Calgary university student Shailynn Taylor says no one expected her to live past 12. Now 22, she is a leading advocate in the battle against Spinal Muscular Atrophy (SMA), a rare disease that responds well to a drug that isn’t covered by Alberta Health.
SMA is a genetic disorder that occurs in one in every 6,000 births.
Its effects are devastating. Taylor can’t move her muscles well because the motor neurons have died off due to the lack of a gene that most healthy people are born with.
Despite the exhausting impacts of SMA, Taylor finds energy to fight for access to Spinraza.
Last June, Health Canada approved the new drug because it can lessen symptoms and can potentially improve quality of life. It is the only approved treatment for SMA available.
“We have a rare disease and we’re not being heard and we’re not getting the treatment we deserve.” -Shailynn Taylor
According to the maker of Spinraza, the first year of treatment costs $700,000 CAD with every year after that costing $350,000 CAD.
Health Canada has said they will cover the cost of Spinraza for anyone who has Type 1 of the disease detected before they are seven months old. This has many people with other types of the disease and diagnosed much later, demanding change.
Not just about the money
According to Taylor, who has Type 2 SMA, the issue isn’t just about the cost of the drug. It’s about basic human rights.
“We have a rare disease and we’re not being heard and we’re not getting the treatment we deserve,” said Taylor.
“It’s so frustrating and exhausting.” For her, the impacts are experienced 24/7 and include:
- All waking hours in a wheelchair
- Frequent infections requiring hospitalization
- Dependency on others to get out of bed, get bathed and dressed
- Specialized transportation
Taylor was recently released from a week stay at the hospital due to a kidney infection.
“Because our lungs are so weak, for us to breathe in a day is like running a marathon. That’s the amount of exertion it takes just to breathe and talk everyday,” said Taylor.
Lobbying Ottawa for immediate change
Health Canada has left the funding for Spinraza up to provincial governments and patients. Taylor and Calgary mother Jessica Olstad are lobbying hard and last week went to Ottawa to meet with officials.
Olstad recently lost her infant son to SMA. She created the Love for Lewiston Foundation in Calgary, raising over $118,000 for research.
Calgary baby Lewiston Olstad passed away just before his six-month birthday. For infants like Lewiston with Type 1 SMA, it is rare for them to see their second birthday. Photo courtesy of Shailynn Taylor.
Olstad says her son received his first dose of Spinraza in Alberta, but due to how long it took for him to receive the drug, she said they didn’t see any results.
“There were so many hoops to jump through that by the time he actually did get [Spinraza], it was too late,” said Olstad.
Olstad and Taylor urged officials in Ottawa to recognize treatment with Spinraza is far less expensive than an ICU stay.
The Pan-Canadian Pharmaceutical Alliance is currently in negotiations with the Spinraza drug manufacturing company on behalf of public drug plans, according to Alberta Health.
The hope is to find a price for the drug that will suit everyone’s needs.
“Like other provinces and territories, Alberta will await the outcome of these negotiations before considering next steps,” Alberta Health said in a statement.
Calgary physician hopeful drug will be covered in Alberta
Dr. Jean Mah, a pediatric neurologist at the Alberta Children’s Hospital, says the high cost and limited access is not out of the ordinary for newer treatments of rare diseases.
Shailynn Taylor is a provincial advocate for the SMA community. A spokesperson for Camp Easter Seals, Cure SMA Canada and the Alberta Children’s hospital, the Calgary Mount Royal student often speaks at medical conferences. Photo courtesy of Shailynn Taylor.
“The newer therapies tend to be more expensive. When I say that the current price for Spinraza is on par with other treatments, it does vary depending on the disease, but I certainly think that this is not unusual,” said Mah.
Mah has several patients with SMA that she treats and hopes that the Pan-Canadian Pharmaceutical Alliance reaches an agreement that will allow more families access to the drug.
Olstad has stated concerns that the Alberta Health minister and other government officials aren’t understanding the importance of the treatment and just how many people it will help. She wants people to put themselves in the SMA community’s shoes.
Correction: An earlier version of this story included incorrect Canadian pricing for the drug, Spinraza. A representative from Biogen, the maker of Spinraza, has provided updated pricing, which is reflected in the story. We regret the error.
Editor: Kate Paton | cpaton@cjournal.ca