'We've lost too many people': Alberta CF patients urge province to approve coverage for miracle drug
Cystic fibrosis patients in Alberta are urging the government to approve coverage for the drug Trikafta, now that Health Canada has approved the life-changing treatment for people with CF.
Cystic Fibrosis Canada estimates the transformational drug can treat up to 90 per cent of Canadians with cystic fibrosis. But until it’s funded by provincial drug plans, the treatment will remain inaccessible to those who need it.
“It is life-saving, life-changing, a miracle, all of those words,” said Amanda Bartels, a CF patient from Chestermere who became sick enough in 2020 to receive a compassionate supply of Trikafta.
“It started working within hours,” said Bartels.
“Over the next two weeks I was able to stop using my oxygen all the time, and going up a flight of stairs was no big deal.”
Last fall Bartels biked the Banff Legacy Trail from Banff to Canmore and back. It was an accomplishment she had never dreamed of two years ago, when she found something as easy as changing the bed sheets was a monumental task.
“You don’t realize how sick you are until you get that ability back,” said Bartels, who was approved to access Trikafta through a special Health Canada program that is only available to patients who are extremely ill.
Bartels had been undergoing assessment for a lung transplant and had been hospitalized for about six months in 2019 with a partially collapsed lung that wasn’t healing. She was constantly on oxygen, and even walking across the front yard was exhausting.
Drug treatment for cystic fibrosis
Amanda’s recovery and approval of Trikafta by Health Canada has inspired other CF patients, including Marten Devlieger, who moved from Taber to the Crowsnest Pass to take advantage of the mountain air.
“The hope it gives me, that I can hopefully live a normal long life and see my kids grow up, is absolutely amazing,” said Devlieger.
Devlieger was diagnosed with cystic fibrosis when he was two years old, and has been an advocate for better access to breakthrough treatments.
Devlieger’s sister Karen also had CF. She died in 2018 at the age of 33.
According to Marten, he has always lived for the day, and still does, but a drug like Trikafta offers hope for the future.
“I have two children. I used to never think of the future. I never thought of them getting married, I never thought of you know, retirement with my wife,” added Devlieger.
Cystic fibrosis is the most common fatal genetic disease in children and young adults in Canada.
Bartels said she was “super-excited” when Health Canada approved Trikafta last Friday, but her champagne is still on ice, “because we need the provinces to follow through and finish their part of the process quickly before it can get into patients hands.”
APPROVED IN 35 COUNTRIES
To date Trikafta has received regulatory approval in 35 countries and is publicly covered in nine countries so far.
According to CF Canada Trikafta costs roughly $300,000 US a year.
However patients point out it would save governments the cost of providing other medications and the expense of lengthy hospitalizations.
Devlieger, who is almost 40 years old and starting to experience complications such as liver disease and diabetes, realizes that time is not on his side.
“Every day more damage happens to me is closer to the end of life.”
Devlieger is urging the Alberta government to act quickly, and provide access to the drug as early as this summer.
“Let’s hope the right thing happens here and we can get it in our hands soon, and save lives.”
CTVNews.ca Top Stories
'They needed people inside Air Canada:' Police announce arrests in Pearson gold heist
Police say one former and one current employee of Air Canada are among the nine suspects that are facing charges in connection with the gold heist at Pearson International Airport last year.
Disappointment widespread over budget's proposed $200-month disability benefit funding
Advocacy groups across Canada are expressing widespread disappointment about the amount of funding earmarked in the 2024 federal budget for the long-awaited Canada Disability Benefit.
BREAKING Toronto Raptors player Jontay Porter banned from NBA
Toronto Raptors player Jontay Porter has been handed a lifetime ban from The National Basketball Association (NBA) following an investigation which found he disclosed confidential information to sports bettors, the league says.
Earthquake jolts southern Japan
An earthquake with a preliminary magnitude of 6.4 hit southern Japan late on Wednesday, said the Japan Meteorological Agency, without issuing a tsunami warning.
ArriveCan contractor to be admonished by MPs in extraordinarily rare parliamentary display
Enacting an extraordinarily rarely used parliamentary power, MPs have summoned an ArriveCan contractor to appear before the House of Commons on Wednesday afternoon to be admonished publicly for failing to answer their questions.
opinion Don Martin: Gusher of Liberal spending won't put out the fire in this dumpster
A Hail Mary rehash of the greatest hits from the Trudeau government’s three-week travelling pony-show, the 2024 federal budget takes aim at reversing the party’s popularity plunge in the under-40 set, writes political columnist Don Martin. But will it work before the next election?
Gas prices across Ontario expected to climb to levels not seen since 2022, analyst says
Ontario is going to see a big jump at the pumps later this week as gas prices in the province hit levels not seen in nearly two years, according to one industry analyst.
Ancient skeletons unearthed in France reveal Mafia-style killings
More than 5,500 years ago, two women were tied up and probably buried alive in a ritual sacrifice, using a form of torture associated today with the Italian Mafia, according to an analysis of skeletons discovered at an archeological site in southwest France.
Paul McCartney and John Lennon’s sons have released a single together
A new Lennon and McCartney collaboration is the last thing anybody expected.