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Haemophilia in Aotearoa New Zealand provides a richly detailed analysis of the experience of the bleeding disorder of haemophilia based on longterm ethnographic research. The chapters consider experiences of diagnosis; how parents, children, and adults care and integrate medical routines into family life; the creation of a gendered haemophilia; the use and ethical dilemmas of new technologies for treatment, testing and reproduction; and how individuals and the haemophilia community experienced the infected blood tragedy and its aftermath, which included extended and ultimately successful political struggles with the neoliberalising state. The authors reveal a complex interplay of cultural values and present a close-up view of the effects of health system reforms on lives and communities. While the book focuses on the local biology of haemophilia in Aotearoa New Zealand, the analysis allows for comparison with haemophilia elsewhere and with other chronic and genetic conditions.
Julie Park is Professor Emerita of Anthropology at the University of Auckland, New Zealand. Kathryn M. Scott works in social research and advocacy. She is an Honorary Research Fellow in Anthropology at the University of Auckland, New Zealand. Deon York works in the health sector. He is currently President of the Haemophilia Foundation of New Zealand (HFNZ) and on the Board of Directors of the World Federation of Hemophilia (WFH). Michael Carnahan has worked in health services management and is former President of the Haemophilia Foundation of New Zealand (HFNZ).
Chapter 1 A bleeding nuisance in Aotearoa New Zealand; Chapter 2 'Pretty normal really'; Chapter 3 Blood and sacrifice: sex, gender, and haemophilia; Chapter 4 New networks and technologies of care: different haemophilias; Chapter 5 The shadow on our lives: hepatitis C in the haemophilia community; Chapter 6 Joint action: asserting rights, inclusion, and equity through voluntary association; Chapter 7 Conclusions
