I am a nurse. That is my first education, and it will never leave me. It has taught me empathy of the kind that not just compassion and pity, but the ability to step into a painful situation of a person or family to assess what should be done and how. And then say it empathically, responsibly and professionally.
This empathy – the unsentimental yet heartfelt search for the best, realistic option for the patient – is what I carry with me as a European politician. A sort of political empathy which seeks to keep a cool head, and a warm heart, while avoiding ‘falling into’ the belief that nothing will ever succeed in European healthcare without surrendering all competences to the EU.
Healthcare is primarily a national responsibility. Healthcare systems must fit into their given Member State with all its individual cultural and societal characteristics. It can only create value if it is at eye level with its citizens. This requires that responsibility for the healthcare system is anchored in the relationship between those directly in charge, the citizens and patients, families and surrounding society.
“If organized across the EU, a community for the child and their families could emerge”
That is why there are natural boundaries to how uniform European healthcare systems can become. However, there are exceptions. Exceptions which should be released from the Member States’ limitations as soon as possible.
Europe is shaped by Christianity and thus by the conviction that we should be measured by how we treat the smallest, the weakest and those who are rarely in focus. Therefore, I would recommend a health union for children with rare diseases. To achieve this no treaty changes are needed: Only the political will.
This article was commissioned as part of a series focused on Rare Disease Day 2023, in partnership with Takeda, Eurordis, Efpia and Eucope. Click here to read the full report
It may be that your or your neighbour’s child has a rare disease, which will affect the rest of their life – a life which very well can be longer than ever before. The child could have cancer or another serious disease, which thankfully is only the case for relatively few children in each Member State. But if organized across the EU, a community for the child and their families could emerge. Furthermore, this could create better conditions for healthcare professionals, scientists, life science developers and the innovative entrepreneurs across professions to collaborate and deliver the best possible result. If we create the framework for this.
Let us create an EU health union – a real single market if you will – for addressing rare diseases, and let us begin with children.