She needs $12K-a-month drug to treat incurable cancer, but insurance won’t pay

When 43-year-old Sophie Djeme-Mi Koumazock was told her incurable metastatic breast cancer was no longer responding to her medication, she was reassured knowing she had another option.

Her doctor said her profile made her a candidate for the drug Truqab. While it wouldn’t cure her, it would give the Quebec City mother of four young kids more time with her family.

But her hope didn’t last long. 

Costing up to $12,000 a month — double her previous medication that had been covered by her insurer Canada Life — Djeme-Mi Koumazock was shocked to learn she wouldn’t be reimbursed for the new treatment. 

“It’s destroyed me. I didn’t know what to do,” she said.

While Quebec’s health insurance board covers Truqap under exceptional circumstances, federal public servant Djeme-Mi Koumazock is enrolled in the Public Service Health Care Plan (PSHCP). Administered by Canada Life, the federal plan does not cover the drug. 

Djeme-Mi Koumazock contacted her employer and union. While her union is helping her with her case, she’s been told the decision is policy. She’s now forced to pay out of pocket until she finds a solution.

“I need this medication to survive, I never would have thought they would hit me with a no,” she said. “I want to live.”

In its refusal letter sent to Djeme-Mi Koumazock on June 19 and reviewed by CBC News, Canada Life wrote its program requires the review of “factors such as [the drug’s] efficacy, safety, and cost effectiveness.”

It said following a review conducted by “qualified health-care professionals at Canada Life,” the PSHCP Prior Authorization Program determined the drug is excluded from coverage.

In an emailed statement to CBC News, Canada Life said as plan sponsor, the Government of Canada determines what is covered under its benefits plan. 

This includes any differences from what may be covered under Quebec’s health insurance board, the Régie de l’assurance maladie du Québec (RAMQ). 

In an emailed statement, a representative for the Treasury Board of Canada, which manages PSHCP policy, says the optional health-care plan offered to eligible public service employees, pensioners and dependants is designed to supplement provincial and territorial health insurance plans.

But it says the PSHCP is not required to provide the same basic coverage as RAMQ.

The Treasury Board confirmed Truqap is not an eligible prescription drug under its PSHCP prior authorization program.

But Djeme-Mi Koumazock doesn’t understand why this gap exists. She calls it “inequity.” 

“Why, between two Quebecers, could one have access to this medication and not me?” she asked.

Djeme-Mi Koumazock’s oncologist, Dr. Brigitte Poirier, says Truqap is a good option for her patient and that the efficacy of this treatment is proven by the literature. 

Poirier, a surgical oncologist at CHU de Québec-Université Laval and head of its breast cancer centre, says it’s about controlling the disease the best they can. 

“When the medication we are giving stops [working] … and we lose the control, we have to change the treatment,” she said. “It’s the thing we have to do now.”

While there are other options for Djeme-Mi Koumazock, including chemotherapy and other anti-hormonal medications, “we want the best for our patients,” Poirier said.

“It’s not easy for someone [who is] like 43 years old with young kids. We want to give them time.” 

Djeme-Mi Koumazock wants that too. It’s part of why she and her partner decided to temporarily dip into their savings —  and retirement fund, if necessary —  so she can start the treatment as soon as it is available.

Djeme-Mi Koumazock is now waiting for a response from Beneva — her partner’s insurer — to which she has now been added as a beneficiary. 

In an emailed statement from Beneva, it confirmed Truqap is part of its standard plan, since it applies the criteria established by RAMQ — therefore counting the medication as an exceptional drug.  

Djeme-Mi Koumazock has called RAMQ numerous times and spoken with agents to request that the provincial agency step in.

CBC News asked RAMQ if it would cover the cost of the medication if her partner’s insurance also refuses to pay. 

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In an emailed statement, RAMQ did not answer if it would cover the medication, but pointed to the fact that private insurance, provided through an individual’s partner, should be able to cover costs.

“It’s very unlikely that two different insurers refuse to reimburse a medication that RAMQ would accept to cover and, to our knowledge, a situation of this kind has never been brought to our attention,” read the statement.

The process to get medication covered took Nathalie Samson from Saint-Philippe, Que., months when she was in the same situation as Djeme-Mi Koumazock earlier this year. 

Diagnosed with metastatic breast cancer in 2022, she had been on medication for years in an effort to stop the progression of the Stage 4 disease. 

But this past December, her body stopped responding and her care team referred her to try the drug Truqap.  

“This is when the battle started,” said Michel Boulay, Samson’s partner. 

“She experienced a lot of stress, she was sick. This lasted four and a half months.” 

As a federal employee, Samson was also denied coverage under the Canada Life plan. 

Boulay requested Samson be brought onto his work insurance plan with Manulife in February. She was able to get coverage for Truqap through Manulife and AstraZeneca — the drug manufacturer.

Around March, Samson’s cancer began to stabilize while she was still taking her old medication. But if things worsen, she says she now has the ability to start taking the new drug.  

Samson spoke to the media about the ordeal in the spring and says she doesn’t “want this to happen to someone else.”

“I’m very happy that someone else is coming forward and taking charge because there will be others,” she said. 

In situations where insured clients’ claims are refused, Patrick Martin-Ménard, a medical attorney, said people should exercise their right to a review request. 

While he has not analyzed either of the women’s cases, he noted that contesting the refusal of a claim or even hiring a lawyer or expert for a case can be a lengthy process.

“Obviously, patients are already dealing with significant health issues and all the challenges that come with it. And then they have to add this battle on top of that,” he said. 

“I think that is certainly a consideration that insurance companies should have when making this type of decision.” 

Djeme-Mi Koumazock doesn’t want to put fault on her insurer, but is just trying to get the case settled as fast as possible for both her and her family’s sake. 

“I have the right to get answers,” she said. 

“These steps are long and I don’t have a lot of time.”