Oireachtas Joint and Select Committees
Wednesday, 22 June 2022
Joint Oireachtas Committee on Health
Rare Diseases: Discussion (Resumed)
Dr. Maggie De Block:
As I said, we asked Germany and France to also co-operate but the bigger countries are stronger in negotiation because, as the Deputy has said, the numbers of patients are much higher and there would be more interest for the companies to have reimbursement in Germany or France than in Ireland or in Belgium, for example. The bigger countries do not need us and they do not want to join us, even though this is still within the European Union and it is a problem that bigger countries have other prices. Of course, if this is due to their economic situation, for countries such as Hungary and Romania for example, I would understand this because there are other problems there with regard to getting access to medication such as antibiotics. I understand that this is because of economic reasons. For Germany and France, however, one cannot say that. This is how it has always been. I do not agree with it. I believe that a German patient is a patient who needs treatment but an Irish patient is the same patient who has the same needs. For me this is the key. There should be much more co-operation for patient care in the European Union. As the committee is aware, it is not for nothing that in the EU member states, there is no agreement to take care of the patient care together. This was also one of the problems when we had the Covid situation. The Commission had to negotiate for the first time for the price of the vaccines. We can see that it was not a success at first. It took them all so much time to negotiate with the firms.
Yes, one could also do a shared risk, if one begins to negotiate in the earlier phase such as phase 3 or phase 4. Then one could to do risk sharing also with the pharmaceutical firms. However, in the negotiations for the BeNeLuXA initiative we have always said it must be safety first. We must be sure that we are helping the patients and not giving medication that could have secondary effects or which may make their condition worse. It is safety first, but if it is safe and they can give us the safety ticket, then we should do more efforts with countries together.
It is always the same, however, that the big countries say "We do not need you". I believe that it could benefit their patients too, and certainly when it comes to rare diseases. This is why we also created the rare diseases network. It is a network of co-operation of our academics and researchers. It did not get us too far but we did create a big network concerning rare diseases. Indeed, in the smaller countries we only have a few of the patients there.
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