And for some families this wait is excruciating, he said at a Wednesday news conference.

Shandro said there is no specific budget or cap on how much the government will spend, but that it was working with drug manufacturer Novartis to provide access. Nearly 70 per cent of children with spinal muscular atrophy type 1 do not live past age two. The drug is typically only approved for children under two.

We just dont want kids to fall through the cracks, said Shandro.

Susi Vander Wyk, executive director of Cure SMA Canada, thanked the province for making a decision she said is saving lives.

Its a fairly new treatment, so we dont know the long-term future of it, but we sure know that it has an astounding impact on these babies, she said at the news conference.

The earlier they receive the treatment, the better their prognosis, Vander Wyk said.

Time is ticking for them.

For Lana Martin, whose two-year-old son Kaysen Martin received the Zolgensma treatment in December after fundraising and an anonymous $1.4 million donation, the news was a huge step towards more kids accessing the drug.

Its still early after Kaysens treatment, but hes already more confident in his movements and doesnt tire as easily, said Martin.

He can now officially completely roll from one side of the room to the other side of the room, and he was not able to do that before, she said.

Martin said it was difficult for her and her husband, normally private people, to advocate publicly for the drugs coverage, but shes glad they did.

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Alberta Health to cover $2.8-million gene therapy treatment on case-by-case basis - Edmonton Journal