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
MPP Sarah Jama asked to leave Ontario legislature for wearing keffiyeh
MPP Sarah Jama was asked to leave the Legislative Assembly of Ontario by House Speaker Ted Arnott on Thursday for wearing a keffiyeh, a garment which has been banned at Queen’s Park.
Mountain guide dies after falling into a crevasse in Banff National Park
A man who fell into a crevasse while leading a backcountry ski group deep in the Canadian Rockies has died.
2 teens charged in Halifax homicide: police
Two teenagers have been charged with second-degree murder in connection to an alleged homicide near the Halifax Shopping Centre earlier this week.
Montreal actress calls Weinstein ruling 'discouraging' but not surprising
A Montreal actress, who has previously detailed incidents she had with disgraced Hollywood producer Harvey Weinstein, says a New York Court of Appeals decision overturning his 2020 rape conviction is 'discouraging' but not surprising.
'Deep ignorance': Calls for Manitoba trustee to resign sparked after comments about Indigenous people and reconciliation
A rural Manitoba school trustee is facing calls to resign over comments he made about Indigenous people and residential schools earlier this week.
B.C. tenants evicted for landlord's use after refusing large rent increase to take over neighbouring suite
Ashley Dickey and her mother rented part of the same Coquitlam duplex in three different decades under three different landlords.
Here's why Harvey Weinstein's New York rape conviction was tossed and what happens next
Here's what you need to know about why movie mogul Harvey Weinstein's rape conviction was thrown out and what happens next.
12-year-old hippo in Japan raised as a male discovered to be a female
When Gen-chan arrived at a zoo in Japan in 2017, no one questioned whether the then-five-year-old hippopotamus was a boy. Seven years later, zoo staff made a surprising discovery: Gen-chan, now 12, was female.
Improve balance and build core strength with this exercise
When it comes to cardiovascular fitness, you may tend to focus on activities that move you forward, such as walking, running and cycling.