Oireachtas Joint and Select Committees
Wednesday, 22 June 2022
Joint Oireachtas Committee on Health
Rare Diseases: Discussion (Resumed)
Dr. Maggie De Block:
That is okay. First, the Deputy asked if there is a different procedure for reimbursement for orphan drugs or other drugs. We have the same but the issue is having enough data. That is why we need the contracts because, sometimes, the orphan drug does not have enough patients treated before it enters reimbursement. Of course, it is difficult to decide based on small patient numbers. These are rare diseases and there might only be five patients in a country and, as Belgium is a small country, we might only have two patients. That is why we are working together with other countries.
On the numbers that we tried to find for the committee, we found them for the orphan drugs but not for all drugs. Because of coronavirus, our administrations have been overwhelmed with work, in particular the health department, and there has been a delay in giving statistics. When we have them, we can send them to the committee. The administration did everything to continue other care because there were not just patients with coronavirus but also those with other needs.
Concerning the patient organisations for orphan drugs, they are well organised in Belgium. They are not around the table when the negotiations take place, as they would like to be, but there is transparency and they have the information. There are so many organisations and they cannot all be around the table. Everyone will ask for himself and because everything in health is important, whether it is one disease or another, the moment people are involved on behalf of their family or themselves, it becomes very emotional. That is why we choose transparency but not to put them around the table of the commission which decides. Of course, it would be good if we could harmonise the criteria in the Benelux countries, which would also give more transparency to the organisations. It would also allow the data and information to be valid in the five countries, which would give them more information.
The faster we can achieve our commitments, the more favourable the reimbursement agreements and the better they will be. We know the prices of medicines are rising, certainly for orphan drugs. It is a big concern for our administration that the budget is always higher every year. We can save lives and we can have better quality of life for certain patients, but we know that, at the end, everyone has to pay the bill, which is a big concern. For that, we need a new pharmaceutical pact but, up to now, the current Minister has not arrived at the end of the negotiations.
I hope my collaborator noted the Deputy’s questions and that I have answered most of them.
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