November 27, 2017
Guest blog by Suzanne Leempoels who was diagnosed with metastatic breast cancer 6 years ago. Her story raises important questions for EU policymakers.
We all believe that we are living in a humane, solidarity society, where people living with a deadly disease get all the medical and non-medical support and care they need. We also do believe that no efforts are spared to make their lives as comfortable as possible and that no legislation can ever hamper the discovery of lifesaving new treatments. That was at least my firm belief until I got my breast cancer diagnosis almost 6 years ago. Unfortunately, due to lack of in-depth knowledge of most policy makers, the daily reality of living with metastatic breast cancer brought me down to earth with a bump. It takes courage to demystify sacred cows, but let us be honest: how much do the general public and policy makers really know about the everyday heavy burden and consequences of living with MBC?
Metastatic breast cancer patients are spending all their energy on surviving and enduring their treatment. Moreover, we do have to give up essential parts of our identity: our roles as mothers, wives, caregivers, breadwinners and employed women. We feel useless and guilty for letting our families, our employers and colleagues down. We rarely showcase how bad we really feel. We rather prefer keeping up appearances and protecting our families as much as we can from our misery. We are often too ashamed to openly talk about the financial havoc MBC has caused. In fact, we are wounded souls in failing and eventually dying bodies: physically too exhausted and emotionally too dismayed to really raise our voices and commend ourselves as a direct and a principal stakeholder of our own lot and future.
Hence, we are overlooked and forced into a position of well-intended tutelage. This regularly leads to a demotivating and counterproductive environment of uncertainty, unsafety and insecurity. Decision making is too often based on an incomplete and incorrect macro-vision that is more than once distorted by open or disguised financial and economic reasoning. We need stable and patient-empowering long-term solutions instead of fast changing short-term decisions full of inconsistencies that very often even conflict with common sense itself.
The present top-down approach has two very pernicious and dangerous consequences: it will further amplify the false and too optimistic image the general public and policy makers have of MBC and it forces MBC patients in the position of a powerless plaything in a struggle between various strong stakeholders defending opposite interests. In the present situation we are too much surviving and too little truly living. The only way to create efficient, sustainable, respectful win-win solutions for all stakeholders is a bottom-up approach based on complete information and insights in the real situation of all stakeholders. This is a prerequisite to align different visions into a holistic solution.
Correct knowledge of the real situation is one major problem. Data issues are another one.
MBC data are a huge blind spot in a data-driven world. We are living in an era characterised by an unprecedented exponential growth of available data that provide a powerful tool for enterprises to finetune their commercial strategies and to predict our behaviour. The lack of MBC data is alarming since it will impede the detection and analysis of micro-details and patterns that go beyond averages. Data science can reveal the clues to develop innovative, personalised and more efficient treatments with less side effects, more quality of life, longer periods without disease progression and maybe even disease-free survival. Data science could speed up the discovery of new treatments by years. Our future and lives depend on these discoveries, as we, MBC patients, cannot afford to wait for years since we are all running out of time.
We must now leverage the available data and urgently start collecting the missing clinical and non-clinical data. Therefore, data owners should cooperate and no longer monopolise their databases and policy makers should consider what is most important: protecting the privacy of the present MBC patients or allowing privacy exceptions to save the lives of future MBC patients. My answer as a MBC patient and mother to that last question: nothing matters more than the lives and the present and future health of my daughters.Guest contributor