Oireachtas Joint and Select Committees

Wednesday, 12 July 2017

Joint Oireachtas Committee on Health

Funding of Orphan Drugs: Discussion

9:00 am

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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That issue is central to both cases. When we put a straight-up question to the HSE such as does it consider everything, it answers yes. I have met numerous advocacy groups, as we all have, and the point keeps being made that if it did actually look at the real savings involved, the conclusion could not be anything other than that the drug is cost effective. There is obviously some slippage and if we have done nothing else today, we have managed to isolate the fact that a lot of work needs to be done on the process of communication between patients, their advocates, the HSE and the NCPE. The impression was created - I will say no more than that - that there was massive communication, but there does not seem to have been that much. The committee will certainly take on board the idea that more needs to be done in increasing patient involvement and communication.