A Moose Jaw woman living with spinal muscular atrophy (SMA) is being temporarily rejected for continuing a life-changing treatment.
Twenty-two-year-old Shailynn Taylor needs assistance every day.
SMA is a disease affecting voluntary movement, which progressively causes the muscles to get weaker and weaker from not being active.
In 2017, Health Canada approved the drug Spinraza to treat SMA.
It comes with a price tag of about $60,000 per dose and is not yet covered under any province or territory’s drug plan.
After receiving her first dose from a Calgary hospital, Taylor had already raised enough money for another two doses.
The hospital won’t give them to her until an administrative system is in place for adults.
This could take another two to three months.
Instant changes halted despite raising thousands
Taylor was diagnosed with Type II SMA at 18-months-old with a life expectancy of 13 years.
Through horseback riding, swimming and physiotherapy, she could stand until she was 10-years-old.
When Spinraza was approved, a family friend created a GoFundMe page to help Taylor get the expensive treatment.
Within a week, she had enough to get her first dose and got it on June 25.
She said her core strengthened significantly, she can lift two pounds heavier and has more energy.
When she went to book her second, she hit a roadblock.
“They keep telling me they can’t dose me until there’s an administrative process in place … but they already dosed me once,” said Taylor.
Health Canada’s dosing guidelines for starting on Spinraza states the treatment is most effective with a dose on day one, day 14, day 28 and at the three-month marks.
“I’ve missed what should have been my second, what should’ve been my third and so now we’re behind on the dosing schedule,” she said. “We’re spending a quarter of a million dollars but not actually following what they say is the most optimal way to get the medication.”
Taylor said she holds a ton of guilt knowing there are people out there with SMA who haven’t even gotten one dose.
“Parents shouldn’t be planning for their children’s’ funerals, they should be planning their futures,” she said.
“We’re already fighting just to stay alive,” she added, saying it’s a daily struggle to choke on your own spit and not be able to sit upright.
The Saskatchewan Ministry of Health told 980 CJME in an email that a number of other medications are beneficial for those with SMA.
But seeing the instant positive changes on her body from Spinraza, Taylor advocates every day for those with SMA to have access to the drug.
“It’s not that we’re being impatient. It’s literally a matter of life or death.”