Today’s post comes from EUROPA DONNA – The European Breast Cancer Coalition which is an independent non-profit organisation whose members are affiliated groups from countries throughout Europe. The Coalition works to raise awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research.
Over the last few years, EUROPA DONNA – The European Breast Cancer Coalition (ED) - has been fighting to introduce metastatic breast cancer (MBC) in educational, informational and policy fora. From creating tools and resources for advocates on topics such as guidelines and clinical trials in metastatic breast cancer (MBC) on their newly developed ED MBC website, ED has also worked to include MBC advocacy topics not only on its’s own activities and events , but also on the agendas of other organizations’ and conferences. Following these activities, Susan Knox, the Executive Director of EUROPA DONNA seized the need to bring advocates together from around Europe and the world to advance the five key areas where advocacy for MBC is needed today: awareness, information, access to best treatment, support, registries and data collection.
To this end, ED organised in June 2017 the 1st Metastatic Breast Cancer Advocacy Conference. This was a unique opportunity for 60 metastatic breast cancer advocates from 34 countries living with MBC and/or those conducting MBC programs to network and gain valuable training to help them improve MBC services in their countries. The first group of videos with MBC advocates coming from this conference will be available on advocates-speak-out page from mid -July 2017.
Participants also heard about the latest in MBC treatments and research from Fatima Cardoso, Director, Breast Unit of the Champalimaud Clinical Center, Lisbon, Portugal. They also discussed successful MBC advocacy strategies and best practices from and for advocates, for example, MBC patients’ needs as revealed in a new MBC blog page in Italy, a monthly face-to-face meeting of MBC patients organized by ED France, in addition to the barriers and opportunities policy makers face in MBC data collection in the UK.
In her presentation on Successful MBC Strategies, Deputy CEO Karen Benn underscored the importance of raising awareness of the needs of women with MBC among policymakers. She pointed out the support received from the European Parliament (EP) back in July 2015, when the EP adopted the written declaration (WD)“On the Fight Against Breast Cancer in the EU” (0017/2015). The Written Declaration calls for the implementation of measures across Europe to fight this disease, which is the leading cause of death in European women aged 35 to 59. The declaration also calls for Member States to ensure that people with MBC have access to, and are treated in, a Specialist Breast Unit (SBU) and that their ongoing needs for care and psychosocial services are coordinated and supported by the SBU, as per the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis (4th edition). This is a critically important point for which EUROPA DONNA will continue to advocate strongly in the coming years.
The event closed with a special advocacy showcase where campaign videos, brochures and other materials developed and produced by organisations participating in the conference and specifically related to MBC, were spotlighted.
These are just few of the initiatives that ED envisages to continue in the future, asking for patients’ needs to be understood and incorporated in the decision making process in the EU and beyond.
For more information on MBC and EUROPA DONNA: mbc.europadonna.org and www.europadonna.org
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Rebecca Llewellyn, ED Austria and Jet Van der Meijden, ED Netherlands
Fatima Cardoso- Director, Breast Unit of the Champalimaud Clinical Center, Susan Knox, ED CEO, Olivia Pagani, ED Executive Board member, Evi Papadopoulos, ED Vice-President
Susan Knox, ED CEO and Karen Benn, ED Deputy CEO
 EUROPA DONNA Pan European Conference programmes, workshops for women with MBC at the ED Advocacy Leader Conferences of 2014 and 2016