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
Bodies recovered in Mexico likely 2 Australians, 1 American who went missing: officials
Three bodies recovered in an area of Baja California are likely to be those of the two Australians and an American who went missing last weekend during a camping and surfing trip, the state prosecutor’s office said Saturday.
Maple Leafs eliminated from NHL playoffs with Game 7 OT loss to Bruins
Sheldon Keefe told his players hockey history would remember them one way or another.
Israel says Hamas attacks a crossing point into Gaza, wounding 10 Israelis and forcing its closure
Hamas militants on Sunday attacked Israel's main crossing point for delivering humanitarian aid into the Gaza Strip, reportedly wounding several Israelis and prompting Israel to close the terminal.
No proof man lied to brother about number of kittens born in litter, B.C. tribunal rules
A man was denied a $5,000 payout from his brother after a B.C. tribunal dismissed his claim disputing how many kittens were born in a litter.
What a judge's gag order on Trump means in his hush money case
A gag order bars Trump from commenting publicly on witnesses, jurors and some others connected to the matter. The New York judge already has found that Trump, the presumptive Republican nominee for president, repeatedly violated the order, fined him US$9,000 and warning that jail could follow if he doesn't comply.
Amid climate change warnings, Canadians lukewarm on electric vehicles
Amid scientists' warnings that nations need to transition away from fossil fuels to limit climate change, Canadians are still lukewarm on electric vehicles, according to a study conducted by Nanos Research for CTV News.
Trudeau 'absolutely' best person to lead the Liberals in next election: LeBlanc says
Cabinet minister Dominic LeBlanc insists he's not planning a leadership campaign to head the Liberal party, should current leader and Prime Minister Justin Trudeau resign, seemingly quashing rumours he's planning to make a move for his boss' job.
Netanyahu's Cabinet votes to close Al Jazeera offices in Israel after rising tensions
Israeli Prime Minister Benjamin Netanyahu said on Sunday that his government has voted unanimously to shut down the local offices of Qatar-owned broadcaster Al Jazeera, escalating Israel's long-running feud with the channel at a time when cease-fire negotiations with Hamas — mediated by Qatar — are gaining steam.
King Charles III’s openness about cancer has helped him connect with people in year after coronation
King Charles III's decision to be open about his cancer diagnosis has helped the new monarch connect with the people of Britain and strengthened the monarchy in the year since his dazzling coronation at Westminster Abbey.