Oireachtas Joint and Select Committees

Wednesday, 12 July 2017

Joint Oireachtas Committee on Health

Funding of Orphan Drugs: Discussion

9:00 am

Professor Gerry McElvaney:

Unfortunately, the HSE does not listen too much to patient groups. One of the things I really appreciate in being here today is to hear from people. I echo what Deputy Brassil said. It was an education for us to see democracy in action. Bureaucracy is being held accountable by our public representatives. It is obvious that things are being said here today that we had not been told. It was out of the blue for us to hear about a decision on Respreeza taking three to four weeks. We have been asking for a timeline for the past three to four months. The Vice Chairman's about getting a house renovated hit the nail on the head.

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