24
Nov
2021
Watch
A European Action Plan Against Rare Diseases (debate)
Madam President, Commissioner, I am speaking to you tonight with this mother in mind, one of the many mothers I met yesterday morning in the European Parliament. She works in Parliament’s Research Service and her son has a very rare metabolic disease. So in his case, the diagnosis was made and it is a victory. Treatment exists and is very rare. As you pointed out, Commissioner, 95% of rare diseases are still untreated. It is after that, for this mother, it becomes more complicated. This Belgian family had to move to Germany to find the only specialist able to prescribe and give them this treatment. The priority today is therefore to get out of this operation in silos to reflect on the scale of a life, that of patients and their families. Diagnosing, treating and facilitating access to care is an indivisible whole and these patients, vulnerable to all, are entitled to it. This lack of coherence between European health policies was denounced by Rare 2030, a pilot project that I launched in 2017 with several colleagues to imagine, together with researchers and patients, the policies of the future for rare diseases. This unprecedented two-year experience has been managed by your services, Commissioner, and the diagnosis is clear: we need a European action plan to unify our policies and bring them coherence in the medium and long term. The planets are aligned; Parliament is with you and the Member States are with you. To push the issue back in 2023 is actually to refer it back to the next Commission. And another Belgian mother, Isabelle, will conclude my speech for me: "There is no plan B," she told me, "there is no life B for a child fighting a rare disease." In other words, we need to act now.