Manitoba family calling for province to cover life-changing drug
A new drug called Trikafta could be a life-changing treatment option for people living with Cystic Fibrosis (CF).
Exciting news for Marilyn and Phill Snarr, whose five-year-old son Jack was born with CF. The disorder causes damage to the lungs, digestive system, and other organs in the body.
"Every day, we have to do one hour of treatment in the morning, and in the evening another hour of treatment," said Marilyn.
In June, the Snarr family was encouraged to learn Trikafta, a potential treatment for CT, was approved for use in Canada. The drug targets a gene mutation which is the root cause of the disease.
Last week the Canadian Agency for Drugs and Technology (CADTH) made their recommendations public, suggesting provinces publicly fund the new drug, and add it to their formulary.
Alberta, Ontario, and Saskatchewan took the advice, but the Snarr family was disappointed to learn Manitoba hadn't done the same.
"For the CF community across Canada, that's wonderful that Alberta and Saskatchewan and Ontario have agreed to publicly fund it, but we need kind of everyone to publicly fund it," said Phil.
"There are patients with Cystic Fibrosis who don't have those months for it to be figured out."
Kim Steele, director of government and community relations for Cystic Fibrosis Canada, said Trikafta can significantly slow the progression of multi-organ symptoms associated with Cystic Fibrosis.
She said Alberta, Saskatchewan and Ontario began moving together a few years ago to get medications like Trikafta publicly funded.
"Manitoba quite frankly does not have the best record on drug reimbursement for Cystic Fibrosis therapies, and we want to change that really quickly."
Steele said another barrier for patients is the criteria recommended by CADTH. It suggested only people with less than 90% lung capacity should start the drug.
"That's going to leave about 27 per cent of the population that is indicated for this drug behind," said Steele.
Steel hopes if Trikafta comes to Manitoba, the province will allow CF clinicians to determine the criteria for use instead of the recommendations given by CADTH.
In a statement to CTV News, a spokesperson for the province said in part:
"While the role of the Pan Canadian Pharmaceutical Alliance is to conduct joint provincial, territorial, and federal drug plan negotiations for brand name and generic drugs, any final drug finding decisions remains under the authority of individual jurisdictional public drug plans."
"Manitoba will now work through our respective processes to make the decision to list Trikafta on the pharmacare drug plan."
The Snarr family would like to see the process move a little faster for people like their son Jack and others living with CF.
"Get the broadest prescribing criteria and the quickest access on the public formulary," said Phil.
"So that the people who need the medication can get it as quickly as possible."