YouTube Viewers are Witnessing the End of a Deadly Disease
Trikafta appears to be a miracle drug for cystic fibrosis sufferers, who are sharing their stories on YouTube
“I don’t know why I’m so nervous,” Stephi Lee Wright says, as she pops the foil on her first dose of Trikafta. In her video, “The Drug That Could Save My Life: First 2 Weeks (Actual hell)” the 25-year-old shares the unpleasant side of healing. “I’ve been coughing up so much shit,” she says at the outset of day two. She is embarking on what’s known as the “the purge,” the initial phase on Trikafta when patients start to cough up the sticky, dark mucus that coats their lungs. Fellow YouTuber Morgan Grindstaff shares in a video called “Trikafta Week 1 Update!” that he’s been coughing up “fist-sized balls” of brown, black, and green goo — “all the colors of the mucus rainbow.”
Trikafta is the latest breakthrough drug to treat cystic fibrosis, or CF, which causes a build up of mucus in the lungs as well as the digestive system. This build-up results in regular coughing fits, lung infections, and poor digestion, eventually taking patients down the path to multiple organ failure. As of 2018, studies showed that the median age of survival for patients with CF had reached the early to mid-forties, although each patient’s life expectancy is different. In an October 2019 video called “10 things Living with a terminal illness has taught me,” Wright told her audience: “At the rate my lungs are declining, my life expectancy is about 30” — a difficult pill to swallow for a woman in her mid-twenties.
Later that same month, her prognosis changed when the FDA approved Trikafta.
“I love watching the videos of people opening the box and taking the pill,” CF patient Tiffany Rich said on a recent episode of “Breathe In: A Cystic Fibrosis Podcast.” “It’s like influencers doing an unboxing.” She’s referring to a genre of YouTube videos where popular creators show off recent purchases to their subscribers. But instead of luxury handbags or shiny new outfits, these videos show patients getting the first glimpse of a longer life.