Health Advocacy, Inc.

How Pharmaceutical Funding Changed the Breast Cancer Movement

By Sharon Batt
Categories: Social Sciences, Sociology, Science, Technology & Society, Gender & Sexuality Studies, Women’s Studies
Publisher: UBC Press
Hardcover : 9780774833844, 396 pages, June 2017
Paperback : 9780774833851, 396 pages, September 2019
Ebook (PDF) : 9780774833868, 396 pages, June 2017
Ebook (EPUB) : 9780774833875, 396 pages, June 2017
Ebook (MobiPocket) : 9780774833882, 396 pages, June 2017

Table of contents

Preface

Introduction: The Secret War among Patient Groups

Part 1: Canada’s Health Care System Transformed – Neoliberalism and the Erosion of the Welfare State

1 Canada’s Health Policy Landscape

2 Health Advocacy Organizations in Canada

Part 2: From Grassroots to Contestation to Partnership – The Breast Cancer Movement and Big Pharma

3 Beginnings of the Breast Cancer Movement

4 Advocacy Redefined

5 The Movement Fractures over Pharma Funding

6 Pharma Funding as the New Norm

7 Advocacy Groups and the Continuing Struggle over the Pharma-Funding Question

Conclusion: The Fight for Medicine’s Soul

Appendix: Organizations and Their Members

Notes

Index

In this unsettling analysis of the breast cancer movement in Canada, health activist, scholar, award-winning journalist, and cancer survivor Sharon Batt investigates the changing relationship between patient advocacy groups and the pharmaceutical industry, as well as the contentious role of pharma funding.

Description

Health activist, scholar, award-winning journalist, and cancer survivor Sharon Batt investigates the relationship between patient advocacy groups and the pharmaceutical industry as well as the contentious role of pharma funding. Over the past several decades, a gradual reduction in state funding has pressured patient groups into forming private-sector partnerships. This analysis of Canada’s breast cancer movement from 1990 to 2010 shows that the resulting power imbalance undermined the groups’ ability to put patients’ interests ahead of those of the funders. A movement that once encouraged democratic participation in the development of health policy now eerily echoes the demands of the pharmaceutical industry.

Reviews

Health Advocacy Inc. is an extremely stimulating and timely book benefitting from the author’s scholarly skills, but also from her particular standpoint as a breast cancer activist.

- Grazia De Michele, doctoral researcher in history at the University of Genoa

[Health Advocacy, Inc.] is not an easy read, but it should be devoured by anyone, from any nation, who wants to put together a similarly formidable argument for transparent and genuine discussion about what we should – indeed, must – do differently to prevent and treat human suffering and disease.

- Nancy MP King, Wake Forest University

What makes the book stand out from the rest of the vast literature on these dynamics is the wealth of personal vignettes and in-depth case studies…

Academics, funders, policy researchers and campaigners of all political stripes will find a lot to like, learn and think about in this meticulously researched and well-written book.

- Till Bruckner, founder of TranspariMED and advocacy manager for Transparify

[Batt’s] superb new book is a deep scholarly account of the way that pharmaceutical funding has warped the patient advocacy movement into a tool for medical capitalism ... Few writers are better placed to document this story ... Would-be rebels and reformers should take to heart the cautionary lessons of Health Advocacy, Inc.

- Carl Elliott

In sum, Batt’s is a terrific book, a focused study of a policy area that has many lessons for all concerned with effective democratic policy making and the consequences of public-private partnerships and donor influence.

- Peregrine Schwartz-Shea, University of Utah

Batt`s scholarly approach allows opposing voices ... [her] goal is to start a conversation and encourage discussion. She readily achieves this effect, and any cancer charity currently facing a funding dilemma would be well served by her book.

- Isabel Lokody

Batt’s revelations about the relationship between patient advocacy groups and the pharmaceutical industry are vital and disturbing.

- Lisa Cumming

Batt has written a compassionate account of the debates among breast cancer activists in Canada and internationally about whether to accept money from the pharmaceutical industry … Now more than ever we need advocates who put drug safety, effectiveness and affordability above the interests of pharma.

- Colleen Fuller, cofounder of Pharma Watch Canada

To Batt’s credit, she never falls into the partisan trap of framing the issue as a moralistic struggle of good versus evil. While she stakes out a strong position, she treats the topic with the nuance it deserves. Drawing on a wealth of ethnographic material, she chronicles how decent people and committed organisations struggled to support and represent breast cancer patients over many years, despite financial constraints and funder attempts at co-optation.

- Till Bruckner

Batt makes a powerful case ... To this reviewer’s knowledge, this is the only study tracking the process of neoliberal reform and its cumulative impact on the same groups within civil society over such a long time frame and is ground breaking for that reason alone.

- Nick Acheson, University of Dublin Trinity College

[Health Advocacy Inc.] expands the conversation into new terrain, exploring how industry infiltrates patient advocacy groups employing the same tools that have been so successful with doctors…

- Anne Kingston

Health Advocacy Inc. occasionally feels like a Russian novel. It has plot twists and dissidents whose tactics and rebellions against drug companies are nothing short of heroic. Yet Batt eschews sensational tropes about the evils of big pharma in favour of interviews and archives describing the gradual demise of the breast cancer movement.

- Deborah Ostrovsky