On patients, prescriptions, and profits
Nancy MP King
Published online: January 8, 2018
Sharon Batt, Health advocacy, Inc: How pharmaceutical funding changed the breast cancer movement, UBC Press; 2017, pp 383, USD 44.13 (e-book), ISBN 978-0-7748-3384-4.
Sharon Batt’s study of the relationship between breast cancer advocacy groups and the pharmaceutical industry in Canada is exhaustively researched, formidably detailed, analytically nuanced, riveting, and all too familiar. With over 50 pages of endnotes and an index of more than 30 pages, this book will satisfy the most demanding policy wonks. At the same time, however, extensive quotations from her interviews of key actors in the advocacy movement help to make both the policy narrative and the arguments on all sides of the issues understandable and accessible. Perhaps most importantly for many readers, although focused on Canada, Batt’s analysis of the changes in governmental priorities, drug costs, and patients’ expectations clearly has applicability all around the globe.
As a cancer survivor, journalist, and academic, Batt herself has decades of experience participating in and observing the development of effective advocacy, from the era of medical paternalism to regulatory changes designed to speed drug development and approval. Yet she frames this history with some important and often neglected origin stories: the US FDA’s admirable caution about thalidomide and HIV/AIDS activists’ important realisation that accelerating drugs’ approval should not take priority over the effort to ensure their efficacy and safety. This careful consideration of the need to balance competing priorities characterises the volume, and should serve as a model of good argument to those on all sides of these complex issues.
The book’s dense chapters describe the health policy landscape in Canada and a complete history of Canadian breast cancer advocacy in order to address in detail how the question of whether to accept industry support fractured the movement. Batt expends considerable effort in demonstrating that the decision to accept industry funding should not be demonised; instead showing how changes in government policy, patients’ desires and needs, and industry marketing strategies combined to make the receipt of “unrestricted educational gifts” potentially reasonable in some instances and virtually inevitable in many.
This is not to say that Batt’s own view isn’t clear. Throughout, and especially in the four fascinating case examples she details in Chapter 7 and in her eloquent concluding chapter, she argues convincingly that pharmaceutical marketing strategies have succeeded in convincing patients (and many policymakers) worldwide that newer treatments are better treatments, that faster approval and broader availability of new treatments are essential components of just health care, and that small chances of life extension are always worth pursuing. The strategies she describes are familiar to those who follow these issues: misleading characterisations of data, use of highly imperfect surrogate endpoints, failures of full disclosure, subtle (and not-so-subtle) influences on advocacy messaging. But she also reflects on the ease with which the focus on treatment crowds out concern for prevention, thereby diminishing funding prospects for research into the causes of breast cancer. Moreover, when contemporary freemarket capitalism and small-government policymaking come together, the social justice considerations that could promote health equity in either prevention or treatment either diminish greatly or effectively disappear. (One thing that she can be forgiven for leaving out of this discussion is the very fact that disproportionate attention now goes to breast cancer, which is not the cancer most likely to affect women.)
Humans everywhere are ready to believe in miracles, and pharma is ready to offer us a chance at them – but at far too great a cost. Many scholars, researchers, physicians, and patient organisations are now ready to question that cost, and to refocus medical science on the public interest and the public’s health. Batt’s book 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.