How does it feel to suddenly get decades of life added?

April 21, 2024 11:17 AM

Jenny Livingstone has cystic fibrosis. She was not supposed to live beyond her mid thirties. But a new treatment is adding decades onto her life and she's having to consider the future in a new way now. Here's an interview with Jenny and Max Fisher from Pod Save America [~45m] about her life and her treatment and what this new extended lifespan means to her.
posted by hippybear (6 comments total)

A friend of mine with CF passed away last year. She made it to 41. The last couple of years were really rough. But she fought for them.
posted by notoriety public at 11:27 AM on April 21 [4 favorites]

Holy crap. It must be something like being sentenced to death, spending years fighting it, and suddenly having your conviction overturned. They give you a future, but then what? With this Trikafta, suddenly you need to find $300,000 a year for the drugs that keep you alive, and you live in a country that doesn't like old or sick people.

Atlantic (archive):

A 43-year-old woman I interviewed asked not to be named, because she feared that speaking about her improved health would cause her to lose disability benefits, which would also get her kicked off the government insurance that pays for Trikafta. Her health has not improved as dramatically as others’ has, and she still has frequent infections and occasional bleeding in her lungs. If she returns to work but her health declines, it could take a long time to get back on disability—time she would have to go without Trikafta. She would also need a job with health insurance good enough to cover the expensive drug—but could she even get one as a 40-something with no recent employment history?

posted by pracowity at 12:40 PM on April 21 [13 favorites]

I grew up with two kids my age in my immediate orbit who both had CF. One was a friend, and the other a neighbor. Both of them lived in some very reckless ways through their teenage and young adult years. That didn't come as a surprise to anyone who knew them, and how they grew up in hospitals being told they'd never live to 30 - but it sure left a path of destruction.

Both of them are now in their early 40s and are healthier than they've ever been in their whole lives. But they can't or don't work, have no post high-school education, and are living with a lot of consequences of their now-lengthened lives.
posted by onehalfjunco at 4:34 PM on April 21 [3 favorites]

I went back to school about fifteen years ago in part because I'd gone from a PhD program to answering phones and doing insurance crap at the pulmonary office. That's where I met the adult CF patients. Sometimes I'd help arrange contacts for the few places who did lung transplant for them, sometimes get them in for urgent inhaled antibiotic sessions, sometimes just make sure these 20 year olds didn't have to hang out in the waiting room too long at 8am. They were my age (18-35, I think, was one of our oldest) and they knew they had a timer over their heads.

Last year I ran into one of them in the elevator. Looked great. The change in therapy in 15 years has been just astounding.
posted by cobaltnine at 5:21 PM on April 21 [5 favorites]

Here in Australia, Trikafta has been on the public Pharmaceutical Benefits Sheme for two years. My partner is 41yo and has been taking it for four years, as she was able to get on the trial program early because her lung function was below 30%. The year before Trikafta, she was hospitalised 5 times, for a total of 4 months. Each day required an hour or two of "physio" to clear her lungs. Travel involved all sorts of precaution and planning. Trikafta has been life-changing. No more daily physio. No more frequent trips to hospital for antibiotics. She has had two short trips to hospital since, both times to improve her health so we could travel without worrying.

Most people her age born with CF were given life expectancies under 30 years. Many of the kids she grew up with (many kids develop a network of other CF sufferers meeting during frequeny visits to hospital) didn't make it. Trikafta has changed our expectations. Who knows how ling we have, but having them in good health is an absolute blessing.
posted by bigZLiLk at 6:02 PM on April 21 [14 favorites]

I have these weird memories of being given these pamphlets about cystic fibrosis when I was in, maybe elementary school in the Seventies? Like these informational booklets, describing this young women who was having to do these moist air inhaler treatments and other things, and her lungs were all full of goop and stuff? Like, it was a really strange thing that this was basically a course during some part of my elementary school. Like how we learned how to use the telephone in second grade.

Anyway, I had sort of thought that CF had been solved because I hadn't heard much about it for a long while, so this interview as really surprising to me. I'm so glad this treatment is available. I'm sad that it isn't a cure. The price in the US is a crime, but much of drug pricing in the US is a crime.

Above all else, I simply cannot imagine what being born with a death sentence that suddenly is removed would be like. I don't think she even really touches on it much in the interview.
posted by hippybear at 7:21 PM on April 21