Haemophilia in Aotearoa New Zealand: More Than A Bleeding Nuisance, 1st Edition (Hardback) book cover

Haemophilia in Aotearoa New Zealand

More Than A Bleeding Nuisance, 1st Edition

By Julie Park, Kathryn Scott, Deon York, Michael Carnahan

Routledge

218 pages

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pub: 2019-01-29
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Description

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.

Table of Contents

Chapter 1 A bleeding nuisance in Aotearoa New Zealand

The human experience of haemophilia: an introduction 1-5

Bio-genetic haemophilias 1-6

The historical context of haemophilia in Aotearoa New Zealand 1-7

Living with haemophilia 1-8

Treatment for haemophilia

The view from now

The ‘Bleeding nuisance’ studies 1-11

Beginning the research

Research design

Research methods 1994-5

Update studies

Reflections on research

Transformation in society and in health services 1-17

Health sector changes

Dividing care: haemophilia and the RHA system

A national health system, and more fragmentation

Organisation of the book 1-26

Chapter 2 ‘Pretty normal really’

Different haemophilias: an introduction 2-1

Research narratives 2-3

Learning haemophilia 2-6

Medical condition or abuse

Mild haemophilia

Caring for a child with haemophilia

He’s a boy first: not living haemophilia

Having treatments

Blood-borne infections

Inhibitors

Parents as liaison officers

Adults working and living with haemophilia 2-28

Haemophilia and getting older 2-32

Conclusion: local biology and different haemophilias 2-33

Chapter 3 Blood and sacrifice: sex, gender, and haemophilia

Rugby: a key symbol of masculinity 3-4

Striving to have ‘a normal life’ 3-11

Women in the haemophilia community: carriers and carers 3-13

Caring: ‘I haven’t been to medical school for seven years’

Carriers with haemophilia

Conclusion: gendered changes and different haemophilias 3-24

Chapter 4 New networks and technologies of care: different haemophilias

The difference that time makes 4-1

Technologies for treatment 4-5

A history: from snake venom and peanuts to clotting factor concentrates

Recombinant clotting factor

On demand and prophylaxis at home and elsewhere

Supply: health service as technology

Networks of collaborative care

Gene therapy

Understandings of gene therapy

Qualified acceptance

The context of acceptance

Obstacles to the introduction of gene therapy

A post-script

Technologies for testing 4-19

Testing for carriers

Embryonic carriers

Identity, care, and choice

Testing the yet-to-be-born

Cultural contexts

Prenatal tests for haemophilia in Aotearoa New Zealand

Deliberations

Testing

Not testing

Men discuss testing

Making decisions

Is haemophilia serious?

Considering the wellbeing of the child

And what about the good of society?

Conclusion 4-39

Chapter 5 The shadow on our lives: hepatitis C in the haemophilia community

Justin and hepatitis C: an introduction 5-1

HIV 5-4

Learning together about hepatitis C 5-6

Symptoms and their cause: an insidious effect

To tell or not to tell

To treat or not to treat

Treatment options and decisions for hepatitis C

Hepatitis C and social suffering 5-19

ACC as a branch of the state

Local biologies: haemophilia, HIV, and hepatitis C in international contexts 5-28

Conclusion 5-30

Chapter 6 Joint action: asserting rights, inclusion, and equity through voluntary association

Emergence of the Haemophilia Society 6-3

Viral politics 6-6

Working with government: lobbying and partnership 1983-1990

New professional role for the society

Watchdog tactics in extraordinary times: contestation and lobbying 1990-2003

‘Suddenly, we were on the outside of the tent’

Will to justice: demanding rights to fair compensation

From Society to Foundation

An active citizen approach

Tactics of resistance: When all else fails…2005-2006

National restructuring of haemophilia care 6-22

Equitable access to blood products

Rights to quality haemophilia care

National standards

Regionally equitable standards of care

Restructuring of national haemophilia care

Conclusion 6-29

Chapter 7 Conclusions

Deon and Mike: change and cycles in living with haemophilia 7-2

What does it mean now to live with a bleeding disorder in Aotearoa New Zealand?

Towards the future

Kathryn and Julie: different haemophilia and local biology in Aotearoa New Zealand 7-9

Different haemophilia and local biology

Studying haemophilia / studying Aotearoa New Zealand

About the Authors

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).

About the Series

Routledge Studies in Health and Medical Anthropology

Learn more…

Subject Categories

BISAC Subject Codes/Headings:
SOC002000
SOCIAL SCIENCE / Anthropology / General