Frustrated cystic fibrosis patient speaks out after drug coverage denial
Twenty-eight-year-old cystic fibrosis patient Stefan Strecko says he went from jubilation to devastation in just two short weeks, after trying to access a ground-breaking CF drug, Trikafta.
"The drug was essentially pulled out from under me," he says. "I was led to believe I was approved, for something I've been waiting 28 years for."
A 2020 study by researchers at Dalhousie University suggests Trikafta can extend the lives of CF patients and reduce the severe effects of the fatal genetic disease.
The drug was approved for use in Canada in mid-June.
Soon after, Strecko says he checked his Canada Life private health care plan to see if it included Trikafta. He was elated when he says the website indicated he had complete coverage – for a medication which costs roughly $360,000 a year.
Strecko ordered a month's supply after he says several discussions with the insurer confirmed he wouldn't need prior approval.
But when the drug arrived, something went wrong.
"I was told now I needed a pre-authorization form due to the cost of the medicine, and then that pre-authorization form, was denied," he says.
A letter from a third-party claim evaluation group – an independent group of pharmacists called FACET Program under Cubic Health Inc., states in part:
"…despite being a transformative therapy, until the price set by the manufacturer is in line with the health benefits it provides, we are unable to approve this request."
So now Strecko says his medication -- about $25,000 worth- is sitting on the pharmacy shelf.
In an email statement to CTV News in lieu of an interview, a Canada Life spokesperson writes, "Private payer drug coverage varies by plan and is sometimes administered by a third party, in this case by Cubic Health... we've been in communication with the client about his claim and to explain our processes."
The CEO of Cubic Health Inc., Mike Sullivan, also wrote CTV News, stating that it looked at a independent assessments of the drug's cost-effectiveness for its decision, "such as the one conducted by The Institute for Clinical and Economic Review (ICER) in the US, (sic) Trikafta required a very significant price reduction before it could be meet its minimum cost-effectiveness thresholds."
That rationale, says Strecko, doesn't make what happened any easier to take.
"This was supposed to be one of the biggest moments of my life," he says with tears in his eyes, "and it was just taken away from me."
Strecko's case, say cystic fibrosis awareness groups, illustrates the importance of encouraging provincial governments to include Trikafta in public prescription drug plans.
The founder of "CF Loud", one such advocacy group, says Trikafta saved her life after she gained access to it last year through the manufacturer's compassionate access program.
"It meant being able to put aside a lung transplant," says Stephanie Stavros from her Pickering, Ont., home.
She's concerned a recent draft Canadian Health Technology Assessment from the Canadian Agency for Drugs and Technologies in Health (CADTH) – recommends only limited coverage of Trikafta.
Cubic Health's Mike Sullivan says the lack of "supportive Health Technology Assessment information in Canada" was part of the reason Strecko's request was turned down.
"Our hope," says Stavros, "is that CADTH removes the current restrictions that are blocking this medication for a certain section of patients."
In Nova Scotia, a spokesperson for the Department of Health and Wellness tells CTV in an email: "The Pharmacare coverage process in Nova Scotia will continue as quickly as possible once Trikafta has received a positive final recommendation for public coverage via the CADTH Common Drug Review process."
A boxer, Strecko is a fighter by nature and isn't giving up. He's making the case to his insurer that the drug's life changing potential, outweighs any cost.
CTVNews.ca Top Stories
Most of Canada to receive emergency alert test today
The federal government will test its capacity to issue emergency alerts today, with the exception of Ontario, where the test will take place on May 15.
'A huge difference': These adults born in the '90s partnered with their parents to buy homes in Ontario
An Ontario woman said it would have been impossible to buy a house without her mother – an anecdote that animates the fact that over 17 per cent of Canadian homeowners born in the ‘90s own their property with their parents, according to a new report.
OPINION No reunion between Prince Harry and the King signifies a setback for royal unity
Prince Harry, the Duke of Sussex, has made headlines with his recent arrival in the U.K., this time to celebrate all things Invictus. But upon the prince landing in the U.K., we have already had confirmation that King Charles III won't have time to see his youngest son during his brief visit.
Northern Ont. woman makes 'eggstraordinary' find
A chicken farmer near Mattawa made an 'eggstraordinary' find Friday morning when she discovered one of her hens laid an egg close to three times the size of an average large chicken egg.
How Drake and Kendrick Lamar's rap beef escalated within weeks
A long-simmering feud between hip-hop superstars Drake and Kendrick Lamar reached a boiling point in recent days as the pair traded increasingly personal insults on a succession of diss tracks. Here’s a quick overview of what’s behind the ongoing beef.
NEW For their protection, immigrants critical of China and India call for speedy passage of Canada's foreign interference legislation
Canadian immigrants threatened by hostile regimes are urging parliamentarians to quickly pass the 'Countering Foreign Interference Act' so they can feel safe living in their adopted home.
Ontario man devastated to learn $150,000 line of credit isn't insured after wife dies
An Ontario man found out that a line of credit he thought was insured actually isn't after his wife of 50 years died.
Spanish prosecutors recommend 2nd investigation into Shakira's taxes be thrown out
Spanish state prosecutors recommended Wednesday that an investigating judge shelve a probe into another alleged case of tax fraud by pop star Shakira.
Stormy Daniels describes meeting Trump during occasionally graphic testimony in hush money trial
With Donald Trump sitting just feet away, Stormy Daniels testified Tuesday at the former president's hush money trial about a sexual encounter the porn actor says they had in 2006 that resulted in her being paid to keep silent during the presidential race 10 years later.