Deputy Bobby Aylward
Local TD Bobby Aylward has welcomed the decision made by the HSE to approve Spinraza for reimbursement.
Deputy Aylward, who has raised the matter on numerous occasions in Dáil Éireann, said that it would be an enormous relief to the children who suffered with the rare muscle-wasting disease, spinal muscular atrophy (SMA).
“This has been a long-fought battle by the parents and friends of children suffering from SMA," said the Fianna Fail TD.
"I watched and listened intently as the family of Isaac Brennan challenged a system which threw them many curve balls. Their determination was inspirational, as was the determination of all parents who fought for their children in this regard.
“I would like to see improvements made to the reimbursement process for orphan drugs. A more streamlined and swifter decision-making process should be used, particularly when the same drug is available on the NHS across the pond.
“We are going to see another situation similar to Spinraza in the future. We are getting to the stage where, with enough money, we can cure or treat a phenomenally wide and growing range of chronic diseases and conditions.
“We need projections for the kind of money that Ireland will have to spend in five- or ten-years’ time, we can work to these projections and ensure that Irish citizens have access to the emerging world of orphan drugs and breakthrough therapies."