Woman with previously denied cystic fibrosis receives revolutionary drug

Sara Aldrich’s application for provincial coverage for Trikafta, a drug that, while not a cure for CF, dramatically reduces its severity and slows its progression, was recently approved.

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Sara Aldrich knew she was getting better as soon as she started coughing and vomiting on Wednesday night.

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As unpleasant as the experience was, she told the 23-year-old Stittsville student and cystic fibrosis patient that the life-saving medication she started taking that day was working, expelling a lifetime of accumulated mucus. of your lungs.

He also told her that she could start making plans for a life that, just a week earlier, had been much less promising. Suddenly her hopes of running a marathon, having a long teaching career, or raising children and watching them grow up, which she had almost given up, were on the table again.

“All the goals that I had set for myself I can achieve now,” he said Thursday.

Just days before, Aldrich learned that his application for provincial coverage for Trikafta, a drug that, while not a cure for CF, dramatically reduces its severity and slows its progression, had been approved.

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This came just weeks after she was told that her mother’s work insurance plan, under which she is covered, would not pay for the drug, which has a list price of around $ 300,000 a year for the pills three times a year. day.

“It felt so good,” he says of the recent change. “I was sitting at my desk, writing an exam, and I opened this email, it says APPROVAL NOTICE in big letters, and I started crying.

“I thought, ‘Oh my God, I can run a marathon. I can have a future. I can think about my future. ‘

He wanted to keep the news from his mother a secret until he actually had the drug in hand, but two days later, on November 20, he snapped and recorded his mother’s joyful and tearful reaction on video. Three days after that, she took her first dose, first by blowing out candles on a celebratory donut, a handmade sign nearby that read, “Happy rebirth day, Sara!”

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And while the approval of the coverage, done through OHIP + and Ontario’s Exceptional Access Program, is encouraging, several things had to go Aldrich’s path to make it possible. You are under 25 years old and enrolled in the Ontario Disability Support Program, for example, which helped overcome a couple of OHIP + qualification and age barriers and eliminated the need to pay high premiums or waive the plan. your mother to get other coverage. But, as Kim Steele of Cystic Fibrosis Canada points out, many other CF patients in Ontario will not be so lucky.

“We are delighted to learn that Sara has gained access to this life-changing therapy,” said Steele. “It is heartbreaking that I have had to go through so many obstacles to access and that so many Ontarians with CF continue to face these obstacles. Some of them are giving up treatment entirely because they simply cannot afford what the government requires them to pay. This is unacceptable. It needs to be fixed now. “

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Steele describes Trikafta, which was approved for use in Canada last June and added to the Ontario Drug Benefit program in September, as “transformational” and “the greatest innovation in the treatment of cystic fibrosis,” citing incidents of CF patients. taking Trikafta. remove their names from the lung transplant waiting list to return to work or raise children.

The subject remains particularly dear to Aldrich, whose brother, Chris, also has CF, but who, because he is 27, does not qualify for OHIP +.

“Although I am very happy that I received this miracle drug, it is still bittersweet,” he said. “My brother deserves this drug more than anyone, so the fight continues until all people with CF have access to Trikafta.”

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Aldrich was diagnosed with CF when he was 16 months old. The disease is a progressive and degenerative multisystemic condition that primarily affects the lungs and digestive system by creating a build-up of thick mucus in the lungs, causing respiratory and digestive tract diseases, making it difficult to digest and absorb nutrients. There is no known cure, and in 2018 half of the deaths in Canada from CF involved people under the age of 33.

And while you’ve heard of some patients taking up to three months before fully experiencing the effects of Trikafta, Aldrich says they are rare and he expects to see more marked improvements, such as walking up a flight of stairs without great difficulty, in a couple of hours. weeks.

“Like I said, I’m already throwing up and I have a little more energy than I did. I can feel it working. “

bdeachman@postmedia.com

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