Paul Kehoe (Wexford, Fine Gael) | Oireachtas source

The Senator feels very strongly about this matter. The Minister for Health fully recognises that this condition places enormous strain on SMA sufferers and their families and carers and that this is a very worrying time for them.

The complexity of this treatment requires appropriate service arrangements to be put in place in Temple Street Hospital so as to ensure that the treatment and delivery of this medicine are conducted in a safe and sustainable manner appropriate to the standard of care which has been developed for this particular treatment. While the Minister hopes that access to this treatment will be provided shortly for all concerned, it should be remembered that the care of individual patients is a matter for treating clinicians in line with patient safety, protocols and guidelines. These are being developed by the HSE to administer Spinraza. As I said, the Minister hopes to receive a further update on this issue as soon as possible.

This is a clearly a major issue for the Senator and I know she is personally involved and has a personal connection. I do not have answers to hand because I do not have responsibility for this area. However, I will ask the Minister or one of his officials to communicate with her directly and address the specific concerns she raised. I admire the Senator for the manner in which she has raised this issue on behalf of patients who are awaiting treatment with Spinraza.