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 They were given hope which has since been withdrawn from them.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.

That was promised in June and I am not exaggerating the impact it is having on a young girl in my constituency, Grace O'Malley. I cannot put into words how upset her mother is. The latest update which they received last week from Mona Baker, chief executive officer of Temple Street Children's University Hospital, is that because Grace has a spinal rod in her back, she is a complex case and that a new service will have to be put in place to administer the drug and that an application for funding for this service was made for inclusion in budget 2020. They are distraught. They are so upset and believe there is no light at the end of the tunnel. When I sought an update on the matter from the Minister for Health a couple of weeks ago, his response was that when he had given the go-ahead for the drug to be made available, he was not aware that a new team would be required in the hospitals to administer it. To say that is incompetent is putting it mildly. I cannot understand how the Minister did not know what was required to deliver the drug. Surely, he would have been told in his consultations with the doctors in the hospitals what was required.

Time is up.

It will be next year before Grace receives her treatment, which was promised in June. This issue needs to be sorted and the family cannot wait any longer.

I thank the Deputies for their questions. This issue was raised yesterday by Deputy Micheál Martin, following which I sought and received a written update on the matter which was passed on to Deputy Michéal Martin's office yesterday. I will make sure it is passed on to the offices of Deputies Curran and Lisa Chambers today. Unfortunately, this is not a simple matter. The drug has been approved for reimbursement, but it is not merely a matter of providing funding or a political instruction. This is not a normal drug. It must be administered in particular circumstances which sometimes require a lumbar puncture, sedation and the presence of an anaesthetist. It is a complicated process. It is almost like an operation, rather than the administration of a medicine.

Why was it not put in place in June?

The matter is being progressed, but it is not as straightforward as may have been thought a few months ago.