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

For the third time this month I raise the issue of the availability of Spinraza which I am aware was raised yesterday. It was approved in June for 25 children with spinal muscular atrophy, SMA. At the time they and their parents had a realistic expectation that they would receive the drug over the summer months. When I raised the matter in October, the Minister for Health, Deputy Harris, was unaware of how many had received it. Last week he told me to talk to the parents' group which would update me on the matter. Up until last week, three children had received it. No child received it in October. When the issue was raised yesterday, the Taoiseach said he thought the HSE was meeting on 24 November to discuss the issue. Another meeting is not required as a decision has been made. I am asking the Taoiseach and the Minister to instruct the HSE to deal with this issue urgently, to ensure the funding is in place and to inform the parents and the children when the treatment will be provided. They were given hope which has since been withdrawn from them. This is impacting not only on the parents but also on the children, many of whom are disappointed that the treatment they expected to receive last summer has not yet been provided. I appeal to the Taoiseach to ensure the response will not just be the holding of another meeting but an instruction that a programme be put in place to deliver the drug and deliver it quickly.

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