Thanks so much for sharing this. My cousin Shawn, who was a few years older than me, died of CF in 1990, so it has especial resonance for me, but I think anybody would find the stories that it tells and the questions that it grapples with profound. (And of course fuck our cruel system of for-profit medicine that puts an obscene price tag on this drug.)

When I was twelve years old and learning HTML by opening source code on my dad’s computer in Silicon Valley, I used to pop up in Yahoo! chat rooms where folks would initiate conversation with a/s/l. Anyone here remember that? 1996ish?

The first online friend (and ultimately email pen-pal) I made was a thirteen-year-old boy in boarding school in South Africa. We wrote about everything and anything, the longest emails of my life. I absolutely fell in love with him, as one does in youth when faced with such open-hearted vulnerability and impossible distance. Meanwhile, he taught me all there was to know about cystic fibrosis and the experience of living with doctors’ prognoses of an early death. He would disappear from the Internet for weeks at a time, stuck in hospital with lung infections and other complications.

We celebrated his fortieth birthday last year, over email, and the wonder of all that’s changed for him since this treatment became available. Science! Amazing.

I don't know how I could have possibly missed this. How were there not national headlines about such an incredible breakthrough?

I wept, reading this article. Thank you for sharing it.

I highly recommend Breath From Salt by Bijal P. Trivedi. It chronicles the history of cycstic fibrosis and is both fascinating and poignant. Part of the book is about the development of this drug.