Oireachtas Joint and Select Committees

Wednesday, 21 November 2018

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion (Resumed)

9:00 am

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I thank everybody for coming before the committee this morning. It is very much appreciated. I thank them for all the work they do and this is clearly a very sensitive and important area. I have various process questions as to how things are being improved. I will first ask about both Spinraza and Translarna. With Translarna, an application was received in September and yesterday we got a letter saying the application is now reaching the concluding stages and will be tabled for discussion at the December HSE leadership meeting. Mr. Hennessy said he would revert on the matter. I thank him for that. This does not affect a large number of children but for those who are waiting, time is critical. When is it expected to have a decision one way or another? For those parents and the children, is the decision we are awaiting a therapeutic and clinical decision or is it a funding decision? Is it both?

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