The only treatment is Spinraza, a drug that costs US$750,000 for the first year followed by US$375,000 every year after. In Australia, Spinraza is available for those under 18, and in July last year, Charlotte began treatment at Queensland Children's Hospital. "But she knows the reason why she can't come back, because New Zealand doesn't have 'help juice'," says Yeoman. In New Zealand, Pharmac gets a capped budget and is solely responsible for deciding which drugs receive funding. Three months later funding for the drug was added to the Australian health budget.

Source: Stuff May 03, 2020 01:07 UTC