More than a bleeding nuisance: haemophilia in Aotearoa New Zealand

Abstract

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.