Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

With respect, after the passage of so many months we are facing into Christmas and for the greater number of these families there has been no real delivery.

I noted from the reply that the Minister of State has read into the record that 11 children have been approved. He went on to clarify that only four have actually been lined-up, and perhaps even only three are currently in receipt of the drug. There is an uncertainty in regard to this.

I wish to put on record that I understand and appreciate, as the families do, the wonderful trojan work that Dr. Declan O'Rourke, the prescribing specialist doctor for spinal muscular atrophy, SMA, children at Temple Street Children's University Hospital, is doing. He and the hospital are denied the infrastructure and support in order to carry out a much greater throughput of those at least 11 children initially. We need to see all the children given the opportunity for trial to see how Spinraza will work for them. Pray God it will make a difference for them all. That would be the hope of all of us, as it would be of the families.

I ask the Minister of State to reflect the frustration and vexation of the Members of this House to the Minister for Health for the failure to move this forward with the speed that it requires and his failure once again to be accountable to this House on this particular important matter.

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