An Ottawa family is feeling relieved after their insurance company offered to cover a $120,000 treatment for their son’s rare condition, which they hope could reverse damage from the degenerative disease.
The drug, Spinraza, is used to treat spinal muscular atrophy (SMA), a progressive disease that can cause paralysis or death and kills more infants than any other genetic disease. Spinraza, also known as nusinersen, was only approved by Health Canada in June.
Mason Stewart, 8, lives with SMA, which weakens his muscles and makes it difficult for him to perform everyday tasks. He was diagnosed at the age of two.
“I can’t keep up with my friends. I have to go on my scooter if I want to play with them,” Mason told CTV Ottawa.
Months ago, his family learned about Spinraza and applied to their insurance company in hopes of being covered. Initially, the company said it was up to the Ontario Health Insurance Plan to foot the bill.
But, earlier this week, the Stewart family learned the good news: Sun Life would pay for the drug.
Mason’s father called it “the best Christmas present ever.”
“I was hysterical. I was a mess,” he said.
Mason’s mother, Jenna Stewart, interjected: “I think beyond hysterical.”
The family had shared their story on Facebook, which they believe played a factor in the approval.
Now that their child’s treatment is approved, the parents said they plan to push to make it easier for other children to access the potentially life-altering drug. They are working to raise money and awareness about the disease through the organization Cure SMA Canada.
“All these kids are out there that are worse off than him that need this drug,” Jenna Stewart said.
SMA affects between one in 6,000 to 10,000 children, and about one in 40 people carry the gene that can pass along the disease. Even if both parents carry the gene, there is about a one-in-four chance the child will be born with the disease.
Studies have shown that Spinraza can stop the spread of SMA in some children. In some cases, it reversed the disease.
Mason said he’s excited to begin the treatment.
“I’m hoping it can make me run and keep up with my friends,” he said.
With files from CTV Ottawa