Kitchener woman hopes Ont. follows other provinces in covering rare cancer drug

A 25-year-old Kitchener, Ont. woman is continuing the fight of her life.

As Noor Ayesha battles a rare and aggressive form of cancer, she is pushing the province to fund an expensive drug, which could extend her life.

She has seen improvements in her health since first sharing her story with CTV News. 

“I can walk more distance and take care of my daughter better than I was before,” said Ayesha.

Still, she’s grappling with cholangiocarcinoma, which has been deemed incurable for her.

But she’s been taking a drug called Pemigatinib, as directed by her oncologist Dr. Andrea Molckovsky at the Grand River Regional Cancer Centre.

“She has taken the drug now for six weeks, which is about two cycles of the drug. There is definite physical improvement in how she’s feeling and definite evidence of biochemical response, which is things that we measure in the blood that tell us that perhaps the cancer is shrinking,” said Molckovsky.

Since starting the drug, Ayesha and her family have raised money through a GoFundMe to help pay for her treatment every three weeks, which is about $15,000 per cycle. 

The drug is not covered in Ontario so they’ve been pushing the province to fund it, especially given recent moves from other provinces.

“There has been approval in Alberta for the funding of Pemigatinib. They said they would fund this drug for cholangiocarcinoma patients that have a specific type of mutation,” said Molckovsky.

Approval of the drug is moving forward in Quebec too, which has prompted Ayesha to consider a move there in order to continue treatment.

That’s not so easy though considering it would take a few months for her to be eligible for coverage there.

Time is not on her side, nor is money. She’s worried she won’t be able to pay for her next cycle, saying the funds raised was only enough to get her through the first two.

“If I stop taking this medication, my tumour could grow and then it could become more dangerous for me,” she said.

It’s fuelled frustrations for Ayesha, doctors and cholangiocarcinoma researchers who say the drug works and feel it should be funded across the country. 

Last week in Halifax, Ontario Premier Doug Ford addressed the need to speed up the approval of life-saving drugs in Canada.

“It’s just totally unfair to people that we’re last in the G7. It takes over 700 and some odd days. People need these drugs and it’s just taking way, way too long,” Ford said.

Kitchener Centre MP Mike Morrice also made an appeal in May to the federal health minister at the Committee of the Whole, in an attempt to help his constituent. 

While Health Canada approves medications in the country, the department is not responsible for their coverage in each of the provinces and territories. That falls under provincial or territorial jurisdiction. Although, Health Canada approved Pemigatinib tablets in 2021.

Meanwhile, Ontario’s Ministry of Health said it’s not covered in the province because the Canadian Drug Agency made the decision to not list the drug because it was not known if the product would lead to better outcomes.

Ayesha hopes decision makers stop pointing fingers and start taking action – not only for her, but for her newborn daughter who she is determined to spend more time with.

“I wake up every day and I see my daughter every single day. I want to have that more in the future.”