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
Ottawa injects another $36M into vaccine injury compensation fund
The federal government has added $36.4 million to a program designed to support people who have been seriously injured or killed by vaccines since the end of 2020.
'Secret report' or standard research? B.C. government addresses safe supply allegations
B.C.’s premier and one of his top lieutenants are pushing back against allegations by the Official Opposition that he covertly commissioned a report into the diversion of safe supply drugs onto the streets.
Video shows suspects waving weapons, smashing glass in Toronto jewelry store robbery
Arrests have been made after five men were captured on video rampaging through a jewelry store in Toronto, waving weapons and smashing glass display cases.
'My stomach dropped': Winnipeg man speaks out after being criminally harassed following single online date
A Winnipeg man said a single date gone wrong led to years of criminal harassment, false arrests, stress and depression.
She was too sick for a traditional transplant. So she received a pig kidney and a heart pump
Doctors have transplanted a pig kidney into a New Jersey woman who was near death, part of a dramatic pair of surgeries that also stabilized her failing heart.
What Canadians think of the latest Liberal budget
A new poll suggests the Liberals have not won over voters with their latest budget, though there is broad support for their plan to build millions of homes.
opinion Why you should protect your investments by naming a trusted contact person
Appointing a trusted person to help with financial obligations can give you peace of mind. In his personal finance column for CTVNews.ca, Christopher Liew outlines the key benefits of naming a confidant to take over your financial responsibilities, if the need ever arises.
'One of the single most terrifying things ever': Ontario couple among passengers on sinking tour boat in Dominican Republic
A Toronto couple are speaking out about their 'extremely dangerous' experience on board a sinking tour boat in the Dominican Republic last week.
Teacher shortages see some Ontario high school students awarded perfect grades on midterm exams
Students at a high school in York Region have been awarded perfect marks on their midterm exams in three subjects – not because of their academic performances however, but because they had no teacher.