Posted by Michael Wonder on 07 Apr 2019
Grandmothers lobby government for rare genetic disease medication
7 April 2019 - Two grandmothers will help deliver a petition to parliament next month calling for funding for a drug said to have changed the lives of children overseas.
At the end of last year, PHARMAC decided to defer a funding application for Spinraza, to await the results of two clinical trials.
The drug, which is available in the United States, Australia and parts of Europe, treats spinal muscular atrophy, a genetic disease that affects the nervous system.
