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This is a very sensitive issue, as these families are dealing with very difficult diagnoses of SMA and their children have very complex needs. I understand the concerns of those families involved and their request to have their children enrolled in the extended access programme of nusinersen, the potentially life-changing drug, to treat spinal muscular atrophy, and I am fully sympathetic to...
I thank the Member for her question. Again, a member of my team has met all the families involved to discuss their individual circumstances. Obviously, everybody's condition will have different circumstances. This is a clinical decision; it is not for me to make a decision on who should get what drug or who can get access to the trial. I want to make sure that these families, who are...
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...
Sinn Féin MLA for Mid Ulster
Entered the Assembly on 9 March 2007 — election
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