Oireachtas Joint and Select Committees
Wednesday, 21 November 2018
Joint Oireachtas Committee on Health
Evaluating Orphan Drugs: Discussion (Resumed)
9:00 am
Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source
I am not asking for a guarantee on the approval of the drug. I hope the HSE can negotiate a price where it is approved, and we all hope that happens soon. As we are all acutely aware, because we are all trying to achieve the same thing, SMA is a degenerative disease and every week and month matters. I am cognisant that the NCPE refused the price that was offered 11 months ago. Some 11 months have passed, therefore, and representatives from the HSE are before the committee. While I accept that Mr. Flanagan cannot give any guarantees, it has been 11 months since the NCPE refused the price and it is not acceptable that he would say he cannot even give a broad timeline.
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