Like all of you, my personal ambition is to make sure that everyone with cystic fibrosis can live their life to the fullest. The teams at Cystic Fibrosis Queensland and Trusted Care wants to ensure that the cystic fibrosis community receives the best care, the right treatments, and the right support for the entirety of their lives; and I hold a growing concern about the lack of equitable access to the existing Government funded services and support available, as I believe our members are not receiving their fair share.  

Many of you have shared your experience with myself and my team about how hard it can be to apply for the National Disability Insurance Scheme (NDIS) access and of course the hardship you face when the National Diabetes Support Scheme (NDSS) cuts out upon turning 21. 

Despite advances in treatment, cystic fibrosis remains a long-term condition with no cure. The additional financial costs of living with cystic fibrosis can have an impact on day-to-day finances and many people rely on the extra support they can access from the Government in addition to the benevolent subsidies provided by our charity. 

In addition, people with cystic fibrosis are encouraged to work, be active, and take exercise as part of their overall treatment plan, but this is often held against them when they are assessed. The system does not encourage people to be as active and well as possible.  

It is not unreasonable to expect that people should not have to deteriorate – physically and mentally – to get the financial support they need to keep them well. 

My call to Government to address the inequity of qualification lists for access to the NDIS was heard. People are now assessed, and judgement is made, upon a complete understanding of an individual’s situation and predicament. While there remains an education piece, currently missing, to assist the assessors to understand the myriad of complications experienced by people living with cystic fibrosis, the fact that people living with cystic fibrosis can at least apply for NDIS support is an achievement.  

Success with access to the NDSS for people with cystic fibrosis related diabetes (CFRD) remains high on my Christmas wish list and I remain relentless in my determination that this benefit should work for people with progressive chronic illness.  

My wish is for the Federal Government to take heed of the calls being made for people with cystic fibrosis and to create an inclusive, equitable disability sector for our members. I also urge the government to acknowledge the disproportionate effect the pandemic has had on those with a life-long chronic illness and given the number of people living with cystic fibrosis as a percentage of the disability sector, I implore the Government to make these changes at little cost but with huge impact on those affected. 

The new year will see Cystic Fibrosis Queensland continue with its advocacy for access to the NDIS and the NDSS and we will not stop until this inequity has been addressed. If you would like to work with us as a community representative and join our cause, please email Vicki Elson-Green, 

Stay safe and go well over the festive season everyone, kind regards 

Petrina Fraccaro 

CEO Cystic Fibrosis Queensland and Trusted Care