Clare Fine Gael TD Joe Carey has described the approval of access to Spinraza for children with Spinal Muscular Atrophy (SMA) as a life-changing development for young people affected by the disease.
Deputy Carey has welcomed the decision of the HSE to approve access for Nusinersen (Spinraza) for children with Spinal Muscular Atrophy (SMA) Type I, II or III on an exceptional and individualised basis.
“The Minister for Health Simon Harris has confirmed the decision was made by the HSE leadership team this morning. This is very welcome news and a life-changing development for young people affected by the disease.
“Families have fought a long journey to get here but I am so pleased children will now have access to this drug.
“Minister Harris has confirmed to me there will be no delay in accessing the drug. I want to commend the families for their campaign and the HSE for approving access,” he added.
It is estimated that there are approximately 25 children living with SMA in Ireland.