Kitchener, Ont. woman with incurable cancer dies, fight continues to get provincial funding for expensive drug treatment

The fight to save the life of a young Kitchener, Ont. woman has come to a sad end.

Noor Ayesha died Sunday after battling the rare and deadly cholangiocarcinoma, better known as bile duct cancer.

The 26-year-old gave birth in February 2023, shortly after her Stage 4 diagnosis. Ayesha had hoped to extend her life so she could spend as much time as possible with her baby daughter. A drug, called Pemigatinib and sold under the brand name Pemazyre, was key to achieving that.

As it wasn’t covered in Ontario, the community rallied to help cover the drug’s $15,000 per month price tag.

“She was able to access Pemigatinib, and it did work for her, through the months of May to September,” explained Ayesha’s oncologist Dr. Andrea Molckovsky.

“It was really great to see the community come together for Noor [and meet] people who dropped off cheques for the GoFundMe,” she told CTV News, through tears.

Molckovsky was overwhelmed by the community support and push to get Pemigatinib funded in Ontario.

That effort, and the drug it helped pay for, allowed Ayesha to go on adventures, like jet skiing, and spend precious time with her family.

Noor Ayesha, her husband Hossain Mohammed and their daughter. (Courtesy: Hossain Mohammed)

The drug eventually stopped working for Ayesha, due to her advanced stage cancer.

Her husband, Hossain Mohammed, spoke with CTV News on day of her funeral.

“Proud of you, my wife. I’m really missing you,” he said.

Hope for the future

Just last month, there was a breakthrough in the Ayesha’s fight for the cancer drug.

The province finally decided to fund the Pemigatinib on a case-by-case basis.

“This came from promising new, real-world evidence as well as patient and family advocacy that prompted the manufacturer to make a resubmission to the CDA-AMC for the treatment of Cholangiocarcinoma (CCA),” read a statement from Hannah Jensen, a spokesperson for the Minister of Health.

Noor Ayesha in a photo from her family's GoFundMe page.

Ayesha’s family reacts

Molckovsky can’t help but think that decision was at least partially inspired by Ayesha’s advocacy and the many letters sent to the province.

“It gives a bit of relief that, you know, 'If I had access to this drug earlier on, it could've given me a longer life and also a better quality of life,’” said Mohammed Islam, Ayesha’s brother.

Noor Ayesha and her husband, Hossain Mohammed, in an undated photo. (Courtesy: Hossain Mohammed)

While she’s no longer here, Ayesha’s family has pledged to keep fighting to make Pemigatinib available on a permanent basis. They say it’s what she would have wanted.

“To show my daughter that your mom was a warrior,” Hossain Mohammed explained. “And she'll fight for this medication to help other communities.”

“We’ll continue her legacy moving forward,” her brother added.

Noor Ayesha (right) and her oncologist Dr. Andrea Molckovsky (left) go over Ayesha’s recent progress at Grand River Hospital. (CTV News/Spencer Turcotte)

While the Canadian Drug Agency previously decided not to recommend the drug, they are now reconsidering and want to hear feedback from patients and doctors by Dec. 13, 2024.

Advocates hope a decision will be made by March 2025.