Kitchener, Ontario. woman with incurable cancer pushes province to cover rare cancer drug

Kitchener, Ontario. woman with incurable cancer pushes province to cover rare cancer drug
Kitchener, Ontario. woman with incurable cancer pushes province to cover rare cancer drug

A Kitchener, Ont. This woman and her family are pushing the provincial government to fund a rare cancer treatment.

Noor Ayesha, 25, is a new mother but she faces a challenge bigger than motherhood.

He was diagnosed with cholangiocarcinoma, a rare form of cancer that originates in the bile ducts of the liver.

“I get out of breath very quickly and I also lose my appetite,” she said.

Even though Ayesha remains positive, she can’t help but ask tough questions: “Will I survive this?” Will I live to see tomorrow?

His family has been by his side and has been exploring all possible options since his diagnosis.

Cancer, however, is considered incurable.

“I felt like the world had fallen on me, knowing that your sister had been diagnosed with cancer,” Mohammed Islam recalled of the day he learned of Ayesha’s diagnosis. “You only have about a year left with your sister.”

Dr. Andrea Molckovsky, Ayesha’s medical oncologist at the Grand River Regional Cancer Center in Kitchener, said current efforts to prolong her life aren’t working as well as they hoped.

“Noor is running out of time because she is already on second-line chemotherapy,” Molckovsky explained.

There is a new oral medication approved by Health Canada called Pemigatinib, which could help Ayesha live longer.

“When it works, it can work very well,” Molckovsky said.

But there is a catch.

The drug, sold under the brand name Pemazyre, is not covered in Ontario. This means patients would have to pay up to $15,000 per month for treatment.

“You wonder, ‘Where am I going to get all this money from?’ “, Ayesha said.

Molckovsky explored several avenues for funding, on behalf of the family, but was repeatedly turned down.

Funding frustration

In a statement to CTV News, the Ministry of Health said drugs approved by Health Canada are reviewed by independent bodies, including the Canadian Medicines Agency (CDA).

“CDA-AMC recommended against listing Pemazyre because it was unclear whether this product would result in better patient outcomes compared to currently available treatments,” the statement reads in part.

Besides Molckovsky, other Ontario health professionals disagree.

“In the 25 years that I have been caring for patients with these rare bile duct cancers, this drug represents real progress, a key scientific and clinical advance,” explained Dr. Jennifer Knox, medical oncologist at Princess Margaret Cancer Center and teacher. of Medicine at the University of Toronto, in an email to CTV News. “This is an effective targeted agent that offers patients another treatment for their advanced cancer, a treatment that offers so few effective options. »

Without funding, Knox said Canadian patients have not reached the gold standard of care. She has seen patients feel much better and live longer after taking Pemigatinib.

“It’s just frustrating when we have something that we think could help someone who just wants to spend more time here, more time with their daughter, with terrible cancer,” Molckovsky said.

“Hope in my heart”

Ayesha and her family are grateful to have experts who support and support them.

“It really helps a lot when there are doctors who actually care about the patient… and help increase life expectancy,” Islam added.

As for Ayesha, she said her one-year-old daughter is helping her through this heartbreaking time.

“I want to teach her things that I was taught from a young age and I want to be there for her,” she explained. “(I want) to spend a little more time with my family and get to know them better before I leave. I’m not trying to say I’m going to leave, I have hope in my heart that I’ll survive this.

How to help

In addition to the doctors’ advocacy work, the family created a GoFundMe page to help cover treatment costs.

They also started a petition asking the province to cover the expensive drug so other families don’t have to go through the same experience.

Donations can also be made to Alliance for CancerCare Equity, a registered charity which helps families without financial means to pay for cancer treatment and associated costs.



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