Ontario will pay for cystic fibrosis drug Trikafta. That's a 'game changer' for these Windsorites

·4 min read
Missi (left) and Emma Chenier (right) are thrilled to hear to the province of Ontario will cover the cost of Trikafta.  (Katerina Georgieva/CBC - image credit)
Missi (left) and Emma Chenier (right) are thrilled to hear to the province of Ontario will cover the cost of Trikafta. (Katerina Georgieva/CBC - image credit)

Ontario will cover the cost of Trikatfa, a revolutionary drug for people with cystic fibrosis, and some Windsor-based patients are overjoyed with the news.

Last week, Ontario, Alberta and Saskatchewan announced that they will pay to provide eligible patients with Trikafta, which costs roughly $300,000 a year at its list price, under publicly-funded drug programs.

Emma Chenier, a 21-year-old Windsorite who lives with cystic fibrosis, said the announcement was the "best news" she has had in her 21 years.

"It is a game changer because it means less limitations on what I can do," Chenier said.

Cystic fibrosis is a genetic disease. At it's root it is caused by a mutation that affects a type of protein. It leads to mucus buildup in the lungs and digestive system, resulting in infections, breathing problems and additional complications.

Throughout her schooling, Chenier said she has had to take months to a year off at a time due to effects of the disease.

"Trikafta will give me abilities to stay in school longer, focus on my studies and really develop not only in my program as a musician but it will also allow me to develop much healthier into adulthood," she said.

While previous remedies worked to address the symptoms of cystic fibrosis, Trikafta binds to the affected protein so that it can function forever.

The eligibility criteria has not yet been published by Health Canada but the Canadian Agency for Drugs and Technologies in Health issued a draft recommendation which would make the medication available to patients with less than 90 per cent lung function.

Chenier said her lung function sits between 60 to low 80 per cent.

"It's very difficult on the body."

Missi Chenier, Emma's mother, said this eases her concerns over how Emma will access her medication once she outgrows Missi's private insurance.

"Knowing that she will have access to this medication, regardless of her status on my insurance, allows me to sleep at night knowing that I don't have to worry about that anymore," she said. "It's really a big deal."

Submitted by Missi Chenier
Submitted by Missi Chenier

According to Cystic Fibrosis Canada, one in every 3,600 children are born with the disease, and over 4,370 Canadians attend specialized clinics.

Trikafta was first approved by Health Canada in June 2021 for patients ages 12 and over who have at least one of the gene mutations that leads to cystic fybrosis.

Approved in the United States in October, 2019, Cystic Fibrosis Canada says research has shown that Trikafta could reduce severe lung disease by 60 per cent, increase life expectancy and decrease the number of deaths by 15 per cent.

Submitted by Aalaya Fleming
Submitted by Aalaya Fleming

Aalaya Fleming, a 22-year-old student at St. Clair College who also has cystic fibrosis, said she was ecstatic when she heard Ontario would now cover the cost of Trikafta.

"For so long, so many CF'ers including myself, our treatments were based on treating our symptoms. But now they're getting to the root of the cause," she said.

Fleming said for her, the disease presents mostly as intestinal complications.

"I know that it can help correct some of the digestive system issues that [cystic fybrosis] people deal with," she said. "I do have diabetes because of [cystic fybrosis], I'm hoping it can correct that as well."

Fleming said she is not sure whether she is eligible for the drug coverage but she is happy for those who will be eligible.

"I am incredibly thankful for all the efforts of the [cystic fybrosis] community."

Submitted by Rian Murphy
Submitted by Rian Murphy

Rian Murphy, a 34-year-old father and husband living with cystic fibrosis, compared his level of happiness to when he got married.

"You're so happy, it doesn't really register and you have let it sink in. Then other people start notifying you," he said. "It still not really hitting you yet."

Diane Murphy, Rian's wife, has been highly active with Cystic Fibrosis Canada and wrote several letters and participated in a petition and Instagram groups calling for the Ontario government to fund Trikafta.

Murphy said since the announcement was made he has had more energy.

"It's going from being stuck in the mud to having three red bulls," he said. "I just feel like I'm going to have so much more energy, I'm going to be a lot healthier. I'm going to be more present in time and less fatigued and just be able to do more as a father and husband."

"If my window of time is healthier and better, to me already, it's a game changer."

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