VANCOUVER -- Nicole Stringer has been meeting with surgeons about the possibility of having a double-lung transplant. The risky procedure worries her, but she admits it may be necessary because she is struggling in her battle with Cystic Fibrosis.
“It scares me, because I’m not ready to not have a life past this,” she told CTV News from her home in Kelowna.
There has been a breakthrough in Cystic Fibrosis treatment, a drug called Trikafta. It’s available in countries around the world, including the United States and the Untied Kingdom, but not in Canada.
“Within four hours, it took away a decade of damage in my lungs,” said Stephanie Stavros, who began taking the drug in January. “It was an absolute 180 after 24 hours of taking it.”
Health Canada needs to approve the drug before it’s available to Canadians, but so far the manufacturer, Vertex, hasn’t provide a sample for testing.
At US$311,000 per year, cost is an issue.
“Vertex has strong concerns that new Canadian medicine-pricing reforms have the potential to limit access to treatments for Canadians living with a rare disease,” a Vertex spokesperson wrote in a statement.
The company and Health Canada confirmed they have been negotiating since the fall of 2019.
“Vertex Pharma has not filed a submission to market Trikafta in Canada,” wrote Health Canada in its own statement. “Under the Food and Drugs Act and its regulations, all products sold or marketed in Canada and making a therapeutic claim need to be approved by Health Canada.”
“Breaks my heart because there’s nothing I can do to help it,” said Jocelyn James, whose son Steven, 17, also suffers from the disease. “You don’t want to see your child suffer, and there’s a medication that’s available that can stop this.”
“This drug would give me my life back. I haven’t had a life for 5 years now,” said Stringer, who has spent days on end in hospitals.
Cystic Fibrosis Canada states on its website that CF is “the most common fatal genetic disease affecting Canadian children and young adults.”
It stresses an agreement is needed between both parties urgently.
Correction:
A previous version of this story incorrectly attributed Stephanie Stavros' quotes to Taylor Joron.
