The fight to have life-changing cystic fibrosis treatments approved

By Melissa Turner

The Haldimand Press

CALEDONIA—There has been an ongoing fight by Canadian Cystic Fibrosis (CF) patients and their families for access  to and coverage of life-changing gene modulating drugs.

Danielle Weil has two-year-old twins, Emme and Erin, who seem quite similar at first glance. However, Emme was born with CF. The issue hits close to home for Weil and her family as she states, “On a personal level, I got involved because I want the best for both of my daughters, and to me that is making sure that Emme has a long and healthy life, and that Erin has her sister for a lifetime.”

CF is a genetic disease that affects roughly 4,300 Canadians; it causes a buildup of thick mucus in the lungs and other organs which can lead to recurring lung infections, causing the lungs and other organs to deteriorate over time. The drugs are not curing, but they treat the root of the disease, which means that when taken consistently they can make life easier for those with CF. Therefore, starting those diagnosed with CF on the gene modulating treatment early can prevent unnecessary damage to the organs and prevent the need for transplants later in life.