John Curran (Dublin Mid West, Fianna Fail) | Oireachtas source

Maybe the 2013 Act is the problem. We have an issue in this country in that we are not able to provide a drug that most other European countries currently provide. We are an outlier on this. If it means reviewing the legislation, the Minister and HSE need to clearly identify the blockage. Why do we have a problem in this country that most other European countries do not have? Time is not on the side of these young people. I have read the review we got. I have two points relating to the rare disease technology review committee. It states that it supports the use of Spinraza in spinal muscular atrophy, SMA, type 1 patients, subject to STOPP-START criteria, and in SMA types 2 and 3 in patients under 18. The recommendation is quite specific. The report clearly identifies that there is no other treatment. These children grow weaker month by month and they and their families know that a drug is available. It is frustrating for them and I feel so bad for those parents, knowing that there is a solution to the problems they face, when we in this House cannot get our act together. I am not blaming the Minister of State personally but it is appalling that we cannot get our act together when every other European country can. We need the Minister to give a direct response. If that means bringing in amending legislation, please do that.

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