It’s a drug that could be life-saving for a 10-year-old Calgary boy. The problem is his family and dozens of others in similar situations can’t afford it.
Spinraza is used to treat Spinal Muscular Atrophy (S.M.A.), a rare disease 10-year-old Evan Palmer was diagnosed with as a baby.
In a nutshell S.M.A. is a genetic disease that destroys the motor neurons in the spinal cord. It’s degenerative, and can lead to early death. Even a simple cold or flu, like the one Palmer is getting over now, could end up costing him his life.
“It’s not fun. You can barely get any sleep and if it gets worse… I could get pneumonia. Just like that. Done,” Palmer said.
The good news? The research proves really positive for other children who have used the drug. They’re now seeing their disease essentially stopped in its tracks.
But the cost of the medication is astronomical: about $750,000 for just the first year of treatment.
Health Canada approved the drug last June, but the federal drug review board has recommended that provinces should not cover it, except in the most severe cases.
Alberta Health Services released the following statement Friday:
We recognize this disease can be severely limiting. We also understand that families want access to medications and therapies that provide a better quality of life and potential for improved mobility.
As is normal process, once a drug is approved by Health Canada, it is reviewed by the Canadian Drug Expert Committee and potentially negotiated through the pan-Canadian Pharmaceutical Alliance before provinces decide how a drug may be funded. In the case of Spinraza, the pan-Canadian Pharmaceutical Alliance process is forthcoming.
But for Evan and about 30 other Alberta kids, time matters. There are at least nine kids with the disease in Calgary. Two babies with that diagnosis died last year.
“It’s kind of like dangling a carrot of hope that we can’t actually get yet,” Kira Palmer, Evan’s mom said.
“If it’s not covered, it’s not an option.”
For now, the family is asking Albertans to write their MLAs for support.
“We need people to know that it exists and that it’s really important and that this medication is literally going to save lives,” Kira said.