Julie Park - Haemophilia in Aotearoa New Zealand: More Than A Bleeding Nuisance

Haemophilia in Aotearoa New Zealand provides a richly detailed analysis of the experience of the bleeding disorder of haemophilia based on long-term 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).

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Haemophilia in Aotearoa New Zealand

Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan

www.routledge.com/Routledge-Studies-in-Health-and-Medical-Anthropology/book-series/RSHMA

First published 2019

by Routledge

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2019 Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan

The right of Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan to be identified as authors of this work has been asserted by them in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988.

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.

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A catalogue record for this book is available from the British Library

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ISBN: 978-0-367-13444-0 (hbk)

ISBN: 978-0-429-02652-2 (ebk)

Typeset in Sabon LT Std

by Cenveo Publisher Services

To all people with haemophilia and those
who care for them.

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Members of the haemophilia community have shared their stories and sometimes their lives with us in the hope that this research may help others. Our wish is that this book will fulfil this hope. We thank you all: people with haemophilia, clinical specialists, haemophilia nurses, outreach workers, council members, and staff of the Haemophilia Foundation and the many volunteers.

Anthropology colleagues: Christine Dureau, Ruth Fitzgerald, Judith Littleton, Maureen Molloy, Cris Shore, Samuel Taylor Alexander, Susanna Trnka, Catherine Trundle; graduate students in Reading Medical Anthropology (2014): Natalie Daddy, Sarah Haggar, Lakna Jayasinghe, Julie Neville, Sally Raudon, Paul Robertson, Shirin Tuiti; Foundation officers: Richard Chambers, Chantel Lauzon; haemophilia specialists, Julia Phillips and B.J. Ramsay read and commented on earlier versions of individual chapters or the whole manuscript. We are extremely grateful to Laura McLauchlan and Sarah Haggar who brought their fresh eyes to different iterations of the whole manuscript. We acknowledge Elizabeth Berry and John Benseman who helped initiate this research. We thank you all and shoulder responsibility for the remaining errors and infelicities.