Spinraza approval for children
Deputy Ó Caoláin asked when the HSE leadership would approve nusinersen for 25 children with spinal muscular atrophy. The Minister of State said the senior leadership team would meet the following Thursday to consider the recommendation and the Deputy asked to be notified.
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.
Comment on this
As I stated in the House yesterday the meeting of the senior leadership team in the HSE is due to take place next Thursday when this matter will be discussed. This is not to say that it will be agreed there but the recommendation has come up to the senior leadership team. They will meet on Thursday, 14 February.
Comment on this
Will the Minister, Deputy Zappone, please notify me?