'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
BREAKING Israel attacks Iran, Reuters sources say; drones reported over Isfahan
Iran fired air defence batteries early Friday morning as explosions could be heard near a major air base near Isfahan, raising fears of a possible Israeli strike following Tehran's unprecedented drone-and-missile assault on the country.
American millionaire Jonathan Lehrer denied bail after being charged with killing Canadian couple
American millionaire Jonathan Lehrer, one of two men charged in the killings of a Canadian couple in Dominica, has been denied bail.
Nearly half of China's major cities are sinking, researchers say
Nearly half of China's major cities are suffering 'moderate to severe' levels of subsidence, putting millions at risk of flooding especially as sea levels rise.
Prince Harry formally confirms he is now a U.S. resident
Prince Harry, the son of King Charles III and fifth in line to the British throne, has formally confirmed he is now a U.S. resident.
Judge says 'no evidence fully supports' murder case against Umar Zameer as jury starts deliberations
The judge presiding over the trial of a man accused of fatally running over a Toronto police officer is telling jurors the possible verdicts they may reach based on the evidence in the case.
Health Canada to change sperm donor screening rules for men who have sex with men
Health Canada will change its longstanding policy restricting gay and bisexual men from donating to sperm banks in Canada, CTV News has learned. The federal health agency has adopted a revised directive removing the ban on gay, bisexual and other men who have sex with men, effective May 8.
Colin Jost names one celebrity who is great at hosting 'Saturday Night Live'
Colin Jost, who co-anchors Saturday Night Live's 'Weekend Update,' revealed who he thinks is one of the best hosts on the show.
Sports columnist apologizes for 'oafish' comments directed at Caitlin Clark. The controversy isn't over
A male columnist has apologized for a cringeworthy moment during former University of Iowa superstar and college basketball's highest scorer Caitlin Clark's first news conference as an Indiana Fever player.
'Shopaholic' author Sophie Kinsella reveals brain cancer diagnosis
Sophie Kinsella, the best-selling author behind the 'Shopaholic' book series, has revealed that she is receiving treatment for brain cancer.