Addressing the Issues
The five key areas where advocacy for MBC is needed today are awareness, information, access to best treatment, support, registries and data collection
In a 2021 Europa Donna survey, 90% of MBC advocates polled indicated that there is a need for better understanding of the disease by the public. To address this need, EUROPA DONNA – The European Breast Cancer Coalition has launched a new, on-going social media campaign aimed at the European public, especially women; it is designed to spread factual information on MBC and simultaneously provide our national groups with materials they can adapt and use to run their own campaigns in their languages at the national level. With this campaign we will reach as many people as possible with education about the physical, psychological, social and personal life issues those who have been diagnosed with MBC have to face. Moreover, videos of advocates with MBC will be spread widely through our social media channels that will also be shared by our national groups to raise awareness of MBC.
In addition, many Europa Donna national groups have developed their own awareness initiatives, including podcasts and Facebook and Instagram Live events, magazine articles and television interviews on the subject, events held annually on 13th October (MBC awareness day), and conducting campaigns to raise awareness and educate the public about metastatic disease.
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. Europa Donna – The European Breast Cancer Coalition works to change this by providing scientifically accurate and up-to-date best-practice information at our annual MBC advocacy conferences, at our other conferences, courses and events, on our website and in our printed materials and social media channels that is targeted for MBC advocates at the national level to spread to their local Europa Donna groups, as well as to their members and to people in their countries. In this way, information is disbursed through our network of 47 member countries.
According to a 2021 Europa Donna survey, 93% of responding advocates said that patient organisations in their countries provide people with information on MBC. Types of information cited included emotional support, practical guidance, follow-up, end-of-life care, occupational and financial guidance, medical information, and telephone consultations.
Moreover, numerous 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 also provide helplines and publish pamphlets, resource packs and other documents to answer questions and give scientifically accurate 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 includes all aspects of breast cancer including MBC in its quality assurance scheme project; ED is an on-going stakeholder in this endeavor.
Finally, ED has been holding annual MBC Advocacy Conferences since 2017 to further highlight issues concerning access to best treatment, including the use of SBUs and MDTs, and to provide tools to MBC advocates in many countries to address them.
Many ED groups are actively engaged in carrying out and developing various types of support programmes for women with MBC. Examples include MBC peer support, both virtual and face-to-face groups; telephone helplines operating by peer supporters; rehabilitation and recreational courses for families affected by MBC; holiday weeks and weekends with support activities for people with MBC; donations of prostheses, wigs and accessories; assistance so patients can receive medical consultations, radiation therapy and chemotherapy for which they would not otherwise have access; monthly support groups; psychological support groups; seminars on palliative care at home for carers.
Registries and Data Collection
In a 2021 Europa Donna survey, MBC advocates were asked to list the most important advocacy issues regarding the disease in their country and the most nominated choice was fighting for the creation of a National Cancer Registry that includes MBC on secondary diagnosis. This issue is critically important since accurate data on the number of people living with MBC cannot be found in many countries in Europe and around the world as most countries’ cancer registries (if they even exist) do not contain this information. Because this is the case it is impossible to effectively evaluate whether those with MBC receive adequate support, treatment and services.
EUROPA DONNA – The European Breast Cancer Coalition has been strongly advocating for National Cancer Registries that include MBC and we provide education on the issue at our conferences and events so that our advocates can lobby for the same at the national level. ED also collects data on a regular basis from MBC advocates in our member countries to ascertain patient experience and need, and to report on gaps in care, treatment, support and information.