Over the past several decades, a gradual reduction in state funding has pressured patient groups into forming private-sector partnerships, raising an important ethical question: do these alliances ultimately lead to policies that are counter to the public interest? Health activist, scholar, and cancer survivor Sharon Batt examines the issue by investigating Canada’s breast cancer movement from 1990 to 2010.

 

Health Advocacy, Inc. dissects the relationship between the companies that sell pharmaceuticals and the individuals who use them, drawing links between neoliberalism and corporate financing and the ensuing threat to the public health care system. Combining archival analysis, interviews with advocacy and industry representatives, and personal observation, Batt argues that the resulting power imbalance continues to challenge 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. Batt’s thorough account of this shift defines the stakes of activism in public health today.

Sharon Batt's profile page

Sharon Batt is an independent scholar and adjunct professor in the Department of Bioethics at Dalhousie University and a research affiliate of the university’s Technoscience and Regulation Research Unit. A survivor of breast cancer, she cofounded Breast Cancer Action Québec in 1991.

 

Batt was a founding editor of Canada’s first feminist magazine, the Edmonton-based Branching Out, and for six years was an editor for the Quebec consumer magazine Protect Yourself. Her documentary on cancer for CBC Radio’s Ideas won the Major Armstrong award; her book, Patient No More: The Politics of Breast Cancer, won the Laura Jamieson Award for feminist nonfiction.

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.

Alberta Views

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.

On Think Tanks

[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.

Hastings Center Report

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.

Lancet Oncology

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.

Somatosphere

[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…

Literary Review of Canada

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.

Voluntary Sector Review

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

Maisonneuve

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.

The HealthWatch Newsletter

[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.

Indian Journal of Medical Ethics Online

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.

Herizons

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.

Journal of Empirical Research on Human Research Ethics