Community Views: Feelings About Increases in Life Expectancy

Thanks to medical advancements and recent breakthroughs in treatment options, people with cystic fibrosis (CF) are living longer and healthier lives than ever before. A few decades ago, few people with CF lived past their teenage years. Today, people with CF are living into their mid-40s and beyond.^1,2

In our 2020 Cystic Fibrosis In America Survey, we evaluated how people living with CF feel about increases in life expectancy. We asked them specific questions about their personal experience with CF – from relationships and family planning to career and financial planning – now that the average life expectancy has increased.

Their thoughts and feelings provide an interesting look into how they live their lives today, as well as how they are planning and thinking about their future.

Increased life expectancy provides hope

“I am happy to have a future with kids and not worry about dying before major life milestones.” – CF community member

“It gives me hope to be able to live a long, happy life with my future husband. It gives me hope of having children someday and being able to be healthy enough to build my career goals.” – CF community member

According to the survey, 65 percent of people living with CF felt that the increase in life expectancy has given them renewed hope. Because of this, more and more people with CF are open to long-term relationships, getting married, starting a family, and setting career goals.

More people are confident in treatment plans

New treatment options and drug therapies, such as Trifakta, have given many people with CF a better prognosis, and thus, a brighter future. Survey respondents reported that they have more confidence in their day-to-day treatments as well as future treatment plans:

• 64 percent of respondents expressed confidence in their ability to manage and complete daily treatments
• 55 percent feel optimistic about the long-term success of their treatment plan

A class of drugs called cystic fibrosis transmembrane conductance regulator (CFTR) modulators have added to this optimism. Several of these drugs are currently being studied in clinical trials. If approved, people with CF who have rare mutations could benefit and live longer lives as well.³

This enthusiasm for clinical trials was represented in the survey:

• 56 percent of respondents with CF have participated in a clinical trial
• 73 percent are interested in participating in future clinical trials

Concerns about the future have lessened

“The increase in life expectancy has improved the chances that I could be around for my child's entire childhood/adulthood. It also has helped us decide whether or not to have more children.” – CF community member

“I’m engaged, and hoping to have kids together and be able to watch them grow.” – CF community member

Survey results show that people with CF still worry about their future – infertility, ability to work, and financial security are all things that cause them concern. But, compared to 2019’s survey, the percentage of people who expressed concern dropped significantly.

In 2019, 56 percent of people said they were concerned about their future because of their CF, as opposed to 43 percent who said the same thing in 2020. And only 28 percent said their condition stops them from doing the things they want to do in life.

The road ahead

While there has been amazing progress, there is still more to be done. A portion of the CF community still does not have targeted therapy options to help treat their condition. This is why clinical trials are vital and more important than ever in providing increased life expectancy to all people with CF.¹

At the end of the day, hope is on the horizon. Let your voice be heard. Connect with other CF community members on Instagram, Facebook, and Twitter and share your experience.

The 2020 Cystic Fibrosis In America Survey was conducted online from March through July 2020. The survey was completed by 404 people with cystic fibrosis.

The 2019 Cystic In America Survey was conducted online from April through September 2019. The survey was completed by 329 people with cystic fibrosis.