‘It’s unfair’: Cystic fibrosis patient calls on Quebec to cover costs of $200K ‘life-changing’ drug

Click to play video: 'Quebecers with cystic fibrosis fight for access to drug'
Quebecers with cystic fibrosis fight for access to drug
WATCH ABOVE: Quebecers with cystic fibrosis have to spend thousands of dollars every year to feel better. As Global's Dan Spector reports, not everyone can afford to pay for the drug Orkambi — and many say the provincial government is to blame – Sep 27, 2018

Chelsea Gagnon has long lived with cystic fibrosis — a fatal genetic disease with no cure — but now she’s hoping to give Quebecers better access to the treatment she said has changed her life.

At 29, she routinely suffers from one of the degenerative disease’s worst symptoms: her lungs fill with abnormally thick mucus.

“It makes it hard to breathe and it plays host to a lot of bacteria,” she said.

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As part of her treatment, Gagnon uses a machine to help loosen the mucus in her lungs. It’s also hard to keep count of the numerous pills she takes on a daily basis to avoid getting sick.

“It’s a continuous routine of medication and treatment to stay healthy,” she said.

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It was only recently when Gagnon started a new round of treatment with a drug called Orkambi that she noticed a difference in her health.

The medication has been a game changer. Gagnon says her quality of life has improved to the point where she can work and do simple tasks such as blowing a balloon.

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READ MORE: Cystic fibrosis is still the No. 1 fatal genetic disease for Canadian kids – here’s why

“Before I started Orkambi, I didn’t realize how sick I was,” she said. “It was my everyday normal. Then when I started taking this drug, I had energy.”

“I never felt that way before.”

While Gagnon is relishing in the changes, many Quebecers who live with cystic fibrosis aren’t able to access the drug at all due to its hefty price tag.

Gagnon has access to Orkambi through her mother’s private insurance, but it costs more than what many can afford.

WATCH BELOW: Vernon woman makes appeal for compassionate coverage of life changing cystic fibrosis drug

Click to play video: 'Vernon woman makes appeal for compassionate coverage of life changing cystic fibrosis drug'
Vernon woman makes appeal for compassionate coverage of life changing cystic fibrosis drug

“It’s probably in the $200,000 dollar range and that’s every year,” said Dr. Larry Lands with the Montreal Children’s Hospital’s pediatric cystic fibrosis clinic.

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Both Gagnon and her former doctor are now petitioning Quebec to cover the costs of Orkambi for everyone who needs it.

“When this box comes, it’s like Christmas every month but I can’t believe some people in Quebec can’t experience being alive,” Gagnon said.

In a statement to Global News, the provincial government said it will not fund the medication as research shows it does not have enough therapeutic value.

“It’s unfair,” said Gagnon.

READ MORE: Edmonton woman begs Alberta to cover life-changing $250K cystic fibrosis drug

She said they are also asking for the province to adopt a rare disease policy so that new medications such as Orkambi can be “implemented really quickly.”

When asked on the campaign trail about Gagnon’s request, Liberal Leader Philippe Couillard said there must be “a scientifically-driven process before you fund something new.”

“It’s essential before funding a new drug its value be confirmed therapeutically,” he said. “This is why we have experts that advise us on this or the whole system would collapse.”

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