Ontario mother with rare cancer dies at 26, family pledges to fight for provincial funding of $15,000 per month drug

Noor Ayesha was hopeful when she learned she was pregnant for the second time in May 2022. Her first child, a daughter, had been born prematurely at seven months and lived for just nine hours — leaving Ayesha and her family heartbroken. Despite her grief, she had been optimistic that everything would go smoothly for her second pregnancy. But five months later, she was rushed to an Ontario hospital with intense abdominal pain.

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“It felt like someone was stabbing me in my side. I could hardly breathe,” Ayesha had previously told Yahoo Canada. The 26-year-old Kitchener, Ont. woman died this past Sunday, according to CTV News.

Tests and ultrasounds at the time of her hospital trip revealed multiple lesions on her liver, and biopsies showed she had stage 4 cholangiocarcinoma, otherwise known as a rare bile duct cancer.

Back then, she had learned her prognosis was grim. Doctors informed Ayesha and her husband that there was no cure and, at the time, had a year to live. It had left her and her family "devastated" and "heartbroken."

Ayesha had immediately started chemotherapy and continued treatment every week until she gave birth to a healthy baby girl. Following her delivery, Ayesha began more aggressive forms of chemotherapy that took its toll physically and robbed her of the ability to care for her newborn daughter. But despite the more aggressive treatments, the cancer was growing instead of shrinking.

At the time, Ayesha and her family learned of the drug Pemigatnib (sold under the brand name Pemazyre), an oral medication used to treat bile duct cancers that works to slow — and potentially stop — the growth of cancer cells. But there had been a hefty price tag of around $15,000 a month that had created a major road block for the family.

‘This was the wrong decision’

Although approved by Health Canada in 2021, Pemigatinib was not recommended for provincial drug program funding by the Canadian Agency for Drugs and Technologies in Health (CADTH). CADTH reviewed clinical evidence and ruled against reimbursement for the drug because it “is not clear” whether Pemigatinib would lead to better outcomes for patients “compared to treatments that are currently available.”

Initially, other provinces followed suit. Quebec, which has its own review board, Institut national d'excellence en santé et services sociaux (INESS), approved coverage for the drug. In June 2024, Alberta overturned its original ruling and announced it would cover the cost of Pemigatinib.

Last month, Ontario decided to fund the drug on a case-by-case basis. That change came after the manufacturer made a resubmission, and the province saw “real-world evidence as well as patient and family advocacy,” a statement to CTV News reads.

Dr. Rebecca Auer, a surgical oncologist and director of cancer research at the Ottawa Hospital, told Yahoo Canada the data submitted was a single arm study and that all patients received Pemigatinib; none received a placebo. Essentially, more data was required for the review board to see the full benefits of the drug.

“There was outcry among oncologists who said this was the wrong decision,” she said. “We think it should be funded. It’s not that many patients. It provides hope in a place where there is no hope. ... It’s our expertise that this drug is definitely working.”

Fighting for change

Auer became intimately familiar with bile duct cancer when her husband, Adam, was diagnosed with cholangiocarcinoma in May 2022 and given approximately a year to live.

“I felt a hopelessness I’ve never experienced before,” she said.

Auer and her husband were able to access molecular testing and experimental therapies in the United States at their own personal expense. Thanks to molecular testing, they were able to formulate a treatment plan based on his tumours genetic mutations.

“He’s doing amazing, two plus years later,” she said. “He seems to be disease free and living a normal life. I didn’t know he was going to have such a good outcome when we started. I just knew that I had to bring this hope to other patients that were so hopeless — there is hope. I couldn’t just ignore this. I had to do something to bring that hope to other people.”

Auer channeled her knowledge into forming the Canadian Cholangiocarcinoma Collaborative (C3) to help Canadians access integrated research and care. According to Auer, approximately 45 per cent of people with intrahepatic (in the liver) cholangiocarcinoma have a genetic mutation that can be targeted by drugs available today or as part of a clinical trial. By targeting cancers based on these genetic mutations, drugs like Pemigatinib can help stabilize the disease or shrink the cancer.

‘The cost of staying alive’

Trudy Palozzi knows firsthand how life-changing — and expensive — Pemigatinib can be. The 76 year old from Mississauga, Ont. began taking the drug in August 2023 following a year-and-a-half of chemotherapy that failed to shrink the tumour on her liver.

Palozzi told Yahoo Canada she was hesitant to pay out of pocket for the drug but it was her husband who encouraged her to try it. “He’s not ready to let me go,” she said.

After taking the medication for three months, a CT scan revealed Palozzi’s tumour had shrunk by a centimetre. Another scan earlier this year showed the tumour had shrunk by almost another centimetre.

Although she’s still living with cancer, Palozzi said her quality of life has drastically improved since switching from chemotherapy to Pemigatinib.

“I feel good. I feel fantastic. I have energy. I go for walks everyday,” she said. “I do two kilometers even two-and-a-half kilometres a day, I do housework — I’m almost living a normal life. ... Yes, it’s extremely expensive. But as my husband says, it’s the cost of staying alive.”

Continuing her legacy, pushing for change

Ayesha’s brother, Mohammed Islam, created a GoFundMe in May to help his sister access the drug and “give her the chance of a long life,” he said earlier this fall. It ultimately raised more than $28,000 and has since been closed to further donations.

Now, Ayesha’s family told CTV News they've pledged to continue fighting to make Pemigatinib available on a permanent basis because that's what she would've wanted.

The CADTH is now also reconsidering its stance on recommending the drug, and hopes to hear feedback from people before Dec. 13, 2024.

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