Injecting Related Risk and Protection: The Importance of Peer Involvement by Dr Magdalena Harris


 

Introduction

In thinking with the conference theme, which is “Priorities for the Future,” I’m going to orient this around three of my own personal priorities, which are: honoring harm reduction expertise, researching with people (not on them), which is sort of pretty obvious really. This can enable us to broaden the conversation, and I’m interested in looking beyond risk and beyond bloodborne viruses. I’m going to talk about examples of those, and this can enable us to capacitate change in some really interesting ways, collaborating with communities. I really like what [Prof] Roy [Robertson] said about pragmatic research; I feel like that’s where I’m at right now. I’m going to draw on my own experience and research as a case study.

 

Personal Reflection

I bit off more than I could chew in preparing this presentation. I wanted to cover everything, and while running through it last night, I realized I had to make some dramatic cuts. So, I’m just going to skip through these sections, but they’re all there on the slides, and I can talk through them later if you’re interested.

 

My Background and Motivation

I’m going to provide a personal introduction: why I’m here discussing peer involvement and how my personal history has informed my research focus. For most of my twenties, I was a dedicated injector in New Zealand, which is quite a challenging role involving heroin and anything else I could get my hands on. I contracted Hep C, as you do, and when I stopped using, I was employed to go on treatment, which at the time was interferon. I was very anxious about this and faced many dilemmas, including issues surrounding disclosure.

This motivation drove my first research project when I stopped using, went back to university, etc. I’m still engaged in this research, stemming from my own selfish curiosity, but my approach to research practice is also heavily influenced by feminist epistemologies that emphasize giving back and bringing part of yourself into the research encounter. I think working with people who inject drugs is particularly important for me because it’s such a stigmatized condition. If there’s anything I can do to reduce their anxiety about being judged, then I will do it.

 

Return to New Zealand and Peer Connections

I’ve also included this slide because about this time last year, I was invited to return to New Zealand to speak at the first harm reduction conference there. For me, that was really moving and a real honor, particularly as it was organized by the New Zealand needle exchange. In my early twenties, I volunteered at the Dunedin needle exchange, which was peer-led.

On weekends, you’d walk there and could smell billows of pot smoke coming down the stairs and experience all sorts of things. I’ve included this in the presentation to illustrate a sense of leaving and moving to the “big smoke,” but with the realization that not much has actually changed. This evokes a feeling of uneasy disjunction: am I a peer? Am I a researcher? I’m not really either; I exist in this weird, nebulous place in between.

 

Honoring My Past and Fostering Connection

In order to marry that up and honor my past, I’ve continued to work with people who inject drugs. In doing so, and while honoring who I am, I foster a sense of identification and trust. In my first research project, I had no money to give participants; it was related to my master’s, but I had to turn people away because I disclosed that I had Hepatitis C at that time. There were so many people desperate to talk to somebody else with Hep C, many of whom had never had that opportunity in their lives before. Most were ex-users and completely secretive about it.

 

Shared Experiences and Connections

As Claire said, even though we have totally different lives, we are still connected by that virus. In a later project concerning injecting drug use, Carl said, “You’re an ex-user; you know how it feels. If you had been a ‘normal’ person, it would have been harder for me to express how I felt.” Often, I don’t necessarily disclose, but it’s interesting that people will guess, and I’m often surprised by that.

For example, with Benny, I said, “Oh, you know, I’m an ex-user,” and he replied, “I’m not being horrible, but I can tell.” I was taken aback and asked, “What gave it away? Is it that obvious?” He explained that it was about the way I reacted to how he was speaking, highlighting a sense of an embodied connection.

 

Insights from a Shared Past

This connection can be challenging but can also lead to great insights. I think I might have titled this talk “A Fascination with Veins,” as that’s really at the core of it for me. As an ex-user, I understand how important veins are to the individuals who inject drugs, and we notice each other’s veins in the interview encounter.

One participant remarked, “Oh look, you’ve got a massive vein there; bloody hell.” This research is quite confronting for me. I once noted in my field notes after starting in London that I dreamt about trying to find a vein; the desperation grew with each attempt. That feeling was triggered by interviewing a guy that day, where I could see his injection attempts on his hands—desperation writ large on his flesh. However, it also enables insights and connection, broadening the conversation in unusual ways.

 

Staying Safe Project Insights

For instance, in the Staying Safe project, which looked at Hepatitis C prevention, we found that people who managed to stay safe were largely motivated by practical concerns around venous access. They used sterile needles not inherently to prevent bloodborne viruses, but because they were sharp and would help maintain their vein health. As Giles stated, “People prefer using clean works because they are sharp and not dull.” But does the message really get through about Hep C? “So what? I’m not going to drop dead tomorrow.” This highlights a different priority.

 

An elephant in the room? The role of pragmatics and pleasure in effective harm reduction by Magdalena Harris

Click here for paper

 

Research Dynamics and Narrative Possibilities

My role, so to speak, in this nebulous in-between place, enables me to have these sorts of conversations. I want to clarify that this is not to suggest that this research is somehow better or that I’m receiving any more honest answers because of my background; it’s simply a different dynamic considering every researcher brings their own history and embodiment, creating different narrative possibilities. This one is merely different from another.

 

Priorities in the Context of Hepatitis C

My primary interest lies in what matters to the people I’m working with. The Staying Safe study was about Hepatitis C, and while talking to individuals, they were aware that it was primarily about Hep C, yet they continuously pulled up their sleeves or pulled down their pants, showing me the wounds that Roy illustrated. To them, that was important, as they felt they had nowhere to go.

 

Staying safe from hepatitis C: engaging with multiple priorities by Magdalena Harris, Carla Treloar, and Lisa Maher

Click here to locate paper

 

Investigating Skin and Soft Tissue Infections

This has motivated my work, which currently focuses on improving care and treatment interventions for skin and soft tissue infections among people who inject drugs. This inquiry stems from the need to understand how some individuals avoid chronic infections and what we can learn from them.

 

Mixed-Methods Study Overview

This is my first mixed-methods study; I collected an extensive amount of survey data from 455 people who inject drugs in London. Notably, this population is extremely marginalized, with 78% reporting experiences of rough sleeping or street homelessness, with a median duration of four years. Nearly half are currently in hostels or are street homeless.

The majority inject heroin or a combination of heroin and crack cocaine, and there is a significant proportion suffering from skin and soft tissue infections, including abscesses and cellulitis, with many delaying seeking care. Often, they wait more than ten days for medical advice, with some delays extending to months. Intriguingly, a large number report hospitalization for conditions that are typically very treatable.

 

Comorbidity and Delays in Care

It’s important to note that there’s an alarming amount of comorbidity among this population, all diagnosed conditions. For instance, 27 individuals reported having a bacterial infection, abscess, or cellulitis along with septicemia, leading to hospitalization. This raises serious concerns regarding delays in care. Similarly, seven reported endocarditis, which is alarming.

 

Qualitative Insights: Context Matters

I’m interested in digging deeper beyond the numbers to understand what is occurring. The qualitative interviews allowed an exploration of protection alongside risks. I asked participants to describe a typical day on the street; it’s crucial to be attentive to context. Street injecting is characterized by opportunity, urgency, and constraint—it’s a difficult environment to use drugs with constant worries about police interference. People are often forced into unhygienic environments with violent architecture, posing risks to their health.

 

Insights into Injecting Practices

What surprised me was how participants spoke about their injecting practices. The majority I spoke to used heroin and crack together and detailed adding a bit of cool water before injecting. Water sources varied—they included tap water, bottled water, puddle water, surface water from cars, water from toilet systems, whiskey, beer, cider, Coca-Cola, lemon juice, and even saliva.

 

Environmental Constraints on Drug Use

I wasn’t expecting such revelations, which would have precipitated including water variability in our survey, but this is a learning process. An example of environmental constraint was illustrated by James, who mentioned, “We were on the streets; it was a red hot day, and there was no water. I was proper sick for a hat.” With no water available, he resorted to using puddle water.

Unfortunately, he was fortunate in that his saliva didn’t work; conversely, Eddie wasn’t as lucky. He shared, “I got the worst infection of my life and nearly died. I was hospitalized for nearly three months.” This illustrates the real dangers of injecting with contaminated water, pointing out the severe implications surrounding access to clean water, especially considering that drug-using kits distributed through pharmacies in London often lack water, simply because it’s deemed too expensive.

 

The Cost of Lack of Resources

How much did that lack of water cost Eddie? These circumstances are incredibly frustrating, and I am motivated toward effecting change. I am interested in understanding how people navigate constraints in these circumstances. How can we honor and learn from their expertise? For example, James gave an excellent tip for people who are on the streets: when begging, he asks individuals to purchase a bottle of water for him. This is fantastic advice for anyone portraying similar experiences—ask for two bottles: one to drink and one to use for injections.

 

The Prevalence of Vein Damage

Returning to the core of my presentation, vein damage is central to many health harms, and I’m genuinely intrigued about why individuals in the UK lose their veins so rapidly. My interest, rooted in my experiences as an injector in New Zealand, raises questions about the differences. I injected my arms for nearly ten years without issues, while here in the UK, people report losing their peripheral veins after around six months. What’s happening?

 

Hypotheses Regarding Acidity in Heroin Preparation

I hypothesize that this problem could relate to the use of too much acidifying agents in heroin preparation. Most people, as Mason noted, misconstrue the intended use of a sachet, believing it is designated for a single use in relation to a bag of heroin. Given this nerdy obsession with veins, we’ve asked numerous questions in our project regarding acid quantities and practices among users, unveiling that most individuals employ too much. In a previous study, we tested heroin solutions using a pH meter and discovered that those in London preparing heroin with citric acid were effectively injecting solutions comparable to the acidity of vinegar—far too acidic for safe use.

 

Capacitating Change: Practical Steps Forward

In thinking about capacitating change, what can we learn from this information? While I would love to see significant changes, like establishing drug consumption rooms and safe injecting sites in every borough, I acknowledge that such goals are beyond my singular influence. However, there are tangible steps we can take, like rewording the citric acid packaging, which we have accomplished—an essential first step. Many users indicated that they were using entire sachets, which is too much. Additionally, the previous packaging’s warning that citric acid damages veins is a shaming message, inaccurately representing why individuals use the acid compound.

 

Collaborative Efforts and Packaging Revisions

Through collaboration, exchange supplies have reworded this packaging, promoting responsibility with clear guidance stating: “Add citric slowly, use as little as possible; starting small is better since a whole sachet is often too much for most injections.” I see this as a small yet significant change. They’ve also redesigned their water posters to include information about saliva and puddle water, integrating the risks and acknowledging diverse realities, rather than propounding idealistic notions of always using sterile water, which can alienate users.

 

Advocating for Hierarchies of Care

I believe in advocating for hierarchies of care. Providing solutions for those who can access them in different ways acknowledges various levels of safety. While I might not have long left to discuss further, I want to address future plans. These small changes must also extend to advocating for bringing water back into injecting packs throughout the UK—a larger project.

 

Understanding the Impact of Pain and Fear

Addressing the qualitative data illustrates that participants are living with severe pain, incorporating this discomfort into their daily lives, which becomes a compounding constraint leading to health-harming consequences. Many described delays in seeking care linked to stigma and fear, which are actionable barriers—one significant fear is the prospect of being hospitalized while in withdrawal.

 

The Complex Relationship Between Care and Substance Use

Individuals often express the need to ensure they have adequate drugs or finances before seeking care to prevent withdrawal symptoms in hospital settings. Living hand to mouth complicates this, often resulting in serious situations where they collapse and require ambulance assistance. Self-discharge from hospitals is also common.

 

The Impact of Violence on Individuals’ Lives

As I close, I’ll acknowledge that individuals incorporate severe pain into their lives amidst multiple types of violence they experience daily—both physical and structural violence perpetrated by helping services. One individual recounted, “Because I’m on the streets, the services tell me to just stay there.”

 

Internalized Stigma and Desperation

This leads to a sense of internalized violence, where people adopt negative stereotypes about themselves; for example, saying, “I’m a junkie; I wait until the last minute.” The desperation is palpable, as illustrated by one participant with a significant scar across his throat stating, “I had enough; I slipped my own throat last September.” This heartbreaking expression of desperation indicates underlying issues that need immediate attention.

 

Conclusion

In conclusion, I wanted to reflect on these issues and articulate how we can honor the expertise in our work, be attentive to what matters to the people we engage with, and broaden the conversation to recognize individuals’ self-care methods under constraints. Instead of merely concentrating on deficits and risks, we can collaborate within communities to make incremental changes—such as redesigning citric packets or advocating for opiate substitution therapy to be recognized on critical medicines lists.

 

Thank you very much!



 

You can find Magdalena’s work at the following web address:

lshtm.academia.edu/MagdalenaHarris