How the Cystic Fibrosis Miracle Drug Is Playing Out in Real Life
Trikafta has been a game changer for many people with cystic fibrosis, but not everyone gets access
Author’s note: I began reporting this story in December, far before it was known that a new coronavirus would spread throughout the world. At the time, the biggest news in the community of people with cystic fibrosis was the arrival of a strikingly effective drug for their disease. Because cystic fibrosis compromises lung function, the danger of Covid-19 is of particular concern for them.
This is what it feels like when you can’t breathe: It begins with a tickle in your throat and progresses to a stretch of coughing fits so bad it lasts hours, sometimes through the entire night. Some say it feels like breathing through a straw.
It’s an experience not unfamiliar to people with cystic fibrosis, a progressive disease where infections and mucus build up in the lungs. It can leave people struggling for air, and it’s associated with an early death. One coughing fit was so fierce for Nicholas Bell, who has this illness, that he tore an abdominal muscle.
Bell’s lung function started deteriorating rapidly in the summer of 2018. By June 2019, when Bell and his wife drove from their home in Omaha to the…
