Thirty three participants were interviewed during the study, of whom six were women, one of them transgender. The average age of the sample was 38.6 years. Eighteen were of Spanish origin and 15 foreigners, 10 of whom were from Eastern European countries. 54.6% (18 people) had completed secondary education. All reported being in active use during their release stay, of whom 23 reported heroin and cocaine use ("speedball") intravenously. Regarding harm reduction programmes, 19 were undergoing opioid substitution treatment (methadone) and 24 had attended harm reduction centres (HRC) to make use of DCR and NEP in the last six months. 57.6% (19 people) were diagnosed with HCV upon entering prison. Of those interviewees who started the DAA, six abandoned it before completation. Six finished treatments, but did not attend their follow-up appointment to confirm the SVR.
The relevant topics to determine the access barriers to diagnosing and treating HCV with DAAs were related to individual, social, community and political factors. Different concepts and categories were identified overall, among which there was an interrelation, which enabled a substantive theory to be generated. The results are presented on three levels: a) personal, b) health providers and c) health system; that provide key information to understanding the access barriers to HCV diagnosis and treatment, useful information to guide the design of strategies that facilitate access for PWID.
Barriers on a personal level
Participants described different barriers on a personal level, which fell into three categories: heavy drug use, lack of interest and knowledge about HCV and social exclusion.
Heavy drug use
All the participants indicated that the main reason for not being able to comply with the HCV diagnosis and treatment process was that they were submerged in intense drug use. In general, the interviewees relate the use of intravenous drugs as a need that hinders a stability to decide to initiate or carry out HCV diagnosis and treatment.
I haven't gone anywhere while outside because the drug hasn't left me. I knew where I could go, but the drug doesn't allow me to do anything, not even call my family. (Participant 28, male, Romania)
I used a lot, so I always said "later, later" and never went. When you're using, you don't think about anything else. (Participant 16, male, Georgia)
You have the information, but we're not here to undergo the treatment, we're not responsible at that time. We just want the drugs. Not for treatment or anything. (Participant 23, male, Spain)
Many of the PWID interviewed said that drug dependence was a condition that inhibits going for HCV treatment. In this sense, they expressed spending time immersed in consumer environments, looking for money to buy drugs to mitigate daily suffering.
You're not thinking of hepatitis, what you want is to get money and score drugs (buy drugs) and take them (consume). I was more interested in a hit (injecting) and “finding where the next one would come from” (find a way to make money). (Participant 1, male, Spain).
If you are consuming "smack” (heroin), all you think about is getting rid of the "cold turkey" (withdrawal syndrome), getting money, stealing. (Participant 18, transsexual woman, Spain).
Lack of interest and knowledge about HCV
Most of the participants had a lack of knowledge about HCV infection. In general, they had partial knowledge about the infection routes and preventive methods for HCV. This fact was cited as a reason for not being interested in the serological status of infection or reinfection.
I didn't know that by sharing a bowl you could get infected, I injected myself with my syringe. I didn't know I could get it like this and I never thought about hepatitis or anything. (Participant 11, female, Spain).
I didn't know how you could get hepatitis, HIV yes. I didn't know anything about the treatment or how you get infected. (Participant 22, male, Pakistan)
In the one month I had been in Spain, I consumed and got infected. I think I got infected with the same drug or with the same syringe, I have never shared. (Participant 3, male, Italy)
In this sense, in relation to the HCV symptoms, a large number of the participants expressed that they did not feel any symptoms that signified a serious health problem or that evidenced being infected, leading them to be interested in seeking treatment.
It didn't affect me when I was diagnosed. I stayed the same, normal. I was fine. I didn't ask for the treatment. (Participant 15, male, Georgia)
For me to look at the hepatitis thing again, I would have had to feel unwell again, tired... that's what I would have needed. (Participant 14, male, Spain)
I would have been worried if I had felt very screwed up in my body, that I felt in poor health. As long as you don't feel anything, you don't worry. (Participant 1, male, Spanish)
However, many of the participants were aware of being infected with HCV, but revealed other reasons for not starting treatment with DAAs. Close to one quarter reported not knowing about DAA treatment and the benefits of this treatment, as well as only having information on treatment regimens prior to this therapy (interferon and ribavirin).
I knew nothing about the treatment, zero. They had told me about doing a biopsy, but I thought it wouldn't heal and that one day or another I would die. (Participant 27, male, Spain)
I knew of a friend who had undergone the treatment and nearly died, so I didn't want anything to do with the interferon. (Participant 26, male, Spain)
In other cases, the fact that treatment with DAAs was considered safe and effective led to not considering HCV as an urgent or serious health problem and to perpetuating the decision to follow up with a doctor in order to access treatment.
The truth is that I didn't mind having Hepatitis C because I knew that I would undergo treatment and I would lead a normal life. (Participant 23, male, Spain)
On the street I wasn't interested, I didn't see hepatitis as a threat. I felt bad when the hospital gave me the information that I had hepatitis, but it never worried me. (Participant 29, male, Slovakia)
When they gave me the diagnosis, I got very nervous, but since I have friends who have taken the pill and are fine... well, I didn't worry much either. (Participant 24, Male, Georgia).
Social exclusion
Participants described living conditions that hinder their interest in HCV diagnosis and treatment. Two thirds of the sample reported not having a home, not being able to access shelters or being in homes irregularly, a situation that they describe as incompatible with HCV monitoring.
I was living with a friend in a squat. I asked for a shelter and they told me there was a waiting list… I ended up on the street, I wasn't there for treatment. (Participant 12, male, India)
I wasn't in conditions to undergo treatment. I was living at a friend's house for a while, a lot of people lived there. I had no peace of mind. (Participant 19, female, Spain).
Sometimes I slept in a squat and had to go to my methadone centre every day to take drugs in treatment (for HCV). I needed a boarding house so that I wouldn't be left on the street, but they couldn't get one for me. (Participant 5, male, Iran)
Added to this situation, most of the participants reported not being able to be interested in their situation with HCV related to having other interests that they considered more important, such as having to attend court summonses related to criminal cases.
Very good, but I had other problems on my mind… court cases, problems with the family, etc. (Participant 32, male, Georgia)
I wanted to start treatment when I had completed the things I had to do. I had legal problems, no housing, no documents to go to the hospital... (Participant 30, male, Serbia)
Among the foreign population interviewed, more than half described being in an irregular administrative situation as a problem in accessing treatment, which included not having a health card and not having facilities to access certain health services, as well as being unaware of these and other PWID-specific resources or programmes.
I haven't been to any doctor and I don't know where to go on the street, I don't have a health card either. (Participant 24, Male, Georgia).
They had stolen all my documents and I had nothing. They couldn't give me the treatment. I never went to the doctor because I didn't have a health card. (Participant 33, female, Poland)
Five of the six women interviewed described being immersed in power relationships with their male partners as a barrier.
Some offer you a "chuta" (syringe) exchange so that you are like them and this especially happens a lot from men to women, to keep you tied, so you are stigmatised like them and it is easier for you to be their girlfriend later. They hook you to them. It also happens with HIV. (Participant 6, female, Spain)
I had been with the same person for two years... I didn't know that he had hepatitis. He hit me. I was diagnosed with hepatitis on my first injection. Later he was tested and he had hepatitis. They tricked me (Participant 33, female, Poland)
Barriers at the health provider level
Participants highlighted three issues related to health providers: receiving little information, not accessing screening and treatment and having poor interactions with health personnel.
Receiving little information
Most of the participants reported not having information or not receiving it from the personnel in the health centres they attend (mainly HRC) about HCV infection and its treatment.
They don't give you any information. They don't tell you about what it is and where you have to go. I didn't know where I had to go. (Participant 26, male, Spain).
The doctors in Georgia and Spain didn't give me any information. They didn't tell me anything about the treatment either, only in prison. (Participant 9, male, Georgia).
This fact was accentuated to a greater extent among foreign participants, especially those who had a strong language barrier.
I was going to inject myself in the (...) DCR and I talked to the nurses. Before I spoke (Spanish) badly... now normal. (Participant 4, male, Georgia).
I didn't understand Spanish. I only spoke to people from my own country. I had no information about the people in the centre (health personnel) (Participant 12, male, India).
Not accessing screening and treatment
Many of the participants reported that, despite going to HRCs or other drug dependence health services, they had not been offered HCV screening (rapid tests or blood tests) or, if applicable, they had not been proposed for follow-up to start DAA treatment.
When you go to the room (DCR) they ask you about drug use, they aren't on top of you all day either. (Participant 1, male, Spanish)
They never offered me the test. I went to consume in the consumption room, but they didn't ask me anything. (Participant 3, male, Italy)
I used to go to my health centre to do tests, but never to look at hepatitis (C). They never offered me either at the Care Center for Substance Use (CCSU) or at the health care centre. (Participant 22, male, Pakistan)
Having poor interactions with personnel
Some the interviewees perceived having poor interactions with health service personnel, having difficulties in accessing HCV screening and follow-up.
I noticed that my liver hurt and they referred me to the hepatologist. The hepatologist asked me "where are you going to pay for the burial?" It's painful to hear a hepatologist telling you that. (Participant 13, male, Spain).
Professionals should be more open people and get involved in helping. Don't always repeat the amount of money that everything costs. Sometimes they talk to you in bad ways. (Participant 6, female, Spain).
System level barriers
There were three issues related to the health system: complicated circuit, little comprehensive care, lack of community support.
Complicated circuit
Most of the participants perceive different complications in accessing hospital services, where HCV diagnosis and follow-up is carried out through the usual circuit. Many of the participants indicated that the hospital services were so far away from their home or from the health services they regularly used (HRC or CCSU) that they did not attend the scheduled appointments, especially when they were early in the morning or delayed several days.
From my CCSU, they sent me to the hospital to do tests, but it is a long way away from where I am. I never got to go. In the end I went to prison. (Participant 25, male, Romania).
They did tests on me at the hospital and they told me that I had to undergo treatment. I had to go to my CCSU every day and I lived a long way away in a squat. Many days I didn't go. (Participant 5, male, Iran)
In this sense, they also referred to the appointment times, perceiving appointment times scheduled at early hours or where there was a long time between follow-up visits as limiting.
They gave me an appointment early in the morning and I didn't go. They always rescheduled me, but my schedules always went wrong. (Participant 6, female, Spain).
They offered me an appointment to take the test at 7 in the morning. I think that to do the analysis, if it had been at a time like 12, or 11, I don't know, that would be fine for me, no problem. (Participant 14, male, Spain).
At the hospital they did a blood test and it took 45 days to give me the results. I went to prison for a few days and when I got out, I didn't know where I had to go. (Participant 15, male, Georgia).
Many of the participants expressed not knowing the health system, pointing out the complications to enter the circuit for HCV diagnosis and follow-up, especially among foreign people who don't know the health system and people who were leaving prison.
There are many documents and many appointments. I don't know how appointments work and where I have to go to the hospital. (Participant 28, male, Romania).
When you go out on the street, there are many things and you find yourself very lost. I have often gone out with many documents that I don't understand. There are many documents and it doesn't surprise me that you get lost. (Participant 1, male, Spanish).
On the street I didn't worry because I was very lost. I didn't remember the treatment and left it in a bag. I was lost for three days and ended up begging on the street. (Participant 20, male, Spain)
Little comprehensive care
Many of the participants who go to drug dependence health services (HRC and CCSU) perceive that these services are focused on providing harm reduction programmes or treatment for drug dependence and don't have HCV care.
They should offer to do the tests in the consumption rooms (DCR). There they only give you syringes; they offer you methadone, but nothing to diagnose or treat you. (Participant 21, male, Spain).
You go to the consumption room (DCR) and they only give you syringes. You can shower and have something to eat, but they don't pay attention to your real problems. (Participant 8, male, Spain).
In this sense, many of the participants who were undergoing treatment for problems related to dependence highlighted not having the different treatments for problems concomitant to drug use unified in a single service as a limitation.
What is needed is a good centre. We have consumption problems, health problems and we have nowhere to sleep. A good rehabilitation centre is needed that offers all kinds of help. (Participant 23, male, Spain).
I go to the CCSU for my treatment, but if you need social assistance or get tested for hepatitis or whatever, you have to go to other places. There is a lack of a place where they give you social assistance, drug treatment and they test you for everything. (Participant 31, female, Spain).
Lack of community support
Many of the participants mentioned not having sufficient support at the community level to undergo HCV monitoring and treatment. In this sense, they perceived that the stigmatisation from their families and relatives led to social isolation and not thinking about seeking treatment for HCV.
You need support and love. When you're lost, the family gets tired and despises you, that makes you want to get high and forget everything. (Participant 20, male, Spain).
They told me I had hepatitis. I went into depression. I received the news crying. I separated from my family because I didn't want to infect them. My sister stopped talking to me. I don't have any support. (Participant 25, male, Romania).
It is very difficult to start from scratch without anyone. You need support from people who are not using all day. (Participant 17, male, Spain).
The participants felt that there was insufficient campaigning to successfully involve people with HCV, perceiving that this health problem was not of interest to health institutions.
I believe that for people to go for tests, they must be told everything they are going to lose if they don't get treatment. You have to tell them politely, explaining it in detail and more clearly (Participant 14, male. Spain).
They need to campaign more, to involve people more in how serious hepatitis C is. I have seen many people die. More information is needed, more posters, more of everything... that gets through to you so that you want to undergo treatment. (Participant 11, female, Spain).