Kildare South Fine Gael TD Martin Heydon has welcomed the approval of access to Spinraza for children with Spinal Muscular Atrophy (SMA)
Deputy Heydon said: “The Minister for Health Simon Harris has confirmed the decision to approve access for Nusinersen (Spinraza) for children with Spinal Muscular Atrophy (SMA) Type I, II or III on an exceptional and individualised basis was made by the HSE leadership team this week.
“This is very welcome news. 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.”
It is estimated that there are approximately 25 children living with SMA in Ireland.