Alberta to fund treatment for child spinal muscular disorder

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EDMONTON — Health Minister Tyler Shandro says Alberta will fund, on a case-by-case basis, treatment for children with a rare genetic disorder known as spinal muscular atrophy.

The condition, also known as SMA, is a motor neuron disorder affecting one in 6,000 babies.

SMA can affect muscles used for head and neck control, sitting, crawling, walking, and swallowing, and children with severe cases do not usually live past age two.

A gene therapy treatment called Zolgensma has been approved by Health Canada, but the drug review and other paperwork are still pending.

Zolgensma is usually only approved for children under two years, and Shandro says the paperwork delay is a concern for children who need the drug immediately.

A one-time treatment of Zolgensma costs $2.8 million.

This report by The Canadian Press was first published Jan. 27, 2021

The Canadian Press