Thursday, 7 February 2019
Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation
It is most appropriate that I ask Deputy Zappone, who is Minister for Children and Youth Affairs, on behalf of 25 very ill children, when the HSE leadership meeting will take place to approve nusinersen, marketed as Spinraza, for all of those children suffering from spinal muscular atrophy. Last night I received an impassioned appeal from a grandparent which states:
This is a very anxious and fearful time for SMA suffers ... My gorgeous witty intelligent and physically invalided 8 year old granddaughter ... is anxiously awaiting its approval. I'm fearful, with so much going on at present ... that the approval of Spinraza may fall through the cracks.
Will the Minister for Children and Youth Affairs please use her good offices? We need to know the date in this month and we need to have certainty of the decision that will be taken.