Approval for life-saving drug Spinraza

Tuesday, 11th June, 2019 12:56pm

Approval for life-saving drug Spinraza

On the campaign trail in April, Cillian Mearns with his mum Lorraine, Deputy Mary Lou McDonald, Senator Rose Conway-Walsh and Natasha Warde.

A LIFE-SAVING drug has been approved by the HSE for the 25 Irish children living with Spinal Muscular Atrophy (SMA).

Mayo families of children with SMA, including Cillian Mearns and Grace O'Malley, have been campaigning for the drug's approval, which Minister for Health Simon Harris has announced this morning.

Welcoming the news, Minister Michael Ring stated: “This is the first ever treatment for children with SMA. I know how difficult this long journey has been for the families involved to get to this stage but I am very pleased that children in Ireland will now have access to Spinraza.

Having met with and spoken to the families of the children directly affected by SMA, I know this is a truly momentous day for them and their families. This drug will hopefully enhance the quality of life for children suffering with SMA and I wish them all the very best.”

Senator Rose Conway-Walsh, who has campaigned for the approval of the drug, tweeted earlier: “I am thrilled with this news on the approval of Spinraza! It’s been a long painful journey especially for Grace, Cillian and their wonderful families who never gave up!"

Deputy Lisa Chambers said the approval of the drug meant these children will now get the much needed, life-changing treatment they deserve.

She commented: “I want to commend the families and the children suffering from SMA who embarked on a lengthy, hard fought campaign for the reimbursement of Spinraza.

A huge well done to all involved, particularly to Grace O'Malley, Cillian Mearns and their parents. The sheer determination shown by these two young children and their parents is truly inspiring.

I am just thrilled to see that their hard work has finally paid off, and I want to wish them all the best for the future.”

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