Posted by Michael Wonder on 14 Jul 2021
PHARMAC 'cruel' for failing to fund drugs for rare illnesses — advocate
14 July 2021 - New Zealand’s drug-buying agency doesn’t value the lives of all people equally, according to those advocating for the funding of medicines for people with rare illnesses.
Fiona Tolich keeps a notebook of the names of Kiwi kids with spinal muscular atrophy, a rare disorder that causes weakness and muscle wasting.
The most severe type of spinal muscular atrophy has a 95% death rate for children who get it early. Without treatment, many die before they turn two from respiratory failure.
