Woman with cystic fibrosis who has previously been denied is given a metabolic medication

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 development, 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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Although the experience was unpleasant, it told the 23-year-old Stittsville student and cystic fibrosis patient that the life-saving medication she had started taking that day worked and expelled an entire life with accumulated mucus from her lungs.

It also told her that she could actually start making plans for a life that only a week earlier held far less promising. Suddenly, her hopes of running a marathon, having a long career as a teacher or raising children and watching them grow up, which she had almost given up, were back on the table.

“All the goals I had set for myself I get achieved now,” she said Thursday.

Only a few days before, Aldrich learned that her application for provincial coverage for Trikafta, a drug that, while not a cure for CF, dramatically reduces its severity and slows its development, had been approved.

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This came just a few weeks after she was told that her mother’s workplace insurance, which she is covered by, would not pay for the drug, which comes with a list price of about $ 300,000 a year for the pills three times a day.

“It felt so good,” she says of the recent turnaround. “I was sitting at my desk writing an exam and I opened this email – it says LETTER OF APPROVAL in capital letters – and I just started crying.

“I thought, ‘Oh God, I have to run a marathon. I have to have a future. I’m going to think about my future.’

She wanted to keep the news a secret from her mother until she actually had the drug in hand, but broke down two days later, on November 20, and recorded her mother’s happy, tearful reaction on video. Three days after that, she took her first dose, first blowing out candles on a festive donut, a nearby handmade sign that read, “Happy Birthday, Sara!”

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And while the coverage approval made through OHIP + and Ontario’s Exceptional Access Program is encouraging, a number of things should go Aldrich’s path to make it possible. For example, she’s under 25 and on the Ontario Disability Support Program, which helped overcome a few OHIP + age and qualification barriers and eliminated the need to pay high premiums or leave her mother’s plan for other coverage. But as Cystic Fibrosis Canada’s Kim Steele notes, many other CF patients in Ontario will not be so lucky.

“We are pleased to hear that Sara has gained access to this life-changing therapy,” Steele said. “It is heartbreaking that she had to go through so many obstacles to gain access and that so many Ontarians with CF continue to face these obstacles. Some of them completely give up treatment because they simply can not afford what the government demand that they pay. This is unacceptable. It must be rectified 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 “transformative” and “the largest single innovation in the treatment of cystic fibrosis”, referring to incidents with CF patients on Trikafta take their names off the waiting list for lung transplants to return to work or to be able to raise children.

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

“Even though I’m so happy to have had this miracle cure, it’s still bittersweet,” she said. “My brother deserves this drug more than anyone else, so the fight continues until everyone with CF has access to Trikafta.”

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Aldrich was diagnosed with CF when she was 16 months old. The disease is a progressive, degenerative multisystem condition that mainly affects the lungs and digestive system by creating an accumulation of thick mucus in the lungs, causing respiratory disorders and in the digestive tract, making digestion and absorption of nutrients difficult. It has no known cure, and in 2018, half of the deaths in Canada from CF involved people under the age of 33.

And although she has heard of some patients taking as long as three months before fully experiencing the effects of Trikafta, Aldrich says they are rare and she hopes to see more marked improvements, such as going up a stair without major problems, within a couple of weeks.

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

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