Oireachtas Joint and Select Committees

Wednesday, 21 November 2018

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion (Resumed)

9:00 am

Ms Vicky McGrath:

Yes. In terms of the make up and operation of the group, it looks at everything outside of pricing, the economic reimbursement or the economic models that the National Contact Points, NCP, would traditionally consider. It considers clinical trials and the impact the results would truly have on somebody's life, and quality of life. The group's role is far more objective. It is not that it is unsupported by evidence and research but it is much more based on the patient. The group aggregates the data and the data produced by the clinicians around members' own experiences dealing with these patients, and the effect that they feel the drugs would have on them. It is not an economic conversation; it is about how will this truly impact on the life of the patient. The group makes recommendations on the basis of that information, and not on economic information.

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