A Calgary woman living with metastatic breast cancer is asking Alberta to continue funding a drug she says has shrunk her tumours and kept her disease stable, after being told she had reached the treatment limit. Robyn Crawford says she now faces paying $9,700 every three weeks for pembrolizumab, an immunotherapy sold under the brand name Keytruda. On Monday, she says, her oncologist called with news she never expected. Her next infusion was scheduled for the following day. “As a cancer patient, the idea of an unexpected phone call from your oncologist is always scary, but you’re thinking bad news on a scan, you know, bad news about your cancer,” Crawford said. “Like it never even crossed my mind that this could be the bad news on the other end of that phone call.” Crawford says she was initially diagnosed with early-stage breast cancer in 2022. Despite chemotherapy, surgery, radiation and other drug treatments, her cancer spread in 2024 while she was receiving treatment. She says she has been receiving pembrolizumab since then for triple-negative metastatic breast cancer. Her tumours have shrunk and remained stable for about a year. “And in the world of metastatic breast cancer, stable is a win,” she said. “So the fact that I have a couple of teeny, tiny stable tumours is fantastic, and I’m doing well.” Crawford says she experiences extreme fatigue and brain fog, and is unable to work. But she says her oncologist wants her to continue receiving the drug. “My oncologist has been clear that he wants me to stay on this drug,” she said. “So yeah, the the idea that this drug is being taken away from me purely for a funding reason is very hard to handle.” Treatment decisions Stephen Piazza, director of advocacy with the Canadian Cancer Society, said treatment decisions should be led by patients’ oncologists and health-care teams. “It should not be up to what you could afford or what private insurance you have when it comes to cancer treatment in Canada,” Piazza said. He could not assess Crawford’s individual case or the evidence for pembrolizumab. Drug-funding criteria Chris Gallaway of Friends of Medicare, which advocates for universal public pharmacare, said funding policies should allow patients to continue treatment recommended by their oncologists. “Absolutely, and it’s really about, you know, if it’s the oncologist who’s recommending this drug, that they think it will be helpful, then it should be covered,” Gallaway said. “That should be the decision that we’re in.” Alberta’s published cancer-drug funding criteria set a maximum of 35 cycles at three-week intervals, 18 cycles at six-week intervals, or two years, whichever is longer, for eligible patients with metastatic triple-negative breast cancer. That limit also appears in the Canadian reimbursement recommendation. In a written statement, Cancer Care Alberta acknowledged the difficulty patients and families face when treatment is working well, but said it could not discuss individual cases. “The two-year treatment timeframe for Pembrolizumab (Keytruda) reflects the clinical evidence available on its safety and effectiveness,” the statement said. “Fixed two-year funding limits are standard across public drug programs in Canada for immune checkpoint inhibitors used to treat several types of cancer.” It said evidence supporting longer treatment remains limited. “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 trial found pembrolizumab helped eligible patients when combined with chemotherapy, but treatment was capped at about two years. It did not establish whether continuing the drug beyond that point would help. ‘Punished for doing well’ Lorian Hardcastle, a University of Calgary law professor and health-policy expert, said funding decisions must balance the available evidence with the needs of individual patients. “And then we get in this difficult position of, well, no evidence doesn’t necessarily mean they wouldn’t work,” Hardcastle said. “It just means the studies haven’t happened yet.” She said funding reviews consider the seriousness of a condition, a treatment’s effects on survival and quality of life, and its cost compared with other drugs. The challenge is balancing individual patients’ needs against a finite budget, she said. “And so the goal of having a Canada drug agency that makes recommendations is to try to use dollars as cost effectively as possible.” That can mean patients do not qualify for treatments that might help them, Hardcastle said. For Crawford, reaching the funding limit while her cancer remains stable feels like a penalty for responding to treatment. “I feel like I’m being punished for doing well,” she said. Crawford says her oncologist has discussed reducing the dose or frequency to lower the cost, or stopping treatment and monitoring her cancer. Other drugs remain an option, but she worries about changing treatment after her experience with previous medications. “There are other options for me, but you don’t know they’re going to work until you try,” she said. “And by the time you’ve got cancer growing in you, you there’s a timeline for how long you have to find a drug that works before it’s too late.” Exceptional-access gateway Gallaway said the province should intervene in Crawford’s case and review its policies for other patients facing similar limits. “But it’s totally a decision of the provincial government and our provincial formulary and the cap that they’ve put on it, and those are all policies that could be changed today,” he said. Piazza said provinces generally have exceptional-access pathways through which clinicians can request coverage outside public funding criteria. Manufacturers may also offer compassionate-use programs, but neither route guarantees access. “The issue becomes that there’s no guarantee that that case would be accepted,” he said of exceptional-access requests. Private insurance can also fall short as expensive cancer drugs quickly exhaust annual coverage limits Piazza said . CTV News has reached out to Merck, which manufactures Keytruda, to ask whether a compassionate-access program is available to patients in circumstances like Crawford’s. Private insurance can also fall short as expensive cancer drugs quickly exhaust annual coverage limits, Piazza said. The national reimbursement recommendation for pembrolizumab says restarting it at relapse could be reasonable for some patients who stopped before their disease progressed, with up to another year of treatment at their physician’s discretion. That guidance does not guarantee provincial coverage or recommend uninterrupted treatment beyond the initial limit. Cancer Care Alberta’s statement did not address whether funding exceptions are available or whether Alberta would fund retreatment in circumstances such as Crawford’s. Crawford says she had no warning that her funding was about to end. Hardcastle said patients need enough notice to explore insurance coverage, other treatments or financial assistance. “I think what’s less common and what certainly shouldn’t have happened in this case was the short notice,” she said. “They may want to look into other options, and that takes time.” Patients need early information Piazza said patients need early information about coverage limits, along with navigation support to help them find other sources of coverage. “So the more you know ahead of time about what that would look like, the better position you may be to start having some of those conversations,” he said. Gallaway said an unexpected treatment bill adds to the strain patients already face. “And it’s upsetting. You know, you’re already dealing with a cancer diagnosis with treatment, and then you’re told it’s going to be thousands of dollars,” he said. “It shouldn’t be the way our system works, and it’s something we should work to change.” Crawford received the news while visiting family in British Columbia. On the drive back to Calgary, she pulled off the highway to take a walk and calm her nerves. “I was buzzing with, you know, fear and anger, and I can’t believe that this is happening. Just in such shock.” She recorded a video and posted it on Facebook, initially intending it as an update for friends and family. Piazza said patients should not have to master the health system to obtain care. “Patients should not have to be experts in the health system, and should not have to advocate for individual access,” he said. “Unfortunately, all too often, that is what happens.” Crawford hopes speaking publicly will help her and others facing the same funding limit. “I’m hoping that AHS will decide to have some flexibility and some humanity in their policy, and allow for patients like me who are doing well on a drug to be able to continue to be funded,” she said. “So, I mean, I’m trying to get the drug for me, but I’m also trying to make it so that other patients in the same boat will not have to deal with this.”
