Spinraza access for children
Deputy Martin complained that children with spinal muscular atrophy had not received Spinraza despite approval months earlier and urged the Taoiseach to intervene with health officials. The Taoiseach said the drug had been approved for reimbursement, would check on the delay, and expected a further reply after an upcoming meeting.
As we are down by over six minutes, we will have to look at that issue at the Business Committee. Our party, being the largest, believes it is continuously under-provided for in the Order of Business procedure.
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As they are a bit sensitive on the racism issue right now, I am not surprised.
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Four months ago a decision was taken to approve the drug, Spinraza, for children suffering from spinal muscular atrophy, SMA. Deputy Ó Caoláin, in fairness to him, organised a cross-party presentation by families affected by this degenerative condition, which affects young children and other young people. Their hopes were lifted when that decision was taken in June, but that hope has evaporated for many families because four months on, only three of the 25 have been given the treatment. This is a rare condition, as the Taoiseach knows. It is very cruel to raise the hopes of people facing a significant chronic condition such as this that the drug will be approved and then do nothing to follow through on that decision. It is very hard and very cruel and it is causing real anguish to the families.
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I ask the Taoiseach to talk to the Minister for Health. The parents are being told that the hospital concerned, Temple Street, will have to apply for 2020 funding to put in a new service-----
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-----to administer the drug to some of the children involved. All this should have been done at the time of the decision, and there should be no excuses. For God's sake, will the Taoiseach do the human thing and just get the Government to sort this out with Temple Street and any other hospital that requires the wherewithal to follow through on the decision to treat these children who desperately need this drug? It is a degenerative condition, and the Taoiseach knows what that means if they do not get access to the new treatment.
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As the Deputy knows, the drug has been approved for reimbursement. I am not sure what the cause of the delay has been in ensuring that these children get the medicine they need. I am told a meeting about the matter is to be held on 24 November. I will check into it with the Minister for Health and the Department of Health and get the Deputy a more detailed reply in the next couple of days.