Twin brothers Arash (l) and Siavash (“Sia”) Sorkhabi, 38, were diagnosed with cystic fibrosis at age four. Born in Tehran, Iran, they now live together in downtown Toronto. They both moved here to join their sister and receive better cystic fibrosis care.

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Sia opens the medication cabinet in the kitchen of the condo he shares with Arash. With cystic fibrosis, thick mucus that fills the lungs also keeps the pancreas from releasing enzymes that the body needs to digest food. In addition to other medications and treatments, most individuals with CF must take enzymes with their meals to make up for this pancreatic insufficiency.

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Sia and Arash gained free access to Trikafta through compassionate care from Vertex Pharmaceuticals, the company that makes the drug. The medication has been life-changing for the two brothers. They have increased lung function and no longer have to endure frequent hospitalizations. They are both involved in the CF community and have advocated for widespread Trikafta access for years. “There is no cure for CF patients, but so far the best drug to improve lifestyles has been Trikafta”, says Arash.

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Jacob Jaramillo, 34, co-founded the patient-advocacy group CF Get Loud. For years, the group has been advocating for all individuals to have access to Trikafta immediately. Jacob was diagnosed with cystic fibrosis at age 8. Having a degenerative disorder means an uncertain future, he says. “I don’t think a lot of young people allow themselves to want”. A bad infection in 2019 left Jacob very sick for several months, until a “guardian angel” in the United States sent him Trikafta before it was approved in Canada. Within a week Jacob’s health improved.

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Before gaining access to Trikafta, Jacob had had to stop golfing and working as a cook because of his declining health. Once he began taking the medication he was able to return to these two passions. He is no longer short of breath and his energy levels are off the charts. The changes in his abilities have many positive effects on his life. Being able to contribute as a husband by performing tasks like taking out the garbage is important to him. Trikafta has “awoken so many layers”, he says. His experience with the medication was what ignited his passion for Trikafta advocacy.

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In early 2020, there was a lot of talk in the CF community about the possibility of Trikafta never even coming to Canada. Jeff Allen, 47, says he felt so disheartened during that period, wondering if he would ever have access. He has now been receiving Trikafta for free through the HomeCare program at Ontario Drug Benefit Program (ODB) since December 2021, because of having a portacath. Jeff had to “duke it out” with his private insurer to ensure that he has their coverage as a backup plan. If he ever has his port removed he will not be eligible for the HomeCare program.

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Jeff demonstrates a percussive device that he used to use to loosen up the thick mucus in his lungs caused by cystic fibrosis. Since starting Trikafta, he doesn’t have much need for the device anymore and plans on selling it.

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Clara Rempel-Segal, 6, does positive expiratory pressure (PEP) therapy as part of her morning treatments, while her mother Shauna looks on. PEP devices help air get behind the thick mucus that cystic fibrosis causes and move it from lung and airway walls. Clara’s lungs are already showing signs of scarring, which is not unusual for children her age who have the disease. And more time means more scarring.

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Clara’s mother Shauna administers manual percussion physiotherapy while Clara watches cartoons. This treatment helps to loosen the thick mucus that resides within her lungs. In July 2022, Ontario became the first province to fund Trikafta for individuals aged 6+ who have at least one F508del gene mutation. During the wait for this news, Clara’s parents were guarded in their optimism, aware that public and private payers had to agree to cover the medication. In the meantime, Shauna hoped that Clara wouldn’t develop a chest infection or other dangerous symptoms caused by cystic fibrosis.

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Debra Mattson, 51, began taking Trikafta in May 2022, four months after her cystic fibrosis clinic informed her that she could begin the application process. After being given this go-ahead, Debra went through months of convoluted back-and-forth communication with 10 different people at the CF clinic, her insurance company, and Vertex Pharmaceuticals. On top of that, the Trikafta hype had been so built up over the years of waiting that Debra was experiencing high levels of anxiety. Debra is so far thrilled with the effects of Trikafta on her health, but 30 years of cystic fibrosis advocacy has made her “tired."

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