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 Michelle O'Neill Michelle O'Neill Sinn Féin 3:30 pm, 24th January 2017

I thank the Member for his question. Again, I make the point that it is, ultimately, for clinicians to decide who gets access and to decide on the allocation of resources to provide this drug. We know there are a lot of additional needs involved in being able to provide the drug. Let us be very clear: it is not a money issue, in that sense; this is a drug that is not yet licensed for use in the North. As I said before, it has been made available to one child as part of a special programme. It is definitely not a question of there being a lack of funding to supply the drug. Decisions on the use of the clinical resources in hospitals are, quite properly, for clinicians to make.

Needless to say, these are families in very difficult circumstances and the children have very challenging needs. I am sure it is very difficult for all the families involved, so we need to be very sensitive to the issue. I can give an assurance that all those families will be properly engaged with, and if there is a route for them to get into this trial and it is beneficial medically for their child, the clinician will have to arrive at that decision in conjunction with the family.