Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Ms Vicky McGrath:

It would involve some type of early access programme. I am happy to hear that the chief clinical officer has initiated discussions but I am a bit surprised to hear that the patient organisations involved are not getting a seat at those discussions. It is somewhat typical sometimes of the way the system is set up. It is not unreasonable. The products are being manufactured in this country and we are not getting access to them. We need to pivot this. I think 4 is very generous on that scale of 1 to 10.