Life expectancy
for people with CF

Based on 2019 Registry data, the life expectancy of people with CF born between 2015 and 2019 is predicted to be 46 years.

Data also show that of babies born in 2019, half are predicted to live to be 48 years or older.

It is essential to understand how these numbers are calculated and what they represent to understand what this means for our community.

The Median predicted age of survival refers to a median (the mid-point of a number set). In contrast, life expectancy refers to an average - but the terms are often used interchangeably. It is a calculation that looks at the CF patient population, as captured in the Registry, at each age in a year. This methodology is an internationally accepted calculation for determining life expectancy.

How Long Are People With CF Living Today?

The latest CF Foundation Patient Registry data show steady gains in survival for people with CF. Because CF is a rare disease, small changes in the population can affect survival calculations. Statisticians and clinicians caution against putting too much emphasis on data collected in a single year. This is why it is essential to remember that life expectancy at birth is a calculation that can fluctuate from year to year and may decrease in the future.

Data also show that half of the deaths reported in the Registry in 2019, known as the median age of death, occurred before 32. This means too many people with CF miss the opportunity to finish school, begin careers, start families, and reach other milestones.

For those living with the disease, many still face significant challenges, including frequent hospitalizations, and complications such as CF-related diabetes.

Furthermore, the effect of depression and need to access a time-consuming treatment plan, can require 2-4 hours daily

Mental Health

Percent of people with CF age 12 years and older reported depression or anxiety

0 %
Depression
0 %
Anxiety

Many people with CF report mental health challenges.

So, we still have a long way to go - particularly for those who have mutations that result in faster and more severe disease progression. They do not yet have disease-modifying treatments approved to address their mutation or cannot benefit from modulator therapy due to advanced disease.