Kalydeco was approved by Health Canada in 2012. But the treatment comes at a steep cost — $400 a pill. Taken twice a day, it costs patients nearly $300,000 a year.
The Cystic Fibrosis Foundation calls the drug a breakthrough "because it is the first drug to address the underlying cause of cystic fibrosis." It said Kalydeco helps improve lung function and lower sweat chloride levels.
Tim Vallillee of Greenwood, N.S., said Kalydeco could help him live healthier and longer.
“To see my life change the way this drug says it will change is unfathomable,” he said. “Because I’ve lived my whole life knowing what’s going to happen to me the older I get, and it’s not good.”
The 45-year-old's health is deteriorating. For the last year and a half, he’s required an oxygen tank while he sleeps.
“I’m one bout of pneumonia away from being really ill or not here.”
That’s why it’s so frustrating that he doesn’t have access to the medication, he said.
“These drugs are costing so much per person, it’s ridiculous.”
Vallillee is one of only about 100 Canadians with a rare mutation of cystic fibrosis — G551D — that responds to the drug.
The provinces, with the exception of Quebec, have banded together to negotiate a lower price, but after a year there’s still no deal.
Only a handful of Canadians who have private insurance covering the drug are receiving the medication.
“To come to find out that this drug was not going to be given to me because of the price tag involved is extremely frustrating to me and very depressing — knowing that it’s not the Holy Grail, it’s not a cure, but it’s pretty darn close.”
Vallillee said he feels as if he’s on an emotional roller-coaster. The potentially life-changing drug he’s wished for is out of reach, and he's increasingly angry about the situation.
“Don’t make a profit off me and my life," he said, "that’s not fair.”
Vallillee’s wife, Agatha Bourassa, said the family has been aggressively fundraising to try to pay for the pills.
“But we know that fundraising $300,000 a year would be literally impossible,” Bourassa said. “Obviously it’s not an amount that we would ever be able to come up with.”
Still, the family remains optimistic. Vallillee is determined to watch his young son grow up.
Vallillee made his own fake bottle of Kalydeco, which remains empty on the table next to the stacks of pills he’s taking now. He said he pretends to take a Kalydeco pill every day, in hopes of it one day being a reality.
The Nova Scotia Health Department said it's considering covering the medication. But a key factor is whether the price comes down.
His wife has a message for the politicians who are considering the plan.
“I wish that they would really consider that it is the life of a person that’s at stake here.”