TORONTO -- A cystic fibrosis advocate is calling on the provincial and federal governments to work with a U.S. drug manufacturer to bring life-saving drugs to Canada.

Chris MacLeod, who lives with CF and is chair of the Canadian Cystic Fibrosis Treatment Society (CCFTS), said his organization is urging government officials to negotiate with Vertex Pharmaceuticals on pricing for their medication, including the breakthrough drug Trikafta, which can significantly help people living with CF.

Cystic fibrosis (CF) is a genetic disease which primarily affects the digestive system and lungs. The disease can lead to death in people who have persistent and ongoing infection in the lungs, according to Cystic Fibrosis Canada.

Trikafta is a disease-modifying drug that increases lung function in patients. According to Cystic Fibrosis Canada, it is the “single biggest advancement” in treatment in the history of the disease with the potential to improve the health outcomes for 90 per cent of patients.

The drug was approved in the U.S. in 2019, but it’s not available in Canada yet because Vertex Pharmaceuticals has not submitted it to Health Canada for approval citing concerns with proposed regulatory changes to the country’s medicine-pricing rules.

The Canadian government’s proposed changes to the Patented Medicine Prices Review Board (PMPRB), which determines the maximum price a company can charge for a new patented drug sold in Canada, would force makers of patented drugs to drastically drop prices.

In a statement to CTV’s Your Morning on Wednesday, a spokesperson for Health Canada said the PMPRB published a draft set of new guidelines for consultation with stakeholders and the public on Nov. 21, 2019.

“Extensive feedback was received and all written submissions are now available on the PMPRB website. The PMPRB is making revisions to the draft guidelines in response to the feedback it has received, and intends to issue a revised draft set of guidelines later this spring for further public consultation prior to finalizing them,” the statement read.

The federal government can only regulate excessive or maximum prices that can be charged for drugs in Canada. The provinces have jurisdiction to negotiate prices down from the maximum price, according to Cystic Fibrosis Canada.

That is why MacLeod is urging the pan-Canadian Pharmaceutical Alliance (pCPA), which is the body responsible for conducting joint provincial, territorial, and provincial negotiations on public funding for brand name and generic drugs, to work out an arrangement with Vertex Pharmaceuticals.

Because all negotiations between pharmaceutical companies and the government are kept confidential, MacLeod said he doesn’t know the details of the talks between the two sides.

CTV’s Your Morning reached out to the pCPA for comment and they directed questions concerning Vertex Pharmaceuticals’ concerns about pending changes to the PMPRB to Health Canada.

In a statement, a spokesperson for Health Canada said they recognize the “need for therapies that can help Canadians with serious or life-threatening conditions, and continues to encourage manufacturers to bring their therapies to the Canadian market.” The spokesperson said Health Canada has been in contact with Vertex in regards to Trikafta.

“At this time, Vertex Pharma has not provided a submission to market Trikafta in Canada. While Health Canada would welcome a submission from Vertex Pharma for Trikafta, it is up to a manufacturer to decide whether it chooses to seek market authorization for its product,” the statement read.

The spokesperson also pointed to Health Canada’s Special Access Program (SAP) as a way for Canadians to access drugs that are not yet marketed in Canada, but are needed to treat serious or life-threatening conditions.

MacLeod, who takes another drug manufactured by Vertex Pharmaceuticals called Kalydeco, which he has been able to access on compassionate grounds, stressed the importance of bringing these medications to CF patients in Canada.

“It works. The proof is in the pudding,” he said of the drug he’s taking. “Other people with Trikafta have had phenomenal results. Trikafta has been given on compassionate grounds to those who are closest to death in the country.”

CORRECTION: An earlier version of this story incorrectly stated that Vertex Pharmaceuticals had offered to provide their medications for free to every patient with CF in Canada for 90 days if the pCPA negotiates with them on pricing. In fact, Vertex Pharmaceuticals told the Canadian Cystic Fibrosis Treatment Society they would honour such an agreement, but it’s unclear if any such offer was made because negotiations between drug manufacturers and the government are confidential.