Oireachtas Joint and Select Committees

Wednesday, 21 November 2018

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion (Resumed)

9:00 am

Professor Michael Barry:

No, there was a series of meetings in respect of it. There were five meetings within 24 days, most of them focusing on Spinraza or nusinersen. We are now at the stage where a document is being prepared which I understand will be including starting and stopping criteria prepared in conjunction with clinicians and also having listened to patients and their relatives. Our task then is to get this recommendation document to the HSE drugs group so that it is not just cost effectiveness that is considered but also the other aspects. The committee, in fairness, has done a lot of work in a short time and we are mindful of the time issue here. That is why I am saying that I am hopeful that the document will be with the HSE drugs group within weeks.

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