She, Stephanie Whaley’s 14-year-old daughter, had a zest for life and adventure. Her mother said she loved surfing in Hawaii and zip-lining with her grandmother in Whistler.

But an impressive diagnosis has changed everything.

“He had a really tough first four or five years,” Whaley told Global News one afternoon. His daughter was too ill to join the interview.

“Constantly ill, in and out of the hospital, she had trouble gaining weight … it’s a big part of her just ‘can’t breathe.’ You cannot inhale and you cannot exhale a full amount of air. “

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Ella was diagnosed with cystic fibrosis, a debilitating genetic disease that causes severe damage to the lungs. For her, it means days filled with high-resistance antibiotics, IV injections, PICC lines, and 24-hour care.

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“In the last two years, he has become a different person because of this disease,” Whaley said, wiping away tears. “In March, he tried to kill himself because he said that living with cystic fibrosis is not living, it is surviving the life that he does not want to live.”

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Photos of Ella Whaley leading an active life, surfing in Hawaii and zip-lining with her grandmother in Whistler, BC, before her lung function plummeted in 2019.

Global News / Screenshot

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Photos of Ella Whaley leading an active life, surfing in Hawaii and zip-lining with her grandmother in Whistler, BC, before her lung function plummeted in 2019.

But hope came in the form of an innovative new treatment a few years ago, Trikafta. Approved by Health Canada last June, it has been shown to increase lung function and can treat up to 90 percent of Canadians with CF.

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Whaley said he would be a game changer for his daughter.

“[Trikafta] it has the highest average increase in lung function, ”Whaley said. “The other modulators [drugs] it had a lower percentage, around four to seven percent. Trikafta has an average 14 percent increase in your lung function. So instead of being 59 percent, it could be between 60 and 70 years old. “

“It will help her breathe,” Whaley said.

“It is a right that is granted to you as a human being, to be able to breathe.”

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The illness has meant that Ella Whaley has had to endure intense treatments with antibiotics, PICC lines, intravenous injections, taking up to 45 pills a day and 24-hour care.

Stephanie whaley

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The disease has meant that Ella has had to endure treatments with high-resistance antibiotics, PICC lines, intravenous injections, taking up to 45 pills per day, and 24-hour care.

But a price tag of $ 300,000 per patient for an annual supply of Trikafta put the drug out of reach. Then in September there was a glimmer of hope. Ontario said it would cover the cost of Trikafta for eligible patients. But there was a catch.

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“Unfortunately, if you have your own private insurance, you have to go through them first,” Whaley said.

Because his family has insurance through their workplaces, the province says OHIP will not cover the costs.

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Whaley applied for coverage through the insurance of her husband, Greenshield, who said the drug is not included in the drug plan. Stephanie’s insurance, Operating Engineers Benefits Administration Corp., also denied them, explaining in a letter that while it “does not dispute the therapeutic value of Trikafta for the treatment of cystic fibrosis … until the price set by the manufacturer is in line with the benefits it provides, [it is] unable to approve this request. “

Global News reached out to both insurers for comment, but neither responded to requests.

“So, in essence, they have put a price on the lives of my son and other people with CF,” said Whaley. “I understand that it is a very high cost drug, but there are only 4,300 Canadians with cystic fibrosis. Why do they have to fight to gain access, just because their parents or themselves have private insurance? “

In a statement to Global News, the Ontario Ministry of Health said that families who fall into the Whaley situation “can apply for coverage through the Trillium Drug Program (TDP)”, acknowledging that the program requests approximately “3% to 4% [deductible] of annual net household income “.

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Approved by Health Canada last June, Trikafta has been shown to increase lung function, which can treat up to 90% of Canadians with CF.

Global News / Screenshot

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Approved by Health Canada last June, Trikafta has been shown to increase lung function, which can treat up to 90% of Canadians with CF.

For Whaley, it means having to fork out $ 700 a month, an additional burden on many other expenses.

“It is a high burden disease,” said Kim Steele, director of government and community relations for Cystic Fibrosis Canada.

“The financial cost of many, many medications, sometimes up to a hundred pills a day, really adds up,” Steele said.

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Governments offer some help to cover the cost of some drugs known as “symptom management drugs,” but Steele said they are not widely covered either.

“So when you put a revolutionary therapy like Trikafta on that drug list, the cost really becomes out of reach for a lot of people.”

Cystic Fibrosis Canada says the province needs to help families pay for these life-changing treatments, families that are being left behind.

Steele said one of the options being explored is a national drug strategy for rare diseases. The strategy would ensure that this class of drugs is affordable and readily available to people who need them.

“So we need that bulk purchasing power to help lower the cost of drugs so that our payers, our insurers, public or private, can provide the drugs in a way that does not financially harm a family.”

For Whaley, as she watches her daughter struggle, she said she just wants access to a drug that shows so much promise and hope.

“Honestly, I feel like I’m begging for my son’s life and it’s a horrible feeling,” she said. “My fear is that this path will only get more difficult, and I don’t know if he has anything left to go on.”

© 2021 Global News, a division of Corus Entertainment Inc.



Reference-globalnews.ca

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