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SMA is a degenerative disease that causes damage to nerves that develop muscle function and allow children to eat, move and breathe.
The drug has been approved for children with SMA Type I, II or III on “an exceptional and individualised basis”.
Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.
Negotiations, and clashes, over the price of Spinraza are ongoing behind the scenes.
About 26 children with SMA, a rare muscle-wasting condition, could benefit from Spinraza.
The HSE said the current price of Spinraza – more than €20 million over five years – is not cost-effective.
Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.
Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.
The Small Firms Association makes optimistic prediction for 2013 – *but only if SMEs are “placed at the heart of economic policy”.