Cystic Fibrosis drug now available after years-long battle

By Brian Lockhart, Local Journalism Initiative Reporter

Published Sep 30, 2021

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.

This item is reprinted with permission from New Tecumseth Times. See article HERE.

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