Rose Conway Walsh (Sinn Fein) | Oireachtas source

I thank the Minister of State for coming to the House. He will know that I had requested the Minister for Health, Deputy Harris, to do so, but I appreciate the Minister of State's presence. I hope the Minister has communicated with him on the issue of Spinraza. The Minister of State will know that we have been fighting for Spinraza to be made available for the past two years. We were absolutely thrilled when Spinraza was approved on 11 June. We accepted that four to six weeks, or however long necessary, would be required to do the paperwork in order to have the drug administered. Then, on 23 August, there was a sign-off on it. At that point, the parents of the children who need Spinraza were told that everything would be put in place and that they could expect the drug to be administered at the end of October.

The end of October is approaching and the parents have been given another update stating that, due to resource issues, together with bed shortages, the drug that has been approved and that is necessary cannot be administered. I look at these children, and their parents look at them, and they tell me that this is almost worse than the drug not being approved. This pertains to Mayo in particular because we have Grace O'Malley and her friends and Cillian Mearns, who have done work on this. We need to know when the drug will be administered. It was cruel in the first place for them to have to wait for so long for Spinraza to be approved, but there is an additional cruelty in knowing that it has been approved and is there. The drug has been purchased, and now the HSE tells us it does not have the resources to have it administered. We are not talking about a staffed bed for a long period. The Minister of State will know that Spinraza can be administered to day patients, so all we need is a bed for the day, or even half the day, to get the drug administered. That, we are told, is not available. Over the first two months the drug is administered four times and then the dosage decreases. We are talking about just 11 patients who are ready and suitable for this treatment. I hope the Minister of State can give me very specific answers today as to when these children, including Grace and Cillian, will get a specific date to start on Spinraza.