SMA

  • The HSE has today approved the drug Spinraza for children with SMA -Spinal Muscular Atrophy.

    Following a long campaign to have the drug approved, the HSE has given the green light this afternoon.

    Two children from the south Mayo region - Grace O'Malley and Cillian Mearns - are among those suffering with SMA, and the decision to grant funding for the life-changing drug has  received cross-party welcome by local politicians.

     

     

  • With just days to go to the Budget, the families of children with SMA - Spinal Muscular Atrophy - are making a final plea to Government to sanction the drug Spinraza, which they believe will halt the progression of the rare genetic condition.

     SMA affects 25 families nationally, including two families in Co Mayo.

    It's estimated it would cost in the region of €3 million per year to provide the drug for these 25 children, but to date, the Government has not sanctioned its approval.

    Health Minister Simon Harris is waiting for a recommendation from the HSE, but the families involved say a decision is needed now, as the childrens' conditions are getting progressively worse.

     

     

  • A Mayo Fianna Fail TD has expressed her disappointment that despite the approval of the Spinraza drug last June for children with SMA only three of the 25 waiting have received access to this drug.

    Lisa Chambers said when she questioned the Health Minister why there was a delay in rolling out this drug, he responded by saying he wasn’t aware at the time of the announcement that a specialised team would be required.

    Deputy Chambers she doesn’t buy this, as for rare drugs and rare diseases you will always need a specialised team to administer the drug.

    There will be a more detailed Dail debate on this matter today and the Castlebar based deputy says she will be raising a number of questions with Minister Simon Harris.

  • It's beyond belief that children suffering from SMA - Spinal Muscular Atrophy - are still awaiting treatment, four months after the drug Spinraza was approved in Ireland.

    That's according to Mayo Sinn Fein Senator Rose Conway-Walsh, who says the families of two Mayo children  -Grace O'Malley from Hollymount and Cillian Mearns from Shrule - are still waiting for the treatment to be administered, while the HSE is saying it doesn't have to hospital beds or staff needed.

    There was widespread welcome last June when Spinraza was approved by the HSE, but Senator Conway-Walsh says it's now imperative that the Minister for Health announces a start date for its administration to the children involved.

    She's raising the matter during the Commencement Notices in the Seanad this morning, and is hoping Minister Simon Harris will come into the House to give an update on this issue....