In Australia, as across the globe, the rising cost of living continues to be a pressing concern for many, significantly affecting those living with chronic conditions such as cystic fibrosis (CF).
The unique challenges that individuals with CF and their families face are being intensified by economic pressures, making the management of this lifelong condition even more difficult.
In this month's reflection, I build on my previous Blogs focusing on the CF landscape in Australia and the impact of CF on mental health by exploring the multifaceted impact of the cost of living crisis on the CF community, highlighting the increased strain on healthcare access, treatment, and overall well-being.
The Financial Burden of CF Care
For people living with CF, the journey is one of resilience and determination. CF is a complex condition requiring comprehensive and continuous care. From medications and therapies to regular healthcare appointments and hospitalisations, the financial toll on individuals and families can be substantial.
The cost of living pressures have exacerbated this burden, stretching household budgets to their limits and, in some cases, beyond. As the CEO of our organisation, it is heartbreaking to witness the additional strain placed on our community members, many of whom already navigate the high costs associated with managing CF.
CFCC, through its financial support programs, has continued to support members with financial and emergency support, and we responded to this need in 2023 by providing record levels of funding to our members across Victoria & New South Wales.
Healthcare Access: A Growing Challenge
Access to essential CF care and treatments is critical to those living with CF. On average, individuals with CF may take anywhere from 5 to 10 different types of medications daily (actual numbers depend on individual circumstances). Even with schemes like the Pharmaceutical Benefits Scheme (PBS) and Medicare, there are gaps in coverage that can leave families facing substantial costs, particularly for those who do not have access to a Health Care Card.
Adherence to CF treatment and medications is, for many, non-negotiable for maintaining health and preventing complications.
However, as the cost of living challenges continue, adhering to individual treatment plans becomes increasingly challenging for many. The costs associated with medications, special diets, and essential medical equipment can quickly become unmanageable, potentially leading to missed treatments or medication, further risking the health of those living with CF.
A report by the Centre of Health Economics Research and Evaluation in 2011 found that the average annual cost of managing CF was $22,366 (valued at $30,474 when adjusted to 2024 prices) per individual with CF (these costs decrease or increase depending on CF severity and age of the individual).
According to the study, the majority of these costs are incurred in the inpatient hospital sector (58%), followed by medications (29%), medical services (10%), complications (2%), and diagnostic tests (1%). Whilst this report is 13 years old, and it doesn’t take into account the impact of recent modulators, it does point to some of the additional burdens that people with CF and their families are exposed to.
In a recently published report by the Cystic Fibrosis Trust in the UK on the cost of living challenges, 69% of those surveyed felt they have less money compared to those around them due to either their own or their child’s CF, 80% felt their CF or caring responsibilities had an impact on their employment, and 1 in 3 missed a hospital appointment due to the cost.
Our Response
As an organisation dedicated to representing and supporting the CF community, we are more committed and passionate than ever to supporting our community through these challenging times.
We are intensifying our efforts to provide financial assistance in 2024 through the launch of the CF Relief Fund, meaning members now have greater flexibility on how their funding is allocated.
I encourage people in our community to get in contact with our Support Team if you are experiencing financial difficulties or are struggling to navigate external community and government services.
Our Benefits Navigation Service provides support to help with accessing resources, including Centrelink, NDIS, housing, the Disability Support Pension, Healthcare Card, Medicare, and many others.
We also remain steadfast in advocating for increased support from all levels of government so we can continue to ease the burden on individuals and families.
Moving Forward Together
The Australian spirit of mate ship and community is needed now more than ever. As we navigate the cost of living crisis, let us unite in support of our community, ensuring that all people living with CF have access to the care and support they need.
The path forward requires collective action. Together, we can build a future where the impact of the cost of living does not diminish the spirit or potential of anyone in the CF community.
If you need any support or guidance with any aspect of CF, please reach out to our Support Team at 1300 023 222 or support@cfcc.org.au.
Andre Carvalho, CEO Cystic Fibrosis Community Care