Alberta's coverage of new treatment for rare cancer providing hope for patients

A new dad from the Calgary area is feeling hopeful after the Government of Alberta agreed to cover the cost of a new cancer treatment that might improve his chances of seeing his daughter grow up.

Bile duct cancer, or cholangiocarcinoma (CCA), is a rare, aggressive cancer that was only previously treated in Alberta by one drug.

“I’m very excited. It draws out my time and hopefully something else comes along in that time,” said Chris Dyment, who was diagnosed with bile duct cancer in April 2023.

Dyment and advocacy group Cholangio-hepatocellular Carcinoma Canada advocated for change, and now Alberta has agreed to cover the roughly $15,000 per month cost of the targeted therapy Pemigatinib (Pemazyre) for approved patients.

“In Alberta, the government is providing patients with exceptional coverage for Pemazyre, on a case-by-case basis,” Alberta Health said in a statement to CTV News.

“Albertans can contact their physician to access coverage through the outpatient cancer drug therapy program on an exceptional basis."

Dyment urged the province to make the change in March, weeks after his first child was born, saying it was his best chance at seeing his daughter grow up.

His original request was denied, but following CTV News’ original story, he got a call from the province.

“They (saw) the interview and (said) there was no way they could not fund the drug for me and give me a shot with seeing my daughter a little longer,” he said.

The 34 year old is nearing the end of his first treatment and needed another option.

Dyment is one of two Calgary-area patients approved for one year of coverage.

The other is 56-year-old Jennifer Nielsen, who was also diagnosed with bile duct cancer last year.

“A lady from the Alberta government left a message and I had to listen to it like three times,” she said.

Jennifer Nielsen during her first chemotherapy treatment. (Courtesy: Jennifer Nielsen)

Having a second treatment available is important, as patients who need another option but can’t get it survive an average of five months.

“There's so many setbacks when you have cancer. So when you have a small win, or in this case, a huge win, it just lifts you up,” said Nielsen.

It’s a huge win for Brenda Clayton as well.

She met with Alberta Health Minister Adriana Lagrange in April and May, advocating for the change.

“This will hopefully open the doors for other second-line targeted therapies for patients of carcinoma because we don't have any, and right now there's another drug in front of Health Canada … and it targets a different biomarker,“ she said.

Clayton’s family started Cholangio-hepatocellular Carcinoma Canada and has been advocating for people with bile duct cancer ever since her oldest daughter died of the disease after her first treatment ended, and no other options were available.

“I think I think Rebecca would be happy. We're making some progress,” Clayton said.

She said many other countries and Quebec were already covering the cost of this second treatment.

Clayton says she has reached out to health ministers in every other province and territory, but Alberta is the first to approve coverage.

Bile Duct Cancer affects about 400 people across Canada.

“If oncologists that actually deal with Cholangio-Carcinoma are saying we need to be doing it, we need to be listening to them,” she said.