By Susan Knox, Europa Donna Executive Director.
The European Breast Cancer Coalition promotes European breast care standards and the patient perspective as co-organiser of 11th European Breast Cancer Conference
The European Breast Cancer Coalition advocates gathered among the more than 2,500 participants at the 11th European Breast Cancer Conference (EBCC11) held in Barcelona, Spain from 21-23 March. EUROPA DONNA (ED) advocates chaired sessions and presented on topics ranging from European policy and breast care guidelines, to metastatic breast cancer (MBC) advocacy, and hereditary breast cancer. They also learned about the latest advances in imaging, diagnosis – including prognostics and gene sequencing – and treatment of the disease from leading experts. This conference is unique in that EUROPA DONNA is a co-organiser of EBCC in equal partnership with the European Organisation for Research and Treatment of Cancer (EORTC) and the European Society of Breast Cancer Specialists (EUSOMA).
A special ED session was dedicated to the European Commission Initiative on Breast Cancer (ECIBC), a project that represents the future of European standards for breast cancer care. The EU Commission is creating guidelines for breast cancer screening and diagnosis and a quality assurance scheme for the entire continuum of breast cancer services. The initiative has now launched its first recommendations on the ECIBC web hub. EUROPA DONNA members are active participants in this initiative and, alongside representatives from the European Commission at EBCC11, they described the progress to date and what to expect so that advocates and others are prepared toimplement it in their countries. It is essential that this project be fully understood so that it can be implemented across Europe.
MBC was the topic of another ED Session: “Advocacy for MBC: Progress and Promise”. Fatima Cardoso spoke about the progress on the ABC Global Alliance, an initiative of the European School of Oncology (ESO). Evi Papadopoulos, ED President and Co-chair of the conference, gave a comprehensive description of what it means to live with MBC, stressing especially the need for clear consistent empathetic communication with doctors and health care professionals throughout the journey. I followed Evi discussing the ways in which EUROPA DONNA addresses the challenges and needs of women with MBC.
We have made a commitment to include MBC in all of our meetings and policy projects to ensure that we make faster progress on seeing that women with MBC have access to services they need and have a right to receive in their countries. Also, we have launched a website and conducted our first MBC advocacy conference. Our policy, information, and education programs all play an important role in this effort. Above all, providing education to MBC advocates so that they can use their own voices to effectively advocate for improved services in their countries is essential; with a SPARC grant ED will hold its first MBC advocacy training course for MBC advocates in September 2018. Finally, Nicole Zernik of ED France spoke of the MBC programme in France that provides an excellent model for others to replicate. They hold monthly coffee hours in a local café for MBC patients. They have also developed an excellent brochure providing an overview of the disease and what women need to know when this diagnosis takes place.
On another note, a recurring theme throughout EBCC11 was the advances made in identifying genetic factors in women and mutations in the tumours themselves that help identify risks of cancer, risks of recurrence and response to therapy. ED Deputy CEO Karen Benn spoke about patients’ preferences in those with BRCA mutations or a family history of breast cancer. She also sat on the panel for the Manifesto session on Genetic Risk Prediction Testing in Breast Cancer, where the audience voted unanimously in favour of the proposed Manifesto that seeks to set quality standards for direct-to-consumer genetic testing, which will be published as a full article in a medical journal.
We are pleased that EBCC11 was such a success and once again demonstrates the importance of multi-disciplinarity in improving outcomes for breast cancer and the role of patient advocates in improving breast cancer services.