Spinal Muscular Atrophy Type 1: Treatment

Part of Question for Urgent Oral Answer — Health – in the Northern Ireland Assembly at 3:30 pm on 24th January 2017.

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Photo of Nichola Mallon Nichola Mallon Social Democratic and Labour Party 3:30 pm, 24th January 2017

I thank the Minister for her response. The Minister will know that I have raised this issue. I wrote to her twice before Christmas asking her to meet a family to discuss specifically access to the drugs. We have only four children in Northern Ireland who have this rare condition, one of whom is getting access to the drugs trial and three of whom are yet to get any decision on access to it.

Can any assurance can be given that, if those three children — Caoilte Fitzsimmons, Mia Warren and Noah Collins — meet the suitability tests, they will face the very real prospect of getting access to what is a life-saving and life-changing drug, given that the Health Department does not have to pay for it but simply provide the theatre space and medical staff to administer it?