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

I want to revert to an issue I raised with the Taoiseach in this House on a number of occasions last year and I regret that, due to a lack of progress, I have to refer to it again. It is the issue of the 25 children who are suffering with spinal muscular atrophy who want access to a drug, Spinraza. If they were in many other European countries, they would have that access. When I have raised it before, the Taoiseach and the Minister of State, Deputy Jim Daly, indicated there is an ongoing evaluation by the HSE. There had been hope before Christmas that progress would be made and a resolution to this problem found but, unfortunately, that has not happened and the condition of these children is deteriorating. While I support and acknowledge there must be due process, due process cannot go on endlessly. Time has moved on. A solution needs to be found so these children can get access to this drug.

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