This story is part of our series of articles on metastatic breast cancer.
Metastatic breast cancer (MBC) kills half a million women in worldwide every year, yet progress on the quality of life and survival time of MBC patients remains elusive. MEPs addressed the need to improve patient outcomes with a policy roadmap launched on Tuesday (17 October).
Western Europe has the highest incidence of breast cancer in the world, and Germany, France, Italy and the UK are among the worst affected. But while patients with breast cancer, if caught at an early stage, have a 99% chance of survival, the reality for patients with MBC is very different.
Almost one in three people diagnosed with breast cancer will develop metastasis, and one in ten will already be at an advanced stage of cancer when first diagnosed – with less than a one-in-five chance of surviving.
On top of the incurability of the disease, there are numerous physical, emotional, financial and administrative struggles that MBC patients need to overcome in their daily lives.
“Getting cancer is a question of bad luck or bad genes, but living with cancer is a real punishment”, said Suzanne Leempoels, who shared her experience of living with MBC since 2013.
“I’m aware that a lot of policymakers are really concerned and involved and strive to improve the quality of life of cancer patients […]. Yet, well-intended guidelines and laws often turn out to be ambiguous and in the end overshoot the mark once they are really implemented, the real struggle is not against the disease, but against omnipotent, un-empathetic authorities’, she added.
The quality of life for MBC patients, however, can be improved. This was the focus of the debate held on Tuesday in the European Parliament, hosted by Austrian MEP Karin Kadenbach from the Socialists and Democrat (S&D) group and the Italian centre-right European People’s Party (EPP) MEP Alberto Cirio. Adina-Ioana Valean MEP EPP, who is also chairwoman of the Parliament’s Environment, Public Health and Food Safety Committee gave a comprehensive overview of the European Parliament work on breast cancer.
A policy roadmap
The event launched a policy roadmap on MBC, developed by an international and multi-disciplinary group of experts including healthcare professionals, patient advocates, policymakers and industry representatives.
“MBC patients have been forgotten for a long time by the scientific community, policymakers, the media and even advocacy groups,” said Dr. Cardoso, a leading clinician and breast cancer advocate.
“A lot of data has been accumulating on the specific needs of these patients indicating what we need to develop in terms of policy, better quality of life, and most of all, also prolonging the duration of life, so improving survival.”
The policy roadmap is built exactly on those specific gaps, issuing policy recommendations that are needed to improve the outcomes of MBC patients in four areas: building a knowledge-based approach to care; collection and use of real-world data; access to care and treatment and patient support; participation and empowerment.
The document highlights the need for informing improved governance and delivery of metastatic breast cancer care through better understanding of the specific burden of the disease, increasing adherence to science-based guidelines and adopting a more joined-up approach to the entire patient pathway.
It is necessary to address the need for the collection and use of high-quality real-world data for research, reimbursement, and organisation of care, experts claimed.
In order to reduce inequalities and delays of access to care and treatment, treatment of advanced breast cancer should be based on best practices informed by the most up-to-date scientific research and standards, but also on patients and carers’ feedback.
This is why experts called for their involvement in “health technology assessments” – a holistic process taking into consideration the social, economic, organisational and ethical issues of health intervention, fed into policy decisions.
Finally, it is necessary to establish systems to support and empower patients and informal carers through shared decision-making, not only at the level of their disease but also in the development and modernisation of national cancer plans.
The member states’ crucial role
Asked what is needed to improve knowledge of and funding for MBC treatment, MEP Valean told EURACTIV.com, “People with MBC have so many needs for day to day life – psychological, in terms of administration, work, their families – we have to have guidelines on how to deal with these people and how to support them in their day-to-day lives.”
“And I do believe that raising attention on the topic will encourage the development of research on this particular disease and on cancer in general. The roadmap is good because we are trying to develop cooperation.”
She said that sharing and selecting best practices on a European level, investing in cooperation across member states is good, but financially, there is only so much the EU can do, because healthcare is a national responsibility.
“For the treatment itself, commitment must come from member states themselves.”
Karin Kadenbach, member of the European Parliament's health committee and the Expert Working Group on metastatic Breast Cancer, commented, “I am very happy with the outcome of today's event. We have seen how much a group of stakeholders can achieve if they share knowledge and join forces.”
“It has been an enriching experience for me to work for the last months with colleagues across the metastatic breast cancer pathway. We have a policy roadmap ready to be implemented at EU and national levels. I am confident that this roadmap will not only raise awareness among policymakers but will also drive change for the benefit of patients and thus improve the lives of metastatic breast cancer patients,” she added.