'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
Which Canadian cities have the highest and lowest grocery prices?
Where you live plays a big factor in what you pay at the grocery store. And while it's no secret the same item may have a different price depending on the store, city or province, we wanted to see just how big the differences are, and why.
'State or state-sponsored actor' believed to be behind B.C. government hacks
The head of British Columbia’s civil service has revealed that a “state or state-sponsored actor” is behind multiple cyber-security incidents against provincial government networks.
Swarm of 20,000 bees gather around woman’s car west of Toronto
A swarm of roughly 20,000 bees gathered around a woman’s car in the parking lot of Burlington Centre.
Mother assaulted by stranger while breastfeeding baby in her car: Vancouver police
A person was arrested in East Vancouver Thursday after allegedly entering a car while a mother was breastfeeding her four-month-old boy.
More than half the Canadians once detained in Syrian camps for suspected ISIS family members have returned home
A total of 29 Canadians have been freed from detention camps in northeast Syria and brought back to Canada since human rights advocates began lobbying for their release years ago.
Rare severe solar storm Friday could bring spectacular aurora light show across Canada
A rare and severe solar storm is expected to bring spectacular displays of the northern lights, also known as aurora borealis, across much of Canada and parts of the United States on Friday night.
Canada abstains from Palestinian UN membership vote but supports two-state solution
Canada was one of 25 countries that abstained from a United Nations vote on Palestinian membership that passed with overwhelming support on Friday.
Amish youth experience a rite of passage called Rumspringa. It’s not what you might think
The idea of “Rumspringa” has a specific spot in the American imagination. A rite of passage for young people in some Amish communities, Rumspringa is seen by most outsiders as a wild time away from strict Amish rules, when teenagers can experiment with the modern vices of the world.
Djokovic needs medical attention after getting knocked on the head by a water bottle at Italian Open
Novak Djokovic needed medical attention after apparently getting knocked on the head by a water bottle after a win at the Italian Open on Friday.