Funding for Spinal Muscular Atrophy medicine w/ Fiona Tolich: December 9, 2022

Biogen has announced that SPINRAZA (nusinersen) – a first-of-its-kind medicine – is the first medicine funded by Pharmac for Spinal Muscular Atrophy (SMA), the number one cause of genetic death in Kiwi children under two.

SMA is a rare genetic disease that can have a devastating and life-changing impact. In its severe forms, SMA can cause paralysis and difficulty with the most basic functions of life, like breathing and swallowing,3 with babies and children possibly unable to hit major motor milestones like rolling, sitting, crawling, standing, or walking.

Joe spoke to Fiona Tolich a long-term campaigner and advocate for SMA, and a Trustee of Patient Voice Aotearoa, about how significant this is.