B.C. to provide coverage for ‘transformational’ drug for cystic fibrosis patients

Four Canadian provinces previously announced they will fund Trikafta. B.C. is now following suit.

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After being accused of dragging its heels, the B.C. government says it will be providing funding to cover a new treatment option for cystic fibrosis patients.

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The medication, Trikafta, which has been dubbed “transformational” by health advocates, is expected to benefit about 400 British Columbians, the Health Ministry said Tuesday.

“It has shown to slow progression of the disease, improve lung function and increase the median age of survival for a child born with cystic fibrosis by almost nine years,” the province said.

The drug will be covered through B.C.’s Expensive Drugs for Rare Diseases Program, which allows patients to access high-cost drugs for rare conditions on a case-by-case basis.

Born with cystic fibrosis, Kim Wood noticed a sharp improvement in her health after she began taking Trikafta as part of a drug study in 2019.

“It was astonishing,” she recalled before Tuesday’s announcement. “Breathing felt so unrestricted.”

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The 39-year-old Campbell River woman is one of hundreds of British Columbians with CF who had been urging the provincial government to fund the new drug. Ontario, Quebec, Alberta and Saskatchewan previously announced they would fund Trikafta.

“Every province has its own internal process,” Kim Steele, director of government and community relations at Cystic Fibrosis Canada, said earlier. “B.C. has an added layer — an additional process — compared to the other provinces. They’re not cutting that red tape fast enough.”

The urgency is related to the progressive nature of CF, and the drug’s ability to target a faulty protein that causes the buildup of excess mucus. The mucus causes frequent lung infections in CF patients, which over time can result in permanent lung damage. While the median survival age of a baby born with CF in Canada today is over 50, half of the people who died from the disease in the last three years were under 34.

Having the disease has been described as “drowning on the inside.”

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Steele said the drug could be life-changing for up to 90 per cent of the more than 4,300 people in Canada living with CF. By 2030, Trikafta could reduce the number of people living with severe lung disease by 60 per cent and reduce the number of deaths by 15 per cent, according to Canadian research published in the Journal of Cystic Fibrosis. The study estimated the median age of survival for a child born with CF would increase by 9.2 years.

“B.C. does not have a great track record in terms of working quickly to get medications to people,” said Steele.

Health Canada approved Trikafta earlier this year, cutting the time it typically takes to approve a new drug in half. Other countries, including the U.S., have also been quick to approve it.

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Steele said the drug has the potential to save lives, as well as reduce the cost of care for CF patients, who often spend weeks in hospital to treat lung infections and other complications related to the disease. A significant number of lung transplant patients also have CF.

While the list price for the drug is about $300,000 per year, the actual deal between Trikafta’s maker, Vertex Pharmaceuticals, and the Pan-Canadian Pharmaceutical Alliance, which negotiates the price of medicines on behalf of the provinces and territories, remains confidential.

Steele said it’s estimated that last year the total number of days spent in hospital by Canadian CF patients added up to 80 years. Wood said after starting Trikafta she hasn’t had to be hospitalized.

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“I have a quality of life that I haven’t experienced since I was a young kid,” she said.

The mother of a four-year-old boy, she has more energy, sleeps better and has gained weight since she is better able to absorb food. A chronic sinus infection that once meant she had to travel to a specialist in Vancouver biweekly — with a baby in tow — has improved so much that she only needs to see the doctor once every six months.

“I know I have lung damage — that hasn’t changed — but the drug helps to prevent further damage,” she said.

Campbell River mom Kim Wood with some of the medications she must take to manage cystic fibrosis. Wood is hoping B.C. will approve funding for a ‘transformational’ CF drug, Trikafta, which can drastically improve outcomes for some patients.
Campbell River mom Kim Wood with some of the medications she must take to manage cystic fibrosis. Wood is hoping B.C. will approve funding for a ‘transformational’ CF drug, Trikafta, which can drastically improve outcomes for some patients. Photo by Cystic Fibrosis Canada /PNG
Campbell River cystic fibrosis patient Kim Wood.
Campbell River cystic fibrosis patient Kim Wood. Photo by Cystic Fibrosis Canada /PNG

Roman Gagne, another CF patient, hopes to return to work if he’s able to access Trikafta. The 22-year-old Port Moody man’s lung function is about 45 per cent.

“When COVID started, I didn’t leave the house for months,” he said.

CF advocate Chris Black said she wanted to emphasize how grateful CF patients and their families would be if B.C. agreed to fund the drug.

“We know it’s too late for some people,” she said, “but we want to make sure it’s not too late for others.”

gluymes@postmedia.com

twitter.com/glendaluymes

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