A Pickering mother fighting cystic fibrosis is calling for all levels of government and stakeholders to take action and bring what is being called a life-changing drug to Canada.
The medicine treats cystic fibrosis and was approved in the U.S. this year but it could still be years before it’s available to Canadian patients.
“This medicine could change everything,” Stephanie Stavros says.
She’s been fighting the disease since birth and says if the medicine, called Trikafta, was brought to Canada — her life would be transformed.
“Being able to have a drug that you no longer decline, you actually improve, is groundbreaking,” the 36-year-old says. “You never see this with CF patients, ever.”
The disease varies from each patient but mainly can affect the lungs and digestive system.
The debilitating disease has taken a toll on Stavros. She says, in her case, she only has 35 per cent of her lung capacity — meaning constant treatment.
“It takes a lot of time to maintain my health and just stay a healthy mom,” says Stavros.
“For me, the impact has mainly been my respiratory system, I get chronic lung infections. I’m often in the hospital.”
“It can be very frustrating,” says her husband Jim Stavros. “It’s emotionally taxing, but one of the things we do is we have to stay positive.”
Stavros says Trikafta could drastically improve her quality of life — but without it, she fears the worst.
“My fear is that I’ll be far too sick to be a good mom,” she says. “I do not want to let my family down.”
According to the FDA, the breakthrough therapy treatment has been approved for 90 per cent of the cystic fibrosis population, roughly 27,000 in the United States.
The apparent evidence has already been shown online — with dozens of cystic fibrosis patients posting their own experiences on social media. Some people even claiming it doesn’t even feel like they have the disease after just three weeks of treatment.
A thought that can be a bit of a tease for Stavros, who can just watch.
“I just have to witness friends south of the border, reaping the benefits,” she says. “I’m watching their videos and I’m crying happy tears, and there is a part of me that wants this for me. I want to live too.”
Although it was approved in the U.S. this past October, officials with Cystic Fibrosis Canada say it could take years for our country to see the drug. Kim Steele, government relations with CF Canada, says the time is now for Canada to build a rare disease strategy.
“We need Canada to step up and bring these rare disease drugs in through a separate process,” says Steele.
The company called Vertex still has yet to submit Trikafta for approval to Health Canada.
Stavros says it’s her hope it comes sooner rather than later so she can have a better life with her family.
“I want to be here for all of the milestones. I want to see them thrive.”
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