It’s time to better support the three million Canadians with a rare disease

Globe and Mail

25 November 2021 - After finding out her private health insurer would no longer pay for a drug helping with her cystic fibrosis, Lilia Zaharieva decided to sell everything she owned to stay on the medication.

“But the drug cost more than $250,000 a year and a friend told me, ‘You own two boxes of books and you don’t even have a car,” recalls Ms. Zaharieva, who was diagnosed with cystic fibrosis at age 2. It’s a rare genetic disease that damages the lungs and digestive system, making it extremely difficult to breathe and function day-to-day. “So even if I did sell everything, it still wouldn’t have been enough.”

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Michael Wonder

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Michael Wonder