La Trobe

The trouble with normalisation: Transformations to hepatitis C health care and stigma in an era of viral elimination

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posted on 2023-10-12, 06:56 authored by Dion Kagan, Kate SeearKate Seear, Emily LentonEmily Lenton, Adrian FarrugiaAdrian Farrugia, K valentine, Sean MulcahySean Mulcahy, Suzanne FraserSuzanne Fraser
Modern health-care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as ‘HIV exceptionalism’. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS-related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other ‘boutique’ public health strategies. The recent availability of highly effective, direct-acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its ‘normalisation’. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C-affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.’s (2017, International Journal of Drug Policy, 44, 192–201) theorisation of stigma, and Rosenbrock et al.’s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99-202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma-reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C.

Funding

Australian Research Council, Grant/Award Number: DP200100941

History

Publication Date

2023-09-01

Journal

Sociology of Health and Illness

Volume

45

Issue

7

Pagination

20p. (p. 1421-1440)

Publisher

Wiley

ISSN

0141-9889

Rights Statement

© 2023 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for the Sociology of Health & Illness. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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