'This has to change': New dad, grieving mom fighting for Alberta to cover rare cancer treatment

A new dad from the Calgary area is pressing the province to fund a new cancer treatment that might improve his chances of seeing his daughter grow up.

Chris Dyment was diagnosed with bile duct cancer in April 2023 and after 12 rounds of chemotherapy, his treatment will soon end.

The 34-year-old’s daughter Courtney was born earlier this month.

“I look at my daughter and I want to be there with her," he said.

“Bile duct cancer is a very aggressive cancer and the percentages aren’t very high to begin with, so any percentage is better than none.”

Bile duct cancer, or cholangiocarcinoma (CCA), is a rare, aggressive cancer currently treated in Alberta by one drug, but if it’s unsuccessful, there is no second treatment option.

Health Canada has approved the use of the targeted therapy Pemigatinib (Pemazyre), but Alberta does not currently cover the roughly $15,000 per month cost.

Dyment desperately wants to be there for his daughter, but he knows his survival rate will drop dramatically without another treatment option.

"Obviously, I want to see her grow and without this drug, it’s almost impossible," he said.

Chris Dyment with his daughter Courtney, who was born on March 1. (Courtesy: Chris Dyment)

The pilot has not been able to work since his diagnosis and will likely be unable to afford Pemigatinib (Pemazyre).

“If this drug works, it really works. People have gotten into surgery which has saved their lives and then I can be there with my daughter when she gets married," he said.

Fighting for change

Brenda Clayton’s oldest daughter, Rebecca, was diagnosed with the rare cancer in 2020 and died in 2021, six and half months after her first-line treatment ended.

Her family has since started the charity Cholangio-hepatocellular Carcinoma Canada.

“I don’t want to see other people go through what Rebecca went through,” Clayton said.

Rebecca (front left) and Brenda (front right) Clayton seen in a family photo. Rebecca died from bile duct cancer in 2021. (Courtesy: Brenda Clayton)

Clayton said patients have an average of five months of survival off treatment unless they can find a treatment elsewhere in the world.

“This cancer is one of the few that does not have a second-line therapy to use,” she said. “This has to change and our Canadians deserve a chance at life.”

She said Quebec and countries including the United States, United Kingdom and China cover the cost of Pemigatinib.

Clayton said she will meet with Alberta Health Minister Adriana Lagrange on April 2 to discuss this.

“We recognize that people living with bile duct cancer have few treatment options and are seeking new and better ways to address this disease. At this time, Alberta is aligned with the pan-Canadian Oncology Drug Review’s Expert Review Committee,” Alberta Health said in a statement to CTV News.

“However, the pan-Canadian Pharmaceutical Alliance is presently negotiating a pricing agreement with the drug’s manufacturer. If a pricing agreement is reached, each province and territory, including Alberta, will take into consideration both the committee’s recommendation and the pricing agreement when deciding whether or not to list the drug.”

In 2022, the pan-Canadian Oncology Drug Review’s Expert Review Committee recommended Pemazyre (pemigatinib) not be reimbursed on government-sponsored drug plans due to some uncertainty about the drug’s benefits.

On March 7, 2024, the pan-Canadian Pharmaceutical Alliance started price negotiations with the manufacturer of Pemazyre.

Clayton said aside from Dyment she knows of one other Albertan waiting for the treatment.

She has also reached out to the health ministers in every province and territory in Canada, hoping to be part of a more promising future for people facing this disease.

“When she died she asked us to please continue the fight against cholangiocarcinoma.”

Dyment said he also contacted the health minister and received a similar statement as the one provided to CTV News.