Health Canada is expected to make a decision this month on whether or not it will approve a drug that one Barrie mom says could all but “cure” the disease her daughter has been living with since she was three months old.
Heather Dekker is anxiously awaiting the decision, which could see Canadians living with cystic fibrosis (CF) have access to a new treatment available called Trikafta, which she says can result in people being able to come off the lung transplant list in Canada and save lives.
“If my daughter wasn't Canadian, she would probably have access right now,” Dekker said.
CF is the most common, fatal, genetic disease affecting Canadian children and young adults and has no cure. It causes various effects on the body, but mainly affects the digestive system and lungs. “Basically any other developed country has (this drug), has approved it and uses it. Canada is just lagging behind on it for all kinds of reasons.”
There are approximately 4,300 Canadians living with CF right now, and Dekker said many of them won’t survive without either a lung transplant or access to this treatment.
“It’s not a huge amount and that’s why it’s a rare disease — and OHIP doesn’t fund a lot of medicine for rare diseases in Canada. These people are all very sick and generally… they die in their 20s and they die when they’re children,” she said.
Dekker called Trikafta a “miracle drug” for CF patients.
“It literally will correct the deficiencies not just give her antibiotics and try to find a way to get her fat. It will actually correct it and she could test negative for CF," she said.
Dekker has been waiting nearly 27 years for a cure, and said she is angry the government has continually failed to approve something that has proven to be successful for CF patients around the world.
“What makes me really angry is when (Katelyn) was born nearly 27 years ago, Sick Kids Hospital had just discovered the gene a few years before," she said. "They were telling me in her lifetime there will be a cure. And here we are nearly three decades later.
"It's a really sad situation. The cost alone of taking care of these people is exorbitant, so why can’t we just figure out a way," Dekker added
The Barrie-based artist, who owns Creative Palette art studio in Barrie, has created a fantasy piece of art which she said depicts the ability of the federal government to grant change and to save her daughter’s life in the hopes to raise awareness of the disease and the need to approve the treatment for all CF patients in Canada.
“The owl at the top symbolizes the drug company and the government of Canada and their power to help these CF patients rise above the water to stop drawing. They’re literally drowning,” Dekker said.
She has put the art, which depicts her daughter as a #CFWarrior, on T-shirts to bring awareness to the desperate need the CF community has in getting the government to grant and fund access to #Trikafta now.
She has recently put the piece on T-shirts, to help raise money for Cystic Fibrosis Canada.
“It’s a huge challenge and I always think back to Sick Kids. They always treated her like a person, who could have her dreams and be whoever she wanted to be. There was help coming," Dekker said. "It was a crazy amount of work to just keep her well and we did. She ended up as a teenager quite healthy and you wouldn’t know looking at her that she had CF.
"Then, as soon as you reach adulthood in Canada, people just get let go,” Dekker added. “She went through school and went through incredible odds. She was airlifted out of school when she got so sick one day. She worked so hard to get there, and now to watch her disease take over is the scariest thing ... and it’s just heartbreaking for our family to know there’s help out there.
"But for our government, it’s not worth their time to help 4,300 Canadians. There’s just not enough of us to matter and that’s a really sad situation.”
