Chris Glover, NDP MPP for Spadina-Fort York, held a press conference Monday to call on the Ontario government to help people living with spinal muscular atrophy (SMA) access life-saving medication.
SMA is a degenerative disease that causes difficulty breathing and walking as well as problems with muscle strength, fine motor skills, swallowing and eating. The treatment, nusinersen (known by the brand name Spinraza), is not broadly publicly covered in Ontario and runs six figures for a single dose. Multiple, ongoing doses are required for it to be effective.
Glover was joined at the press conference by two young women living with SMA and their parents, who are seeking access to this treatment. Rebecca Van Fraassen, 19, is in her second year of studies for art and design at OCAD University. She was diagnosed with SMA at 20 months old. Tori Lacey, 21, is in her fourth year of studies for creative industry at Ryerson University. She has a diagnosis of Type 2 SMA and has lost 20 per cent of her function in the last two years.
Lacey’s parents, Tracy and Shawn, have had to re-finance their home and sell other assets to pay for the treatment that is now available, after having fundraised more than $1 million for SMA research.
“When I heard Rebecca’s and Tori’s stories, I knew I had to speak up,” said Glover. “Ontarians living with SMA should not have to suffer without treatment when there is a medication available that can help manage their condition. And their loved ones should not be forced to choose between taking on massive debt to pay for that life-saving medication and watching their children lose function.
“Making things worse, the Ford government has been sitting on a recommendation to expand public coverage of Spinraza for months now.”
After Spinraza was approved for use in Canada in 2017, the Canadian Agency for Drugs and Technologies in Health recommended that provinces and territories provide public coverage of Spinraza for babies up to seven months old. In March 2019, the agency said it should be made available to children up to age 12, and reiterated this updated recommendation in a final report a month later.
Quebec provides full public coverage of Spinraza, while Saskatchewan provides public coverage of Spinraza for people with SMA regardless of age, with some exceptions based on the severity of condition.
“Ontario families affected by SMA deserve better than to be told they’re on their own,” said Glover. “I am urging this government to act immediately to help all Ontarians living with SMA access this life-saving medication.
“Every day Rebecca and Tori have to wait is another day that their condition is allowed to deteriorate.”
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