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
Several flight attendants from Pakistan have gone missing after landing in Canada
Multiple flight attendants from Pakistan International Airlines have abandoned their jobs and are believed to have sought asylum in Canada in the past year and a half, a spokesperson for the government-owned airline says.
BREAKING Ottawa public school board, 3 Toronto-area school boards launch lawsuit against social media giants
The Ottawa-Carleton District School Board and three school boards in the Toronto-area have launched legal action against social media giants, accusing them of "disrupting students' fundamental right to education."
Rainfall warnings of up to 90 mm among weather alerts in effect for 7 provinces
Rainfall warnings of up to 90 millimetres, air quality advisories and other alerts have been issued for seven Canadian provinces, according to the latest forecasts.
Tipping is off the table at this Toronto restaurant
A Toronto restaurant introduced a surprising new rule that reduced the cost of a meal and raised the salaries of staff.
A Nigerian woman reviewed some tomato puree online. Now she faces jail
A Nigerian woman who wrote an online review of a can of tomato puree is facing imprisonment after its manufacturer accused her of making a “malicious allegation” that damaged its business.
Donald Trump assails judge and his daughter after gag order in N.Y. hush-money criminal case
Donald Trump lashed out Wednesday at the New York judge who put him under a gag order that bars him from commenting publicly about witnesses, prosecutors, court staff and jurors in his upcoming hush-money criminal trial.
A fight to protect the dignity of Michelangelo's David raises questions about freedom of expression
Michelangelo's David has been a towering figure in Italian culture since its completion in 1504. But in the current era of the quick buck, curators worry the marble statue's religious and political significance is being diminished.
Doctors visiting a Gaza hospital are stunned by the war's toll on Palestinian children
An international team of doctors visiting a hospital in central Gaza was prepared for the worst. But the gruesome impact Israel’s war against Hamas is having on Palestinian children still left them stunned.
China's latest EV is a 'connected' car from smart phone and electronics maker Xiaomi
Xiaomi, a well-known maker of smart consumer electronics in China, is joining the country's booming but crowded market for electric cars.