New ‘life-changing’ cystic fibrosis drug under review for funding
Some Albertans living with cystic fibrosis (CF) are feeling optimistic about the availability of a potentially “life-changing” drug called Trikafta. However, their optimism is overshadowed by the federal government’s drawn-out bureaucratic processes hindering access to this life-saving drug. The Alberta government looks “poised to move quickly” on this topic. But, there isn’t much clarity around who this drug will be funded for. Moreover, a study shared on the Cystic Fibrosis Canada website claims there would be a 15 per cent reduction in cystic fibrosis deaths by 2030 if the drug Trikafta is made available immediately.
“On June 8 in the Legislature, (Alberta Health) Minister Shandro answered a question from MLA Rod Loyola about these medications,” said Amanda Bartels, a CF patient in Chestermere - who recently received compassionate care access to this life-saving drug because she was being considered for a doublelung transplant.
“He said he looked forward to pushing the price negotiation process that all the provinces work together at,” said Bartels, “I’m optimistic they are (going to get on it quickly).”
But, Bartels isn’t the only one feeling optimistic. Marten De Vlieger, a former resident of Taber and CF patient said, if he can get the drug, “maybe I could even get to see my kids grow up and get married.”
“I moved away for my health,” adding, “there’s too much dust (in Taber).”
However, their optimism is currently living in the shadow of the federal government’s postponing of approving the coverage of this ‘life-changing’ drug.
“There’s new drug pricing rules that were supposed to come into play (July 1),” said Bartels. “The way those rules were structured was going to lead to less new medications being available in Canada,” adding, “that would have been the third time, third delay in them.”
“The patented medicine pricing review board, PMPRB, has been working toward implementing some regulatory changes, some guideline changes, and essentially they’re trying to lower drug prices in Canada - but they’re doing it at a very aggressive and fast pace.”
“Not so fast anymore because they postponed implementation several times, but what they are proposing would result in price reduction of between, anywhere from 50 to, up to 90 per cent.”
“I can’t think of a business that would want to come to Canada, regardless of whether or not it’s a pharmaceutical company, where when you got to the border they said to you, ‘Hey guess what? You have to take a 90 per cent price reduction on your product. Welcome to Canada.’”
“Granted, I think you know, we all agree we want lower drug prices.”
“Our drug is here now, Trikafta,” says Kim Steele, director of government and community relations at Cystic Fibrosis Canada. “We fought very hard to postpone those guidelines because the drug had already been launched in countries all over the world, almost 40 countries have already approved the drug. So, Canada is behind, we were behind.”
“For people with cystic fibrosis this is not a new story,” says Steele, “we have had to fight for drugs before,” adding, “we now have this drug Trikafta that can treat up to 90 per cent of the population, and I think our governments recognize this is a transformational drug. I think they want to fund it.”
Despite the federal government’s lagging commitment to make this drug available, the provincial government of Alberta is “poised to move quickly” on putting a policy in place. However, it remains unclear who this drug will be funded for.
“Alberta probably made the commitment that has the most immediate action, they’re poised to move very quickly to fund this drug. What will remain, is who they fund it for. So, there’s a big decision coming up.”
“Alberta, for all intents and purposes, looks poised, to move quickly,” said Steele, “there’s a new process that this drug went through that expedited it.
That process didn’t exist before.”
“What we do know is typically governments will fund drugs and there will be some criteria around that,” said Steele. “In cystic fibrosis, the criteria is often around lung function - but you also need to meet criteria to be eligible for funding for the drug. What we see and what we believe in is that should be up to the physician and the patient.”
“If the physician thinks the drug is right for people then people should get it.” Steele said, “I’ve been doing this work for 20 years, and I’m also Albertan.”
However, despite her knowledge and experience on the topic, Steele still doesn’t know how likely it is the Alberta government will make the drug widely available to people living in Alberta with cystic fibrosis.
“I don’t have what it takes to do the inputs and the outputs because this is a new process.”