When Shailynn Taylor was a toddler, doctors told her parents she likely wouldn’t live past her 13th birthday.
Taylor lives with spinal muscular atrophy (SMA), a disease that causes severe muscle wasting.
“Overnight I lost the ability to walk,” she said. “I don’t remember it. I was only six years old. It was horrible for my parents to go through.”
Her friends and family have refused to give up, raising over $200,000 to cover the cost of a drug called Spinraza. Taylor had her first dose in June at Calgary’s South Health Campus at a cost of $63,000.
“Within a day, I began seeing improvements,” Taylor said. “I would reach up to levels where I hadn’t lifted my arms in five years. In the gym, I saw my weights doubling and tripling.”
Taylor needed a total of four doses of Spinraza to access a clinical trial in New York that is covered by the drug manufacturer, but she hit a roadblock after her first dose when Alberta Health Services delayed further treatments.
“It made it very frustrating because we were willing to put that much money out and couldn’t access the treatment at the time,” Taylor said.
On Monday, Taylor found out AHS has now agreed to provide Spinraza after “learning that she will now be eligible for admission into a recognized clinical trial.”
According to AHS media relations senior advisor Bruce Conway, AHS will continue to work with Taylor to ensure she is administered the medication required to be eligible for participation in the new trial.
“We know that it be can challenging for patients and families to navigate research eligibility criteria, which is why we work with patients and their families to access clinical trials and supports the administration of pharmaceutical drugs that provide eligibility for acceptance into clinical trials,” Conway said in a statement. “We take a collaborative approach to developing treatment plans when patients present the care team with potential alternate therapies.”
The cost of the drugs will be covered through fundraising and by Taylor’s parents taking out a loan.
“They should be looking at retirement but instead they’re going to be working another 10 or 15 years in order for me to access this treatment,” Taylor said. “That’s not a position a parent should have to put themselves in to keep the child alive but that’s what my parents and grandparents have decided to do.”
As Taylor prepares for treatments in New York in February, the 22-year-old Mount Royal University student said she’s on a mission to have the cost of Spinraza covered for everyone with SMA.
“Even though this is been the most exhausting and frustrating fight of my life, I will not stop because I know I have so many people behind me that are counting on me to make a difference,” Taylor said.
In an emailed statement to Global News, Alberta Health said once the province signs a contract with the drug manufacturer, the drug will be added to the Alberta drug benefit list for people with type one spinal muscular atrophy.
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