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:

There is a process, outside of the standard process, where somebody can apply for exceptional funding. That is where cases like this would be considered. In other words, there is an opportunity to make the case and say we need this to be funded simply because of what the Deputy says, that it makes sense to be out of hospital and for the family to be at home.

I was not involved in the decision-making. All I can say is that is what I know of this case. Our role is very simple. If we are asked to say what the value for money of a drug is, that is fine, but we were not asked to look at that drug. I apologise, but I cannot tell the Deputy the ins and outs of it. I know of it and I know of the situation. There is an exceptional funding mechanism where people do not have to go into the process. That is the one I would use. Very often, people may not be able to negotiate around the process or even know about it.

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