Today is World CF Day, a day where worldwide we aim to raise awareness for cystic fibrosis. Of course, at Cystic Fibrosis Community Care this is our role each and every day.
Today I am also sitting down to write my very first blog post as CEO of Cystic Fibrosis Community Care (CFCC). As I do this, my heart swells with many emotions. Hope, determination, and a sense of urgency are among the many feelings. Cystic fibrosis (CF) is not just a clinical term – it is a lived reality for many Australians and their loved ones – a challenge they bravely face every single day.
My introduction to cystic fibrosis wasn’t through a textbook or a conference, but through a close family connection. I have also had the honour of meeting many of our community members, who together fuel my passion for making a meaningful difference in the CF community.
With CFCC, I have found a home and platform where I can channel this passion and energy. Our commitment to supporting families impacted by CF, advocating for improved care, and advancing research has been unwavering. This Blog is an opportunity to keep you updated on our progress in delivering our shared mission.
CF is a genetic condition that, while global, has distinct characteristics and trends in each region. In Australia, the CF landscape has been shaped by dedicated research, community initiatives, and medical advancements. As we look to the future of CF, it’s crucial to understand the current trends, the challenges ahead, and the glimmers of hope on the horizon.
In my first Blog, we investigate the recent advancements and possible future trends for CF in Australia over the coming decade.
Prevalence and Early Detection: Australia has one of the highest incidences of CF in the world. Roughly one in every 2,500 babies born in Australia has CF. Today, CF impacts approximately 3,600 people across Australia. Fortunately, Australia is also a leader in early detection – Newborn screening programs across all states and territories play a pivotal role in the early diagnosis of CF, enabling early interventions and better outcomes. This trend will likely see further refinement in screening techniques, ensuring early and more accurate diagnosis for timely interventions.
Carrier Screening added to Medicare: An estimated 1 in 25 Australians (1m people) carry the gene changes that can cause CF, and most people are unaware if they are a carrier. The carrier screening test involves providing a blood or saliva sample and requires a referral from your GP, obstetrician, geneticist, or gynecologist. From November 2023, the carrier screening cost for CF will be covered by the Medicare Benefits Scheme (MBS).
Life Expectancy is increasing: Over the years, there has been a gradual increase in the life expectancy of individuals with CF in Australia, thanks to advancements in treatment, early diagnosis, and comprehensive patient care. People with CF are now living into their 30s, 40s and beyond. There are now more adults with CF than children – a first for CF in Australia. The increased life expectancy is expected to continue and is a testament to the effectiveness of improved treatments and patient care strategies.
Advanced Treatment and Therapies: The last decade has seen a revolutionary shift in CF treatments in Australia. The emergence of modulator drugs, which target the underlying cause of the disease rather than just its symptoms, has been a game-changer for many. Furthermore, the Australian government, recognising the impact of these drugs, has continued to subsidise some of them, including Trikafta, through the Pharmaceutical Benefits Scheme (PBS), making them more accessible to the CF community. While this is a very positive step forward, there is still a long way to go to ensure everyone can have access to effective therapies, and this includes people with rare mutations, people who are not eligible for current therapies, or who do not respond to modulators. This work must continue with urgency.
The Power of Multidisciplinary Care: Specialised CF Clinics across Australia offer holistic care through multidisciplinary teams (MDTs). These teams, consisting of respiratory doctors, dietitians, physiotherapists, social workers, and more, ensure that every aspect of a patient’s well-being is addressed. MDTs will continue to evolve as they adapt to the latest research and best practices (I.e., dietetics advice is changing, physiotherapy is evolving with modulators, etc.).
Challenges Ahead: While we’ve come a long way, the challenges continue. The high costs of new therapies and medical equipment, even with subsidies, remain a concern. Mental health aspects of living with a chronic condition like CF also require more attention, and there’s an ever-present need to ensure that every individual has access to excellent ongoing care, regardless of their location or socio-economic status. I look forward to delving into some of these challenges and opportunities in future Blogs.
To end, the landscape of CF in Australia is a blend of hard-fought victories, ongoing battles, and promising horizons. With the combined efforts of the medical community, research institutions, advocacy, and community groups, such as CFCC, and the relentless spirit of those living with CF, the future looks hopeful. While there is still much work to be done, the trend is clear: the global and Australian CF community is committed to turning CF from “Cystic Fibrosis” to “Cure Found”.