Stefan Strecko has been living with cystic fibrosis (CF) for his whole life, so when a new life-changing drug was approved by Health Canada in June, he was excited about the possibilities.
“Trikafta is the most amazing thing that’s come out for cystic fibrosis since the gene was discovered in the 1990s,” said Strecko.
The drug is made up of three components that work together to target the mutation of cells that causes CF.
“Trikafta is shown to show incredible results with every symptom of CF,” said Strecko.
Currently, the 28-year-old says cystic fibrosis causes him to constantly feel sick, and every year he has multiple serious lung infections that require him to take antibiotics to treat.
Even on good days, he requires constant self-care to ensure he stays as healthy as possible.
“I take 60 pills a day as well as do an hour or two of aerosol treatments,” said Strecko.
“CF dominates my life.”
Strecko says Trikafta would dramatically improve the quality of his life.
In July, Strecko says he learned that Trikafta would be approved by his private insurance with Canada Life. He says he went through the insurer’s approval process and, once authorized, he ordered a month’s supply of the medication.
“After the medication was ordered and shipped to my local pharmacy, they made a policy change the same day and denied my request, leaving that medication at the pharmacy.”
Now, the medication remains at the pharmacy, just out of reach for Strecko, who can’t afford it — at a cost of about $25,000 a month — without insurance.
In a statement from Canada Life, a spokesperson says that it “truly was a rare situation” and “is essentially a system timing error.”
The statement explains that the system didn’t have the most up-to-date information when Strecko checked online and contacted the call center.
“He was led to believe the drug was fully covered with no prior authorization. This was not actually the case,” the statement reads.
Strecko says it’s frustrating and he’s looking into if there are any legal avenues to get the medication through his insurance but says the ultimate goal is to have the province cover the cost.
“Currently, people who are dying from CF do not have access to this medication, which I think is extremely unfair,” said Strecko.
While the drug was approved by Health Canada, in order for it to be covered by provincial programs, it has to be assessed by the Canadian Agency for Drugs and Technologies in Health. That process includes having an independent committee of experts provide recommendations regarding coverage for the drug.
Strecko says a draft of those recommendations was released earlier in the summer, but the criteria for who qualified was very limited, causing an outcry from CF clinicians, doctors and advocacy groups. The revised recommendations are expected to be released in September.
“At that point, it’s up to our elected officials to decide if it’s going to be covered, so we need to push to get it covered and get it into the hands of people with CF,” said Strecko.