021) point out, shape suffering in the present.

In conclusion, it is worth reflecting on an observation by Mol and Law (2002, p. 3) regarding the nature of simplification and complexity:

[S]implifications that reduce a complex reality to whatever it is that fits into a simple scheme tend to “forget” about the complex, which may mean that the latter is surprising and disturbing when it reappears later on … 

Such an observation shares remarkable parallels with our own critique of the simplistic conception of biomedical cure and its tendency to foreclose – or ‘forget’ – the complex. We suggest that in the case of hepatitis C, what happens to the complex when it ‘reappears later on’ is what we refer to as ‘reinfection’. Drawing on three empirical cases alongside the insights of Farrugia et al. (2022) and Seear et al. (2021), our analysis has paid close attention to the complexities of cure in practice. Crucially, this has included attending to accounts of lived time which challenge and disrupt the temporal logic of biomedical cure. For as Mol and Law (2002, p. 13) observe: ‘Time flies, but it flies like a swallow, up, down, off quickly and then coming slowly back again. Attending to such a time brings complexity into play … ’.

While our paper has consistently foregrounded the need to think beyond the narrow conception and temporal logic of biomedical cure and reinfection, our intention has never been to imply that linear time simply does not exist, nor that ‘futurology’ necessarily affords us a total and unimpeachable alternative. For, as Mol and Law (2002, pp. 20–21) go on to suggest, handling complexity is ‘unfinished business … In a complex world there are no simple binaries. Things add up and they don’t. They flow in linear time and they don’t’. What we have argued, however, is that in an era defined by the seductive promise of ‘easy’ cure, it is more imperative than ever that we attend to its lived complexities. As a first step, this requires recognising that the temporal, social and material phenomena shaping the lives of many affected by hepatitis C – both pre- and post-treatment – are not merely ancillary to cure, but intrinsically constitutive of it. By failing to apprehend the forces, frictions and legacies that endure for many people post-cure, we are not only in danger of ‘naturalising’ existing forms of social suffering (Seear et al., 2021) but of failing to address those very phenomena that undo people’s best efforts to remain virologically safe (e.g. Goodyear et al., 2021). In persisting with our current approach, we risk leaving not only matters of complexity but matters of justice unacknowledged and unaddressed.

Acknowledgements

The authors would like to thank the study participants for their generous contribution to the research, as well as service staff who helped facilitate the interviews. Thank you also to the two anonymous reviewers for their thoughtful and considered comments on an earlier draft.

Disclosure statement

JG is a consultant/advisor and has received research grants from Abbvie, Abbott, Biolytical, Camurus, Cepheid, Gilead Sciences, Hologic, and Indivior. CT has received speaker fees from Abbvie and Gilead, and grants from Merck.

Additional information

Funding

This study was supported through a National Health and Medical Research Council Project [grant number 1128886]. The Kirby Institute is funded by the Australian Government Department of Health and Ageing. The views expressed in this publication do not necessarily represent the position of the Australian Government. JG is supported by a National Health and Medical Research Council Investigator [grant number 1176131].