Members of the cystic fibrosis (CF) community are calling for a drug that’s being described as a life-saving miracle treatment to be fast-tracked by Health Canada.
“We’ve been waiting and I don’t think we should wait any longer,” said Stefan Strecko, a 28-year-old from Halifax who’s lived with CF his entire life.
“There’s people that need this. I need this. Now’s the time we need to fast-track it.”
He’s talking about Trikafta, which is a combination of three drugs created by American pharma company Vertex.
According to a study conducted by Dalhousie University, the drug has the potential to treat 90 per cent of cystic fibrosis patients in Canada.
Cystic fibrosis is a genetic disease that attacks the lungs and digestive system. There’s currently no cure.
According to Cystic Fibrosis Canada, there are about 4,000 people with the disease in Canada and 250 in Nova Scotia.
Strecko is one of those patients, and has been calling for Trikafta to be approved for use in Canada for the past two years.
The drug is already available in the U.S. and the U.K., but not in Canada.
“Living with CF was challenging obviously to start with, but with COVID it’s added a whole new dynamic to it,” said Strecko.
“Being compromised with a respiratory condition like cystic fibrosis has made us have to act much more careful.”
On Monday, Cystic Fibrosis Canada announced that Vertex made the decision to move forward with Trikafta in Canada.
For Strecko, it was a day that couldn’t come soon enough.
“It’s just like my 28 years living with CF kind of cumulated into that one moment, knowing that things were going to be different for us,” said Strecko,
“It’s the closest thing to a cure that we’ve ever had, and you can just see the excitement from parents and kids, and someone who knows someone with cystic fibrosis.”
According to a government spokesperson, Trikafta does not yet appear on Health Canada’s list of Submissions Under Review (SUR). Geoffroy Legault-Thivierge said once the drug submission is filed with Health Canada, it will appear on the SUR list.
“At this time, Vertex Pharma has not provided a NDS to market Trikafta in Canada,” said Legault-Thivierge. “As per the SUR list, there are currently no cystic fibrosis products under review.
“Health Canada continues to communicate with Vertex Pharma with regard to this product.”
Kim Steele, CF Canada’s director of government and community relations, says while Vertex’s intention to come to Canada is exciting, there’s still work to do.
“We took it all in, then we immediately got down to business,” said Steele.
“There’s still a road ahead where we need to still fight for access, still get the provinces to pay for these medicines for everyone who needs it, not just those who are terribly sick.”
Trikafta could cost upwards of $400,000 a year without insurance. Stecko says getting the drug into the hands of CF patients across Canada should be of high priority.
“I’ve been waiting 28 years for this, so it’s just amazing if I can get it within the next year,” he said.
— With files from Dan Spector.