Posted by Michael Wonder on 28 Apr 2020
Spinraza could give teen a longer life, but Government says it's too expensive
28 April 2020 - A Greymouth father is battling for PHARMAC funding for a drug he hopes can help his daughter slow down her aggressive disorder.
Leah Schumacher, 13, has Type 2 Spinal Muscular Atrophy, a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles. Without treatment, progressive muscle weakness develops.
Her father Daniel said his daughter was one of 34 children in New Zealand that need a drug called Spinraza. But PHARMAC is unable to fund it because it does not have the budget.
