5 January 2020 - Canadian babies with a rare and often fatal muscle-wasting disease may soon have access to a cutting-edge treatment that could change their lives – but only if they’re lucky enough to win a high-stakes lottery.

The Swiss pharmaceutical company that makes Zolgensma, a US$2.1 million gene therapy, is planning to give away as many as 100 doses of the one-time treatment this year in countries where the drug is not yet approved, including Canada.

Novartis began accepting applications for the lottery, which it calls a “managed access program,” on 2 January. The company intends to select one baby or toddler with spinal muscular atrophy at random every two weeks.

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