Spinraza reimbursement decision
Deputy Ó Caoláin pressed for a decision on Spinraza reimbursement for children with spinal muscular atrophy, saying Ireland was lagging behind. The Tánaiste said he wanted the right conclusion for families, acknowledged the delay, and said the process must run its course.
Obviously, I fully support Deputy Niamh Smyth's appeal but the issue I need to raise is one the Tánaiste addressed earlier during Leaders' Questions. It is with regard to the anguish and stress that parents of children with spinal muscular atrophy must cope with as day by day they watch their child denied what is potentially a life-saving drug. With the advent of the approval of Spinraza for reimbursement in England and Wales, we are now one of only two countries in the European Union that has yet to take this decision. The other is Estonia. To be quick, the Tánaiste is the Deputy Prime Minister of the State. If he will not intervene otherwise, as he has explained earlier, will he at least reflect the frustration that he claims he has himself with this process and urge a conclusion with approval for Spinraza reimbursement issuing immediately?
Comment on this
Let me be blunt on this. I want a conclusion to this process for the families concerned but I want it to be the right conclusion for them, as does the Minister for Health. There is a process under way that must conclude. Absolutely, I share the Deputy's frustration with the length of time it is taking. We are trying to get the right outcome rather than making early decisions that would be negative ones.