Posted by Michael Wonder on 18 Feb 2019
Decision on spinal muscular atrophy treatment Spinraza deferred
18 February 2019 - PHARMAC's decision to defer a decision on funding the only treatment for spinal muscular atrophy (SMA) has left the family of one young sufferer in despair.
Taupō mum Lisa Geddes had been waiting to hear the good news; that PHARMAC had decided to fund the treatment Spinraza.
Her 2-year-old son Tama has the degenerative illness SMA type 2 and as time passes, he gets weaker. He now struggles to hold his head up and if it drops, he can't lift it back up.
