A Kirkland family made the trip to Ottawa Tuesday to ask the government to help pay for the medication that could save their 17-year-old son's life.
Sammy Cavallaro suffers from spinal muscular atrophy (SMA), a genetic disease which affects mobility in children that eventually leads to paralysis and even death.
"I love life. I have amazing friends and family that support me every day and do everything to take care of me," Sammy told CTV Montreal.
While he is able to attend John Abbott College SMA leaves him needing assistance to eat, move and many other day to day tasks many others take for granted.
The disease is treatable with a drug marketed under the name Spinraza.
By injecting the drug directly into the spine it can regenerate a protein that is missing in those with SMA.
The problem for the Cavallaro family, and the thousands of others across Canada: it costs $750,000 US for the first year and insurance companies
“I find it crazy that people won’t pay for something that saves thousands of lives, thousands of lives made better,” Sammy said. “I just don’t understand it.”
The drug was approved by Health Canada but a report last year by the Canadian Agency for Drugs and Technologies in Health recommended it only be used by patients with the most severe form of SMA.
"I was so happy, I thought all our hard work of fundraising has finally paid off, we have a treatment," Sammy's mother Rosa said. "Once it was approved in the U.S., we thought for sure we're next... There's some things in life you don't put a price tag on and life is one of them."
In a statement, the Quebec health ministry said it covers effective treatments regardless of expense but took recommendation of the CADTH's December report into account when it decided against covering Spinraza.
A spokesperson for the ministry told CTV Montreal they are trying to team up with other provinces to negotiate a better price for the treatment with the manufacturer.