Previously refused cystic fibrosis woman receives groundbreaking 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 throwing up on Wednesday night.

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As unpleasant as the experience was, it told the 23-year-old Stittsville student and cystic fibrosis patient that the life-saving medication she had started taking that day worked, expelling accumulated mucus from her lungs for a lifetime.

It also told her that she might start making plans for a life that was much less promising the week before. 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.

“I can now achieve all the goals I set for myself,” she said on Thursday.

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

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This came just weeks after she was told her mother’s employment insurance, under which she’s covered, wouldn’t pay for the drug, which comes with a list price of about $300,000 a year for the three-day pills.

“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 APPROVAL NOTICE in big letters — and I just started crying.

“I thought, ‘Oh my god, I get to run a marathon. I’m getting a future. I get to think about my future.’”

She wanted to keep the news a secret from her mother until she actually got her hands on the drug, but broke down two days later, on November 20, and captured her mother’s happy, tearful reaction on video. Three days later, she took her first dose, first blowing out candles on a festive donut, a nearby handmade sign that reads, “Happy New Birth Day, Sara!”

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And while the coverage approval, done through OHIP+ and Ontario’s Exceptional Access Program, is encouraging, a number of things had to go in Aldrich’s direction to make this happen. She is under 25 and takes the Ontario Disability Support Program, for example, which helped overcome some OHIP+ age and qualification barriers and removed the need to pay high premiums or stop her mother’s plan for other coverage. But, as Kim Steele of Cystic Fibrosis Canada points out, many other CF patients in Ontario will not be so lucky.

“We’re excited to hear that Sara has been given access to this life-changing therapy,” Steele said. “It is heartbreaking that she had to go through so many hurdles to gain entry and that so many Ontarians with CF continue to take these hurdles. Some of them forego treatment altogether because they simply cannot afford what the government wants them to do. This is unacceptable. It must be resolved 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 greatest innovation in the treatment of cystic fibrosis,” citing incidents of CF- patients on Trikafta take their names off the lung transplant waiting list to return to work or raise children.

The matter remains particularly dear to Aldrich, whose brother, Chris, also has CF but who, being 27, is not eligible for OHIP+.

“While I’m so glad I got this miracle cure, it’s still bittersweet,” she said. “My brother deserves this drug more than anyone else, so the battle 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, multi-system disease that primarily affects the lungs and digestive system by creating a buildup of thick mucus in the lungs, causing difficulty breathing, and in the digestive tract, making digestion and absorption of nutrients difficult. There is no known cure, and in 2018, half of the deaths in Canada from CF were in people under the age of 33.

And while she’s heard that it takes some patients as long as three months to fully experience the effects of Trikafta, Aldrich says those are rare, and she hopes to see more noticeable improvements within minutes, such as climbing stairs without much effort. of weeks.

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

bdeachman@postmedia.com

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