Alberta has announced that the province will start testing newborns for spinal muscular atrophy.
Spinal muscular atrophy is a rare genetic condition that weakens muscles by affecting the motor nerve cells in the spinal cord and is the leading genetic cause of infant mortality.
The screening will be part of the Newborn Metabolic Screening Program, which currently screens newborns for 21 conditions.
Muscular Dystrophy Canada is providing $366,000 to Alberta Precision Laboratories to implement the test through a one-year pilot program starting in early 2022. Treatment for spinal muscular atrophy is most effective before the onset of symptoms.
As per the news release, more than 48,000 newborn babies born in Alberta were screened for 21 conditions in the year 2020-21. Of those, 214 received an abnormal screen result and were referred for diagnostic testing. 57 of these babies were diagnosed and treated for one of the 21 screened conditions.
Minister of Health, Tyler Shandro said, “Alberta’s government is committed – and I am personally committed – to doing everything we can for kids with this devastating disease. Expanding our screening program means specialists can identify it sooner and treat it sooner, and hopefully give more kids a chance at a full, healthy life. ”
The spinal muscular atrophy screening test will become part of Alberta’s publicly funded Newborn Metabolic Screening Program after the one-year pilot program is completed.
Alberta currently provides coverage for Spinraza (nusinersen), a one-time gene therapy treatment with a cost of $3 million per dose, to treat pediatric spinal muscular atrophy. This is the first therapy marketed in Canada for patients with spinal muscular atrophy, through government-sponsored drug plans.
According to Muscular Dystrophy Canada, Ontario and Nunavut screen newborns for Spinal Muscular Atrophy.