“The bad girls of breast cancer”. Breast cancer and the U.S. grassroots group Breast Cancer Action, 1990-2010

This thesis focuses on the history of breast cancer in the United States at the turn of the twentieth-first century as seen through the eyes of the grassroots organization Breast Cancer Action (BCA). Since the middle 1990s, the alliance between corporations – from pharmaceutical giants to cosmetic companies - and non-profit entities turned breast cancer into a cause célèbre in whose name millions of dollars have been raised mostly through product sales and sports events. However, only a few years earlier, several grassroots patient-led organizations had started to leverage women’s lived experience of breast cancer with the aim of exposing the alleged lack of progress in the understanding and handling of the disease as well as its unprecedented rise in incidence, defined of epidemic proportions. BCA, founded in 1990 in San Francisco, was among the most prominent of these groups. In addition, as a result of the adoption of a pioneering policy of not accepting donations from corporations contributing to or profiting from cancer, the organization established itself as the watchdog of the breast cancer movement and its activists became known as the “bad girls of breast cancer”. The thesis is divided into five chapters, each covering one of the key aspects of breast cancer addressed by BCA since inception until 2010, when Barbara Brenner, its first full time Executive Director, retired. The first chapter discusses research politics; the second analyses BCA’s take on the two conflicting notions of prevention characterizing the history of cancer in the United States; the third covers issues related to treatment; the fourth focuses on the discovery in the 1990s of two genes – known as BRCA1 and BRCA2 - that, if mutated, can increase the risk of developing breast cancer and its consequences; the last chapter covers the transformation of breast cancer in a marketing tool allowing corporations – helped by breast cancer organizations – to increase their profits without having to innovate, by simply positioning themselves as supporters of the cause of breast cancer. During its first fifteen years of life, BCA vigorously opposed the idea that breast cancer could be the exclusive appanage of a biomedicine too focused on waging war to aberrant cells through molecular biology and genetics to look more broadly at the surrounding environment both inside and outside women’s bodies. In the view of the organization, breast cancer was a social justice matter requiring systemic change, a means to a much broader end concerning not only those living with the disease and their loved ones, but society as whole.