TEN DOWN, THREE TO GO

Manitoba and Quebec latest provinces to embark on newborn screening for SMA

It’s been one year since we started working on making newborn screening (NBS) for spinal muscular atrophy (SMA) a reality for all Canadian babies. Thanks to a partnership with Novartis Canada and your unwavering support – there are only two provinces and a territory left to commit to this life-changing test. This spring, Quebec started planning for newborn screening for SMA, and Manitoba announced it moved from the planning phase to officially screening all babies.

WATCH NOW: Newborn screening progress

Stacey Lintern, CEO, Muscular Dystrophy Canada, is certain with your continued support, families in Newfoundland and Labrador, as well as British Columbia/Yukon will soon have access to screening and early treatment.

“These governments understand the importance of newborn screening and that treatments are available for newborns diagnosed with SMA. We are working with them to determine how MDC can support them in making this a priority,” said Lintern.

Dr. Hugh McMillan, Pediatric Neurologist at McGill University Health Centre, has worked in a province that screens and one that didn’t until recently.

“I used to see children who were born with SMA and had developed symptoms. By offering therapies, I could stop the progress of their disease and offer modest clinical benefit. But I was not able to offer them the same chance to sit, walk or run that they would have had the diagnosis taken place shortly after birth,” said Dr. McMillan.

WATCH NOW: Impact of newborn screening

Our focus is on full-implementation of screening and providing information to support long-term sustainability projects across Canada. Thanks to supporters like you, MDC is funding a first-of-its-kind project to evaluate the cost-effectiveness of newborn screening for SMA in Canada, including early treatment. The innovative national project led by a team at the Children’s Hospital of Eastern Ontario (CHEO) will provide policy and decision makers with evidence to make NBS for SMA a national standard.

“Generating this data will also foster collaboration and information sharing across the country and can ultimately inform Canada’s Rare Disease Strategy,” added Lintern.

WATCH NOW: Beyond newborn screening