REGINA -- Six Saskatchewan families who deal with cystic fibrosis (CF) are calling on the provincial government to fund Trikafta, a potentially life-saving drug, in a new video.
Jordan Leibel created the video to raise awareness about the drug. He and his brother both live with CF.
“It’s a daily challenge for the both of us, but more so, his health has been declining, and he’s almost lost his life multiple times in the past few years due to it,” said Leibel. “This drug is a miracle treatment. It’s essentially the holy grail of treatments for cystic fibrosis.”
Health Canada is expected to make an approval decision on Trikafta in June. But, even if it’s approved, Leibel said there will be other hurdles to accessing the drug – like cost. That’s why many are calling on the province to fully cover Trikafta.
“Although it costs quite a bit up front, it offsets a lot of the costs that cystic fibrosis patients require daily and monthly and yearly,” said Leibel.
The McDougall family is also pushing for full coverage of the drug. The family of five’s eldest daughter, 11-year-old Ella, has CF.
“I have to spend two to three hours doing treatments everyday to stay healthy. It does take up a lot of my time,” said Ella McDougall. “If I could get (Trikafta), it could be life-changing.”
Ella also has to take between 20 and 30 pills, per day, to treat the disease. Even then, she has been hospitalized nine times, for an average of about two-and-a-half to three weeks each time.
“If CF patients are able to get these pills, we’re not filling up beds. Those beds can be going that really, really need them…this drug can save lives and we won’t tie up resources other people need,” said Twyla McDougall, Ella’s mother.
Vicki Mowat, NDP opposition critic for health, said several other provinces have already committed to covering Trikafta. She said the province should do the same.
“Price is a significant barrier for folks, and in the birthplace of Medicare, you want to know that you’re going to be able to look after yourself and your family members,” said Mowat. “It’s clear this is a choice that should be made by this government, that they should make this commitment.”
CTV News requested an interview with the province’s health minister regarding the drug. The Ministry of Health sent a statement that reads: “We recognize that the cystic fibrosis community is anxious for access to new treatments such as Trikafta and, through the pan-Canadian Pharmaceutical Alliance, we will continue to work with manufacturers through the established review and negotiation processes in order to support timely access to these new medications.”
