John Curran (Dublin Mid West, Fianna Fail) | Oireachtas source

Sam and Glen are two boys who live in Rathcoole and Clondalkin. They and their families were delighted and full of hope last summer when it was agreed that Spinraza would be made available to them. They had the realistic expectation that the drug would be administered to them over the summer holidays, but it was not. All hope has been withdrawn from them. There is no date for when it will be made available to them and they are very upset. They were thrown a lifeline which has now been taken away.

A month ago I asked the Minister how many children had received the drug and at that point in time none had. I understand that perhaps three children have now received it. We have raised this issue in the House, and have been fobbed off and told it is a complex condition and so forth. All of those facts were known last summer when the decision was made to make the drug available. The children were identified last summer; it is not as though new children have appeared.

The reality is that somewhere along the way there is a disconnect between the health service which is administering the drug and the decision made by the Government which we all welcomed. We want to know how many children are currently in receipt of the drug. When will all of the remaining children start on the drug? We do not want to be fobbed off with references to this being a complex issue and so forth. We all know that. We want the decision of the House and Government to be implemented immediately.

See this speech in context