Fianna Fáil T.D. for Mayo Lisa Chambers has welcomed the long awaited approval of the drug Spinraza for children suffering with Spinal Muscular Atrophy
Speaking on the matter Deputy Chambers said “I am absolutely thrilled to see that the approval for Spinraza has finally been granted,”
“It has been a long and stressful road for these children and their parents and I am just over the moon to see the fight has finally been won.” She stated
“Spinraza is the only treatment on the market for spinal muscular atrophy, which affects 25 children in the state. The drug is very expensive and without HSE reimbursement there is no way that these families could have afforded it,” she said
“With the approval of the drug by the HSE these children will not get the much needed, life changing treatment they deserve,” she continued.
“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,” she stated
“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,” she concluded.