BREAST CANCER ADVOCACY IN CANADA by Sharon Batt Submitted in partial fulfilment of the

635 Pages·2012·4.74 MB·English

by  Sharon Batt

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: _________________________________

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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

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DEDICATION
In memory of my parents, Jessie A. Harding Batt and Robert J. Batt,
passionate believers in education and social justice.

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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
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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
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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 ..... 479
6.2.5 Analytic Concepts .................................................... 482
6.2.6 Typologies of Groups and Partnerships ........................ 485
6.2.7 Transformations within the Policy Landscape ............... 488
6.3 POLICY CONSIDERATIONS .................................................... 491
6.3.1 Directions for Policy Change ...................................... 495
6.4 CONCLUSION ................................................................... 496
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ENDNOTES ............................................................................ 501
REFERENCES .......................................................................... 541
APPENDIX A CRITICAL ADVOCACY’S CORPORATE POLICY ........... 610
APPENDIX B SB’S EXCHANGE WITH THE HUB ........................... 612
APPENDIX C THE PATIENT’S, KNOW YOUR RIGHTS! CHARTER .... 615

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LIST OF TABLES

Table S1 Social Construction of High-dose Chemotherapy
with Stem-Cell Rescue ......................................... 466
Table S2 Social Construction of Aromatase Inhibitors:
Arimidex® (anastrozole), Aromasin® (exemestane),
and Femara® (letrozole) ...................................... 467
Table S3 Social Construction of Xeloda® (Hoffman-LaRoche,
capecitabine) + Tykerb™ (GlaxoSmithKline [GSK],
lapatinib) ........................................................... 468
Table 1 Summary of Research Goals and Methods Used ....... 585
Table 2 Members of Groups A, B and C Mentioned in Text
and their Views on Pharma Funding ....................... 587
Table 3 Communities Testifying at the Parliamentary Sub-
Committee Hearings on Breast Cancer and the
Même Implant 1991-1992 .................................... 590
Table 4 Breast Cancer and Health-related Groups Cited in
Text .................................................................. 591
Table 5 Pharma Funding Discourses (by Theme) within
Breast Cancer Groups .......................................... 594
Table 6 Prescriptive Texts, Contestation Period
(1997-2001) ....................................................... 596
Table 7 A Different Prescription: Discourses and Counter-
Discourses about Funding from the Pharmaceutical
Industry ............................................................. 597
Table 8 Prescriptive Texts, Partnership Period
(2002-Present) ................................................... 599

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LIST OF FIGURES

Figure 1 Using Epstein’s Typologies to Map Typologies
of Groups ........................................................... 601
Figure 2 Hypothetical Advocacy Opportunities in the Life
Cycle of Medications ............................................ 602
Figure 3 A Hypothetical Actor-Network Map of a Breast
Cancer Environment ............................................ 603
Figure 4 Actors and Themes for the Narrative Critical
Advocacy to Prevent Cancer .................................. 604
Figure 5 Actors and Themes for the Narrative Down-Home
Support and Education ......................................... 605
Figure 6 First Translation: Grassroots Groups Appear before
the Parliamentary Committee ................................ 606
Figure 7 Mobilization Following the National Forum on
Breast Cancer ..................................................... 607
Figure 8 Key Events in the Grass Roots Period ...................... 608
Figure 9 Translation at Together to an End ........................... 609

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