Frustrated cystic fibrosis patient speaks out after drug coverage denial

HALIFAX -

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.