3 October 2018 - Canadian children with a rare and often fatal neuromuscular disorder are about to gain public funding for one of the world’s most expensive medications.

The group that negotiates confidential drug discounts on behalf of the provinces and territories has reached a deal for Spinraza, the first drug to treat the underlying genetic cause of spinal muscular atrophy (SMA), a disease that in the worst cases kills children before their second birthdays.

Pediatric neurologists and the families of children with SMA have been watching closely to see how the Canadian health-care system would handle Spinraza, a case that highlights the trade-offs governments face when they’re asked to pay steep prices to improve – and even save – the lives of children.

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