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

Molly Kendrick
Jan 31, 2020 · 6 min read
Photo: Brett Jordan/Unsplash

“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.

Even for audience members with no familiarity with CF, the excitement in these videos is palpable. “I think I’m addicted to videos of CFers finding out about this drug,” says the top comment on a video called “How Am I Doing On Trikafta?!(Watch Me Take My First Dose!)” Doctor office vlogs follow, showing patients taking tests to measure their lung capacity — Wright’s lung capacity increased 25% after just two months on Trikafta.

Until recently, Wright’s channel documented life from the point of view of someone who believed they would die young. She lived in her Honda Element instead of paying rent, and spent the money she made on her illustrations on trips to far-off destinations, like Bali and Myanmar. “I was just kind of doing things because I was going to die soon and it didn’t matter,” she says from her home in Massachusetts.

Grindstaff echoes her sentiments in his video, ‘Trying to process all these EMOTIONS & stay POSITIVE — Trikafta/Surgery Update,“ saying, “My life is officially starting at 29 years old. I don’t really have a lot to show for it. I spent my whole life preparing to die young…I have all this open future, all this unknown. I just don’t know how to process it.”

From Gunnar Esiason’s perspective, this is a “good problem to have.” Esiason also has CF, and is Rich’s co-host on the “Breathe In” podcast. He works as an advocate with the Boomer Esiason Foundation, a CF foundation named after his father, a retired NFL quarterback. He started taking a trial version of Trikafta back in 2018, and has been eagerly anticipating the chance to see others experience the drug for themselves.

On a break between MBA classes at Dartmouth, he says that he and his girlfriend have begun to seriously discuss starting a family, something only possible when you’re “thinking about the next five years, instead of just the next month.” He uses YouTuber Mary Frey as an example who “encapsulates what it’s like to be on the precipice of end-stage illness.” Mary and Peter Frey of “The Frey Life” recently uprooted their lives in Massachusetts in order to live closer to Duke University’s lung transplant center in North Carolina. Since taking Trikafta, Frey has taken a few steps back from the precipice, and a transplant is no longer imminent.

Frey’s success has led to unsolicited comparisons on a channel called “Whit’s Life.” CF patient Whitney Peveler explains in her video “disappointed…I can’t take this life-saving medication,” that her liver function is too poor to take Trikafta. In a soft voice, she says, “It’s disappointing, it’s bittersweet, but I’m so happy for my fellow CF sufferers.” Comments on the video express doubt that Peveler has really explored all her options. “Talk to Mary,” several commenters urge, pointing out that Frey also suffers from liver problems. From her home in Kentucky, Peveler wonders what advice commenters believe Frey could have for her: “No offense, but she’s not a doctor.” Naturally, Whitney felt “pretty down” about not being able to take the Trikafta, but hope remains. Her clinic says she qualifies for another trial drug — an inhaled formulation that’s more compatible with her compromised liver.

Yet even with the abundance of good news, the specter of grief still looms large in the CF community. Trikafta came too late for one of the most famous CF YouTubers, Claire Wineland. Besides her popular YouTube channel, she also had an impressive roster of speaking engagements, including Tedx Talks, and her own 501c3 foundation called Claire’s Place. She confronted her shortened life expectancy with perky aplomb, saying during a presentation in 2016 that she wanted to “change how we see sick people. How can we stop pitying them, and start empowering them?” She died of a stroke following a double lung transplant in 2018, at age 21. Wineland’s name comes up again and again in the comments on Trikafta videos, as viewers grieve that she did not live long enough to try the medication.

Sadly, CF YouTubers don’t need the reminder. “As you grow older with CF, you’re going to start to lose friends,” Esiason says. His other “Breathe In” co-host, Lea Faraone, died shortly after Esiason started taking the trial drug.

“For a while, I resented taking the medication,” he recalls. Grindstaff also discusses feelings of guilt in his ‘Trikafta/Surgery Update“ video: “I’ve been struggling a lot lately with the survivor’s guilt…. I feel selfish that I get to experience this.”

Wineland’s mother, Melissa Nordquist Yeager, wants the CF community to know that her daughter felt her own share of guilt: “Claire spoke often to me about survivor’s guilt when a friend would pass from this disease, so I am sure those feelings resonate throughout our community,” Yeager told FFWD in an email. Despite her grief, she urges patients taking Trikafta to “Rejoice in the fact that you have more to do on this planet, and can make a powerful impact with your own message of hope.”

Wright is trying to do just that, and says she wants her videos to encourage her audience “to appreciate their lives more. People take things for granted when they’re healthy.” YouTube allows audiences to live vicariously, and channels that showcase the material fruits of success rack up millions of views. CF YouTube channels do the opposite, and encourage viewers to appreciate how much they already have.

FFWD

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