Kamloops woman with stage 4 bile duct cancer pushing for coverage of expensive treatment

KAMLOOPS — A Kamloops woman is hoping the province will make an exemption to ensure the steep cost of her cancer care medication is covered.

Kenda Brown is one of a small number of people in Canada with stage four cholangiocarcinoma, a form of bile duct cancer. She was diagnosed with the rare cancer a year-and-a-half ago.

“They usually give you six months to a year, once you’re diagnosed,” she explains, saying at this stage, the cancer has also spread throughout her liver and lungs.

Initially, treatment consisted of chemotherapy. Eventually it was found that Brown has a gene known as Fibroblast Growth Factor Receptor 2 (FGFR2), which made her a candidate for pemigatinib (brand name Pemazyre), a presciption pill that can slow the growth of cells.

It’s not a cure, but Brown says it’s life-saving in that it has extended her life and also resulted in higher quality of living, as pemigatinib has made her more comfortable than she had been on chemotherapy.

“I don’t think, as awful as it is to say, I would be here without it,” she notes.

The expensive medication isn’t covered in B.C., and Kenda and her husband Joel are hoping to get an exemption from the province. Joel’s extended health coverage is going to cap out by the end of June. Out of pocket, a three-week supply costs about $14,000.

“Obviously if you’re millionaires, yeah, you could afford it and be done with it,” says Brown, “but most people who get cancer in Kamloops aren’t millionaires and they can’t afford it.”

CFJC reached out to B.C.’s Ministry of Health and received the following statement from Dr. Helen Anderson, who is the senior executive medical director for Provincial Systemic Therapy and Medical Programs at BC Cancer.

“We empathize with this patient, their family and friends and appreciate their desire to pursue all options when faced with a serious cancer diagnosis.

Canada’s Drug Agency (CDA / formerly known as the Canadian Agency for Drugs and Technologies in Health) and pan-Canadian Oncology Drug Review (pCODR) assess cancer drugs based on clinical evidence, cost-effectiveness and take into consideration patient and clinician input. Reimbursement recommendations are made by the CDA pCODR Expert Review Committee (pERC). This group includes medical oncologists, physicians, pharmacists, economists, an ethicist, and patient members.

CDA reviewed pemigatinib in 2022 and issued a do not reimburse recommendation. We recognize that other Canadian and International Health Technology Review processes have reached different conclusions but it is important to note that there are differences in mandates, processes and procedures in other jurisdictions. The CDA process does allow manufacturers to file new information that could address the uncertainty recognized in the initial review and this would be the avenue for reconsideration.

While we can’t share private patient information, we want to assure this individual and their loved ones that we will do everything we can to support them. We encourage the patient and their family to continue to speak with their oncologist to discuss treatment options and supports that may be available.

BC Cancer endeavors to be flexible and compassionate when considering treatment options and balancing the need to ensure patient safety and efficacy, and a sustainable health care system. We continue to work with the provincial government and all our partners to ensure people living with cancer receive the highest quality of care, ensuring appropriate and timely access to treatment.”

Part of the problem is, even if more information is presented to the review panel, Joel says they could be out of time. He says with a rare cancer diagnosis, oftentimes there are fewer treatment options, and limited information available for review during the process of approving new treatment methods.

“The next clinical trial result for this particular medication that Kenda is on isn’t expected for another two years because the pool of candidates is so small and people keep passing away,” he explains.

The Browns add that the drug’s effectiveness wanes over time for most patients. In Kenda’s case, she would likely only use the medication until this fall or winter. They’ve been in touch with the health ministry about it, but there weren’t many options.

“The next option for Kenda if we can’t swing or afford the funding, or the drug isn’t as effective as it could be, is to go back on chemotherapy,” says Joel, “And that’s pretty disruptive to her quality of life.”

The ordeal has become somewhat of a lesson for the couple in how to advocate for healthcare treatments, and they’re hoping others in a similar situation will take that into consideration.

With or without funding, the Browns say they will be looking at different treatments in and outside of Canada — all to maintain Kenda’s quality of life for as long as possible.

“You should be able to get a lifesaving drug and not have to mortgage your house or move in with your family because you can’t afford to do it otherwise,” she says.