The updates were first proposed in 2017, aiming to keep medication costs from becoming excessive.
But according to Cystic Fibrosis Canada, the changes will make it more difficult to get new medications, such as Trikafta, approved and available.
Cystic Fibrosis Canada claims Trikafta “could help up to 90 per cent of patients living with cystic fibrosis” in the country – saying it’s being viewed as “the single biggest advancement” in treating the disease in history.
The drug is legally available in the United States.
“We are here to say today that not only have the proposed changes delayed access to a life-saving treatment for cystic fibrosis patients, but the changes will affect other Canadians living with different illnesses and diseases in the future,” said Kelly Grover, Cystic Fibrosis Canada’s CEO.
“We appreciate the need to limit excessive pricing, but any changes must not create additional barriers to access to life-saving drugs for Canadians.”
Twyla McDougall, a parent of a child with cystic fibrosis, says most Saskatchewan residents don’t have access to several medications.
“We now have a breakthrough medication… that would be something that could work for 90 per cent of the people with cystic fibrosis and it’s looking almost impossible right now for our kids to have access to it,” McDougall said.
Cystic Fibrosis Canada would like the Saskatchewan government to sit down with the drug manufacturer and regulators to fast-track the approval of the medication.