Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Photo of Pádraig RicePádraig Rice (Cork South-Central, Social Democrats)

That brings us to towards the end of our considerations on this. I will offer my own reflections on it. As Deputy Buckley said, at one end we have patients who are really desperate, really want access to medicines and really need them, and on the other end we have those who want to make a lot of money off it, with a lot of political pressure on both sides and a difficult process in the middle. A lot of political pressure is put on people around this and there is a lot of keen interest from members on it. It is a difficult one to tease out and to figure out exactly how to do it right. I do not envy the position that people are in who are trying to get the best model with both of those things and a lot of pressure around it. No doubt it is a matter we will come back to again. Many of the Members in the wider Oireachtas area are quite interested in this area. Maybe it is one we will have future engagement on.

I thank the representatives from the NCPE and Rare Diseases Ireland, and Professor Postma, for their engagement with the committee today, for their time preparing statements, and for their frank answers and engagement. I really appreciate that. The meeting will now adjourn until 3 p.m. next Tuesday, 21 October when we will meet in private session.

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