Posted by Michael Wonder on 17 Sep 2020
Rare Disorders New Zealand supports Human Rights Commission case against PHARMAC
17 September 2020 - Rare Disorders New Zealand supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug.
“Our organisation whole-heartedly supports Fiona’s case for effective treatment,” says RDNZ Chief Executive Lisa Foster. “It’s shameful that families are forced to move to Australia to access this life-changing medicine, despite continued patient submissions and clinical evidence to show its worth.”
Spinal Muscular Atrophy (SMA) is a group of spinal muscular disorders that affect the motor neurons. Tolich lives with SMA and has been campaigning for years to get the drug, Spinraza, funded on behalf of 35 young people aged 18 years and under who suffer from the rare disorder. Spinraza has shown incredible results for children with SMA in other countries. The fact that PHARMAC won’t fund it for New Zealanders is blatant “discrimination”, according to Tolich.
