Page - 81 - in Critical Issues in Science, Technology and Society Studies - Conference Proceedings of the 17th STS Conference Graz 2018

Hepatitis C strikingly highlights, for instance, the important role of pharmaceutical drugs – less so on a level of production, consumption, and institutions, but more so in the way pharmaceutical drugs have effects beyond the body’s biochemistry (see Oudshoorn 2003; Whyte, van der Geest, and Hardon 2002). Medicines act within the world; they embody something and they change social relationships. As active agents, they can also change what a disease is. In particular, as I alluded to earlier, if we attend to an “ontological multiplicity” of Hepatitis C, we are better prepared to understand disease identities and definitions as day-to- day enactments rather than paradigmatic revolutions set off by “the cure.” In this way we can then reveal struggles over which ontologies count and which do not – what Annemarie Mol (2002) described as an “ontological politics.” DAAs can then be said to enact Hepatitis C as located in the virus, and only there; as an urgent infection. HCV’s chronic assault on failing livers is made less and less into a reality Austrian hepatologists need to deal with. As of 2018, I have just returned from a roundtable connecting policy, medicine, and patient advocacy for hepatitis in Austria, and our concerns too are about locating and eliminating. Make no mistake, “the cure” is everything Byron Good (1993, 86) has called biomedicine’s “soteriological core.” The hope engendered by pharmaceuticals is real. DAAs are, in every sense of the word, “magic bullets,” and this magic too is real for people afflicted with Hepatitis C. At the same time, patient advocacy groups in Austria are fighting for federally administered treatment registries to follow up on the long-term consequences of Hepatitis C and “the cure.” Every patient I have talked to does worry about the effects of the drugs they received, the damage to their livers they sustained over decades of silent infection, and the fact they are “cured, but not healthy.” This phenomenology of sustained Hepatitis C has material, powerful offshoots. Will these experiences be taken seriously by the next doctor patients face, when official biomedicine so clearly tells us that the cure equals health equals the end of disease? And what about patients who are battling in court to continue receiving a workers’ compensation pension for the lasting effects of Hepatitis C, when cured is what they are now? One of the questions that drives my research is an interest in the gaps that are obscured by “the fetish of the cure,” its “thingness” and “directness.” When doling out pills, for instance, is all it takes, I worry no one will stop to ask why the pills are even needed or what the alternatives might be. I worry about the consequences to welfare, social insurance, and the kind of “sick role” people may take, or cannot take, within their immediate surroundings as much as when they are facing medical institutions. Far from certain or final, it is these open questions that continue to power my research. 81