Manitoba adds spinal muscular atrophy to newborn screening

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This article was published 08/06/2022 (1406 days ago), so information in it may no longer be current.

Manitoba families will know faster whether a child has spinal muscular atrophy, due to an expansion of the newborn screening program.

On Wednesday, the province announced Muscular Dystrophy Canada will donate $235,000 over two years to the Cadham Provincial Laboratory to support a pilot program which will expand the newborn screening to also include SMA.

SMA is the most common cause of fatal genetic disorders in children, after cystic fibrosis. The disorder, which causes muscle loss and weakening, with the most common type leading to death by two years of age, affects about one in every 18,000 babies.

“We are so happy and grateful that, going forward, no other family in Manitoba affected by SMA will have to experience the fear and pain of watching their child lose strength and abilities without knowing why and the feeling of helplessness while searching for an answer,” Maylia Bodman said in a statement. Her daughter, Braelynn, wasn’t diagnosed with SMA until she was one year old.

“While there wasn’t treatment available when our daughter was diagnosed, we know that getting a diagnosis quickly also means timely access to treatment before symptoms start.

“This will both save lives and change lives.”

Currently, the newborn screening program screens for more than 45 disorders, with 15 to 25 newborns found to need early and critical specialist care.

Stacey Lintern, Muscular Dystrophy Canada chief executive officer, thanked the province and Cadham for helping change the lives of families and babies.

“In a neuromuscular disorder like SMA, where time is of the essence, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes,” Lintern said in a statement.

“SMA screening will diagnose babies before irreversible disease occurs and connect them to early care that will give them much greater opportunity to live active, healthy lives,” said Dr. Paul Van Caeseele, Cadham’s medical director.

Early diagnosis is key to improving outcomes for babies born with different types of disorders, Health Minister Audrey Gordon said.

“Our government is proud to work with our partners across the health-care system to expand the newborn screening program to include testing for SMA because we know it is the first step in accessing treatment and ensuring the best outcomes for families,” Gordon said in a statement.

Gordon also noted the province recently added two new drugs for SMA to the provincial drug formulary: Evrysdi, a disease-modifying therapy given daily, and Zolgensma, a gene replacement therapy given once intravenously to slow the disease’s progression.

kevin.rollason@freepress.mb.ca