The first part of this section addresses common themes between all four countries enabling a clear insight into shared obstacles around Hepatitis C treatment and linkage to care. Following on from this, site-specific themes are then discussed to underpin the importance of implementing tailored interventions to meet community demands within all four countries.
Common themes
Hepatitis C patients lost to follow up
While reasons for patients lost to follow up was not homogenous between the sites, there were similar threads as to why patients were not linked to care. In this section participants share their perceptions, by firstly indicating that stigma remains a barrier, particularly with PWIDs, for accessing treatment. Patients with a history of drug injection, feel stigmatised when they are judged for their past and are solely labelled as drug users [21]. Patients also identified concerns about treatment, difficulty accessing appointments and competing priorities as additional barriers to treatment. Interviews highlighted different underlying components between sites, reiterating the need for site-specific tailored interventions. In Ireland, patient mobility was often pressurized by homelessness, the cycle of addiction and disadvantaged backgrounds. Many patients referred to traumatic family events as a catalyst for returning to a cycle of drug abuse resulting in their reluctancy to access care:
“And that brought back memories because I lost me ma and da and me other brother. Me brother was found above Christchurch OD’ed as well, you know, so it just brought back memories, and I drifted back down, and I start taking crack as I was selling gear, and then I start selling crack at night, only getting half an hours sleep for months, and I got caught up with all the shit and I got locked up you know. This [prison] saved me if I’m being honest. So now, now my mind is set not to go back there.”
“yeah, they asked me about it [treatment] once or twice but I was, to be honest with you doctor, my life was chaotic, I couldn’t manage it, do you know what I mean?”
In Romania, most patients were ineligible for treatment at the time of diagnosis, noting that they were not advanced enough to be referred for treatment and were advised to come back when their HCV condition had worsened:
“Even if I asked for it [treatment] each time I had the occasion, I never received it. I insisted on receiving the treatment when I heard about DAA treatment for the first time … I really wanted to cure my HCV and I came to the hospital more times to talk to my doctor about it. But she explained me that she can’t help me because unfortunately the treatment wasn’t available for everyone in Romania. Only patients with advanced liver fibrosis could benefit of it.”
In the UK, patients were diagnosed and informed of the need for treatment but are not assisted in obtaining specialist referrals or further appointments. With competing priorities and complex lifestyles, patient noted the need for assistance in being linked to care:
“They just told me I had it and had to go to the doctor's and I never chased that up do you know what I mean?”
Similarly, in Spain many patients were not offered treatment following their diagnosis, with some forgetting their diagnosis until the HepCare program retested them and linked them to care:
“Somebody told me the virus was sleeping so I forgot until you came to our centre.”
HepCare improved access to treatment
HepCare Europe used a variety of interventions across the four sites to ensure access to HCV testing and retention in HCV care. In Ireland, providing access to treatment in the prison system was key to engaging and retaining patients in treatment. The patients identified prison as not only an acceptable setting, but also as an ideal setting in which to receive treatment, as the structure of life in prison provides stability, helps with adherence to treatment and is associated with improved physical and mental health:
“It’s just, you’re on top of it in here [prison], where outside your doing other things, you mightn’t have time to go to hospital, do you know what I mean?.... I know that seems silly but that’s the way it is when you’re on drugs and all, do you know what I mean?... You haven’t time to be going to the hospital.”
“[about receiving treatment in the prison] yeah, because when you are outside like, you know, people have things to get down on, especially if you are taking drugs then you kinda forget what you’re doing, so being in here and getting in here, it’s a lot better because sort of follow a, you’re not going around taking drugs and the next day forgetting to take your medications.”
Patients in Romania asserted personal responsibility for their HCV treatment, with many stating that they were motivated and wanted treatment. They noted that the HepCare Europe programme helped them to access treatment far faster than they would have, if left to secure it themselves. Patients noted that HepCare removed some of the barriers to treatment, such as securing appointments with specialists and helped them remember appointments:
“But for the Project [HepCare], the treatment would have been delayed for sure. Probably I should have waited a few more years till somebody would have thought about me, would have remembered that I am also HCV positive and would have initiated treatment.”
“Due to enrolment in HepCare Project I could benefit of these investigations and finally initiated the treatment. Without this program, probably I would have got treatment but much later, at an advanced liver disease stage and with a higher risk of complications.”
In the UK, HepCare vouchers were an important incentive for engaging patients and keeping them linked to care. Many patients mentioned that the vouchers for bus fares and for meals were particularly helpful in improving attendance and keeping patients involved in the treatment process:
“You know what made me go in that van? You wanna know the truth … because I was getting a bag of crisps and a bar of chocolate free … They saved my life. All for a bar of chocolate and crisps.”
Nine out of ten patients in Spain felt that HepCare made accessing treatment easier through testing and making patients aware of their infection, improving access to services and decreasing the waiting times for appointments:
“In only three months I started treatment and with the waiting lists in Spain, I’m sure I would have had to wait longer [without HepCare].”
HepCare was also crucial in helping patients stay on treatment through reminders for appointments. These interventions combined with their personal motivation were key to achieving SVR:
“It [HepCare] has been very helpful to us. They arranged the appointments and reminded me when I had to go to the specialist service.”
Need improved HCV education
Underlying the main themes, was the steady mention of both misinformation and outdated information on HCV effects, treatment and transmission; all of which contribute to stigma (judgement) when being treated for HCV, transmission and fear. Patients identified a widespread need for education, identifying that they themselves, the public and healthcare providers would benefit:
“That’s the whole reason why I’m doing the interview- to help some other people. ‘Hey, this isn’t as bad as what people make it out to be’ and encourage them to change their life around, just need the right tools.”
In Ireland, the prisoners discussed stigma towards those who have HCV and those with a history of injected drug use who need treatment, as a result of a lack of education:
“It’s [stigma] just like, I suppose, ‘don’t be around him’, ‘you’d catch something off him’, you know. ‘He’s dirty’, you know, that kind of way.”
“There should be more education in the prisons about it [HCV], for people who don’t need it, you know what I mean; because there is a stigma to it, you know what I mean. There’s a stigma to someone on gear, but there is a bigger stigma to someone on gear that used needles.”
Additionally, patients still associate the dangers and difficulties of interferon treatment and liver biopsies with HCV treatment, despite the arrival of new, less invasive DAA therapies:
“So, she died of hepatitis, doctor. She went in to get her spleen, she got her spleen took out, and she was drinking at this point, and they told her that the way her liver has gone so far now, you have 6 months to live, we give you 6 months... And they says if you do this treatment, if must have been the interferon— It reacted wrong on her body. The next day after taking it she swelled out. She died within two or three days; you know. so that was always in my mind, you know.”
In some instances, patients were not aware that there was any treatment available for HCV at all:
“Like I said, mate I didn’t know there was like this treatment until I was in … . … . In rehab. Before that I didn’t know you could get treatment to get rid of it.”
“At the hospital they confirmed me that I am HCV positive and gave me treatment for HIV. Only recently when I was enrolled in HepCare program I was told about HCV treatment.”
In Romania, many people had been previously told or were aware of the strict treatment criteria, which required advanced disease in order to receive treatment. HepCare made patients aware that the eligibility requirements for treatment had changed allowing them to avail of treatment and linking them to care.
When receiving treatment, patients who are part of the HepCare Europe programme are educated on HCV and transmission risks to allow them to feel engaged in their treatment process and to take better precautions going forward. Despite this, the interviews indicated that there are some areas that need extra attention, such as providing a service that accommodates various literacy levels. Patients in the UK highlighted the need for staff to slow down and take more time with patients to help them understand HCV risk factors and effects:
“Simplifying terms because a lot of people there can't read and write. So will you show the diagrams cos they weren't, for example, because they see the diagrams right here right now of the liver is already and everything the red level of whatever love of blah, blah, blah is proper healthy, this one yeah. Cos I might not be able to read the, the bullet points on the left-hand side. ‘that grey area that is scarring’ and that, next picture and all that grey it is cirrhosis, sort of explain it like that.”
There was also confusion about the risk of reinfection:
“We can’t get it [HCV] though. If we get reinfected, we can’t get it [HCV] again.”
From this, patients suggest the need for HCV education along the entire cascade of care to offer correct knowledge about HCV and the risks of re-infection.
Site specific findings
IRELAND: achieving SVR is associated with new opportunities
Once they achieved SVR, patients expressed resolve and motivation to stay drug-free and to not place themselves at risk of reinfection. While Ireland was not the only site that alluded to this, it was far more pronounced in Ireland, potentially because achieving SVR was discussed in light of leaving incarceration. Patients expressed positivity and excitement for new opportunities on release, with many patients securing future plans:
“When I’m going to leave the prison now, when I do that, when I done that course of tablets, it was like getting the second chance in life to me, you know what I mean. So, when I am leaving prison now, I am going to a place called [Drug treatment service] for two years. I’m going there when I leave prison, and then I am going over to Norway. When I complete [Drug treatment service] I can volunteer in another [Drug treatment service] in Norway, so that’s my plan, doctor. You know what I mean.”
ROMANIA: HCV is comparatively less important in light of HIV Coinfections
With 8 out of 10 interviewees coinfected with HIV, an HIV diagnosis was often the stimulus for attending hospital and taking medication regularly. For many previously diagnosed with HCV, no further action to address their HCV infection was taken until after an HIV diagnosis, which was attributed both to unavailability of HCV treatment and a lack of HCV symptoms resulting in a lack of urgency:
“I was, but I didn’t care too much about it … I didn’t attend the medical appointments till 2012 I guess, when I was diagnosed with HIV.”
UK: patients require support to conquer personal and social barriers
Many patients expressed a desire for treatment and a need for support in addressing HCV and associated problems in their lives that stop them from accessing treatment. Patients want support in getting off of methadone treatment, with many noting that “you are not fully clean” until you get off of OST. Patients admitted to missing appointments, being impatient at times and having difficulty focusing on directions and remembering instructions yet asked that the staff not give up on them and help them work through these issues:
“Yeah, I missed 3 appointments and it was my own fault for that so I missed 3 appointments with her Jenny, that was her name, it was just the welfare, so she said that she can't give me another appointment. But I really need her to give me another appointment [long pause] because when you get stuck in a rut, you get stuck in a rut.”
“don't give up on people, and that's the main thing.”
SPAIN: increased awareness of HCV, treatment and alcohol use
Patients identified that they were happy to have increased awareness of HCV treatment and transmission methods, as well as a better understanding of the effects of alcohol use. While patients may have been previously diagnosed, many did not understand that they were still infected, and were happy to be retested and then treated:
“The program has made me aware of the two problems I had in my life: hepatitis c and alcohol.”
Summary of quotes
Categorical Areas
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Examples of Quotes
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HCV stigma
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“I am very happy I am cured. My family can be proud of me now … I can give them a new life, the life they desired. My son won’t know that his father was HCV positive. We can do different activities together when he will grow up. I can hardly wait to play football with him, and I also hope that he will enjoy jogging. My wife won’t be afraid that she will get the virus from me. I can live a normal life from now on.” (RO)
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Barrier to treatment
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“What did piss me off about that first doctor when I went to xx, because that could put a lot of people off a lot worse than me. And yet I honestly feel he was trying to sort of arse poke me, getting a reaction it was getting worse. Whereas I think he said, “don’t give him an appointment before November”, or something along them lines. Em I don’t know. Someone else wouldn’t have gone back. What was it he said? Someone else. I think his exact words were “well we’re not going to treat people who, I forget the exact words, that’s still using or. Yea I said you’re not going to get anyone turning up for treatment. And I got the impression he thought “good” … So, yea I really got the impression he didn’t want to. And I had to change my whole life before he’d even consider treating me.” -UK4
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Competing priorities
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“Because if I was outside, I don’t know if I would be able to, to have the discipline to take new medication every day.” -IE33
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Access to treatment
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“The fact that you got vouchers believe it or not, was one of the reasons, sad as it is., when you first turned up. From then on it gives you a bit more motivation to sort your life out a bit.” -UK4
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Treatment experience
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“Brilliant, yeah, very positive. Because if I was outside, I don’t know if I would be able to, to have the discipline to take new medication every day. And especially in Pats, the medics over there and the nurses over there are great and everything, you know what I mean. They are brilliant, they are very good.” -IE33
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Awareness
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“didn’t know, I had no, I had no … they say knowledge is power. I didn’t know. If I had known that you could caught it like that, then I wouldn’t have”-IE36
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Lack of agency
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“At first I didn’t know about the infection. Before 2013 I had no sign or symptom of diseases, so I didn’t know I need it. Then, since 2013, I was in active evidence at the hospital for my HIV infection and I came here regularly for treatment and investigations, but nobody told me about treatment. I think it wasn’t available till recently.” -RO10
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HCV free
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“And generally, it [treatment] has made me, it gives you like that one thing. That one thing that you’re trying to change your life a bit. So even just that one thing. By sorting that out you’re heading in the right direction and it makes you not want to catch it again for sure. Yea, there’s a lot of positives out of it.” -UK3
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