Experts by experience

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Tim Rhodes Magdalena HarrisParticipants in the Staying Safe hepatitis C prevention project gave invaluable insight into life-saving protective practices. The findings could be used to make harm reduction messages much more relevant, say Magdalena Harris and Tim Rhodes

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’.

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. Twenty-five primarily used heroin, with 12 preferring a crack and heroin mix. All but two were also on an opiate substitution treatment (OST) programme, with the majority receiving methadone (31) and four Subutex.

In order to understand the protective factors that helped some people avoid hepatitis C we chose a broader approach than one that 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, which 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.

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 concentrate on injecting, and the pleasure of being able to relax and enjoy the hit. They were also concerned about maintaining social relationships, image management (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.

For people who inject regularly, veins are precious and minimising the pain and length of injection time was a primary concern, and one of the main reasons for using new needles. Half of the participants began injecting before hepatitis C had been named and when 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.

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.

It has been well documented that the most risky injecting practices take place when people are in withdrawal or quickly trying to avoid its onset. It was no surprise, therefore, to find that strategies participants used to avoid withdrawal also helped them avoid hepatitis C. The majority of participants were on a methadone script and, for those who could, stockpiling methadone was key to protecting against withdrawal, as well as allowing them to help out others in need.

Harm reductionWhat 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 ranged from the personal (such as inability to prepare and administer drugs) to the situational (such as missing an OST dose or having limited money) to the structural (such as being affected by policing, or lack of accommodation and benefits).

Misunderstandings about hep C transmission were apparent in many participants’ narratives and could place them at risk. Most were in long-term heterosexual relationships and, as with many long-term couples, condoms were infrequently used. Sharing works and other injecting 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.

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.

While participants had access to services providing free sterile needle and syringes, there was no or little provision out of hours and no peer-operated exchanges in the area. The primary providers of needles and syringes for London users were pharmacies and drug and alcohol services, but participants were inhibited from using them by fears about confidentiality and being cut off their script.

Recommendations for practice

Interventions advising people on changing their injecting practices have had limited success in the past. They need 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.

Fundamental is the removal of barriers to sterile needle and syringe access. Peer workers could have an important role in making needle exchange at drug and alcohol services more accessible, particularly if accompanied by transparent policies on 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.

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.

The fear of losing children to social services, coupled with concerns about confidentiality, can inhibit people who use drugs, particularly women, from accessing services, and the trauma of having children removed often exacerbates risky practices. There is a need for service provision to be responsive to these issues; COUNTERfit, a Toronto harm reduction programme, provides an example of how this could be put into practice.

For couples who use together, there is a need for straightforward information on the relative risks of unprotected sex and sharing injecting equipment. 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.

Harm reductionInnovative messages

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 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.

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 (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. While using new works is not completely sufficient in HCV transmission avoidance, these messages have the potential to resonate with people who inject and who are jaded or confused by HCV prevention messages, and may provide a hook for other protective interventions.

We believe that harm reduction initiatives which acknowledge the pleasures and pragmatics of drug use are more likely to reach long-term users 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 are particularly important in 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, 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.

Magdalena Harris and Tim Rhodes are based at the Centre for Research on Drugs and Health Behaviour, London School of Hygiene and Tropical Medicine. To find out more about the Staying Safe project, email magdalena.harris@lshtm.ac.uk. Here she talks about the Staying Safe project in an Exchange Supplies video: www.youtube.com/watch?v=PsWn0_gOT4Q. For a fully referenced version of this article, with case studies, see here.