Bobby Aylward (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

Page 105 of the programme for Government commits to ensuring every young person will be enabled to reach his or her full potential. Unfortunately, on a regular basis, almost weekly, we raise the issue of the availability of Spinraza to a very small number of children, a couple of whom are in my constituency of Carlow-Kilkenny. There was a trial by the company involved and the relief families obtained for their children was unbelievable. We are dilly dallying on this issue. I understand the Minister for Health is legally barred from interfering in or influencing the decision-making process. However, the point we made to the HSE drugs group was that the affected families had been waiting under a cloud of uncertainty for far too long and that every effort needed to be made to return a decision as soon as possible. I ask the Government to bring the matter to a final decision. I do not want to stand up here week in, week out, on behalf of the eight or nine children in the country who need this drug which has been proved through trials to provide relief for them and their families.

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