Covering the Cost of Chemotherapy: A Brain Tumour Patient Speaks Out

Covering the Cost of Chemotherapy: A Brain Tumour Patient Speaks Out

When Guelph, Ontario resident Lynsey Frangakis finished university and started her career, she never would have predicted how different her life would soon be. After years of headaches that were explained away as a pinched nerve and several month of partial seizures, she was diagnosed with a brain tumour in December 2011. To fight the large oligodendroglioma Lynsey was put on the chemotherapy Temozolomide.

Temozolomide is the chemotherapy standard-of-care for malignant brain tumour patients across Canada and is available only as a pill, referred to often as ‘oral chemotherapy’.

When Lynsey learned her chemotherapy would be something she could pick up at a pharmacy and take at home she was pleased. “That seemed like a really good thing among the chaos I was experiencing,” she explains. “I could take it at home, where I could rest. I didn’t have to travel to the cancer centre which was an hour away, each way. And I wouldn’t be tying up hospital staff with my treatment.”

But when she picked up her prescription at her pharmacy, she was shocked when she was asked to pay a bill – and one that was incredibly expensive. “I am so thankful my dad happened to be with me,” she remembers. It was her father who took out his credit card to cover the cost of that first round of treatment.

“Never once was cost discussed with me,” Lynsey recalls.

In some provinces in Canada, only chemotherapy given in hospital is covered by the provincial health plans. Oral medications, taken at home are not covered, leaving patients to find their way to pay for them. Often this means cobbling together private insurance including getting special approval forms completed), provincial coverage like the Ontario Trillium program (Ontario’s catastrophic drug program) and absorbing large personal costs.

After that initial shock, she then began navigating the maze of what her private insurance could cover, what the Trillum drug plan could cover and how to cover the remaining costs with family and friend support. “We did a lot of fundraising and it was hard because everyone thinks chemotherapy is paid for, sometimes I felt like people didn’t believe that’s why we needed the money.”

When she talks about the issue and learns about the differences in how patients are covered across Canada, Lynsey is shocked. “It makes absolutely no sense that the standard-of-care for brain cancer is not covered equally for all patients. People should not have to struggle to pay for medication they need – it’s such an unnecessary stressor, especially when you should be focused on getting well.”

Today, Lynsey is still paying the debt accumulated from her first round of treatment, in 2012. She, her husband, and family are understandably concerned about what will happen if she needs to go back on Temozolmide in the future. She’s had conversations with her doctors and if it’s needed, the next course of treatment would be daily doses of the drug, for a year. The estimated cost will be more than $100,000. It’s a looming, uncertain reality that Lynsey wants to see changed, not just for her, for all patients in Canada.

Brain Tumour Foundation of Canada has joined with more than 20 other cancer groups to demand CanCertainty for all cancer patients when it comes to their chemotherapy. 60 per cent of all new cancer treatments being developed are oral medications - including Temozolomide for brain tumours. And Temozolomide is the standard of care chemotherapy for brain tumour patients. Yet, in several provinces this, and many other provincially approved oral treatments for cancer patients are not covered the way IV treament is. Patients must navigate a complex maze of programs and plans to find financial relief while in contrast, patients can access IV treatment at no cost and no wait time regardless of income or insurance coverage. It's time for change. Find out more about this issue at and lend your voice to the call for fairness.

What would Lynsey tell a newly diagnosed patient about this issue?

  • When your doctor starts talking about drugs, immediately ask about cost
  • Look for support, like a drug navigator in your hospital and connect with them
  • Call your provincial drug program (like Trillium in Ontario) as soon as possible to learn if you qualify and any steps you need to take
  • Call your private insurance, if you have it, as soon as possible to learn what you need to do. Many private insurance companies require preapproval before they will pay for these types of treatments
  • If you have private insurance, stay on top of your ‘insurance year’ – with annual resets you may need to reapply for approval of medication and if it’s not done you could be required to cover the full cost of a round of treatment unexpectedly.

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Story posted: March 2014

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