Transforming Breast Cancer Together
TBCT
Transforming Breast Cancer Together’ is a multi-stakeholder platform bringing together policymakers, organisations and industry members deeply committed to alleviating cancer as a policy priority to improve breast cancer care in the EU.
ID: 534472141591-89
Lobbying Activity
Meeting with Lina Gálvez (Member of the European Parliament, Committee chair)
13 Nov 2024 · Breast Cancer
Meeting with Antonella Sberna (Member of the European Parliament)
9 Oct 2024 · Highlighting Inequalities in Breast Cancer Screening, Diagnosis, and Treatment in the EU, Gender Equality Week
Meeting with Regina Doherty (Member of the European Parliament)
4 Jul 2024 · Breast cancer research
Meeting with Catherine Amalric (Member of the European Parliament) and European Brain Council and
18 Mar 2024 · Renew Europe Workshop on Healthcare in Europe and the patient-centric approach
Meeting with Erik Poulsen (Member of the European Parliament, Rapporteur) and Nobody Left Outside Initiative
20 Jul 2023 · NCD
Meeting with Marc Angel (Member of the European Parliament)
14 Jul 2022 · Breast cancer
Response to Proposal for a Council Recommendation on long-term care
29 Mar 2022
• The multi-stakeholder initiative ‘Transforming Breast Cancer Together’ (TBCT) welcomes the opportunity to input into the Commission’s action to improve high-quality, accessible, and affordable care services for people in need of long-term care and urges the Commission to keep the needs of breast cancer patients in mind
• Breast cancer remains one of the most common cancers in the EU, with the mortality rate for breast cancer decreasing as a result of the availability of successful and effective screening and treatments. While currently, no cure is known for advanced breast cancer, therapeutic advances have also allowed patients with metastatic forms of cancer to live longer lives
• In this context, quality of life has increasingly become the focus in cancer care both from a medical and societal perspective, having a significant impact on disease outcome. As such, TBCT would like to highlight the need to take QoL into consideration in the design of long-term care in the context of the European Care Strategy
• To ensure high-quality care, we urge that breast cancer patients (both early and metastatic) are treated by experienced multidisciplinary teams, as outlined in the EBCP. TBCT emphasises the need for the CCCs to be equipped to address the specific needs of breast cancer patients (including advanced and metastatic)
• Long-term breast cancer care would benefit from certified specialised healthcare professionals to provide the best quality of care, ultimately affecting outcomes and QoL. Besides technical training, good communication is crucial to ensure that patients receive adequate timely information
• TBCT also calls on the EC to develop appropriate guidelines to raise awareness on the importance of telemedicine for chronic conditions and long-term diseases, and highlights those civil services, supporting patients and carers, as essential for disease management
• The long-term support to people with breast cancer should also consider the ‘after’ period, where many survivors still face long-term symptoms and impairments after their treatment ends, such as fatigue, thinking and memory problems, and peripheral neuropathy, making it more difficult to remain in or re-enter the job market. These symptoms are even more severe for advanced / metastatic patients, who have to endure continuing treatment
• TBCT also encourages research into the potential uniqueness of treatment related illnesses (cardiovascular, psychological etc.) relating to survivorship to find targeted approaches
• TBCT would also like to emphasise that metastatic cancer care should go beyond palliative care. Due to scientific advances people with breast cancer can live longer and better lives, and this should be considered in any long-term care strategy
• Additionally, long-term care services need to include the work dimension. Having the ability to work – if they wish to - is very important for breast cancer patients and survivors as it can restore a sense of normality and wellbeing as well as contribute to financial stability. TBCT urges the Commission to develop and implement long-term care programs that support breast cancer patients and survivors’ access to care in a flexible manner, taking into consideration the issue of returning to and / or maintaining work
• TBCT highlights the impact that breast cancer can have on the mental health of people. Often, people with breast cancer suffer from anxiety and stigma. As such psychological support should also be offered in an accessible and affordable manner along all the process and in in a long-term care strategy
• Lastly, TBCT wants to draw attention to the issue that breast cancer often affects women in the prime of their lives when they have both career and childcare responsibilities. With women being the main carers for family members, TBCT urges the Commission to take this social dimension into consideration to ensure that people with breast cancer have access and availability to high-quality aftercare
Read full responseResponse to Cancer Screening Recommendation
22 Feb 2022
• Breast cancer remains one of the most common cancers in the EU. Early detection and diagnosis are pivotal to increasing chances of successful and effective treatment and ultimately, survival of breast cancer patients. However, screening programmes implementation remains inconsistent and low, requiring urgent measures to ensure improvement
• The Transforming Breast Cancer Together Initiative (TBCT) welcomes the European Commission’s ambition to attaining 90% coverage on breast cancer screening and early detection and the opportunity to provide inputs to the review of the Breast Cancer Screening Recommendation
• This is essential to achieve better clinical prognosis, lower mortality rates and reduce treatment costs and wider economic impact. TBCT recognises the enormous benefits to women’s health, especially, if coupled with a similar screening target for the second most common type of cancer among women, cervical cancer
• While the Recommendation helped improve diagnosis and outcomes in breast cancer, screening tests and methodologies have advanced since its adoption requiring an update of the Recommendation and Guidelines based on diagnostic technology and evidence developments. A mechanism for continuous/more frequent reviews reflecting screening and diagnostic advances should be included, as well as screening recommendations for high risk and mutation carrier women
• The EC should aim to establish a European platform for screening programmes that follow predetermined standards, are regularly audited and in line with evidence-based guidelines. The platform should set indicators and facilitate reporting and best practice sharing
• Screening needs to be implemented systematically, covering the whole target population, and following best-practice guidelines. The guidelines should include quality indicators to cover the structure, process, and outcome of the screening programmes to measure their effectiveness
• Screening should be embedded in an integrated healthcare setting, and positive screening results should lead to a rapid referral to diagnostics and treatment by a multi-disciplinary medical team
• The EU should build mechanisms for better and more uniform implementation of existing recommendations, including dedicated human and financial resources, training, capacity building, communications campaigns informed by behavioural and communication science, monitoring systems ensuring frequent and transparent outcomes assessment, and a continuous overview of the coverage and performance screening across the EU, helping to address low uptake and inequalities
• To ensure awareness and participation, it is of utmost importance to build links and synergies with actions supporting information to women and wider population about screening benefits, with tailored approaches and consistent communications (not only scientific language) for better compliance with testing and frequency via funded campaigns at EU and national level
• While establishing a new initiative is commendable and should be done when it comes to closing gaps in screening programmes across Europe, a multitude of initiatives already exist supporting early detection. Building on these and avoiding directing similar resources to parallel processes, TBCT calls on EU institutions to join efforts to encourage Member States’ national, population-based screening programmes, set up according to the European Commission Initiative on Breast Cancer (ECIBC) screening guidelines, as mentioned by the Knowledge Centre on Cancer
• TBCT welcomes stakeholder involvement provided through this consultation and encourages the EC to ensure structured involvement and consideration of patient perspectives through consultations, stakeholder groups, in the next phases and throughout the program monitoring
• Lastly, investments in early detection and implementation of specific tools to improve early diagnosis are recommended. Notably, for women in the EU diagnosed at an early/localised stage
Read full response