Outside the biomedical box of hepatitis C research

The experts in the European Liver Patients Association (ELPA) Hep-CORE advisory group provide a window on the broad range of hepatitis activities and perspectives in Europe today. Hep-CORE PI Jeffrey Lazarus has been interviewing some of them about how they came to work with viral hepatitis, how the field has been changing, and what new research is called for.

Magdalena Harris

The fifth interview in the Hep-CORE series is with Magdalena Harris, Lecturer at the London School of Hygiene and Tropical Medicine.

How did you become involved with hepatitis C/viral hepatitis?

My involvement with hepatitis C was initially personal. For most of my 20s I was a dedicated user of heroin and other injectable psychoactive substances. My day-to-day consisted of negotiating the funds and connections to maintain this habit.

In the mid-1990s I worked at a peer-led needle exchange in Dunedin, New Zealand. It was there that I found out I had hepatitis C. While disappointed to receive a positive diagnosis, at the time I put it to the back of my mind. It was an occupational hazard, common amongst my acquaintances.

Hepatitis C reengaged my attention years later, after I stopped injecting. With heroin withdrawals and highs no longer masking the effects of the illness, it manifest in intense fatigue. Also newly evident was the stigma of the virus – I decided not to disclose to the ‘normal’ people I was living with. This combination of factors created a conundrum – I was being urged to consider treatment by my doctor, but felt it untenable given my living circumstances – also my intense fear of interferon side-effects.

Having resumed my university studies I carried this dilemma forward into my first research study: what did other people living with hepatitis C in New Zealand do, what was their experience of living with the illness and negotiating stigma, treatment and disclosure decisions? With scholarship support I extended this study to incorporate Australian data for a PhD at the University of New South Wales. Since 2009 I have been based at the London School of Hygiene & Tropical Medicine conducting a program of work exploring the social relations of hepatitis C, prevention and treatment in the UK.

How has the hepatitis C/viral hepatitis field been changing?

The hepatitis C field has undergone dramatic developments in the past few years – primarily in relation to biomedical advance. This has coincided with, and contributed to, heightened awareness of hepatitis C as a global public health problem. The advent of direct-acting antiviral (DAA) medications in combination with modeling projections highlighting their eradication promise has heralded a new vision of the ‘end of hepatitis C’.

Hepatitis C elimination is premised on scaling up treatment for people who currently inject drugs – thus reducing transmission potential, incident infections and, ultimately, population prevalence.

Hepatitis C elimination is premised on scaling up treatment for people who currently inject drugs – thus reducing transmission potential, incident infections and, ultimately, population prevalence. The hepatitis C field, for many years, has been characterized by debates over the ‘worth’ of providing treatment to people who inject drugs (PWID) with particular concerns regarding side effect management, co-morbidities, adherence and re-infection. While a substantial body of literature has refuted such concerns, it has really taken the public health goal of viral elimination to invigorate the message that PWID are a treatment priority population.

Of course, in many countries, PWID still face considerable barriers to treatment access – compounded by another change to the hepatitis C landscape – treatment expense and prioritization. In England, for example, access to treatment is currently capped at 10,000 people per year – and with treatment decisions mandated on ‘unmet clinical need’, many PWID will miss out.

What areas of hepatitis B and C research do you think are being neglected?

My concern is that enthusiasm over biomedical advance will increasingly marginalize already fragile prevention initiatives, particularly those that directly involve the affected community. Research that supports the scale up of peer-involved prevention initiatives, such as secondary needle exchange, is a needed and currently de-prioritized adjunct to treatment focused initiatives. ‘Treatment as prevention’ is unsustainable and potentially unethical without a concomitant focus on ‘prevention as prevention’.

My work has shown that hepatitis C prevention and treatment engagement among PWID can be indirectly facilitated through attention to more pressing concerns. Clean needles are often used for their sharpness (facilitating ease of injection and vein care) rather than sterility, for example. In the same way, services that engage with and attend to the immediate needs of PWID – such as wound care and advice on injection technique – then optimize their ability to engage clients with hepatitis C-related issues.

One of my research interests is on taking a step back from an overtly hepatitis C focused research agenda to explore the competing everyday concerns of PWID and their social structural antecedents. Through the provision of enabling environment interventions, hepatitis C treatment and prevention opportunities can be indirectly optimized. This approach is in contrast to biomedical and behavioral interventions which typify the hepatitis C research field.

Selected author’s publications:

The promise of HCV treatment as prevention: Meeting the needs of people who inject drugs?

Hepatitis C treatment access and uptake for people who inject drugs: A review mapping the role of social factors.

Venous access and care: Harnessing pragmatics in harm reduction for people who inject drugs.

Hepatology, Medicine and Policy has launched with BioMed Central. For more information, visit: www.hmap.biomedcentral.com.

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