Oireachtas Joint and Select Committees

Wednesday, 22 June 2022

Joint Oireachtas Committee on Health

Rare Diseases: Discussion (Resumed)

Dr. Maggie De Block:

I totally agree with the Deputy and that is why I created the BeNeLuXA initiative in the first place. It is because the patient is waiting and it is also for the future impacts. It was Paul Janssen of Johnson & Johnson who said that we must work at it and find more therapies because the patient is waiting. We should be able to make a statement to the European Commission but we need to do this together. We must work together with as many countries as possible. We could also mobilise the patient organisations on this issue because they also have representation at European Union level. This is also what we did to create the network for the academics for the rare diseases. The more we are, the better it will be heard. This is what we could do now when, I hope, we come out of Covid times. This is the moment to make that statement: that we see we are not an island. This is also how we can break the tradition that the pharmaceutical firms always go to the bigger countries. They are the reference for the pricing and the little countries are not attractive in that regard. I will certainly inform our liberal friends in the European Union. We have the ALDE group which is the Alliance of Liberals and Democrats for Europe. It would be good if it could come from all sides of the European Parliament hemicycle that they should join. People may have their political colour and conviction but when it comes to patients, we are all the same. Inside we are all the same so we should not make any difference.

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