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Family sheds tears of joy as province agrees to fund 'life-changing' CF medicine

'It's a big relief,' says area mom and cystic fibrosis patient advocate
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Mother daughter duo Beth and Madi Vanstone are overjoyed with the news that cystic fibrosis drug Trikafta will be listed in Ontario.

After years and years of fighting to have lifesaving medications covered for cystic fibrosis (CF) patients in Canada, local mother-daughter duo Beth and Madi Vanstone are celebrating this week as the province is now providing coverage under its publicly funded drug program for CF medication Trikafta. 

The drug is also now listed in Alberta and Saskatchewan. 

Patients who are eligible and qualify will have access to Trikafta through public drug programs, with eligibility criteria yet to be specified by each province.  At list price, Trikafta costs approximately $300,000 per patient per year.

"Our community has fought hard for this day and sadly lost many loved ones along the way. We are relieved that Ontario, Alberta, and Saskatchewan have moved forward to ensure access to Trikafta. Now, we call on all other provinces to move swiftly,” said Dr. John Wallenburg, chief scientific officer of Cystic Fibrosis Canada in a news release on Friday.  “While we are pleased with the news, we also need to ensure that access to Trikafta is granted to everyone eligible under Health Canada’s indications. We ask the provinces to follow Cystic Fibrosis Canada’s clinician-developed guidelines and provide access to all Canadians living with CF who would benefit from this life-changing treatment."

In June 2021, Health Canada approved the use of Trikafta, but CADTH (Canadian Agency for Drugs and Technologies in Health) had outlined strict criteria recommendations for public funding to gain access to the drug.  If adopted, the recommendations would exclude 27 per cent of the CF patient community, mostly affecting youth.

The recommendations received negative feedback from the CF community patient groups and clinicians.

The Vanstones and Simcoe-Grey MPP Jim WIlson, met with Minister of Health, Christine Elliott last month to discuss the negative impacts of adopting the recommendations from CADTH. The trio met with Elliott nine years ago when they convinced the Ontario government to approve coverage for CF drug Kalyedco, after a lengthy public battle. Elliott was the provincial health critic at the time. 

Had Kalydeco not been funded by OHIP,  the Vanstones would need to pay $350,000 yearly for the drug.  Even with private insurance and participation in a drug study, they were looking at a cost of about $60,000 per year.  

The Vanstones and Wilson left hopeful after their meeting with the Minister, when Elliott last month indicated that the province would not be adopting the CADTH recommendations. 

“Our government has taken urgent action to ensure all cystic fibrosis patients will have more timely access to the effective and life-changing treatments they need,” Elliott announced on Friday.  “Providing coverage for Trikafta is one more way our government is building a sustainable, modern, and connected health care system that will expand coverage to new and innovative treatments and provide high-quality health care to patients for years to come.”

CF Canada says it is unclear if CF physicians will prescribe Trikafta to anyone who falls under Health Canada’s indication or if they will have to abide by CADTH’s recommendation, but today's announcement from Elliott noted those who do not meet the criteria may work with their doctor to apply to the Exceptional Access Program (EAP) to be considered for funding on a case-by-case basis.

Cystic Fibrosis Canada is now calling on the other provinces to quickly fund Trikafta under their own province’s public drug programs using Health Canada’s indications and Cystic Fibrosis Canada’s clinician-developed guidelines for access and continuation.

"We urge all remaining provinces to ensure swift access for all who could benefit from the drug as recommended by their physician," read part of their news release. 

Nineteen-year-old Madi will now be able to transition from her current CF drug Kalydeco medication to Trikafta, as her condition has worsened over the past year and her doctors are recommending the switch.

"She cried when I told her!" Beth told BradfordToday. "I am so happy for all the lives that will be saved and changed, the weight lifted from families shoulders, it's a big relief."

The Vanstones will be filming a new commercial in the U.S. about the lack of rare disease drug strategy in Canada later this month. Beth has also started to work on a rare disease drug strategy with a fellow advocate group, "Mon". 

"Access to Trikafta will mean longer and healthier lives for so many people and the ability to plan for a future that many feared they might not live to see," said Kelly Grover, president and CEO of Cystic Fibrosis Canada. "The cystic fibrosis community in Ontario has fought long and hard to get this drug into their hands."

According to CF Canada, it is estimated that one in every 3,600 children born in Canada has CF. More than 4,300 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics.


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Natasha Philpott

About the Author: Natasha Philpott

Natasha is the Editor for BradfordToday and InnisfilToday. She graduated from the Media Studies program at The University of Guelph-Humber. She lives in Bradford with her husband, two boys and two cats.
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