Access to Spinraza welcome news for families and children affected

The approval of access to Spinraza for children with Spinal Muscular Atrophy (SMA) is such welcome news for families and children affected.

Cork Senator Tim Lombard 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, stating: “Minister for Health Simon Harris has confirmed the decision was made by the HSE leadership team on Tuesday morning.

“This is such welcome news. Families have fought a long journey to get here, and 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.

 

12 June 2019

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