Calgary woman says she was never told about coverage cap for life-saving medication

A Calgary woman is facing a $9,700 bill every three weeks to continue her life-saving cancer treatment after finding out there’s a cap on the number of treatments covered by Alberta Health Services.

Robyn Crawford, 44, was diagnosed with early-stage breast cancer in 2022 and despite a variety of treatments including radiation, chemotherapy and surgery, the cancer had spread to her lungs, reaching stage four by 2024.

Since then, she’s been on an immunotherapy medication called pembrolizumab, also known by the name Keytruda. It is administered every three weeks and has been very successful. In fact, she’s already outlived the prognosis she was given before starting the treatment.

“The tumours in my lungs have shrunk significantly. I now have two very small nodules in my lungs that have been stable,” she said.

“In the world of metastatic cancer, stable is great,” she added. “When there’s nothing showing up on a scan, you’re considered ‘no evidence of disease,’ and that’s as good as it gets for metastatic cancer. The assumption is there is always cancer circulating through your body, it just hasn’t found a place to land yet.”

For that reason, she’ll need to be on treatment for life. But on Monday, she was informed the treatment she was scheduled to receive on Tuesday would cost her nearly $10,000 — the first time she was ever told she would be required to pay, she said.

“As a cancer patient, there’s always the fear of getting a call with bad news from your oncologist. But it just never even occurred to me to fear this type of bad news,” she said.

“You expect bad news on a scan or something, but the idea that hey, starting immediately, your drug isn’t covered — it was just a complete shock.”

She decided not to go forward with Tuesday’s treatment, opting to take more time to consider and look into what other options might be available to her.

“My understanding is, it is an AHS policy that there’s a maximum number of treatments that they will fund for this drug,” she said.

“The communication certainly could have been better . . . We should have been having conversations about what this would mean for me, and possible adjustments to dosage, and giving me time to look at other avenues of potential funding.”

Her hope is that AHS is able to provide an exemption, given her success with the treatment. She’s also looking into coverage through her partner’s benefits, but said they’re not likely to cover much, if at all.

Cancer Care Alberta was unable to comment on Crawford’s case, but said the two-year treatment timeframe for pembrolizumab is based on available clinical evidence on its safety and effectiveness. 

“Fixed two-year funding limits are standard across public drug programs in Canada for immune checkpoint inhibitors used to treat several types of cancer. Currently, there is limited clinical evidence supporting continued treatment beyond 24 months, and longer-term use may carry additional health risks. That said, other fully-funded treatment options remain available,” the agency said. 

“We remain committed to ensuring cancer patients have access to safe, effective treatments, guided by the best available medical evidence, while supporting patients and their care teams in determining appropriate treatment options.”

But given that other methods of treatment haven’t worked for her, Crawford said difficult choices lie ahead if no other funding options are available.

“The considerations that I discussed with my oncologist (Tuesday) were reducing the dose, reducing the frequency as options to make things cheaper . . . or coming off of it for a period and doing scans to see whether cancer has appeared, whether tumours are appearing in my body.

“It would just be coming off the drug, waiting and hoping for the best.”

The last two days have been overwhelming, she said, leaving her “scared and angry.”

“I’m finally on something effective, and now I can only access it if I’m rich enough to pay enormous amounts of cash out of pocket, or lucky enough to have unusually good health insurance. It feels like I’m being punished for the fact that the drug continues to work well for me,” she said.

“I just think there needs to be some flexibility and humanity in the funding policies for patients like me, so our oncologists can keep us on a drug that is working successfully. And I don’t want this to happen to anyone else. I don’t want anyone else to get that kind of phone call.”

The financial burden for most stage four cancer patients — many of whom aren’t able to work — already weighs heavily, she said.

After sharing her story to social media Monday, Crawford said she’s received many messages of support, but also many of fear and anger.

“Patients have a million things to fear with cancer, but now suddenly this is on a lot of patients’ minds as another fear,” she said.

“It’s been overwhelming, the amount of support both from the cancer community and from just the wider community online,” she added.

“I think so many people have been touched by cancer, and the idea of a loved one losing access to a life-saving drug is terrifying for everyone. So I think this has really resonated with people for that reason.”

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