Centering the Experience of Hepatitis C Infection and Treatment through Graphic Ethnography in The Virus

The Virus

Aleksandra Bartoszko and Marcin Ponomarew

Project Supported by Foreningen for Human Narkotikapolitikk (FHN) and Licensed under a Creative Commons Attribution – Noncommercial 4.0 International License. 2016. 48 pages.

The Virus (2016), a graphic ethnography written by social anthropologist Aleksandra Bartoszko and drawn by Marcin Ponomarew, begins with a not uncommon insight from people who inject drugs and find themselves infected with hepatitis C (HCV): “When you say it’s dangerous, nobody cares” (3) and “Hep C. What is it? Everybody has it” (5). In the context of the hardships of marginalized drug use—“an abscess there… sometimes an amputated leg… scorched arms” (4)—a viral infection that one cannot see nor feel may become a non-issue. This sense of unconcern about the infection evident in illness narratives of people who inject drugs and are infected with hepatitis C may be related to desensitization to the health problems it poses and the high prevalence of this infection among people who inject drugs (Harris 1031-1035; Olsen et al. 313-314). At a rate of 1.5%, the prevalence of hepatitis C infection is particularly high in the World Health Organization European region, which includes Norway, the location of this ethnography. Elsewhere, the United States has seen a tripling in the reporting of new HCV infections from 2012 to 2107, mostly among young people aged 20 to 29. In my own research on injection drug use in the midwestern U.S., high HCV rates were understood to be a possible precursor to an outbreak of HIV and not necessarily an issue in and of themselves. The question then becomes – and Bartoszko poses it deftly in this work – why has the concern been placed on HIV and not HCV?

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In The Virus, Bartoszko, with the aid of Ponomarew’s compelling panels of strategically colored graphics, picks up this concern through the story of Iren Magnussen, a woman with experience injecting heroin. Early graphics reveal the scene of an ethnographic interview between Bartoszko and Magnussen, showing the author sitting on a park bench, coffee in hand, conversing with Magnussen while a tape recorder picks up the audio. Magnussen found it easy to encounter prevention messages about HIV. These images were often contained within upsetting imagery of sickly individuals in hospital beds surrounded by sorrowful friends and family, but when she researches HCV deaths online all she finds is “… columns and statistics” (9).

Magnussen follows the HIV prevention messages proposing interventions into drug use practices—“I used the needle bus a lot” (10), “I tried to have my own needles” (11)– as best as she could, but unfortunately, they did not protect her from hepatitis C infection. The reader is left wondering, as Bartoszko and Ponomarew show, rather than tell, if HIV prevention messages misled people who inject drugs into a false sense of security from infection, making them feel that they were, in fact, using drugs safely. As Magnussen states: “I never thought of spoons as equipment. At all” (19) and “Everybody talked about HIV. But nobody took hepatitis C tests” (13). Through Magnussen’s story, Bartoszko shows the common ways that HCV can be spread via injection equipment (cottons or pads, cookers, and water) that comes into contact with blood. This ethnography functions as an educational tool in this sense, but also goes beyond to offer a portrait of the subjective, embodied experience of chronic infection and treatment.

In addition to the subjective and embodied experience of being chronically infected with a virus, Bartoszko and Ponomarew show the sometimes counterintuitive responses patients might have. Magnussen develops an affectionate relationship with the virus inside her: “I fell in love a little with my hepatitis C viruses. They are so cute and weird, but they were unruly. I never knew where they were hiding” (25). The reader receives a brief virology lesson through a depiction of the research Magnussen conducts into viral replication, RNA, and proteins, aided by Ponomarew’s colorful graphics that imply the unceasing movement of viral activities.

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When Magnussen pursues treatment for hepatitis C, there is much more to be learned and experiential knowledge to be conveyed. Magnussen’s virus must be genotyped so that an appropriate form of treatment can be determined. Waiting for these test results is depicted as playing a game of roulette, since some genotypes are harder to treat than others, requiring longer periods of treatment and more expensive pharmaceuticals. The connections between biomedicine and capital are best represented here by a man in a business suit happily crunching numbers on a calculator and drawers full of cash (33). There is no text accompanying these images following the dictum, “… in comics, there is usually no need to both tell and show” (Karasik 243). When Magnussen does begin to receive treatment, she is shocked by cost of the medication, though it is assumed that she does not pay the full cost (or, perhaps, any of it). The lived experience of treatment in the latter parts of this work is instructive for social scientists who study health and medicine, as well as individuals who may undergo hepatitis C treatment using new medications (i.e. post-interferon treatments), which claim to have very few if any side effects. Magnussen is suspicious of this claim and ultimately does experience side effects leaving her feeling “… like a pile of meat. Human meat” (42). Magnussen and Bartoszko’s narrative returns to a loving affect near the end when Magnussen, having concluded treatment and feeling much better states: “This hepatitis C story is kind of a love story. The virus came with something fantastic” (46), leaving the reader to contemplate the place of love within infection and recovery.

Works Cited

Harris, Magdalena. “Troubling Biographical Disruption: Narratives of Unconcern about Hepatitis C Diagnosis.” Sociology of Health and Illness, vol. 31, no. 7, 2009, pp. 1028-1042.

Karasik, Paul. “Afterward: Reading Lissa.” Lissa: A Story about Medical Promise, Friendship, and Revolution,” by Sherine Hamdy and Coleman Nye, University of Toronto Press, 2017, pp. 241-250.

Olsen, Anna et al. “Positive Health Beliefs and Behaviours in the Midst of Difficult Lives: Women Who Inject Drugs.” International Journal of Drug Policy, vol. 23, no. 4, 2012, pp. 312-318.

Kelly Szott, Ph.D., is an Assistant Professor of Sociology at Southern Oregon University in Ashland, Oregon. She studies harm reduction, health care, and injection drug use in rural settings.