Echoes and Antibodies: Legal Veridiction and the Emergence of the Perpetual Hepatitis C Subject

Background and Approach

Hepatitis C was first named in 1989, having previously been dubbed ‘non-A, non-B hepatitis’. Since its naming it has been the subject of considerable academic scholarship, with most work emerging from the fields of public health and epidemiology. A smaller but influential body of social science literature examines the virus from sociological and related perspectives, including its depiction and management in health promotion, harm reduction initiatives and public health policy, as well as lived experiences of the virus, treatment, and cure (e.g. Fomiatti et al., 2020; Lancaster, Rhodes and Rance, 2020; Harris 2017; Rance et al., 2017; Seear et al., 2012; Dwyer, Fraser and Treloar, 2011; Fraser, 2004; David and Rhodes, 2004). A subset of the research conducted to date on hepatitis C is associated with the field of critical alcohol and other drug (AOD) scholarship and draws on various theoretical tools, including feminist and queer theory and Science and Technology Studies (STS) approaches. This work often aims to denaturalise understandings of how the disease and the epidemic ‘work’ in society, policy, law and other contexts. This requires some explanation. A key logic of drug policy and law is that drugs produce certain stable, predictable, singular effects (see Fraser and Moore, 2011). This includes forms of harm such as hepatitis C infection, which is sometimes understood as an inevitable effect of injecting drug use (Rhodes and Treloar 2008). Here, the virus is virtually conflated with injecting drug use (Harris 2005). Critical AOD scholarship argues that drug effects are better understood as unstable, unpredictable, complex and multiple (Fraser and Moore 2011): the product of numerous human and non-human forces or ‘assemblages’, and as such politically, rather than naturally, produced (e.g. Seear 2020, Dilkes-Frayne & Duff 2017, Dilkes-Frayne 2016, Farrugia 2017; Malins 2017; Moore et al., 2017, Duff 2016, Fitzgerald 2015, Hart 2015; see also Deleuze and Parnet 1987). The relationship between injecting drug use and hepatitis C is similarly complex and political (Fraser and Seear 2011). One does not inevitably acquire hepatitis C through injecting drug use. Viral transmission is instead shaped by numerous forces including: a person’s level of access to needle and syringe programs; the existence of any rules or barriers regarding their ability to source sterile equipment; the existence of laws prohibiting who can access and distribute sterile needles and syringes (still a feature in some parts of Australia); whether they reside in prison, and whether that prison has needle and syringe programs (not yet a feature in any Australian prison); and other legal factors, including the existence of laws that criminalise the use and possession of drugs, which can in turn shape people’s injecting practices. Stigma surrounding injecting drug use is also a significant factor. In the West, hepatitis C is synonymous with injecting drug use, and the epidemic is shaped by public health strategies targeted at the individual actions of people who use drugs. In a country such as Egypt, however, the epidemic is shaped by public health strategies and practices, as well as broader economic and political conditions.

In earlier research, Fraser and Seear argued for the need to attend more carefully to the various forces that shape viral transmission and epidemics, ‘so as to better understand and address the role of politics in its making’ (2011: 9). Taking up Latour’s lexicon, Fraser and Seear instead argued for a new conceptualisation of hepatitis C as a ‘gathering’: as made and remade by social forces rather than distinct from them. Here, hepatitis C is best approached as a

‘thing’ in the Heideggerian sense – a gathering that exceeds any notion of simple fact or object […] Things, in this sense, are as much made, or ‘gathered’, in culture and action as they are given prior to culture and action. (Fraser and Seear, 2011: 9)

In line with this approach, Fraser and Seear suggested that diseases such as hepatitis C are best approached not as self-evident objects waiting to be discovered (see Duffin, 2005) and then cured or eliminated, but as ‘emergent phenomena, constantly being made and remade by social forces’ (Fraser and Seear, 2011: 5). As they argued,

conventions and values and social practices such as health policy and stigma make the disease as much as microbes do. Disease is a gathering, a matter of concern that far exceeds the ‘facts’ by which it can be described. It is made in many moments and in many ways, and as such is the responsibility – and the ‘fault’ – of many individuals, groups and forces, not just of those who have it. (11)

Diseases are thus not simply material phenomena that pre-exist society but are constituted and reconstituted by social and political forces. In recent work, Farrugia and colleagues (2022) have revisited the notion of hepatitis C as a ‘gathering’ to explore people’s accounts of hepatitis C cure. They argue that:

approaching cure as a gathering denaturalises it, thereby challenging the view that it is a simple biomedical state bestowed by science and medicine alone […] cure is not only achieved through a sustained virological response [ - which is the technical definition of cure] but through broader social and material forces and changes. (836)

They make this argument by analysing three quite different accounts of cure, arguing that:

‘Cure’, and its actualisation or impediment, can be understood as dispersed and shared, articulated through a diverse set of actors such as housing stability, flexible distribution practices, friendship, and stigma and secrecy. (Farrugia et al., 2022: 839)

In making this argument, Farrugia et al. (2022) touch briefly on the importance of law in the production of cure, noting that legal arrangements have implications for people’s ability to achieve cure, and for the extent to which post-cure lives are ‘transformed’, as we are invited to imagine they will be.

The law plays an especially important role in the hepatitis C ‘gathering’, but few studies have explored how law shapes it, especially after the emergence of DAAs (see Seear et al., 2021). We argue that it is important to carefully attend to this role. The law is different from other institutions in key respects, and is a ‘highly distinctive’ (Latour 2013: 54) world that mobilises ‘its own [system of] explanation’ (Latour, 2013: 359; see also Latour, 2009, McGee, 2015, 2014). As Latour has argued in his work on law, the:

law has its own separate place; it is recognized as a domain that can be isolated from the rest; it has its own force, as everyone would agree; and above all […] it has its own mode of veridiction [establishing its own version of the truth], certainly different from that of science, but universally acknowledged as capable of distinguishing truth from falsity in its own way. (Latour, 2013: 358–359; original emphasis)

The particular minutiae of different areas of law, including different legislative tests and criteria, legal objectives, processes, and rules are all implicated in legal modes of veridiction. Across different areas of law, different ‘truths’ can be constituted, including in multiple and sometimes divergent ways (Seear and Fraser, 2014). As well as constituting ‘truths’, the law frequently constitutes the very objects and subjects it sets out to regulate, as other STS legal scholars have argued (e.g Cloatre and Cowan 2019). In turn, viruses and epidemics also constitute the law (e.g. Murphy 2018). In this paper, we take up and build on these ideas and argue that the law shapes hepatitis C, cure and post-cure ‘gatherings’. We also argue, following Latour, that the law constitutes hepatitis C in its own way, potentially distinct from medicine, and that this has important implications that have been overlooked until now. Towards the end of the paper, we tease out some of these implications through reference to Annemarie Mol’s recent work on eating (2021). In that work, Mol argues that empirical analyses of eating offer useful insights for theorising being, knowing, doing, and relating. For instance, eating disrupts binaries and boundaries, including ‘inside’ and ‘outside’. This is because through the process of eating we incorporate our surroundings into our bodies, transforming matter into energy in ways that are enabling. She argues, ‘as I am I simultaneously transform’ (2021: 41; original emphasis). This is a form of being that is ‘externally entangled and internally differentiated’ (2021: 40). ‘Excorporation’ is also important here, Mol argues, as ‘the body that is overflows into her surroundings’ (2021: 43). As sewage, into wastewater or soil, it is consumed by bacteria, fermented by fungi, turned into gas, fuelling plants and combustion engines. Residue from fermentation processes is burnt, becomes ash, and is used to build roads. In this context, Mol wonders: is it possible to distinguish where I start or end, and everything else begins? Are these things still me? Being, she argues, is diffuse – ‘multisited’ and ‘dispersed’ (2021: 48). Later in this article, we take inspiration from this theory of being to ask what being looks like in a post-cure world. In the next section, we outline the method used for this project, before analysing our data.

Analysis

Overall, the key stakeholders we interviewed demonstrated an awareness that the lives of people are complicated post-cure. This is perhaps unsurprising given that previous research has indicated that the advent of cure has not necessarily followed a linear pathway to progress on the part of people with hepatitis C (e.g. Goodyear et al., 2021; Madden et al., 2018). However, two interrelated themes are of particular relevance to our research on stigma and discrimination against people with hepatitis C in law and policy post-cure. These are: a concern that hepatitis C echoes or lingers in people’s lives after treatment with an associated persistence of hepatitis C-related stigma; and a belief that hepatitis C and its subjects are being remade via human and non-human forces. We now consider each of these themes and their implications.

‘Echoes’ of Hepatitis C

Several participants we interviewed express concerns that hepatitis C can linger in people’s lives well after the point of biomedical cure. This happens in a range of ways, including via bureaucratic systems and legal mechanisms that register and then encode a person’s hepatitis C status in medical records. To take just one example commonly cited as an area of concern by our participants, hepatitis C is a ‘notifiable disease’ in every Australian state and territory. In practical terms, this means public health laws require practitioners to notify government departments of hepatitis C diagnoses using a prescribed form. For some viruses, certain personal information about the individual is not recorded. In Victoria, for example, a HIV notification is made to the relevant department but the name of the person who has tested positive is not passed on. This is known as a ‘de-identified notification’. In contrast, for hepatitis C, the individual must be identified by name, with the likely transmission route (e.g. ‘injecting drug use’) also recorded. This is known as an ‘identifiable notification’. As we have argued elsewhere (Seear et al., 2021), the permanent presence of this information in health records potentially complicates claims about a seamless, revolutionary, post-cure world in which hepatitis C and injecting drug use-related stigma can be left behind after curative treatment. These legal requirements were a source of unease for several of our participants. For instance, P3, who works in policy, was asked whether they could identify any ongoing challenges, in their view, for people post-cure. They replied:

I could with living with hepatitis C and how that could be branded on different medical records that travel, or a nurse may say, ‘this patient has had hepatitis’, so in all those indiscreet ways, someone’s viral identity is shared against their knowledge, which can affect care and judgement. But post-cure, maybe if it’s on medical records, maybe there is some sort of echo of that over time. It may cause the dentist to say something to someone or— so I think it could have an echo, a blocking effect with different health services or healthcare, and again I think probably on a personal level it’s about someone’s relationship with their viral identity, and them being free about the discussion or not of that. How much do they identify as being hep C positive before they were cured? I think all of those factors could play into a post-cure positioning.

Later, P3 expanded on the idea that hepatitis ‘echoes’ over time, highlighting the particular salience of hepatitis C-related stigma in post-cure contexts. For P3, stigma limits the possibility of a bright, new future, by ‘casting shade’ over the lives of those cured:

Stigma never makes the world a better place, so it is always about casting shade, and then people internalise negative judgements. So, people carry more shame than they need to about their life perhaps, or heightened anxiety if they are going to a medical practitioner and wanting to talk about treatment or not, or they will not disclose, they will compartmentalise health issues – deal with a chest infection, but not deal with liver health – because of the overlay of perceived or felt or experienced judgement.

The persistence of stigma and the possibility of discrimination for people post-cure was a major issue identified by most participants, who also noted that such stigma can take many forms.

Some participants focused on internalised stigma, which one described as characterised by ‘some of that lived experience [which] stays with people and, you know, can affect how people think about themselves’ (P23, policy). However, most participants acknowledged that stigma was not merely ‘internalised’, but generated and exacerbated by multiple forces, many of which were authorised by legal systems. For instance, one participant (P10) expressed concerns that:

the violence of the health system in this country is really deeply fuelled by discrimination and stigma, and is actually getting more acute, and it is happening in tertiary care, it’s happening in ambulance care, it’s happening at every point, it’s rampant in incarceration and it’s profound, as I said, it’s a profound form of punishment and stigmatisation. You know, the body is marked, the mind is marked by it. It’s a profound form of political violence.

This view led P10 to later observe that the persistence of drug-related stigma and discrimination meant that even with the advent of DAAs, it was ‘like taking one card off the table and still having the stack of – you know – the deck stacked against you’. Legal requirements regarding identifiable notifications and the advent of electronic health care records were seen as especially important here. As P15 noted, for instance, ‘if you’ve previously had hepatitis C, you don’t want to be signed up for like [… the government’s electronic health record system] for instance, like you know, you don’t want that following you around’. In P15’s view, the fact that someone’s hepatitis C status and past drug use was ‘marked’ in their medical records was crucial as it was capable of producing differential treatment:

So, I think we’ve had a couple of recent cases where someone was going to a pain management clinic to get assistance, and then it had come out that they had previously had hepatitis C, and then the pain management clinic wasn’t believing that they had a particular level of pain. They were sort of asserting that they were a drug user and just trying to get extra high, I guess, even if they weren’t a current drug user.

Later, P15 offered an account of other ways that hepatitis C might shape people’s post-cure legal rights and options, explaining that:

under the Discrimination Act, both state and federal insurers can lawfully discriminate against a person in the provision of insurance where there is actuarial statistical data which supports the denial of the insurance. So, if they believe that it would be – I suppose […] too costly if they were to provide the insurance cover, they can refuse to cover them. And I had a client recently who is HIV positive and their doctor also wrote they also had previously had hepatitis C and in the refusal it said, ‘because of your HIV status and past hepatitis C, we are unable to cover you’.

In such cases, hepatitis C becomes like ‘old baggage’ (P1) that continues to affect lives. Many participants also noted that such problems can be more acute for Aboriginal and Torres Strait Islander populations, people who have been in prison, or people experiencing homelessness.

Some participants also opined that stigma was instantiated through other legal realms, including through one particularly important and widely publicised criminal case. In 2019, the Victorian Supreme Court of Appeal handed down its decision in Peters v The Queen (No 2). The case concerned an anaesthetist, James Peters, who had hepatitis C. From June 2008 to November 2009, Peters stole syringes of fentanyl from his workplace, injected himself with it, and then re-used the syringes on patients to cover the loss of medication. As a result, at least 55 of his patients were infected with hepatitis C. Peters was charged with 55 counts of negligently causing serious injury, to which he pled guilty. He was sentenced to imprisonment, which was upheld on appeal. Later, when he discovered that direct-acting antivirals were available, he sought to appeal his sentence again, asking the court to reconsider whether his victims in fact had a ‘serious injury’ if the virus was now readily curable (see our more detailed analysis of the case elsewhere (Seear et al., in preparation). One of our participants, P9, reflected on the importance of this case, suggesting that it had the effect of stigmatising hepatitis C:

it seemed to me that one way to reinforce the stigma around hepatitis C would be to find, as the Court of Appeal eventually did, that hepatitis C of itself is a serious injury, and then infection with hepatitis C was a serious injury. […] That brands everyone who has contracted hepatitis C as someone who is carrying around an infection that may amount to a serious injury [… which] would lump hepatitis C in with other illnesses that are treated as being inherently grave and […] lead to the treatment of every person with the infection as being a potential source of danger.

Later, P9 remarked that:

if you want to reduce the stigma associated with the illness, then you—well, one way to do that legally is to say that infecting someone by itself does not constitute a criminal, serious injury in the same way that an assault that breaks someone’s leg does, that you regard the virus not as this terrible burden of itself, that is a serious injury in and of itself, and separately from its symptoms, and you regard it rather as something which may lead to injury, but is, one would hope people know now, much more treatable than in the past

As we have argued elsewhere (Seear et al., in preparation), the Peters case shows that the law can constitute hepatitis C ‘in its own way’ (Latour, 2013: 358–359; original emphasis), without regard to the advent of DAAs and their putative biomedical significance. Here, P9 was concerned that the version of hepatitis C produced by the court (as serious despite the advent of cure) has the potential to generate new harms by stigmatising those with hepatitis C, those cured, and those at risk, even as the law attempts to address harm by recognising the women infected with it as victims of a terrible wrong.

As these examples indicate, stakeholders recognise a range of factors that might complicate the seamless transition to an imagined, revolutionary, ‘post-cure’ life. They indicate an awareness that subjects and the virus remain entangled even after cure. This process is said to be mostly shaped by stigma, operating through other forces, such as law. So: the virus echoes through people’s lives, while stigma casts a shadow over it, often in profound ways. Stigma stays with people. It follows them around or they carry it like baggage. Here, as in Farrugia et al.’s (2022) aforementioned work, the positive post-cure life imagined at the advent of DAAs is seen to be an ‘unpredictable gathering made possible by a fragile coalescing of social and material forces’. Post-cure lives are constituted, that is, by human and non-human forces, including past experiences of stigma and discrimination, the perspectives and actions of professionals that hepatitis C–affected people come into contact with, the specifics of bureaucratic systems and laws that record details of their hepatitis C and likely route of transmission, and actuarial systems and other calculative processes that enable or constrain what might be possible post-cure. This complicated picture of post-cure life resonates with emerging findings from around the world (e.g. Goodyear et al., 2021; Madden et al., 2018; Whiteley et al., 2018; Whiteley et al., 2016), but adds important new understanding by underscoring the potential importance of both the legal apparatuses and legal structures that enable hepatitis C and its subjects to be acted upon in particular ways, even after the point of medical cure.

We might think of these forces as mere obstacles to a positive and productive new post-cure life: problems to be eradicated through education, information, awareness-raising, law reform, or other means, including psychological support for those affected. On this, we note that reforms to public health laws in Victoria have been proposed to remove references to hepatitis C that unnecessarily stigmatise people with the disease (Rooney, 2022). Without discounting the potential value of such measures, however, we next want to consider other ways these processes might be significant.

Remaking Hepatitis C

Even after cure, antibodies for the virus persist in the body. These antibodies indicate that the virus was once present and active. While antibodies may eventually decline and disappear for some individuals (European Association for the Study of the Liver, 2020), for many people they remain detectable. While antibodies might be regarded as scientifically distinct from the virus, our participants argue that legal processes do not always treat them this way. According to our participants, antibody matter matters, and can thwart the possibility of a genuinely ‘post-cure’ identity. This may have implications for people with or at risk of hepatitis C, and for the elimination agenda itself. In some instances, people raised concerns about these issues based on what might happen to workers from specific industries. These concerns were informed by both case law and legislation. In past cases, defence personnel and those working in food industries have had their workplace rights restricted on the basis of hepatitis C status (e.g. Commonwealth of Australia v The Human Rights and Equal Opportunity Commission [1998]; David Jones v “P” [1997] NSWSC 347). Under current occupational health and safety law and the associated National Code of Practice for Work-Related Exposure to Hepatitis and HIV (Blood-Borne Viruses), workers can be required to inform their employer that they have hepatitis C if it would pose a ‘danger’ to other workers or the public. Healthcare workers at risk of exposure must have baseline and follow-up testing for hepatitis C under the Australian Guidelines for the Prevention and Control of Infection in Healthcare, and those living with hepatitis C must be under a doctor’s care and regularly tested for viral loads. With these contexts in mind, P13 spoke about differential, discriminatory or stigmatising treatment arising in a range of different contexts post-cure. In P13’s view, differential treatment stemmed both from misconceptions about what hepatitis C was, as well as what antibodies mean:

Because there’s unfortunately, there’s just a perspective that antibody positivity equals infection. It’s a mistaken perspective, but you know, the boss in [the] restaurant might come to know the patient, the employee, is antibody positive and is a chef, and he could cut himself, there might be blood. Is that a concern? You know, they might get the sack or be threatened with the sack and have to deal with what I regard, I’m not sure if it’s discrimination, I guess it is to some extent, but it’s mostly about misinformation or inadequate information.

Other participants, such as P15, also spoke of the possibility of people being treated differently in employment contexts. Their view was that differential treatment might be a product of misunderstandings, speculating that:

it could be the combination of both misunderstandings regarding whether or not a person is still infectious and, even if they were, misunderstandings around how a person might pass on the virus in any event, and also assumptions of drug use.

One participant (P22) had worked closely with a young person seeking to enter a public service role covered by the aforementioned laws, and noted that confusion about antibodies had affected his life in an important way. According to P22, that young person:

did fantastically well to get cured and then [was] told ‘no’, couldn’t [take up the job], because he was still infectious because he had antibodies. And that was the doctor not understanding what the result meant.

Others pointed to a general lack of knowledge about what antibodies are and can do as an issue, even among health professionals. P21 said that:

we’ve definitely heard from people that they’ve been told by a new doctor that they’re hep C–positive still and then when you look at the results, they’re not, they’re antibody positive, and so, it’s that—yeah, they’ve got to do this disclosure and then education and that can be pretty exhausting and off-putting for people.

This theme emerged across several of our interviews: concerns about ‘a lack of understanding’ (P30) regarding antibody tests and instances where health care professionals, including paramedics, might treat people differently on the basis of antibody status (P28). These misunderstandings can arise for many reasons, but arguably can only be made to matter by legal processes and practices that require testing and disclosure. ² In all of these accounts, certain problematic ideas and practices could be said to be giving new life to hepatitis C, reshaping and transforming it, sustaining and maintaining it, producing it anew. These accounts problematise the neat, simplistic binary of ‘infected’ and ‘cured’ subjects (see also Fraser and Treloar, 2006) presumed to be established by DAAs. Here, a history of hepatitis C does not simply continue to cast a ‘shadow’ over people’s lives; people are actually regarded as continuing to have it despite medical cure of the virus.

The confusion about antibodies described above can also be found in a curious passage in the aforementioned Peters case. Summarising submissions and findings from the first hearing, at which Peters pled guilty, the Supreme Court of Appeal explained that:

The judge did not make findings as to the effects of the hepatitis C virus. However, the Crown [prosecutor] opening on the plea (which was not contested) stated: Research has shown that if 100 people are infected with Hepatitis C, about 25 of those will clear the virus completely within two to six months of infection but will continue to have Hepatitis C antibodies in their blood and are thus at risk of transmitting the disease […] The major factor with Hepatitis C is that the natural history is described over 40 years. Of those infected after 40 years 20% of those chronically infected will have cirrhosis, half of whom will develop cancer. This is a ticking time bomb and it will tick until 2050. [para 13; our emphasis]

Current medical consensus is that no risk of transmission exists for those with antibodies only (Dore, Kaldor and McCaughan, 1997). This submission by the Crown was evidently, however, accepted as fact. We might think of the statement in Peters as a simple error. Indeed, in all but one of the accounts of antibodies above, our participants describe ways of dealing with infectiousness and antibodies as an epistemological problem – a mere ‘misconception’ or ‘misunderstanding’, which we might imagine could be easily rectified through education or advocacy. However, viewing things this way overlooks the importance of legal modes of veridiction, in which the law establishes its own versions of ‘truth’ and ‘fact’. In the Peters case, this appears to have happened by virtue of the prosecution providing a summary of how antibodies and risk works that we are told was ‘not contested’ by the defence. When parties do not contest (i.e. where they accept) certain matters in legal proceedings, the court will typically treat these uncontested matters as ‘facts’; this is an important feature of the way law deals with things in ‘its own way’, as Latour puts it, and concretises ideas about the virus (see also Seear and Fraser, 2016).

Moreover, other participants in our interviews encourage us to think of these approaches as more than an epistemological problem. For example, speaking about eligibility for insurance cover, P13 believed that:

…for better or for worse [post-cure] they remain antibody positive and that, you know, that’s just got that whole concern in the insurance industry, for instance […] it’s not an uncommon circumstance for somebody to apply for life insurance or income protection insurance and is even known or bound to be antibody positive but for instance, let’s say, cured or […] cleared […] and for that [to] lead to either a refusal or a heavy premium. It’s based on the misconception or there’s a large misconception that antibody positivity equals chronic infection and chronic infection equals cirrhosis and liver failure sort of thing.

Here, P13 raises the possibility that some actors treat antibodies as hepatitis C for the purposes of legal and actuarial assessments. If insurance companies’ approaches to hepatitis C are indeed informed by existing statistical data (as P15 also noted in the previous section) and actuarial assessments of risk, this suggests that approaches to the disease are shaped by a multitude of forces. This in turn raises the possibility that, at least in this one area of law, antibodies are constituted as indistinguishable from injecting drug use or as a proxy for related health problems, such as hepatitis C, liver disease and overdose risk (see also Fraser and valentine, 2008). It may also be that antibodies are constituted as indistinguishable from other factors and forces sometimes entangled or conflated with hepatitis C, including HIV, sexual practices, hygienic practices and dirt (Rhodes and Treloar 2008). In other words, our participants’ accounts suggest that antibodies become synonymous with having the virus and disease. There is little information publicly available about these processes and a lack of transparency about how these assessments are made. If such assessments do occur, as the stakeholders we interviewed claim, it might be for any number of reasons including because of a misunderstanding, but also because of risk-based assessments or predictions about the possibility of future ill-health, including liver disease, or the apparent risk of re-infection due to injecting drug use. It is also possible, of course, that our participants’ accounts are partial or incomplete. The key point is that our participants’ accounts suggest a possible remaking of hepatitis C in a post-cure context. It is a ‘gathering’ but one in which the absence of ‘the virus’ is of little importance. Hepatitis C gathers anew in these accounts, in ways that exceed biomedical requirements or definitions, held together and stabilised by legal apparatuses and more. In this context, hepatitis C does not simply go away after treatment. It is revitalised, made to matter, and thereby persists. Even if hepatitis C is not detected, it is still required to be disclosed in insurance applications (Daley, Paskin and Pallone, 2020). Our participants’ concerns highlight the potentially limited nature of what can be eliminated in the context of such forces, suggesting that we must attend to all the forces that gather and produce the gathering, if hepatitis C is to be eliminated in ways that will matter for those affected.

According to some participants, all of this has potentially major implications for people who have been treated for hepatitis C, as well as those who might be contemplating treatment. Speaking about medical records that retain information about hepatitis C status and drug use history, for example, P7 thought that:

in modern society our individual identity is defined by our data. We are not talking about personal characteristics. We are not talking about racial background. We are not talking about temperaments or whatever. We are actually talking about data. Identity and data have become inseparable, so when people are subject to their medical history being illegally accessed, it’s their identity that is being breached. (our emphasis)

This account, which equates ‘identity’ and data with subjecthood, conjures Mol’s model of being as one in which the subject is ‘neither fully here nor completely there’ but ‘here and there, multisited, dispersed’ (2021: 48). ³ For P7, our data, situated in electronic databases, to some extent is us. When we gather together P7’s account of identity as data alongside earlier accounts in which hepatitis C status is permanently registered in medical records and used in ways that instantiate people as always already hepatitis C subjects, we see numerous perceived challenges in aspiring to a world after hepatitis C. Our participants are concerned that subjects risk being forever positioned through the law and legal processes as hepatitis C positive, or ‘injecting drug users’, despite the occurrence of sustained virological response (the technical definition of medical cure). Some other participants raised similar concerns, focussing once again on how antibodies might matter. As P12 described it:

I’ve seen people that sort of, like, go ‘I no longer have hep C, I want nothing ever to do with hep C ever again’ and other people that sort of, like, say, ‘well this is still part of me even though my treatment has been successful or I have been cured, like, that’s still a part of me that still, you know – I still might be seen as somebody who used drugs in the past, I still might still be seen as a drug user, so even though I no longer have hep C, it’s still my experience.’ And even that, sort of, like, people look at it differently, because even if your treatment [is] successful, if you go to the doctors and have a screen for hep C and they do an antibody test, it will still be there, so like it is still there.

Here, P12 seems concerned that antibodies function as a kind of incriminating evidence of past hepatitis C status and/or injecting drug use. This is again a product of legal veridiction. Nevertheless, accounts of key stakeholders and analysis of legal materials suggest that a multitude of forces, including legal processes, complicate simplistic imaginaries of the transformative power of cure, and of an ontologically singular ‘post-cure’ world. Instead, our participants believe that new ways of being for hepatitis C and for people affected by it are being generated. This includes the making of legal subjects who are simultaneously (medically) ‘cured’ and (legally) ‘marked’ as perpetual hepatitis C subjects. Of course, in some cases this legal ‘marking’ is shaped by the medical ‘marks’ hepatitis C leaves on bodies, whether these marks be in the form of antibodies or other health effects such as liver damage. These processes pose challenges for the vision of a transformative ‘post-cure’ world, complicating the temporal logic of evolution and progress that underpins dominant discourses regarding scientific solutions to issues steeped in stigma (Fraser and Seear, 2011) and more specifically the national elimination agenda. These findings suggest a need to grapple with these concerns and issues alongside biomedical cure if change is to be achieved.