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 was very happy with the tone of the questions so far, because we have to be very sensitive to this issue, so it is unfortunate that you are trying to use it to electioneer. These are four families who are in a very difficult situation as a result of their children's diagnoses, which can be life-threatening for some of them. We therefore have to be very sensitive to the needs of these families.

Regarding the drug and getting into the clinical trial, as I said, the drug is not yet licensed. We do not want to build false hope that the clinical trial will benefit all those children, because we do not know. You are not qualified to make that assessment and neither am I, but I am very clear about that. These are clinicians' decisions to take, and that is how they should be taken. What is most important here is that the families be engaged with, that the communication issue be addressed and that they get all the information and the fullest of support that the health service can provide them with at this time.