Thursday, 7 November 2019
Ceisteanna ar Reachtaíocht a Gealladh (Atógáil) - Questions on Promised Legislation (Resumed)
I thank the Deputy. He has taken a particular interest in the Spinraza issue and has also spoken to me about boy called Sam on a number of occasions. I will get the Deputy a note because there has been some progress in this regard. As he knows and as I would have informed the House previously, it did require putting in place some quite complex service arrangements in respect of the 27 children, as I think the figure is now, who qualify clinically for the drug. I can tell the Deputy that the drug has started to be administered to children and there are a number of scheduled appointments during this month as well. All children who are clinically eligible will receive it. I believe there has been contact between the HSE and the SMA executive group, the parents' group. I will make sure there has been and will send the Deputy a written note.