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Cystic Fibrosis drug now available after years-long battle

September 30, 2021   ·   0 Comments

For those suffering from Cystic Fibrosis in Canada, a recent announcement by Simcoe-Grey MPP Jim Wilson, that a medication will now be available to people in Ontario is good news after a years-long battle to allow the drug into the country.

However, the drug will still not be available to everyone.

The drug, Trikafta, was approved by Health Canada in July, and then went to a negotiation stage to determine the price. Trikafta, along with two other drugs, Kalydeco and Orkambi, have proven to improve life quality and extend the lives of people living with cystic fibrosis.

Ontario Health Minister Christine Elliot announced on September 24 that Trikafta has been

added to the Ontario Drug Benefit Formulary.

“Much of the credit for this process goes to families in our region who brought this issue to my attention eight years ago and have lead the charge every step of the way,” Mr. Wilson said. “People like Beth and Madi Vanstone, and Sasha Haughian and Jamie Larocque, have been tireless in their efforts to access these innovative drugs and they have become true advocates in their own right.”

The announcement comes after a complex drug approval and reimbursement process involving the federal government, the provinces and the drug manufacturer, Vertex.

The province’s approval is the last step of the process and it means that doctors in Ontario can now prescribe Trikafta for people aged 12 and over with cystic fibrosis, and that the medication will be funded under the province’s publicly funded drug programs.

Tottenham resident Sasha Haughian, has advocated bringing this drug as well as others into Ontario.

Sasha has two sons who both have cystic fibrosis, and while she views the fact the drug will be available as a positive thing for some people, her sons will not be eligible to receive it.

“It is great that this has happened,” Sasha said. “It’s going to help people. It’s a game changing, life saving thing.”

At the same time, the drug will not be available to her sons because they do not meet the necessary criteria to receive it.

“It was a big announcement, but there’s a reality to it that they don’t mention,” Sasha said. “There’s a criteria attached to it – you have to have 90 per cent or lower lung function to qualify. It’s great for someone who is really, really sick, but my child won’t qualify for it. He has to get sicker before he can actually get it. When you have CF, every year you lose lung function – the game is just trying to keep that lung function up. I just don’t like having to watch anyone get sicker.”

Sasha said she has not received an answer as to why the criteria means a CF sufferer must develop worse symptoms before being eligible to receive the drug.

In the U.S., Trikafta has been used to treat very young patients with good results and in many cases helps prevent the progression of the condition.

Patients go through routine screening that records their condition and the progression of the condition over time.

The introduction of these drugs into the Ontario health care system is part of the process of developing new treatments for those with Cystic Fibrosis.

By Brian Lockhart
Local Journalism Initiative Reporter


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