Mr. Paul Reid:

I will ask the chief clinical officer, Dr. Colm Henry, to comment, but in response to Deputy Donnelly's questions, like Minister, I completely understand the concerns of the families and children involved in raising this issue which is very real. To put it in the context of drugs approval, 23 drugs have been approved by the HSE and the drugs committee that oversees the process within a budget of €10 million. Decisions are made based on a number of criteria, one of which is cost effectiveness. On the availability of Spinraza specifically, the drugs committee has gone through a process and by a small minority considers it would not be cost-effective to make it available.

It used a range of criteria in making that recent decision. I have asked for that decision to be brought back to my leadership management team and that will be done in early June. As the Minister has said, there is an ongoing process involving negotiation and cost-effectiveness. I have asked for the issue to be brought back to my management team in early June. I am very conscious of the NHS decision and where Ireland now stands in that regard. Everybody wants to make the right decision about this drug, including me, and that is the track I want to get us on. I just need space and time to bring the process back to my leadership team and assess that decision. We will make the decision. That is exactly where we are.