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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
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
- Tagungsbände
- Technik