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."
CTVNews.ca Top Stories
BREAKING Another suspect arrested in Toronto Pearson airport gold heist: police
Another suspect is in custody in connection with the gold heist at Toronto Pearson International Airport last year, police say.
BREAKING Justin and Hailey Bieber are expecting their first child together
Hailey and Justin Bieber are going to be parents. The couple announced the news on Thursday on Instagram, both sharing a video that showcases Hailey Bieber's growing belly.
From outer space? Sask. farmers baffled after discovering strange wreckage in field
A family of fifth generation farmers from Ituna, Sask. are trying to find answers after discovering several strange objects lying on their land.
Poilievre-led government 'would never' use notwithstanding clause on abortion, his office says
A Conservative government led by Pierre Poilievre would not legislate on, nor use the notwithstanding clause, on abortion, his office says, as anti-abortion protesters gather on Parliament Hill.
Ontario family receives massive hospital bill as part of LTC law, refuses to pay
A southwestern Ontario woman has received an $8,400 bill from a hospital in Windsor, Ont., after she refused to put her mother in a nursing home she hated -- and she says she has no intention of paying it.
Here are the ultraprocessed foods you most need to avoid, according to a 30-year study
Studies have shown that ultraprocessed foods can have a detrimental impact on health. But 30 years of research show they don’t all have the same impact.
Miss Teen USA steps down just days after Miss USA's resignation
Miss Teen USA resigned Wednesday, sending further shock waves through the pageant community just days after Miss USA said she would relinquish her crown.
Why these immigrants to Canada say they're thinking about leaving, or have already moved on
For some immigrants, their dreams of permanently settling in Canada have taken an unexpected twist.
Cyclist strikes child crossing the street to catch school bus in Montreal
A video circulating on social media of a young girl being hit by a bike has some calling for better safety and more caution when designing bike lanes in the city. The video shows a four-year-old girl crossing Jeanne-Mance Street in Montreal's Plateau neighbourhood to get on a school bus stopped on the opposite side of the street