Breast Cancer Advocacy across Europe through the work and development of EUROPA DONNA, the European Breast Cancer Coalition

Abstract

Advocacy—the art of representing or promoting a cause or purpose on behalf of oneself or others—can include influencing policy, affecting legislation and changing attitudes. This is not an easy concept in some European countries and indeed the word ‘advocacy’ is not capable of direct translation into some languages. This is one of the challenges that EUROPA DONNA, the European Breast Cancer Coalition, has had to address to present its raison d’etre during its short life as Europe’s breast cancer advocacy organisation. Advocacy by women advocating for women’s health began in many countries during the second half of the twentieth century. Breast cancer advocacy as we know it has been around since the early 1990s but organisations by and for breast cancer patients and those close to them go back much further than that, starting in the United States. ‘Reach to Recovery’ [1] was founded in 1952 as a support group for women who had had mastectomies and continues today as an international organisation. In the 1970s organisations such as ‘Y Me’ and the Susan Komen Foundation [2] began to add a political dimension to the provision of breast cancer information and support, and around this time wellknown women such as Betty Ford, Happy Rockefeller and Shirley Temple Black began to speak out about having the disease. This raised awareness, enabling public discussion, and as a result women increasingly felt able to identify themselves publicly as breast cancer patients and survivors. NABCO (The National Alliance of Breast Cancer Organisations) was founded in 1986 and The National Breast Cancer Coalition (NBCC) in 1991. The idea of campaigning politically for better services and for significantly more research to be carried out came in the wake of the effective advocacy activities of AIDS activists in the 1980s, and, in the United States, women began to adopt the same tactics in relation to breast cancer [3]. In European countries, too, small groups were forming to offer support and better services in all aspects of breast cancer. For example in the United Kingdom, the Women’s Nationwide Cancer Control Campaign (WNCCC) was formed in 1965 and Breast Cancer Care (previously The Mastectomy Association) in 1968, in Sweden, The Swedish Association for Breast Cancer Societies (BRO) around 1975, and in Italy, ANDOS in 1976, to mention just four. Also, in the early 1990s, Professor Umberto Veronesi, breast cancer surgeon in Milan, Italy, saw the power of women’s advocacy for breast cancer in the United States, diverting $4m from the defence budget into breast cancer research. Professor Veronesi felt that the women of Europe should also have a say in their breast cancer journey and he set about exploring how to start this initiative. After one or two unsuccessful early approaches, he spoke to a group of women at a meeting in Venice. Following this it was planned to launch a new organisation at the European Society of Mastology (EUSOMA) [4] meeting in Paris in February 1993. Having heard of this possibility, several women working in the breast cancer field in Europe attended this meeting. They heard the proposal and offered to take up the challenge, but made it very clear that this had to be a women’s organisation run by women. This was accepted and a small steering group was formed under the leadership of Gloria Freilich from the United Kingdom. Thus EUROPA DONNA (ED), the European Breast