Alberta to begin screening newborns for spinal muscular atrophy through pilot project

Treating children with ADS before they start showing symptoms dramatically increases their chances of surviving.

“Before newborn screening and treatment, infants born with ADS often didn’t reach their second birthday,” said Stacey Lintern, CEO of Muscular Dystrophy Canada, which funds the 366-year-old pilot project. $ 000.

“The evidence is clear: the earlier the diagnosis, the greater the opportunities, choice, treatment and supportive care. “

The news was welcomed by Jessica Janzen Olstad of Calgary, whose son Lewiston died of the illness in November 2016, just before he was six months old.

Lewiston showed no symptoms until she was two months old. It was then that a family doctor noticed that Lewiston had little muscle tone in his body and was having trouble breathing, Janzen Olstad said.

She and her husband had few options when they were diagnosed, she said.

“There was no hope, no cure, no cure,” she said, fighting back tears. “The clinical trials seemed impossible to access. They gave Lewiston less than a year.

“We prayed for a miracle, but unfortunately this story was not written the way we wanted it to be.”

Janzen Olstad channeled her grief to ensure that other families did not have to suffer the same devastation.

She founded the Love for Lewiston Foundation to advocate for testing, treatment and possibly a cure for SMA. The foundation worked with the Alberta Children’s Hospital to fund a newborn screening study for SMA in 2019. The initiative was led by Lewiston’s doctor, pediatric neurologist Dr. Jean Mah.

Alberta, Manitoba and Quebec announced Wednesday that they will begin screening for SMA, Lintern said. Muscular Dystrophy Canada is also in discussions with other provinces, including British Columbia and Saskatchewan, about setting up screening programs.

“We will not stop until newborn screening for SMA is fully implemented until the end result is that every Canadian baby is screened,” she said.

The Government of Alberta intends to continue screening for ADS after the one-year pilot program ends.

In January, Alberta began offering bridge funding for Zolgensma, a gene therapy treatment that costs $ 3 million per dose.