Kitchener, Ont. woman with incurable cancer pushing province to cover rare cancer drug

A Kitchener, Ont. woman and her family are pushing the provincial government to fund a rare cancer treatment.

Noor Ayesha, 25, is a new mother but she’s facing a greater challenge than motherhood.

She has been diagnosed with cholangiocarcinoma, a rare form of cancer that originates in the bile ducts of the liver.

“I get out of breath really fast and I’m also losing my appetite,” she said.

While Ayesha has maintained her positivity, she can’t help but ask the tough questions: “Am I going to survive this? Am I going to live to see the next day?”

Her family has been by her side, looking at every option possible since her diagnosis.

The cancer, however, is considered incurable.

“I just felt as if the world had dropped on me, knowing that your sister is diagnosed with cancer,” Mohammed Islam recalled about the day he found out about Ayesha’s diagnosis. “You now only have about one year with your sister.”

Dr. Andrea Molckovsky, Ayesha’s medical oncologist at Grand River Regional Cancer Centre in Kitchener, said current efforts to prolong her life aren’t working as well as they’d hoped.

“Noor is running out of time because she’s already on the second line chemotherapy,” Molckovsky explained.

There is a new Health Canada-approved oral drug called Pemigatinib, which could help Ayesha live longer.

“When it works, it can work very well,” said Molckovsky.

But there’s a catch.

The drug, which is sold under the brand name Pemazyre, is not covered in Ontario. That means patients would have to pay up to $15,000 per month for the treatment.          

“You’re thinking: ‘Where am I going to get all this money from?’” Ayesha said.

Molckovsky has pursued multiple avenues to secure funding, on behalf of the family, but she’s been repeatedly denied.

Funding frustration

In a statement to CTV News, the Ministry of Health said drugs approved by Health Canada are reviewed by independent bodies, including the Canadian Drug Agency (CDA).

“CDA-AMC made the recommendation to not list Pemazyre as it was not known if this product would lead to better outcomes for patients compared to treatments that are currently available,” the statement read, in part.

There are other Ontario medical professionals, in addition to Molckovsky, who disagree.

“In the 25 years that I have looked after cancer patients with these rare biliary tract cancers, this drug represents real progress, a key scientific and clinical advancement,” explained Dr. Jennifer Knox, a medical oncologist at the Princess Margaret Cancer Center and professor of medicine at the University of Toronto, in an email to CTV News. “It is an effective targeted agent that gives patients another treatment for their advanced cancer, one that has so few effective options.”

Without funding, Knox said Canadian patients have fallen behind the gold standard of care. She’s seen patients feel much better and live longer after taking Pemigatinib.

“It’s just frustrating when we have something that we think could help someone that just wants to spend more time here, more time with her daughter, for a terrible cancer,” Molckovsky said.

“Hope in my heart”

Ayesha and her family are thankful they have experts standing behind and supporting them.

“That actually helps a lot when there are doctors that actually care about the patient… and help towards providing an increased life expectancy,” Islam added.

As for Ayesha, she said her one-year-old daughter is helping her get through this heartbreaking time.

“I want to teach her things that I was taught from a young age and I want to be there for her,” she explained. “[I want to] spend a little more time with my family and get to know them better before I leave. I’m not trying to say I’m going to leave, I have hope in my heart that I’m going to survive this.”

How to help

In addition to the advocacy work from doctors, the family has set up a GoFundMe page to help them cover the costs of treatment.

They’ve also started a petition asking the province to cover the pricey drug so other families don’t have to go through the same experience.

Donations can also be made to Alliance for CancerCare Equity, a registered charity that helps families without the financial means to pay for cancer treatment and related costs.