The cystic fibrosis (CF) patient community in Ontario is happy after the provincial government announced this week that it has expanded coverage for the lifesaving drug Trikafta to include all CF patients aged six and over through its publicly-funded drug program.
The province is also changing the eligibility criteria to remove the measurement of patients’ lung function to further reduce barriers for cystic fibrosis patients to access life-changing treatments.
“Expanding coverage will ensure that more children with cystic fibrosis will be able to benefit from this innovative, life-changing treatment sooner,” said Sylvia Jones, deputy premier and minister of health. “Providing patients with more options for treatment is another step in our government’s work to build a stronger health-care system for all Ontarians.”
Previously, treatment was only available to Ontarians aged 12 and over. Following new recommendations by the Canadian Agency for Drugs and Technology in Health (CADTH), Ontario is now the first province to expand access to youth aged six to 11. Eligible patients and their families should reach out to their health-care team to help determine if Trikafta is the right treatment option for them.
“Today’s news will change the trajectory of the disease and the future for many children and adults in Ontario who live with cystic fibrosis,” said Kelly Grover, president and CEO, Cystic Fibrosis Canada. “Ontario was one of the first provinces to fund the drug for those 12 years of age and older last year, and today has continued to recognize Trikafta’s extraordinary, transformative value, by expanding coverage of Trikafta to include children ages six to 11 years old. We are pleased to see that the restrictive start criterion has also been removed, enabling more people to access the drug. We celebrate this news alongside our CF community in Ontario, who have worked tirelessly for this day.”
This was most welcome news to local CF and rare disease community advocate, Beth Vanstone, who alongside her daughter CF Warrior Madi, has been fighting for access to lifesaving medications for Canadians for the past 10 years.
"Hats off to Sylvia (Jones) and the Ontario Ministry of Health for recognizing the urgency and having that done, that says a lot to our community, and it also says a lot to the work our community did to get to this point," said Beth. "I am hoping that the other provinces will quickly follow."
Beth says this is a step in the right direction for the entire rare disease community.
Beth and Madi were in Ottawa last month for the Canadian Organization for Rare Diseases (CORD) conference to advocate for a Canadian rare disease drug strategy. Over the weekend CORD sent a letter to all the premiers, seeking their support to work together on the strategy which would give patients quicker, affordable access to lifesaving medications and treatments.
"With a national Rare Disease Drug Strategy underway, we now have a once-in-a-lifetime opportunity to build on growing momentum to implement a coordinated pan-Canadian strategy, so that every Canadian, no matter where they live, can live his/her best life," read part of the letter.
In 2019, Canada pledged a $1B two-year investment in rare disease drugs.
"It's imperative that the government continue to work with patients and groups that have the experience and knowledge and history and fight and use that money to invest in a better pathway," said Beth. "This is a huge opportunity for the rare disease community."
-with files from Natasha Philpott
