Van Allens ‘super happy’ province will cover cystic fibrosis medication

·6 min read

NORTH PERTH – Ontario announced on Sept. 24 it is now providing coverage for Trikafta, the latest and most effective treatment option for cystic fibrosis (CF) to become available, under its publicly-funded drug program to give patients more access to life-changing treatments.

Local parents Shane and Sarah Van Allen, whose eight-year-old son Wade was diagnosed with CF, have been part of the push by the CF community to get the Trikafta approved and available.

With the latest announcement, Ontario patients aged 12 and up who do not meet the lung function criteria may work with their clinician to apply to the Exceptional Access Program (EAP) to be considered for funding on a case-by-case basis.

The drug was approved by Health Canada in June 2021 in an aligned review with the Canadian Agency for Drugs and Technologies in Health (CADTH), allowing for near-simultaneous issuance of Health Canada’s Notice of Compliance and CADTH’s draft reimbursement recommendation and expediting the review and recommendation process. A positive health technology assessment was received through the CADTH drug review process. This process provides critical insight from patients, clinicians and experts to ensure drug funding recommendations are evidence-based and consider clinical benefit and cost-effectiveness.

“Trikafta is the single greatest innovation in CF history and it has the power to transform the lives of thousands of Canadians,” said Kelly Grover, president and CEO, Cystic Fibrosis Canada. “The CF community in Ontario has fought long and hard to get this drug into their hands. 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.”

Cystic fibrosis is a rare and progressive genetic disease that causes thick mucus to build up in the lungs, digestive tract and other parts of the body. It causes persistent lung infections and leads to loss of lung function. It is estimated that one in every 3,600 children born in Canada has cystic fibrosis, and there is currently no cure for the disease. An estimated 1,500 Ontarians have cystic fibrosis.

Shane said the announcement that Trikafta would be covered by the province took him the whole weekend to absorb.

“When we started two years ago we didn’t know what we were feeling or even what we were doing because we never had to lobby a government or push for anything this passionate before,” he said. “We went into it knowing that Wade wouldn’t qualify right away, we were planning on it being a very long fight.”

“Especially because it costs $300,000 it seems so unattainable,” added Sarah.

Shane said that the annual price tag for the treatment seemed unrealistic but it was never a reason to diminish the fight.

“In all reality, I don’t ever like to set myself up for disappointment because it’s an emotional rollercoaster having a child with CF,” he said. “You never know what can happen but once this carrot has been dangled in front of our face for so long and all of a sudden the news that it’s in our hand. Just all of a sudden it all became real… I think leading up to it, it was always sort of like we were fighting for the future Wade and for the current CFers that need it now because it was very important for people we know in our CF community to have it now… on Friday it just all sunk in for me with this news. It was like – holy crap, not only is the drug here but the funding is here.”

Sarah pointed out that for now, they have to wait until Wade is 12 to get the medication.

“Health Canada has only approved (age) 12-plus but the FDA has approved (ages) six to 11, so it will come,” she said. “Lung function is important too. They have to drop below 90 per cent lung function to get the drug but we’re hoping for a change on that and just offering it to everyone with CF before they get sick.”

Shane said young people living with CF usually have a much higher lung function because they exercise their lungs every day on purpose.

“They do exercise and pep therapy so they at a young age haven’t suffered damage to their lungs yet so their percentages are much higher,” he said.

Sarah said at Wade’s last checkup, his pulmonary function test was 129 per cent.

“100 is perfect,” she said. “For a kid his age and his size (he) should blow 100 per cent – a lot of them are active in sports and they are not sick yet from CF.”

Still, Shane and Sarah hope that 90 per cent criteria are removed and Trikafta becomes available to everybody.

“There still are people we need to keep fighting for and we will,” said Sarah. “We’re not going to stop with our fundraisers. It is not over.”

“It is amazing and John Nater hasn’t let his foot off the gas either, right from when we met with him almost two years ago,” said Shane. “He understands the importance of the constant pressure… It was pretty heartwarming to see that because we’re all skeptical of how our levels of government operate but honestly when it came to fighting for CF there was enough in every riding lobbying their MPs and MPPs that to see them all rally together when they knew it was of grave importance, it’s heartwarming.”

Not only are Shane and Sarah excited about the news but they said Wade is pumped too.

“He’s curious to see what he’s capable of,” said Shane. “I think he thinks he is going to be capable of more and he’s doing pretty good already so we’re pretty excited for him… I think it’s pretty awesome to think of what the CF community is going to be capable of going forward as a group as they lobby together. With the right approach and the right intent great things can happen.”

Sarah said getting the drug publicly funded is a huge win.

“I mean, to know that the drug was available at $300,000 a year, you get mixed emotions with that,” said Shane. “It’s awesome, yes, but I know there are families that don’t come close to making that so to see Ontario be a leader and step up, it’s awesome.”

Sarah said Saskatchewan and Alberta followed suit after Ontario took the lead announcing it would cover the cost of Trikafta.

“I hope that all Canadians will have access to it,” she said.

“We are tickled pink and super happy,” said Shane. “We’re grateful for how we got here. It’s been a crazy ride.

“It’s nice to feel this encouraged again. We’re in good shape.”

Colin Burrowes, Local Journalism Initiative Reporter, Listowel Banner

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