Ontarians could get funded access to new rare cancer treatment thanks to Kitchener, Ont. woman’s advocacy

Noor Ayesha’s fight for access was cut short when she died last year but as CTV’s Spencer Turcotte finds out, her unwavering advocacy could help others.

Ontarians could soon have funded access to a promising new treatment for a rare and deadly form of cancer thanks, in part, to a Kitchener, Ont. woman’s advocacy.

Noor Ayesha’s fight for access was cut short when she died late last year from cholangiocarcinoma, also known as bile duct cancer.

Although, the drug Pemigatinib, sold under the brand name Pemazyre, helped extend her life, it came with a roughly $15,000 per month price tag.

But this month, a major move from the Canadian Drug Agency (CDA), showed that Ayesha’s voice may have been heard at the highest level.

The CDA reversed its 2022 decision and is now recommending that Pemigatinib “be reimbursed for the treatment of adults with previously treated, unresectable locally advanced or metastatic cholangiocarcinoma” as long as certain conditions are met.

“I think the initial reaction was a moment of ease,” said Mohammed Islam, Ayesha’s brother.

Shortly after her passing, Ontario agreed to cover the highly expensive treatment on a case-by-case basis, following months of her fighting for it.

“Her intention was that if she cannot access this drug while she was alive, she still wants to help other people fight for it so that other people can get access to it,” said Islam.

Now, it’s looking promising that Ontarians who require this treatment will be reimbursed thanks to the CDA recommendation.

“It means that the provinces have the go-ahead to negotiate funding for the drug and add it to their formularies,” said Dr. Andrea Molckovsky, Ayesha’s former oncologist.

Brenda Clayton has advocated for people with this rare cancer since 2021. She is thrilled with the progress being made.

“Cholangiocarcinoma patients deserve a chance to live as well. I’m very happy that this is a start,” said Clayton.

Molckovsky echoes those sentiments and said this could be the tip of the iceberg.

“[Hopefully] it opens the door for possibly other similar drugs to be championed at the federal level so that, they too, can proceed with funding in the future,” said Molckovsky.

As for Pemigatinib, it was previously approved by Health Canada, but this CDA recommendation means provinces can work with the drug agency to cover the cost of treatment.

It’s something Ayesha’s oncologist said would not have been possible without her.

“Noor was quite special,” said Molckovsky, taking a pause. “Her family was very strong and really supportive. It’s just been amazing to see.”