ADVOCACY FOR AND WITH WOMEN LIVING WITH MBC

Metastatic Breast Cancer (MBC)*, also called advanced breast cancer (ABC) and secondary breast cancer, means that the cancer has spread from where it started in the breast to other parts of the body. It is also referred to as stage IV breast cancer. Women with Metastatic Breast Cancer (MBC) face different challenges compared to women with earlier stages of breast cancer and today many of their needs are unmet and not well understood. For this reason EUROPA DONNA – The European Breast Cancer Coalition (ED) has made MBC a priority for its future advocacy activities. This section of our website is dedicated exclusively to advocacy for and with women living with MBC.

 

ED has been introducing MBC elements into all of our education, information and policy projects, ensuring that MBC advocacy topics are included in EBCC (European Breast Cancer Conference) programmes, EUROPA DONNA Pan European Conference programmes, as well as workshops for women with MBC at our Advocacy Leader Conferences of 2014 and 2016. In 2017 we will launch the 1st EUROPA DONNA Metastatic Breast Cancer Advocacy Conference on 9-11 June.

EUROPA DONNA has also served on the Breast Cancer Patient Advocacy Committee of the Advanced Breast Cancer Conferences 2, 3 and 4. We have produced several publications highlighting the needs and concerns of women with MBC and are actively engaged in advocating for the rights of women with MBC at European institutions: the European Parliament, Council of Europe and European Commission.

ED is working with Members of the European Parliament to improve breast cancer services and to raise awareness of the needs of women with MBC. On July 22, 2015, the European Parliament adopted the written declaration “On the Fight Against Breast Cancer in the EU” (0017/2015), which calls for the implementation of measures across Europe to fight this disease, the leading cause of death in European women aged 35 to 59. A majority of Members of European Parliament (MEPs) signed the declaration, which was co-authored by 10 MEPs and backed by ED. Among other measures, the declaration 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.

In 2013 Europa Donna published the Metastatic Breast Cancer Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Diagnosis. This annex outlines best practice for MBC as defined in the EU Guidelines and this is therefore the document we use to advocate for improved services throughout Europe. It has now been translated into Portuguese, Czech and German languages and is currently being translated into Italian.

EUROPA DONNA is a stakeholder in the ECIBC (European Commission Initiative on Breast Cancer). This European Union initiative, for which ED had advocated, began in 2015 and is being coordinated by the European Commission’s Joint Research Centre; it is overseen by DG Santé. This project will define a quality assurance programme that can be implemented by countries covering the entire breast cancer pathway from screening and diagnosis to treatment, rehabilitation, follow up and palliative care. Services and support needed for MBC patients will be included in this project and implementation should begin in 2019.

 

 

*EUROPA DONNA has chosen to use the term Metastatic Breast Cancer rather than advanced breast cancer or secondary breast cancer as a result of a 2014 survey we conducted asking our advocates with MBC which term they prefer; response overwhelmingly favoured the term MBC