Man denied cystic fibrosis drug by one insurer has it approved by another

A Halifax man denied a cystic fibrosis drug by one insurance company has had it approved by another.

Stefan Strecko was devastated last month after his approval for Trikafta, what some consider a groundbreaking drug, was revoked.

His partner of three years was able to add him to her insurance plan with Sun Life.

"It's giving me a lot more peace of mind, even though I've only been on it for two weeks, I feel like my health is, like, stabilized almost," said Strecko, 28.

Cystic fibrosis is a genetic disease that causes lung infections and reduces the ability to breathe.

Saw improvements after a few doses

Sun Life is one of the few insurance companies in Canada that covers the drug. Strecko said he has not heard anything from Canada Life since it denied him coverage.

"It was much easier with Sun Life than my previous application with Canada Life," said Strecko. "I was added to her plan, and it was a quick couple of phone calls between Sun Life and the pharmaceutical company."

Strecko said he was able to pick up the pills shortly after and he saw improvements after his first few doses.

"I saw changes, probably within the first three days of taking it," said Strecko. "I really felt a lot clearer and drier and overall was coughing much, much less, which is a huge difference for me."

Strecko said the cost is about $25,000 per month. Sun Life will cover 80 per cent and the remainder is subsidized by the pharmaceutical company.

Strecko said he's had some side effects, but nothing major.

"I just had some pretty bad congestion, a sore throat, things like that probably lasted three days, and then I felt better after that," he said. "It's not a bad trade-off."

This is the first modulator drug Strecko has taken.

Until now, Strecko has taken drugs that treat the symptoms of cystic fibrosis. Modulator drugs actually seek to improve the faulty protein that people with cystic fibrosis produce.

Small price to pay

Trikafta repairs the protein that causes people with CF to have a thick buildup of mucus in the lungs and pancreas.

Strecko said Trikafta will be part of his treatment for the foreseeable future or at least until something better comes along, and that adding three more pills to the 50 per day he already takes is no big deal.

He said it's a small price to pay for extending his life and bettering his health.

"I'm definitely less worried and less anxious kind of about my health and how things are going to be. And it just gives me a lot of hope for normalcy and in the future."

The Canadian Agency for Drugs and Technologies in Health, a national organization that determines the clinical and cost-effectiveness of prescription drugs, recommends Trikafta be reimbursed by public drug plans.

However, it states the coverage should extend only to those who have at least one F508del mutation, and they must have a measure of lung function of 90 per cent or less.

Strecko thinks that is unfair.

"It's great for some people that can get it, obviously, but for others, they're kind of going to be left waiting, saying, 'Do I have to get sick or to get on this medication?'"

Additionally, the agency's recommendations aren't binding.

Still fighting

Strecko said he's excited to have received Trikafta and happy that some others will be able to get it, too.

However, he's not giving up the fight to get the drug covered for all CF patients by the federal government.

"My heart breaks a little bit to see people still waiting for it," he said. "We're all in this as a team together, and I just hope that all the CF patients can get it too because I think that's the most important thing."

Sun Life was not immediately available for comment.

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