Letter From Kelly

NOVEMBER 28, 2024

In response to the Globe and Mail article on November 21, 2024, “Cystic fibrosis drug reduces hospital visits, offers patients hope—at a cost” our CEO, Kelly Grover, sent this letter to the editor. The Globe published it November 28.

Dear editor,  

Managing drug costs is an important issue to discuss. The cost of Trikafta is often examined. As noted in the article, list prices are not the price paid by the public payer and it is difficult to analyze cost impacts without knowing the true cost. The CIHI report does note that costs to the system have been impacted. However, it does not quantify the large costs saved by the reduction in transplants (in 2019, there were 57 organ transplants, which our Burden of Disease study estimated direct and indirect costs per year of $12M—and in 2021 with introduction of Trikafta there were seven organ transplants). The report also does not consider avoided costs related to the substantial medical care, caregiving and socioeconomic burdens this disease requires. As someone with direct sight to the impact of this drug on people living with cystic fibrosis, the arrival of this drug has been incredibly special to see. Future plans are being made, careers embraced, families built, and lives lived. Let us not forget that cystic fibrosis is a fatal disease that people continue to die from, far too young. They have been given a new lease on life and that matters. 

 Kelly Grover, President & CEO, Cystic Fibrosis Canada