Stittsville woman with cystic fibrosis receives game-changing drug after initial denial

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

Bruce Deachman 4 minute read November 25, 2021

Sara Aldrich knew she was getting better as soon as she began coughing and throwing up Wednesday night.

Unpleasant though the experience was, it told the 23-year-old Stittsville student and cystic fibrosis patient that the life-saving medication she’d started taking that day was working, expelling a lifetime of accumulated mucus from her lungs.

It told her, too, that she might actually start making plans for a life that, only a week earlier, held far less promise. 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 all but abandoned, were back on the table.

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

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

This came just weeks after she had been told her mother’s workplace insurance plan, under which she is covered, wouldn’t pay for the drug, which comes with a list price of about $300,000 a year for the thrice-daily 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 NOTICE OF APPROVAL in big letters — and I just started crying.

“I thought, ‘Oh my gosh, I get to run a marathon. I get to have a future. I get to think about my future.’”

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

And, while the coverage approval, made through OHIP+ and Ontario’s Exceptional Access Program, is encouraging, a number of things had to go Aldrich’s way to make it possible. She’s under 25 and on the Ontario Disability Support Program, for example, which helped overcome a couple of OHIP+ age and qualification barriers and eliminated the need to pay high premiums or quit her mother’s plan for other coverage. But, as Cystic Fibrosis Canada’s Kim Steele notes, many other CF patients in Ontario won’t be as fortunate.

“We are delighted 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 hurdles to get access and that so many Ontarians with CF continue to face these hurdles. Some of them are foregoing treatment altogether because they simply can’t afford what the government requires them to pay. This is unacceptable. It needs to be fixed now.”

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

The issue remains particularly dear to Aldrich, whose brother, Chris, also has CF, but who, because he’s 27, doesn’t qualify for OHIP+.

“Although I am so happy to have been given this miracle drug, it’s still bittersweet,” she said. “My brother deserves this drug more than anyone, so the fight continues until everyone with CF has access to Trikafta.”

Aldrich was diagnosed with CF when she was 16 months old. The disease is a progressive, degenerative multi-system condition that affects mainly the lungs and digestive system by creating a buildup of thick mucus in the lungs, causing respiratory ailments, 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 younger than 33.

And, while she’s heard of some patients taking as long as three months before fully experiencing the effects of Trikafta, Aldrich says those are rare and she’s hoping to see more marked improvements, such as climbing a flight of stairs without great difficulty, within a couple of weeks.

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


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