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BREAST CANCER ADVOCACY in CANADA by Sharon Batt Submitted in Partial Fulfilment Of FROM GRASS ROOTS TO PHARMA PARTNERSHIPS: BREAST CANCER ADVOCACY IN CANADA by Sharon Batt Submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy at Dalhousie University Halifax, Nova Scotia February 2012 © Copyright by Sharon Batt, 2012 DALHOUSIE UNIVERSITY INTERDISCIPLINARY PhD PROGRAM The undersigned hereby certify that they have read and recommend to the Faculty of Graduate Studies for acceptance a thesis entitled “FROM GRASS ROOTS TO PHARMA PARTNERSHIPS: BREAST CANCER ADVOCACY IN CANADA” by Sharon Batt in partial fulfillment of the requirements for the degree Doctor of Philosophy. Dated: February 7, 2012 External Examiner: _________________________________ Research Supervisor: _________________________________ Examining Committee: _________________________________ _________________________________ _________________________________ _________________________________ Departmental Representative: _________________________________ ii DALHOUSIE UNIVERSITY DATE: February 7, 2012 AUTHOR: Sharon Batt TITLE: From Grass Roots to Pharma Partnerships: Breast Cancer Advocacy in Canada DEPARTMENT OR SCHOOL: Interdisciplinary Ph.D. Program DEGREE: Ph.D. CONVOCATION: May YEAR: 2012 Permission is herewith granted to Dalhousie University to circulate and to have copied for non-commercial purposes, at its discretion, the above title upon the request of individuals or institutions. I understand that my thesis will be electronically available to the public. The author reserves other publication rights, and neither the thesis nor extensive extracts from it may be printed or otherwise reproduced without the author’s written permission. The author attests that permission has been obtained for the use of any copyrighted material appearing in the thesis (other than the brief excerpts requiring only proper acknowledgement in scholarly writing), and that all such use is clearly acknowledged. _______________________________ Signature of Author iii DEDICATION In memory of my parents, Jessie A. Harding Batt and Robert J. Batt, passionate believers in education and social justice. iv TABLE OF CONTENTS LIST OF TABLES ........................................................................ IX LIST OF FIGURES ........................................................................ X ABSTRACT ................................................................................ XI LIST OF ABBREVIATIONS USED ..................................................XII GLOSSARY ............................................................................. XIII ACKNOWLEGEMENTS ............................................................... XIX CHAPTER 1 INTRODUCTION ...................................................... 1 1.1 PREFACE: A JOURNEY FROM ACTIVISM, CONTINUED .......................... 1 1.2 THE PROBLEM ...................................................................... 3 1.3 RESEARCH QUESTIONS ........................................................... 8 1.4 OUTLINE OF CHAPTERS ........................................................... 9 1.5 LITERATURE REVIEW: AN INTERDISCIPLINARY VIEW ........................ 13 1.5.1 Science and Technology Studies................................... 13 1.5.2 Health and Pharmaceutical Policy ................................. 20 1.5.3 Bioethics .................................................................. 23 1.5.4 The Social Science Literature ....................................... 27 1.5.5 Three Cross-Cutting Fields .......................................... 34 1.6 TYPOLOGIES OF HEALTH AND PATIENTS’ ADVOCACY GROUPS .............. 40 1.7 INTEGRATION OF RESEARCH QUESTIONS AND THE LITERATURE REVIEW .. 46 CHAPTER 2 RESEARCH GOALS AND METHODS USED ................. 51 2.1 INTRODUCTION: LINKING RESEARCH GOALS TO METHODS ................ 51 2.2 THE IMPORTANCE OF STUDYING GROUPS HOLISTICALLY ................... 51 2.2.1 Choosing a Movement for Case Study ........................... 52 2.2.2 Choosing Groups for Study .......................................... 55 2.2.3 Narrative Techniques .................................................. 58 2.2.4 Breast Cancer Treatment Drugs as Actors ..................... 62 2.2.5 Visual Maps Using VUE Computer Software .................... 67 2.3 STUDYING CHANGES OVER TIME ............................................. 68 2.3.1 The Rationale for Studying Changes Over Time .............. 68 2.3.2 Actor-Network Theory (ANT) and Discourse Analysis ....... 69 2.3.3 A Framework for Studying Discourses over Time ............ 74 2.4 STUDYING MACRO-SYSTEM INFLUENCES ..................................... 80 2.4.1 Incorporating Macro-system Influences ......................... 80 v 2.5 AUTHENTICITY, VALIDITY, AND QUESTIONS OF ETHICS ..................... 83 2.5.1 Moral Positionings: Ethics and the Question of Relativity .. 85 2.5.2 Ethics Approval, Consent and Engaged Research ............ 88 2.6 OVERVIEW AND PRESENTATION OF RESULTS ................................. 89 CHAPTER 3 BIOGRAPHIES OF THREE GROUPS ........................... 92 3.1 THREE GROUPS, THREE STANCES ON PHARMA FUNDING ................... 92 3.1.1 Group A: Critical Advocacy to Prevent Cancer ................ 96 3.1.2 Group B: Down-home Peer Support and Education ....... 130 3.1.3 Group C: “Patients, Know your Rights!” ...................... 159 3.1.4 Summary and Analysis of the Group Biographies .......... 189 CHAPTER 4 THREE POLICY LANDSCAPES PRE-1991 .................. 204 4.1 THREE INTERLOCKING POLICY LANDSCAPES ................................ 204 4.2 GOVERNMENT-FUNDED HEALTH CARE IN CANADA ......................... 205 4.2.1 History and Character ............................................... 205 4.2.2 The Health Care System and Breast Cancer Treatment .. 212 4.3 PHARMACEUTICAL COMPANIES AND DRUG REGULATION IN CANADA .... 215 4.3.1 Canada in the World System of Drug Regulation ........... 215 4.3.2 Why Regulate Drugs? ............................................... 216 4.3.3 The Public versus Private Regulatory Cycle .................. 216 4.3.4 Three Countries Create Regulatory Regimes ................ 219 4.3.5 A Modern Pharmaceutical Industry Emerges ................ 222 4.3.6 Modern Food and Drug Laws in Canada ....................... 223 4.3.7 Post-Kefauver: Canada’s Spotlight on Price ................. 229 4.3.8 Failures of the Drug Approval System ......................... 235 4.3.9 Post-Marketing Surveillance ...................................... 240 4.3.10 Internal Breakdown: Public Safety and the Même ...... 242 4.3.11 Breast Cancer Drugs and Regulation in Canada .......... 245 4.4 THE RISE OF HEALTH-RELATED PRESSURE GROUPS IN CANADA ......... 251 4.4.1 First and Second Wave Feminist Health Discourses ....... 253 4.4.2 Group Politics and the Feminist Discourse on Drugs ...... 256 4.4.3 Glimpses of Funding from “Big Pharma” ...................... 262 4.4.4 AIDS Patients’ Activism–Setting A Precedent ............... 268 4.4.5 An Absent Actor in the Women’s Health Movement ....... 271 4.5 ROSE KUSHNER’S “NATURAL ALLIANCE” WITH TAMOXIFEN’S MAKER ... 273 4.6 SUMMARY ...................................................................... 279 CHAPTER 5 THREE PERIODS IN A MOVEMENT ......................... 280 vi 5.1 INTRODUCTION ................................................................ 280 5.2 1989 TO 1996: THE GRASSROOTS PERIOD .............................. 284 5.2.1 New Sites of Knowledge and Action ............................ 284 5.2.2 First Translation: Parliamentarians Study Breast Cancer 288 5.2.3 Mobilization: The National Forum on Breast Cancer ....... 295 5.2.4 Groups Debate “Big Pharma’s” Overtures .................... 301 5.2.5 Breast Cancer Treatments and Group Advocacy ........... 312 5.2.6 Second Translation: Together to an End ...................... 329 5.2.7 Intersections: Activist Groups and Other Worlds ........... 336 5.3 1997-2001: THE CONTESTATION PERIOD ................................ 343 5.3.1 Introduction ............................................................ 343 5.3.2 Government and Policy Actors ................................... 345 5.3.3 Pharma Funding “Refusers” Go Public ......................... 349 5.3.4 The Pharmaceutical Industry Creates a Strategy .......... 360 5.3.5 Inside the Groups: Debates about Pharma Funding ....... 364 5.3.6 Canada’s Cancer Plan and Pharma Funding .................. 388 5.3.7 Interpretation of the Contestation Period ..................... 395 5.4 2002-2011: THE PARTNERSHIP PERIOD .................................. 399 5.4.1 Introduction ............................................................ 399 5.4.2 The Drug Advocacy Discourse Changes Course ............. 401 5.4.3 Pockets of Resistance to Neoliberal Policies .................. 417 5.4.4 The Social Construction of Four Drug Treatments ......... 425 5.4.5 Processes of Social Construction ................................ 446 5.5 CONCLUSION: THE MAKING OF TWO ACTOR-NETWORKS ................ 459 5.6 SUPPLEMENT: A SOCIALLY CONSTRUCTED PHARMACOPOEIA ............. 465 CHAPTER 6 CONCLUSIONS AND POLICY CONSIDERATIONS ...... 470 6.1 INTRODUCTION ................................................................ 470 6.2 THE RESEARCH QUESTIONS .................................................. 471 6.2.1 Discursive Struggles within the Groups ....................... 472 6.2.2 Shifting Alliances and the Question of Co-optation ........ 475 6.2.3 Ethical Codes Governing Pharma Partnerships .............. 477 6.2.4 Group Advocacy, Drug Policy and the Public Interest ....
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