The Changing Face of Cystic Fibrosis
Refelctions on the latest Cystic Fibrosis Foundation Registry data
So much has changed in the world of Cystic Fibrosis since I took on the role of Development Director at the Cystic Fibrosis Association of North Dakota in 2013. Some of these changes snuck up on me– babies growing into teenagers, children into adults, marriages, parenthood, and sadly, losses.
However, a closer look at the numbers from the
Cystic Fibrosis Association Patient Registry for 2023 (the most recent registry release), I see that the changes are far more dramatic than what I observe in our office.
It is inescapable–there is a change (mostly positive) in the CF landscape!
The CFF Patient Registry tracked 33,288 individuals living with CF in the US. These individuals racked up 100,648 clinic visits, 12,569 telehealth visits, and 10,164 hospitalizations. As a bit of a data wonk, these numbers are quite telling. One that stands out is the hospitalizations– of those with CF, only about a third need to be hospitalized in a year! When I first joined the team at CFA in 2013 it was not uncommon for nearly ALL of our adults (and many of the children) with CF to spend a week or more per year in the hospital for a tune-up.
As you can imagine, these hospitalizations were expensive, time consuming, and disruptive in the lives of our members.
The rate of pulmonary exacerbation needing to be treated by IV antibiotics is down by well over 50% since 2019. A pulmonary exacerbation is when lung symptoms worsen are quite common in people with CF. Two factors leading to this improvement include the increased infection prevention and control related to the pandemic, and the widespread use of Trikafta.
Our CF population is aging–and what great news this is!! In 2003 the number of people with CF aged 18 and older in the US was 8,518, in 2023 that number has jumped to 20,107!
In 20 years the number of pregnancies has jumped from 162 a year to 675 a year! And, likewise, the annual mortality rate dipped to 7.0 per 1,000 people from 16.6.
There has been a dramatic decrease for the need for lung transplants with 242 nationwide in 2013 down to 61 nationwide in 2023.
65% of adults with CF have full-time or part time jobs, and 41% of adults with CF have college degrees.
There is some hard news as well–our friends with CF do suffer from depression( 26% of patients age 12 and over) and anxiety (28% of people age 12 and over). There is still much work to do.
The biggest, and most promising news is the changing survival outlook. Among people with CF born between 2019 and 2-23, half are predicted to live to 61+ years. One of the CF dads reported to me at our golf tournament last month that his daughter learned at her last appointment that the predicted life expectancy of someone taking Trikafta is 82.5 years–this is amazing!!
What does this mean for us as an organization, and you as a supporter? Your help is making a difference! YOU are changing lives.
Your support is helping three young people attend college this fall (and we have the capacity to help more!).
Your support makes it easier for our friends with CF to afford these life changing and life extending medications!
Your support makes travel to CF care centers easier and more affordable.
Your support is changing and extending lives! Thank you!
