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Critical Issues in Science, Technology and Society Studies - Conference Proceedings of the 17th STS Conference Graz 2018
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global reckoning is the availability of “the cure.” In the last few years, Hepatitis C has become a “curable” disease and the emergence of this “cure” has put it on global agendas. This cure has the power of finality – of settling the score with a mysterious and elusive disease. It promises and has actualized “cure rates” – that is, sustained virological response rates in 95% to 99% of cases. “Numbers we aren’t used to”, Dr. Ferenci from the AKH declared in the first-ever presentation of clinical results I attended in 2016. The powerful seductiveness of its cure cannot be understood without recognizing HCV’s biography as a virus that had proven particularly challenging to deal with in the past. Chronic or Infectious? So, what is this cure? Already the wrong question to ask in many ways, because it assumes “the cure” is a reality separate from the disease. Instead, we have to conceive of Hepatitis C and its cure as mutually constituted and co-emergent. In this, I am following specifically Ludwik Fleck’s (1979) often terribly neglected study on the syphilis-virus. For my argument, this means that the makeup and characteristics of “the cure” have been changing the very ontology of the disease itself. “The cure” has been transforming Hepatitis C treatment: In a practical-material sense, it has transformed how Hepatitis C is treated and what it is treated with. But it has also transformed it in a more symbolic-semiotic sense: what Hepatitis C is treated as by doctors, insurance companies, governments, international agencies, and the like. In their edited volume, Lenore Manderson and Carolyn Smith-Morris (2010, 2) have collected discussions on the phenomenology of chronic illness, critiquing how “the global rhetoric takes the definition of chronic as given and its epidemiology as stable.” Let me follow their critical attention to the powerful but reductive epidemiological dichotomy of chronic vs. infectious. But let me also flip it around and focus on the material-semiotic consequences of enacting this rhetoric in practice with a case like Hepatitis C, whose definition, I argue, has markedly changed. I argue that Hepatitis C is being treated now less as a chronic disease, and more as an infectious disease – with lasting consequences for patients, policies, and institutions. The metaphor I want to work with here is not one of revolution. Instead, Hepatitis C has always been operating on a curious double-register of being both and at the same time: chronic and infectious. In the times of “a cure,” however, Hepatitis C’s chronic character is receding into the background while its infectious character is being enacted and acted upon more and more. And this change was set off “the cure”: so-called Direct-Acting Antivirals or DAAs. Before DAAs, Hepatitis C was treated with Interferon: a substance meant to boost our immune response to fend off the virus. Interferon was also notorious for its side effects, often compared to chemotherapy. These cumbersome treatments were administered and overseen by hepatologists. Mind you, Hepatologists are liver specialists; they are not infectious disease specialists. Given Hepatitis C’s slow asymptomatic progression, the livers of their patients were often in advanced stages of scarring. While taking care of Hepatitis C, hepatologists also had to care for the state of the liver and manage side effects of the treatment. If the treatment did not lead to a cure, care shifted to monitoring the liver on its slow progression towards liver transplantation. 79
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Critical Issues in Science, Technology and Society Studies Conference Proceedings of the 17th STS Conference Graz 2018
Title
Critical Issues in Science, Technology and Society Studies
Subtitle
Conference Proceedings of the 17th STS Conference Graz 2018
Editor
Technische Universität Graz
Publisher
Verlag der Technischen Universität Graz
Location
Graz
Date
2018
Language
English
License
CC BY-NC-ND 4.0
ISBN
978-3-85125-625-3
Size
21.6 x 27.9 cm
Pages
214
Keywords
Kritik, TU, Graz, TU Graz, Technologie, Wissenschaft
Categories
International
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Critical Issues in Science, Technology and Society Studies