Being asymptomatic.

Participants reported a range of post HCV-diagnosis and pre-treatment experiences and emotional responses, including being ‘shocked’ (male, group 4, 33 years); ‘scared’ (male, group 2, 38 years); ‘nervous and upset’ (male, group 1, 49 years) and ‘I thought I was going to die’ (female, group 1, 50 years). Following diagnosis, most people acknowledged that being ‘asymptomatic’ (male, group 2, 50 years) made them disinclined to monitor their infection post-diagnosis and/or to seek treatment. Participants said that they ‘often forgot they had HCV’ (female, group 3, 42 years) due to the lack of obvious symptoms. Participants also reported their limited understandings of the impact of HCV on liver health and explained that this information was not provided at diagnosis or other moments in their care. No, it was just ‘really oh hep C, is that something to do with hepatitis?’ So, a lot of naivety and not really understanding the potential consequences and how it could affect you in later life. So, this was back in 1991, we’re now in 2016. I never really did anything about it I never worried about it. I never seem to have any symptoms that I’m aware of. (female, group 3, 58 years)

Finding the ‘right time’ for DAA treatment.

Participants spoke about ‘deferring treatment’ for a long time for numerous reasons including ‘not being sick’ (male, group 3, 34 years), ‘having other responsibilities and lifestyle issues to manage’ (female, group 1, 50 years), and ‘being pregnant’ (female, group 2, 41 years). Others spoke about having constantly postponed treatment, waiting for the ‘perfect moment’ when everything would ‘align’ to maximise the likelihood of a good treatment outcome (male, group 2, 50 years). Sometimes participants spoke about there being ‘no point’ (female, group 3, 42 years) to commencing HCV treatment while they were still injecting drugs as they were afraid of the risk of reinfection and the possibility of being denied access to future treatment.

Deciding when to have treatment was also influenced by provider- and system-level factors. Participants stated that they had often been advised by health providers ‘to wait for the new treatments’ (male, group 4, 33 years) or that they were ‘waiting for the new treatments to be available and affordable’ (male, group 4, 53 years). Others were confused about their eligibility for treatment while currently injecting, often due to the negative attitudes of health professionals.

I think some of the doctors think, ‘you know I’m prepared to prescribe it for the odd client who’s known to me, but I don’t want those people in my waiting room. I certainly don’t want to open myself up to those people’ and so even though you know … it was no longer technically a barrier to treatment, there was so many specialists who just would not … who just simply didn’t think that current users were appropriate cases for treatment, or eligible. (female, group 1, 64 years)

Poor vein health.

Poor vein health was also identified as a key barrier to DAA treatment and this issue represented a significant cross-over between individual- and provider-level barriers. Veins can be damaged after years of injecting drug use and efforts by inexperienced or poorly trained staff to access blood can lead to further damage, pain and frustration and make future blood testing more difficult. In this study, some participants required several appointments so that sufficient blood could be drawn for testing.

The big barrier for me is no one can get blood out of me, I’ve just got no veins and I mean this has been a problem for the last 10 or so years and … it’s just impossible for me to give blood and I guess that’s what partly sort of sharpened my perception of just how under-rated and under-valued the whole issue of testing has been within the new treatment discussions. It really hasn’t been identified as a key component of treatment. I mean we are talking about a community of people with veins that have been used often for many, many years so they’re going to be compromised at best and damaged in many cases and just that there’s no alternative. Like it’s not that there is even one specialist clinic where it’s known there are really clever phlebotomists on site… (female, group 1, 64 years)

Sometimes, the problem of blood testing led to a renegotiation of expertise between clinicians and participants, as some participants were better at accessing their own blood than their doctors and health workers. Phlebotomists reportedly had tried to access groin arterial blood, which was described by one participant as ‘very painful’ (male, group 3, 34 years), requiring this participant to take control of the situation because he was able to access blood from his wrist. Another participant said that he would not let health professionals near his ‘good vein’ (male, group 4, 56 years) but instead preferred to endure pain from blood draws during DAA treatment (even preferring them to take blood from his neck) to protect his healthy vein. Participants reported that in these situations it was less painful and quicker for them to draw their own blood than to have health workers attempt the procedure.

… a lot of them are incompetent and they just jab away and wreck my veins, so it’s just quicker too and less painful if I can do it and then they get relieved and I’m relieved and everybody’s relieved and they’ve got their blood. (female, group 3, 42 years)

In addition to expanding opportunities for people who inject drugs to be able to draw their own venous samples, some participants were aware of testing protocols such as reflex testing whereby two blood draws are taken at one time [18] and new technologies such as point of care RNA and finger-prick capillary blood testing [19] as potential strategies to minimise the need for multiple blood draws and/or significantly reduce the need for traditional venipuncture among people with compromised veins. For some participants however, there was still concern about how these new technologies would operate in the real world.

… I’ve read about perhaps dry blood spot PCR’s in the future however, you know there’s still going to be other stuff that needs to be done. I don’t think it’s going to be as easy as, ‘oh we’re 12 months down the track, now we can just do a PCR’. (female, group 1, 50 years)

Gaps in continuity of care.

When participants were ready to undertake treatment, finding a health professional to prescribe treatment was sometimes not straightforward, despite a policy of universal access to DAA treatments in Australia. Specifically, two participants talked about their general practitioner (GP) or opioid substitution treatment (OST) prescriber initially refusing to initiate their DAA treatment regimen on the basis that they didn’t see HCV as their core business, and they thought patients should access HCV treatment through a specialist service. One participant was able to convince her OST prescriber to provide DAA treatment after initial refusal. This is a resolution for this instance, but also suggested that other people with HCV who may not have such resources or resilience may have accepted the initial decision.

… because she’s a methadone doctor I figured she’d be all over it, but that was prior to the GP’s being allowed to do it and then the GP’s were allowed to do it and so I hit my doctor up right away and honestly didn’t expect her to go, ‘no I’m not going to do it’. Fucking drove me nuts. I got furious at her. (female, group 3, 42 years)

The difficulties participants had in accessing and undergoing interferon-based HCV treatment provided in tertiary services, contributed significantly to people’s lack of engagement with their infection and to a perceived reluctance of health services to provide follow-up care. Those who did engage in regular monitoring said they mainly did so to ‘stay in contact’ (female, group 3, 58 years) and to be ‘on the spot’ (male, group 4, 53) when DAA treatments became available. While a few participants spoke about their GP or OST prescriber regularly ‘checking in’ with them following their initial diagnosis (male, group 3, 32 years), most participants reported few significant conversations with health providers about accessing regular monitoring and/or accessing treatment. In these cases, participants described the post-diagnosis waiting period as frustrating, adding that they did not feel like their health providers were taking their HCV infection seriously.

I wasn’t offered any support at all. It was just ‘this is what you’ve been diagnosed with, we can give you treatment now, but it won’t be the best for you, just wait, there’s new treatment coming, we can’t tell you exactly when its coming, but it will be much better and more beneficial for you.’ (male, group 4, 33 years)

I just remember being told ‘you’ve got hep C’ and it was just like ‘oh yeah whatever’. It was like ‘you’ve got a cold’ or ‘you’ve got the flu’ that’s it. (female, group 3, 58 years)

Managing multiple health and social priorities.

For some participants, particularly those on opioid pharmacotherapies and/or those managing ongoing dependent drug use, barriers to accessing HCV treatment were complex and related to multiple linked or layered issues and services that were not equipped to operate in a coordinated or integrated fashion. For example, participants spoke about the difficulty of getting ancillary support such as help with transport or childcare services that would allow them to attend HCV treatment services, and they emphasized the frustration they experienced in their attempts to co-ordinate their care. One participant explained how living with multiple chronic conditions impeded access to HCV treatment when key support services failed to respond to the broader circumstances in people’s lives. The experience of this participant was also bound up with a concern about how she would be perceived by health providers when her presentation was influenced by a range of medications.

For example, last year when I had my family service worker, that’s the reason I didn’t get the treatment done, because I was like being sick from my methadone, so I couldn’t travel so far unless I really took a lot of medications and I didn’t want to get up to the hospital like that…. They might have refused to dose me or something and so I needed to get there and they wouldn’t do it. They refused to do it … their job was to get me to appointments, because I had panic attacks around a lot of people, in queues, what does my psychologist call it, ‘social anxiety’ and so I did need help and so I got the scans and everything done ready to go start my treatment and no one would bring me. I was sick as hell and so three times I rescheduled the appointment and I thought, ‘oh my god, this is just hopeless’ and so unless I could find someone who is going to help me and get me to where I’ve got to go, there’s no point, so just wait. And so I thought, I’m going to find a GP in the northern suburbs that I can get to and not rely on anybody else. (female, group 2, 41 years)

Finding supportive and non-judgmental care.

Participants discussed their experiences of stigma and discrimination in health care settings. Examples included emergency doctors telling participants they ‘were sick of dealing with you junkies’ (male, group 3, 34 years) and pharmacists making participants wait for lengthy periods before being served, speaking to them in a poor manner and generally not observing common courtesies to customers with injecting histories. Often, discussion of stigma centred around participants’ sense that clinicians viewed them as inappropriate clients to be receiving DAA treatment, which resulted in the internalization of these messages.

I still hide it, no matter what… I just won’t do it…um, and yeah that’s from fear of judgment I’d say but I don’t think it would have really mattered. It’s more from me… it’s the stigma within as much as the stigma without. (male, group 4, 56 years)

There was a level of suspicion among some participants about the health system, the confidentiality of clients’ health records, and the level of surveillance that may occur when a client accesses treatment. Similarly, participants reported their perception that clinicians generally view people who inject drugs as not caring about their health and that reinfection is a likely outcome of HCV treatment, making DAA therapy an expensive ‘waste of time’ (male, group 3, 34 years) for this population. One participant commented that poor attitudes toward people who inject drugs are reflected in the low number of GPs that have ‘embraced’ (female, group 1, 64 years) the opportunity to prescribe DAAs. To overcome systems-level and social barriers to DAA treatment, participants explained that people who inject drugs need information about where they can access services and support to have DAA therapy without experiencing stigma and discrimination.

Participants also reported that there is still a high level of concern and ignorance in the general community about HCV and how it is transmitted, which they believed underpinned a lot of the stigma they encountered. Clients’ families were often described as misunderstanding HCV, injecting and drug dependence, believing affected people were ‘weak’ and had no ‘willpower’ to address their health conditions: ‘if you were strong enough you could do it’ (female, group 2, 41 years). Similarly, participants stated that media depictions of HCV reduced the likelihood of affected people disclosing their infection, which in some families had led to needless and damaging suspicion.

My mum treats me like I’ve got AIDS … like the other day, she bought a juice and I wanted to have a taste of it, she said, “no because I might catch your Hep C” … She’s so paranoid. (female, group 2, 54 years)

I still don’t tell anyone, I don’t disclose, never disclose. Even at the dentist I leave it blank. … Discrimination. Not for me, for my kids. You know it’s for them, I don’t want them being judged because of my mistakes. (female, group 2, 41 years)