Advocates push for Alberta's screening of Spinal Muscular Atrophy in newborns to continue
This year, Alberta became the third province to begin testing babies for Spinal Muscular Atrophy (SMA), a rare genetic disease that is best treated before a patient is two years old.
The test for SMA was added to Alberta’s Newborn Metabolic Screening Program in February. It's now one of 22 conditions officials look for.
The test is done through a heel-prick that produces a tiny droplet of blood. The blood is then placed on special filter paper and sent to Alberta Precision Laboratories’ (APL) newborn screening lab in Edmonton.
“This is really important," aid Dr. Dennis Bulman APL’s medical-scientific director of genetics and genomics.
"We're looking at about one in 10,000 babies being born with SMA, So we'll … Project five to six babies a year that are now not going to be passing away before the age of two, (who) will hopefully become functional contributing members of society.”
SMA is an inherited genetic disorder. It's a motor neuron disease that weakens and eventually destroys muscles. Most children with SMA Type 1 do not survive past early childhood due to respiratory failure.
There are effective treatments, but to be effective they must begin before the onset of symptoms.
"The idea now is to identify which babies have this disorder before they show symptoms, and then get them referred to the pediatric neurologist so that we can start treatment within a couple of weeks after birth rather than six to eight months after birth," said Bulman.
The treatments are expensive.
In January, Alberta announced interim funding of Zolgensma, a one-time gene therapy treatment with a cost of $3 million per dose.
Despite that, Bulman insists it is not just the morally correct course of action, but the most cost effective as well.
"We can save the lives of 10 babies, and when you look at the support costs, if you don't do this, you'll blow that treatment costs right out of the water because you need to support the family, and these infants are in the hospital. That’s an expensive undertaking.
"It's the right thing to do, and at the end of the day it saves money in the health care system," he said.
Jessica Janzen Olstad has been fighting for SMA testing to be a regular procedure ever since her son Lewiston died of the disease in 2016.
Lewiston Olstad is shown in a photo from the Live for Lewiston Foundation. (supplied) Following his death, she founded the Love for Lewiston Foundation, which raises money to help other parents of children with SMA and to lobby for health policy change.
"In 2016, there was no treatment. There was no medication, there was nothing,” said Olstad.
"Now with three different medications on the market, we know that early detection means that you can change the life of a child and a family. So this was important to us because we were like if we had known with Lewiston. If we'd gotten a clinical trial or medication, we believe he'd still be alive today."
Alberta's screening program for SMA is presently a one-year pilot project funded by Muscular Dystrophy Canada. When it was announced in the summer of 2021, then health minister Tyler Shandro committed to making the test a part of routine newborn screening at the conclusion of the pilot project. Patient advocates say continued pressure is needed to ensure that happens.
Olstad says it needs to become a permanent part of Alberta health policy.
"This is a no brainer. It is a win not only for families but for the province as a leader in health care, and it does make sense. We want a meeting (with Alberta Health) and we want it moved from pilot project to assigned policy."
In 2020-21, more than 48,000 newborn babies born in Alberta were screened for genetic conditions.
CTVNews.ca Top Stories
Quebec nurse had to clean up after husband's death in Montreal hospital
On a night she should have been mourning, a nurse from Quebec's Laurentians region says she was forced to clean up her husband after he died at a hospital in Montreal.
'Anything to win': Trudeau says as Poilievre defends meeting protesters
Prime Minister Justin Trudeau is accusing Conservative Leader Pierre Poilievre of welcoming 'the support of conspiracy theorists and extremists,' after the Conservative leader was photographed meeting with protesters, which his office has defended.
'My stomach dropped': Winnipeg man speaks out after being criminally harassed following single online date
A Winnipeg man said a single date gone wrong led to years of criminal harassment, false arrests, stress and depression.
What is changing about Canada's capital gains tax and how does it impact me?
The federal government's proposed change to capital gains taxation is expected to increase taxes on investments and mainly affect wealthy Canadians and businesses. Here's what you need to know about the move.
Bank of Canada officials split on when to start cutting interest rates
Members of the Bank of Canada's governing council were split on how long the central bank should wait before it starts cutting interest rates when they met earlier this month.
Pilot reported fire onboard plane carrying fuel, attempted to return to Fairbanks just before crash
One of the two pilots aboard an airplane carrying fuel reported there was a fire on the airplane shortly before it crashed and burned outside Fairbanks, killing both people on board, a federal aviation official said Wednesday.
Police tangle with students in Texas and California as wave of campus protest against Gaza war grows
Police tangled with student demonstrators in Texas and California while new encampments sprouted Wednesday at Harvard and other colleges as school leaders sought ways to defuse a growing wave of pro-Palestinian protests.
'One of the single most terrifying things ever': Ontario couple among passengers on sinking tour boat in Dominican Republic
A Toronto couple are speaking out about their 'extremely dangerous' experience on board a sinking tour boat in the Dominican Republic last week.
7 surveillance videos linked to extortions of South Asian home builders in Edmonton released
The Edmonton Police Service has released a number of surveillance videos related to a series of extortion cases in the city now dubbed 'Project Gaslight.'