I turn 37 on April 26.
On the surface, 37 doesn’t sound like a particularly significant age. It’s approaching “I’m almost 40” territory but not quite close enough to claim it. It’s an age best announced exactly as it is: 37.
The number 37 stands out to me, though, because, as I entered adulthood, it was the median life expectancy for someone with cystic fibrosis. No matter how much I tried to live my life, the number 37 was always lurking.
And now it’s almost here.
Every year, as I prepare for the Cystic Fibrosis Foundation’s annual fundraiser, I struggle with how to tell the story in a way that moves people to donate. As I sat down to write this, I considered a simple approach:
Donate if you’d like. Or not. But I prefer you do. Thanks.
But this year I want to emphasize something that’s gotten lost in recent years. Since the release of Trikafta (the “CF miracle drug”) in 2019, the overwhelming public message is that CF isn’t all that serious anymore. For some people, especially those who had access to a drug like Trikafta from a young age, hopefully it will be a very manageable condition.
I still do hours of respiratory therapy each day and spend almost the same amount of time arguing with insurance companies and fighting for access to these life-changing medications. I still have to go to doctor visits, get blood drawn, and rest more than the average person. I take enough medication to fill a comically large weekly pill organizer.
But I’m one of the lucky ones, so, this year, it’s not about me.
It’s about the 10% of the CF population that doesn’t yet have a drug like Trikafta.
CF has so many different genetic mutations that it’s not a one-med-fits-all approach — yet. To put it bluntly, it’s as though nothing has changed for 10% of the CF population. They’re still exhausted from coughing and fighting recurring lung infections. They’re in and out of the hospital. They’re struggling to maintain weight. They’re awaiting lung transplants.
And those are just some of the physical manifestations.
The mental and emotional toll is even more daunting. Still in poor health, they’re riding the bench as they watch the CF community live their best lives.
As you may recall, I was in that group for almost two years after Trikafta’s approval, until we figured out how to make it work without serious side effects.
I’m healthier than I ever could have imagined at this magical age of about-to-be-37.
But my heart breaks for the 10% who’ve been left behind.
So, please, for the love of everything holy, continue to donate until we’ve found a solution that works for everyone with CF. Although I’m grateful for Trikafta every day, I also feel a sense of powerlessness, wishing desperately that I could do something to ensure everyone with CF gets to experience the glory of taking a deep breath.
Lastly, if you’re a member of the CF community who has (for lack of a better term) moved on, please pause to reconsider. You didn’t singlehandedly earn this new lease on life. Whether you’ve raised money in the past or sat idle while other people did, there’s an entire community to thank for your newfound health. Now it’s your turn to make the most of your success so others can experience the same.
Here’s to 37 years!