South Africa: Life got in the way

I live with spinal muscular atrophy, an often-fatal neuromuscular disorder that results in progressive muscle wasting. In 2023, I was the first person in South Africa to receive medical aid cover for Evrysdi, one of three spinal muscular atrophy treatments available globally and the only one of the three registered as a medicine in South Africa.

​​All three spinal muscular atrophy treatments carry heavy price tags. In South Africa, the few Evrysdi approvals that are being granted by…