Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Professor Michael Barry:

I will answer that question. I will say that it does not just go one way. For example, the drug Orkambi, for cystic fibrosis, was available here for nearly two years before it was available in the United Kingdom. So it does not always go one way.

In relation to this drug, as I mentioned to Senator Rabbitte we assess this in the rapid review system as fast as we possibly could, and literally within nine days. At the moment we are waiting for the manufacturer to give us the evidence and I am told that this is going to be very quick. All I can say is that we will do that assessment as quickly as we possibly can.

When will it be available? That is a challenging question. The answer is I do not know. What I can tell the committee is that I would hope that if we get the information that we require from the manufacturer that we will have our opinion on this, hopefully, by the end of the year or the start of 2026. We will have that done very quickly, I can assure the Senator. Then it would be the decision of the Health Service Executive to decide whether it was going to pay for the drug or not. We will not be found wanting with this. We understand the issues here. The Senator laid them out very well and I understand it completely.

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