Spinraza approved following long campaign by parents  

Spinraza approved following long campaign by parents  
28/02/2019 (L to R) Parents Rebecca Bulman & Ian Bulman with Harry Bulman 5 who has SMA & his brother Josh bulman 3 all from Youghal, Cork with protesters during a rally at Leinster House in February. Photo: Gareth Chaney Collins

There was good news for parents of children with Spinal Muscular Atrophy (SMA) today, with the HSE finally approving use of a new drug, Spinraza, to treat the illness in young people.

“Welcome news today that Spinraza is now approved by the HSE,” Minister for Health Simon Harris said on Twitter. “This is the first ever treatment for children with SMA.

“I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access.” 

The families calling for access to the drug included the Bulmans from Youghal, who waged a long campaign on behalf of five-year-old Harry, including attending a protest rally at Leinster House earlier this year. 

His family heard about Spinraza two years later and were hoping that he could have access to it, but until today it was not approved in Ireland.

Last month Harry’s mum Rebecca spoke of her ‘heartbreak’ when the HSE once again rejected a costing by Spinraza producers Biogen for the drug.

In February, the HSE wrote to Biogen, the producers of Spinraza, to say the agency was refusing to provide reimbursement of the drug at its current price.

Following the February decision, parents, their children and supporters organised a demonstration at the Dáil, and a petition was signed by up to 90,000 people.

Harry and up to 25 other children are likely to benefit from today’s decision.

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