Ontario mother with rare cancer seeks $15,000 a month treatment: 'I want a chance to do more'

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 was optimistic that everything would go smoothly for her second pregnancy. However five months later, she was rushed to a hospital in Kitchener, Ont. with intense abdominal pain.

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“It felt like someone was stabbing me in my side,” Ayesha, now 25, told Yahoo Canada. “I could hardly breathe.”

After multiple tests and ultrasounds, doctors discovered multiple lesions on her liver. Biopsies revealed that Ayesha had stage 4 cholangiocarcinoma, a rare form of bile duct cancer that had spread to her liver. The prognosis was grim; doctors informed Ayesha and her husband that there was no cure — and estimated she had a year to live.

“We were really devastated," she said. "Finding out that I had cancer during pregnancy was really heartbreaking for me and for my family. Even the doctor was heartbroken.”

Ayesha immediately began 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.

“As her brother, It’s hard for me to see my sister go through this,” said Ayesha’s brother, Mohammed Islam. “Every time she comes home from chemotherapy, she’s completely disabled. Unable to move or eat. To bear that with your own eyes — it’s devastating.”

Although it seemed like all hope was lost, 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.

There's just one road block for Ayesha and her family: Access to the drug carries a hefty price tag of approximately $15,000 per month.

'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 rule 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.

Dr. Rebecca Auer, a surgical oncologist and director of cancer research at the Ottawa Hospital, tells Yahoo Canada that 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 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 says. “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 shrank by a centimetre. Another scan earlier this year, showed the tumour had shrank 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 cost the cost of staying alive."

Palozzi is one of the few with cholangiocarcinoma who can afford to take Pemgitinib but said she hopes that CADTH will reconsider their initial ruling and provide coverage for the small group of Canadians, like Ayesha, living with bile duct cancer.

"Financially, it would help,” she said. “I hope in the future [it will be approved] because there are a lot of people younger than me that are affected by this. I’m 76-years-old…I’ve lived my life, but it would be for these young people."

Fighting for time

While time is of the essence, Ayesha's brother is determined to help his sister have more time with her daughter. He created a GoFundMe for Ayesha to help his sister access three rounds of the drug. Islam said there were dramatic improvements in Ayesha’s health — she was much more energetic than when she was on chemo and could participate in caring for her daughter.

“I want to do what I can to help my sister and give her the chance of a long life,” Islam said. “I want her dream to come true to have the chance to teach her daughter the way she was brought up, to make memories with her daughter — I don’t want her daughter to grow up and not have those memories of her mother.”

However, funds are limited. Without government funding, Ayesha will not be able to continue taking the medication. Despite the unknown, Ayesha's daughter remains focused on spending as much time with her daughter as possible.

“She’s on my mind constantly,” Ayesha said. “If I leave her, will she remember me? Will she know me? Will she know that I love her? If you don’t see your child — even for a day, you feel this little pain. It’s very painful... She is my hope at this moment. I wasn’t able to spend time with my first daughter. I want a chance to do more.”

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