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
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
An emergency slide falls off a Delta Air Lines plane, forcing pilots to return to JFK in New York
An emergency slide fell off a Delta Air Lines jetliner shortly after takeoff Friday from New York, and pilots who felt a vibration in the plane circled back to land safely at JFK Airport.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
Decoy bear used to catch man who illegally killed a grizzly, B.C. conservation officers say
A man has been handed a lengthy hunting ban and fined thousands of dollars for illegally killing a grizzly bear, B.C. conservation officers say.
'I was scared': Ontario man's car repossessed after missing two repair loan payments
An Ontario man who took out a loan to pay for auto repairs said his car was repossessed after he missed two payments.
First court appearance for boy and girl charged in death of Halifax 16-year-old
A girl and a boy, both 14 years old, made their first appearance today in a Halifax courtroom, where they each face a second-degree murder charge in the stabbing death of a 16-year-old high school student.