The five key areas where advocacy for MBC is needed today are awareness, information, access to best treatment, support, registries and data collection

AWARENESS

Much research has been done on public awareness of MBC and many organisations are currently conducting campaigns to raise awareness and educate the public about metastatic disease, and publishing reports such as Global Status of Advanced / Metastatic Breast Cancer: 2005 – 2015 Decade Report and websites like A Story Half Told. Information is available on many ED country websites in local language, including ED Czech Republic, ED France, ED Italy, ED Netherlands, and ED Switzerland. ED Ireland is participating in a research project to better understand the needs of women with MBC in Ireland with the Irish Cancer Society. ED Israel publishes stories about people with MBC in newspapers, on TV, radio and other media channels. ED Italy conducted a survey of women living with MBC that investigated people’s experience of the disease and its impact on daily life. ED at the European level has held various workshops at four Pan European conferences and two workshops specifically designed for and attended by women with MBC from 16 countries who have informed us concerning this issue. Workshops, sessions at the European Parliament and at other meetings, the follow-up reports and our own dissemination of these, are helping to increase awareness of issues and concerns of women living with MBC.

 

INFORMATION

Women with MBC feel that they do not get adequate information when they are diagnosed nor do they feel that communication with doctors is adequate. With the help of noted clinicians, ED France has developed a pamphlet in French language addressing some of these information needs; this document has been translated into English and Maltese by ED Malta and into Hebrew by ED Israel. ED Italy provides detailed information on MBC through an interactive library on their website featuring information tools targeted to three different audiences: women who have not been diagnosed with breast cancer, women with early breast cancer and women living with MBC; site visitors can choose to enter into discussions and interactions with experts, associations and patients. Several ED groups organise regular conferences or meetings for people with MBC, providing overviews of treatments and new developments and the opportunity to share experiences. Many of these countries also provide helplines and publish pamphlets, resource packs and other documents to provide answers to questions and give information.

 

ACCESS TO BEST TREATMENT INCLUDING SPECIALIST BREAST UNITS (SBUS) AND MULTI-DISCIPLINARY TEAMS (MDTS)

ED has been advocating for the implementation of specialist breast units for many years at all European institutions. We have written an MBC Annex on the EU Guidelines outlining women’s rights for these services and have translated it into several languages. Working with a group of members of the European Parliament, we drafted language for the written declaration “On the Fight Against Breast Cancer in the EU” of 2015 to specifically include the rights of women with MBC. Since the passage of the declaration, further meetings at the Parliament are being held to constantly update policy leaders on progress in this area. The ECIBC European Commission Initiative on Breast Cancer will include all aspects of breast cancer including MBC in its quality assurance scheme project. ED is an on-going stakeholder in this endeavor. Finally, ED is launching its 1st EUROPA DONNA MBC Advocacy Conference 9-11 June 2017 to further highlight issues concerning MBC and to help MBC advocates in many countries to address them.

 

SUPPORT

Many ED groups are actively engaged in carrying out and developing various types of support programmes for women with MBC: ED Italy has an MBC working group as well as a very popular blog entitled “Fight, live, keep smiling,” written by five women living with MBC that gets approximately 16,000 page views each month. ED Czech Republic has a support group that regularly meets to help women cope with this disease. ED Sweden have weekend and week-long retreats enabling women with MBC to go to a scenic location together to spend time and share common ideas and concerns. ED Norway has begun weekend gatherings for women with MBC. ED Portugal provides psychosocial consultations for women with MBC. ED Malta and ED Turkey have begun special sub-groups solely for women with MBC to meet and share experiences. ED Ireland has launched a Connect MBC Network, an online peer-to-peer support project for women with MBC.

 

REGISTRIES AND DATA COLLECTION

Breast Cancer Care in the UK has developed a task force and a campaign and publication to advocate for data collection across health providers in their country. ED Sweden has published articles on the issue of lack of registration of MBC patients to generate awareness of the problem. Several ED groups have conducted surveys and questionnaires to ascertain patient experience and need, and to report on gaps in care, treatment, support and information.