The Staying Safe study is a hepatitis C prevention project with a difference. Instead of focusing on risk practices and transmission events, such as the sharing of needles and syringes, we were interested in how protective practices arose and were maintained over time. Here, people who had been injecting for the long term and who did not have hepatitis C were the experts – or the ‘cases’, with those who had hepatitis C also interviewed as ‘controls’. Staying Safe is an international project, originally conceptualised by Sam Friedman in New York. Other study sites include Sydney, Melbourne, New York, Vancouver, London and now, St Petersberg. In this article we outline the London findings and their implications for practice.
Who was involved?
Our 37 participants (ten women, 27 men) were recruited through drug services and drug user networks in South East and North London. Twenty-two were hepatitis C negative, and 15 hep C antibody positive. Participants ranged from 23 to 57 years old (average age 40) and had been injecting from six to 33 years (average 20 years). Twenty-five primarily used heroin, with 12 preferring a crack and heroin mix. All were current drug users, with 33 injecting regularly and four having transitioned to heroin and/or crack smoking. All participants, except two, were also on an opiate substitution treatment (OST) programme, with the majority receiving methadone (31) and four subutex. Twenty-eight identified as white British and all were unemployed at the time of the interviews.
What did we do?
In order to understand the protective factors that helped some people avoid hepatitis C we chose a broader approach than one focused purely on injecting practices and conducted interviews where we invited participants to talk about their lives – from birth to the present date – in a way which was meaningful for them. The process included developing a life history timeline with the participant in the first interview, which was then translated into a colour computer-generated timeline – to give to the participant in the second interview. This process helped to jog people’s memories about significant events, but more importantly, allowed us to explore the interconnection between people’s protective and risk practices and what was going on in their lives at the time.
What did we find?
We identified a range of protective practices – such as not sharing needles and syringes – which was unsurprising in itself. What was interesting however, was that these protective practices were not generally related to hepatitis C or HIV avoidance, but to more immediate meaningful concerns such as looking after veins, avoiding withdrawal, having a quiet private place to inject (for concentration – finding a vein; and pleasure – being able to relax and enjoy the hit), maintaining social relationships, image management (ie presenting as a ‘non-user’ to avoid stigma and police attention), controlling quality of the drug mix and preventing dirty hits. Hepatitis C and/or HIV prevention was a concern for some but for many was not a priority. Below is a summary of the main protective practices we identified and the linked concerns. Two examples are then expanded on: vein care and withdrawal avoidance/methadone stockpiling.
Vein Care – sterile equals sharp
For people who inject regularly, veins are precious! Facilitating venous access, and minimising the pain and length of injection time, was a primary concern for participants. It was also described as one of the main reasons for using new needles. Half of the participants began injecting more than 20 years ago, before hep C was named, and at the time they also knew little about HIV, or did not see it as a relevant risk. For many, an early motivation to use new works (needle and syringes) was because they were sharp and would therefore cause less vein damage. Andy, who is HCV negative and has been injecting for over 20 years, described his past and present rationales for using new works:
‘I’m not going to use a pin [needle] more than once, once it’s punctured my skin twice that pin is dead now because it’s blunt, therefore I can’t share anyone else’s because it’s blunt already, that was one of the reasons. That was the main reason.’
Strategies identified by participants to make sure they used new works included bending their old ones so they would not be tempted to fish them out of the cinbin (fit disposal bin) and reuse them. This was Jeff’s practice and the primary motivation he identified for this was vein care:
‘If you always use fresh needles you minimise any vein damage… [I do it] to look after my veins to try and get more usage out of them.’
Leeroy, injecting for 33 years and also hep C negative, has been using new needles and syringes since a pivotal encounter with a drop-in worker three decades ago:
‘I just couldn’t [share]because once I had a needle and I dropped it and it barbed [bent], oh my God that hurt, it just ripped in to my arm. I went to a guy down the drop-in, and I told him and he says, “no mate, don’t do that, never use a used works, never”, I says, “yeah?”, he says “yeah, every time you use it man it just barbs with your skin, sometimes it can be tough” so I said, “yeah”, and I stopped.’
The advice given by the drugs worker contrasts with current harm reduction rhetoric that equates the use of used works with disease transmission and personal (ir)responsibility, rather than injecting pain and pleasure. However, it was this focus on pain/pleasure that resonated with Leeroy and had informed his practice ever since. Max also referred to the pain as a motivator for using clean works:
‘Well you could [share] but then it would probably be blunt an’ all, you know they do get blunt and then that hurts more’.
Getting a hit in smoothly and painlessly – rather than avoiding hepatitis C – featured as the prime reason for using new works. Giles, a service user rep, frames this prioritisation in these terms:
‘People would rather use clean works because they’re sharp for a start so, you know, they’re not going to be blunt. But does the message [about hep C] get through? Because hep C, you know: “yeah hep C, so what. I’m not going to drop down dead tomorrow.”’
A number of the participants had transitioned to groin injecting, however many were fearful of making this move and expressed a desire for help and advice about maintaining and finding other veins to use. Very little help was forthcoming however, with participants who had sought advice encouraged to stop injecting. This only served to increase their frustration and disengagement from services.
As Tony says: ‘They will immediately go, oh well, try smoking. And you know, they don’t get it. Fucking hell, you know, smoking!’
The lack of available non-stigmatising advice was evident at interviews, with two participants seeking unsolicited injecting advice from the interviewer. Helene pulled down her pants to show her injecting site and said: ‘Sometimes I just can’t get [the femoral vein] look, I got two fingers here, can you tell me where the best place is to go?’ and Ben said: ‘Just show me how to bang up in my groin!’
Avoiding withdrawal and maintaining social networks: methadone stockpiling
It has been well documented that the most risky injecting practices take place when people are in withdrawal or are quickly trying to avoid the onset of withdrawal (Mateu-Gelabert et al., 2010). It was no surprise, therefore to find that strategies participants used to avoid withdrawal also helped them avoid hepatitis C. The majority of the participants were on a methadone script and, for those who could, stockpiling methadone was key to protecting against withdrawal. Jeff for example, kept a supply of methadone at his home and at his father’s place to protect against unanticipated risk situations:
‘I keep a stash of methadone up there, at my dad’s… I guest dose at a pharmacy, and if something’s got fucked up and I’m late or I don’t make the pharmacy, I keep a stash up there to use … it’s there for emergencies. You know, emergencies.’
Bruce also spoke of being careful to maintain a stash of methadone for emergencies: ‘I always make sure I’ve got 50ml. I’ve always got 50ml in my flat and 50ml at [girlfriend’s] extra.’ In this way, if Bruce misses his prescriber appointment, or – as happened once – his script was unexpectedly cancelled, he has a backup.
Stockpiled methadone also operated as an important social resource, which facilitated the helping out of others in need. Ros described a situation where a fellow hostel resident, in heroin withdrawal, was sold washing up liquid as methadone by another resident. She was able to come to the rescue:
‘I had half a bottle of methadone I was able to give him… it was nice to help him out because that bit of methadone will get him out of trouble… And he was proper grateful, bless him. He was like, I’ll give you money. I went, nah. It’s alright mate.’
Ros speaks about helping her mate ‘out of trouble’. When in withdrawal, potentially risk situations can involve: accessing heroin from an unknown source (uncertain quality and strength); using others’ injecting equipment (such as filters which may contain some heroin residue) or committing crime (in order to fund heroin purchase). As Colin said: ‘My mate, he hasn’t got a methadone script so if I haven’t got any spare methadone he goes out robbing to pay for his habit.’
Like Ros, Colin endeavours to help his friend out with methadone, thus reducing his need to commit crime. In turn his friend will reciprocate with a hit of heroin from time to time. These reciprocal relationships have protected Colin from potential risk situations. Colin spoke about the time he missed his methadone weekly pick-up date and wasn’t allowed to pick up until the next week. This could have been disastrous, but as Colin said: ‘Fortunately I’ve got friends that have got methadone and they helped me out.’
Colin was potentially exposed to withdrawal by the constraints of a bureaucratic treatment system. Participants spoke of the role of stockpiled methadone in helping each other out in these situations. Bruce described the plight of a friend who had been abruptly cut off his script and who, still dependent on methadone, struggled to find the money to buy this medication on the black market. Bruce picks up his methadone doses twice weekly, and adopts a somewhat unorthodox dosing system which enables him to help out his friend:
I tend to swig it out of the bottle, I have like three little swigs and then at the end of the week I’ve probably got about 60ml left… I usually give it to my mate who has to buy it, and I just give it to him, or give him it for three quid or something.
Sally, like a number of the other participants, is on weekly pick-ups and self regulates by taking a smaller split dose. Any leftovers she gives to others who need it:
‘Leftovers I was giving away… I know people need money, it don’t feel right to make money from that [methadone] you know, I’m getting this for free… people help me out to, so you know, this is about that.
The giving of methadone acts as an additional safeguard: it increases the likelihood that others will reciprocate in kind, when the giver is similarly in need. Participants also reflected on how their self-esteem was positively impacted by the ability to relieve another’s mental and physical distress; as Ros added: ‘He was proper grateful [to receive the methadone] and it really made me happy because he’s out of trouble now.’
What about risk?
Fifteen of our 37 participants were hepatitis C antibody positive, and even those who were negative did not necessarily maintain protective practices all of the time. The facilitators of risk that came up in our participants’ narratives are listed below in the loose categories of individual, situational and structural facilitators. As with protective practices, we will illustrate just a couple of these: sexual transmission beliefs and service deficits.
Sex and ‘risk equivalence’
Misunderstandings about hep C transmission were apparent in many participants’ narratives and for some, these misunderstandings could place them at risk. The majority of participants were in long term heterosexual relationships and, as with many long term couples, condoms were infrequently used. Seventeen participants described sharing works and other injecting equipment with their sexual partners, but on the whole they were careful not to share with others. Sharing equipment between couples was often framed in terms of a ‘risk equivalence’ – ie, the belief that there was just as much risk catching hep C through unprotected sex as through sharing injecting equipment. As Tom says:
‘You just think that you can get it [hep C] from sex… Just because you can get AIDS – you can get all those transmitted diseases from sex.’
This belief was translated into practice for many of the participants, as Ben and Jill illustrate:
‘If I’d been with a partner and we were using together, if we were shagging without condoms and stuff like that then you know, sharing a works is no different.’ (Ben)
‘Yeah, we share [works]… I sleep with him so if I was going to catch anything I would catch it through sex as well.’ (Jill)
The risk of heterosexual transmission of hep C is very low, unlike the risk of transmission through injecting equipment. While there are a number of reasons that people may choose to share injecting equipment with their sexual partners (such as an expression of trust and intimacy) participants’ frequent references to a ‘risk equivalence’ between injecting and sexual practices, indicates that – given other information – they may have rethought their sharing practices.
The situations in which participants described sharing works with their partners invariably involved running out of sterile equipment and the use of equipment from exclusively shared needle and syringe disposal containers or ‘cin-bins’. None of these participants reported marking their disposed works, making them indistinguishable on retrieval:
‘Me and my partner, we’d have the same cin-bin whatever, you know, I’d use his. We’d go into it, didn’t know which one [fit] was which anyway.’ (Sally)
For many, running out of sterile equipment would not necessarily have led to sharing with other individuals, with local needle and syringe access described as adequate by the majority. For some participants, such as Helene, running out of works was framed in terms of a reliance on her partner for drugs and equipment:
‘Because he says to me when he goes out at 10am, “Oh, I’ll be back in two hours” and he doesn’t get back till 10pm “I’ll come back with works”, he don’t come back with nothing.’
Helene had access to a syringe exchange locally yet, in a context of limited trust in her partner, might not have chosen to leave the house in case she missed out on the drugs he was also expected to supply.
Stigma and service deficits
While participants had access to services providing free sterile needle and syringes, there was no or little provision out of hours (for example, nothing open when Helene’s partner came home at 10pm with the drugs and no works) and no peer-operated exchanges in the area. The primary providers of needles and syringes for London users are pharmacies and drug and alcohol services. Both pose barriers to access. Participants describe not being able to access needles and syringes from pharmacies where they pick up their methadone for fear of being cut off their script:
‘Some pharmacies you have to sign a contract, a conduct contract… it says like, if you’re intoxicated they won’t give you your methadone which is like common sense. Fine. But I don’t like the idea of getting works from there because I want to minimise any chance at all of using that as an excuse not to dispense, you know. Cause I mean it’s not even a touch and go am I going to use. It’s a straight out I’m going to use methadone and I’m going to take gear as well, you know, and the pharmacist might, depending what mood he’s in he might decide not to dispense to you.’ (Jeff)
Fears about confidentiality and being cut off their script also inhibit people accessing clean needles and syringes from drug and alcohol services. Here Colin talks about a friend before moving on to talk about his own situation:
‘He thinks when he comes here [D&A service] getting works that somebody’s gonna tell his key worker that he’s been here to get works and she will be getting on his case… And I’ve got the same thing as him, ’cos I’m telling [key worker] that I’m cutting down on the gear and I’m stopping taking the gear and she wants to know why I’m coming round every week and getting like 50 works and stuff when I’m giving up the gear.’
Stigma and fear of identification as a drug user are risk facilitators, discouraging people from engaging with services. This was found to be particularly the case with female drug users, for whom stigma and fear of social services was a disincentive to access opiate substation therapy or needle and syringe exchange:
‘They (women) suffer in silence, they just buy it [methadone] on the street… do what they can to survive. And then there’s the fear if they’ve got kids. That’s one of the big issues, it’s their kids.’ (Abby)
‘Yeah, I felt judged, you know, because I wasn’t a kid, I were older, a mother, and the fear is that it’s going to come back on the kids, you know, that you’re going to lose them, so going to somebody, admitting there’s a problem, feels like a massive risk.’ (Klara)
Many of the participants had lost their children to social services. This was a deeply traumatising experience, after which a number described ‘going off the rails’ and engaging in more risky practices:
I’ve lost two (children)… we weren’t using or anything at the time when [the first] was taken, when the second one was taken, we weren’t using, we weren’t thieving, we weren’t doing nothing, we were just on the street and they still come in and took him just because of our past… that’s what set this bout off, what I’m in now really. …That was when we went completely over the edge… we were just complete chaos, just didn’t care if we lived or died. (James)
Implications for practice
Interventions advising people what to do to change their injecting practices, have had limited success in the past. Many such interventions focus on risk (ie of hepatitis C transmission) and deficit (ie in knowledge/practice). These messages may not resonate with the immediate priorities of their target audience and can reinforce stigma in an already stigmatised population. While there is a place for individual-based messaging, this needs to be coupled with interventions that acknowledge the important social dynamics of injecting and the role of social networks, environments and services in helping to facilitate protective practices. Below we provide some recommendations for practice based on the findings of the London Staying Safe project.
Responsive service provision
Fundamental is the removal of barriers to sterile needle and syringe access. Sadly the Australian and New Zealand model of peer-led needle exchange is rare in the UK. This, however, does not need to remain the case. Peer workers could provide an important role in making needle exchange at drug and alcohol services more accessible, particularly if accompanied by transparent policies regarding client confidentiality and systems to keep the exchange separate from the domain of client case workers/prescribers. Ideally, this would be accompanied by the widespread introduction of injecting equipment vending machines for after-hours access.
The current UK policy emphasis on ‘recovery’ – often interpreted as abstinence-based – creates additional barriers for people who inject drugs to fully engage with services. Participants demonstrated a need for non-stigmatising practical advice about vein care, venous access and caring for soft tissue infections. This is important for reducing transitions to groin injecting and associated problems such as unresolved ulcers and limb amputation. Concerns about confidentiality and punitive OST policies can inhibit people from disclosing current injecting and receiving the help they need. As with needle and syringe exchange there is a need for such services to be decoupled from the domain of case workers/prescribers and ideally involve peers.
Participants were only able to self-regulate and keep methadone back as a safeguard for themselves and others if they were receiving take-home doses. This important harm reduction resource can only be facilitated by less punitive and restrictive methadone dosing protocols. While this is a controversial recommendation in the current policy environment, it is backed by research demonstrating that the adoption of more flexible dosing regimens has better outcomes than supervised consumption; resulting in improved treatment retention rates, increased involvement and trust in services, improved reported quality of life and no demonstrated increases in criminal activity or illicit drug use (Bell et al., 2007; Gerra et al., 2011; Harris et al., 2013; Robles et al., 2001).
Meeting the needs of women and couples
The fear of losing children to social services, coupled with concerns about confidentiality, can inhibit people who use drugs, particularly women, from accessing needed services. The trauma of having children removed often exacerbates risk practices. There is a need for service provision to be responsive to these issues, with particular attention to the needs of female drug users. COUNTERfit, a Toronto harm reduction programme, provides an example of how this could be put into practice. Their Grief and Loss Education and Action Project (http://www.srchc.ca/program/common-ground-program) engages women who are past or current drug users and who have had children removed by social services in the sharing of lived experiences, coping strategies, art-making, and action planning to work toward transforming the child welfare system. From talking to the London participants who had lost their children in this way, it is evident that access to a similar programme would be invaluable.
For couples who use together, there is a need for straightforward information on the relative risks of unprotected sex and injecting equipment sharing. Hepatitis C prevention materials which ‘add on’ safe sex information can do more harm than good – perpetuating ‘risk equivalence’ beliefs. Couple-based interventions can include practical tips such as strategies to keep equipment separate and distinctive. The incorporation of syringe marking into the injecting routine helps identification of each partner’s syringe, when taken back out of a shared disposal bin, for example. The provision of different coloured syringes and distinctively marked twin disposal bins can also reduce injecting risk. Such approaches differ from current HCV harm reduction interventions which emphasise the importance of a new syringe for every injection, in that they acknowledge and work within the constraints that many users face in regard to sterile syringes access (such as limited NSP coverage).
Innovative harm reduction messaging
Getting a quick hit is pleasurable, and there is often nothing more desperation inducing for a person who injects than poking around for a vein, ever conscious of the risk of the mix coagulating and becoming unusable. The pleasure of injecting and drug use in general seems to be somewhat of the elephant in the room in drug services, where the preferred rhetoric is one of ‘misuse’, ‘harm’ and ‘recovery’. While people accessing drug services are often experiencing substantial personal, social and/or economic problems to do with their drug use this does not negate the pleasurable experience of use for some, and the pragmatic concerns that people who inject have regarding the maintenance of their veins.
In an earlier article (Harris & Rhodes, 2012) we suggested that hepatitis C prevention could learn from the success of HIV prevention messages aimed at MSM (men who have sex with men) which actively engage with notions of pleasure. This would involve a move away from an emphasis on risk, and things not to do (ie ‘do not share’) to one emphasising the pleasure and utility of using new works (ie getting a quicker hit, less vein damage and scarring). It has been a highlight for us to see this suggestion taken up in harm reduction workforce training and by organisations such as the Irish Needle Exchange Forum, who produced a series of harm reduction posters based on these messages (see pictures). While using new works is not completely sufficient in HCV transmission avoidance (new spoons, filters etc are also important) these messages have the potential to resonate with people who inject who are jaded or confused by HCV prevention messages, and may provide a hook with which to provide other protective interventions.
We would like to close with a quote from one of our participants, Malcolm:
I like taking drugs you know… And I’m not hurting no-one so I’m going to continue to take them until I die.
We believe that harm reduction initiatives which acknowledge the pleasures and pragmatics of drug use are more likely to reach long term users such as Malcolm than those that frame drug use as ‘problematic’ and imbued with risk. This can be a challenge in the current policy environment where services face pressure to provide ‘results’ in regard to transitions away from drug injecting, and ultimately transitions off OST. Innovative service provision and harm reduction messaging is particularly important in such an environment, where people who inject are increasingly facing challenges not only in regard to their drug use, but also benefit and accommodation provision. Responsive service provision can not only help to prevent drug-related harms (such as overdose, blood-borne virus infections, soft tissue infections, amputations resulting in transitions to groin injecting) but help to address the trauma faced by people who have had their children taken and the destructive patterns of drug use that can result.
References
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Gerra, G., Saenz, E., Busse, A., Maremmani, I., Ciccocioppo, R., Zaimovic, A., Somaini, L. (2011). Supervised daily consumption, contingent take-home incentive and non-contingent take-home in methadone maintenance. Progress in Neuro-Psychopharmacology and Biological Psychiatry, 35(2), 483-489.
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Harris, M., Rhodes, T. & Martin, A. (2013). Taming systems to create enabling environments for HCV treatment: Negotiating trust in the drug and alcohol setting. Social Science and Medicine, 83, 19-26.
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