For generations of Australians living with cystic fibrosis, adulthood was often viewed as an unlikely destination, but that story is changing.
New data from the Australian Cystic Fibrosis Data Registry shows that more people with the condition are living longer, reaching adulthood, building careers and starting families. The figures were released as healthcare professionals, researchers and community representatives gathered in Geelong for Australia’s largest cystic fibrosis conference.
There are now 3,916 Australians living with cystic fibrosis, the highest number recorded. Adults account for 62 per cent of those living with the condition, compared with 56 per cent in 2020 and just one third when the registry was first published in 1999.
The increase is not being driven by more babies being born with cystic fibrosis. It reflects longer lives for people who have the condition.
“Just a generation ago, many Australians born with CF were not expected to live into adulthood. Life was often shaped by repeated hospital stays, malnutrition, social isolation and the unnerving knowledge that time could be so unfairly limited. But today, what is possible for those living with CF is a changing story,” said Dr Jo Armstrong, Chief Executive Officer of Cystic Fibrosis Australia.
The latest registry figures point to progress across several areas of life. Life expectancy is continuing to improve, hospitalisations are falling, and 74 per cent of Australians with cystic fibrosis are now participating in employment, up from 69 per cent in 2020. Reported pregnancies have almost doubled over the same period, rising from 42 in 2020 to 81 in 2025.
Predicted survival has also increased. Babies born with cystic fibrosis between 2019 and 2025 are expected to live to the age of 70.
The changing outlook is being brought to life through a new national campaign and multimedia exhibition titled 'CF: There’s More to the Story'. Created by Melbourne photographer and filmmaker Alexandrena Parker, who is 37 and also lives with cystic fibrosis, the project combines portrait photography, personal reflections and short films.
Parker’s work follows six Australians whose lives span almost six decades. Among them are Ashley Hayes and her six-year-old son Heath, who was diagnosed through newborn screening, and 12-year-old John Berman, who dreams of becoming a police officer.
The campaign also features former Wallaby Nathan Charles, marathon runner, podcaster and author Bradley Dryburgh, double lung transplant recipient Carolyn 'Caz' Boyd and Jess Ragusa, who has realised her dream of becoming a mother.
“These stories celebrate possibility, but they’re also honest, personal, and revealing. This campaign asks people to look closer at the stories behind each face, the strength, complexity, resilience and hope, and the parts of CF that often remain invisible. There is no single story of CF anymore and that is what I wanted this work to show,” said Alexandrena.
The stories reflect the breadth of experiences now emerging within the cystic fibrosis community. Boyd is approaching her 60th birthday after receiving a double lung transplant at 27. She continues to advocate for people with lived experience to have a greater influence on research, healthcare services and clinician education.
Charles became the only known person in the world with cystic fibrosis to compete in elite professional contact rugby. His career, including wearing the Wallabies jersey, demonstrated possibilities that once seemed beyond reach. “During my childhood, the conversation around CF was about limitations. Pulling on the Wallabies jersey wasn’t just a personal achievement, it was proof that the limits people accept aren’t always the limits that exist. If a young person with CF can look at these stories and believe their future is bigger than their diagnosis, then we’ve achieved something special.”
Dryburgh, who recently married and released his memoir I Wrote My Own Eulogy, speaks publicly about the opportunities and continuing challenges of life with cystic fibrosis, including diabetes, liver disease and fertility.
For Ragusa, motherhood was once considered unlikely. She and her husband are now raising two young boys, reflecting the growing number of people with cystic fibrosis who are starting families.
Parker’s own life echoes the wider shift. As a teenager, she remembers reading that she would probably live only into her early thirties. She went on to build a career photographing major Australian brands and is now travelling through Europe with her husband and young daughter on a working holiday.
The progress has not removed the seriousness of cystic fibrosis. The condition remains a complex, lifelong genetic disease that affects the lungs and digestive system. It causes unusually thick and sticky mucus to build up in the airways and digestive tract, increasing the risk of repeated lung infections and progressive damage. It can also affect the pancreas, making it harder for the body to digest and absorb food.
As more people live into adulthood, their healthcare needs are changing.
“Progress should not be mistaken for the finish line,” she said. “Cystic fibrosis remains a serious, complex and lifelong condition requiring ongoing treatment, monitoring and care. This unique campaign is important because it shows the people behind the data and the realities of living with CF.”
Elisha Whitfield, Senior Country Manager at Vertex ANZ, said the initiative reflects the company’s long-standing involvement with the cystic fibrosis community.
“For more than a decade, Vertex has had the privilege of working alongside the CF community in Australia. In that time, we have seen extraordinary resilience, determination and optimism, but also the realities that continue to shape life with CF. This exhibition shines a light on the people behind the diagnosis, the experiences that are often unseen, and the importance of continuing to listen, learn and work together to help improve the lives of people with CF.”
'CF: There’s More to the Story' is a collaboration between Vertex and Cystic Fibrosis Australia.
