50 is the New 25: Life Expectancy With CF

At the NACFC (North American CF Conference) in October 2021, some very exciting news was announced for people and families living with CF. During the first plenary session, it was announced that babies born today had a median life expectancy of 50 years of age.

For the first time in history, children could expect to live half a century while living with CF thanks to better care and therapies like modulators.^1-3 This exciting news is like an enormous landmark in a tediously slow and difficult climb towards higher life expectancy for all families with CF.

Fifty years! Five decades! Half a century! What an incredible milestone number that finally has a true significance in the CF community. But what does it all mean?

What is life expectancy?

Now that many people with CF have a new outlook on the future, they might be wondering how life expectancy is measured? And what does this milestone mean as a whole for the CF community?

Over the last few decades the life expectancy for someone living with CF has increased exponentially from a mere couple of years of infancy to 50 years of age. In 1990 when I was born, life expectancy was around 30 years old – the age I am now. In 2020, the life expectancy reached 50 years old, meaning 50% of babies born in 2020 can expect to live to 50 years of age or beyond.²

Meanwhile, the median predicted age of survival is the midpoint in a set of data of the age of death. This statistic is a more sobering measurement at 34.1 years of age at death.³ However, this statistic cannot predict the age of death for the entire population. It only looks at the deaths that occurred in the given year and takes the median of the set.

What does life expectancy mean for the CF community?

Although survival measurements can offer insight into how long someone with CF might live, they can never tell the whole story. Many individuals continue to outlive life expectancy number with thriving and fulfilling lives especially as more and more therapies are available.

In addition, it’s often believed life expectancy is a conservative prediction. It takes time for these measurements to catch up to breakthrough therapies like modulators that have drastically improved the lives of many.

The great news is as the future is brighter than ever before!

The possibilities are (becoming) endless

The cystic fibrosis increased life expectancy is so encouraging for both adults and children with CF. For a long time I didn't allow myself the space to think too far into the future. Now, it's a bizarre to think of all the possibilities of a longer future.

Will I have grandchildren? Will I travel more? What can I expect to feel like as an older adult? Although the future is bright than ever, there's still many worries and realities of what growing old with CF will be like.

For now, I choose to focus on the positives of increased life expectancy and allow myself the privilege of dreaming into the future.

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