The Hon Greg Hunt, Minister for Health, announced 15 November 2021 designated diabetes funding of $100 million, over four years, to expand free access to glucose-monitoring technology through the National Diabetes Support Scheme (NDSS) to help children, pregnant women, and more adults with type 1 diabetes manage their condition.
The announcement also introduced an immediate change to the NDSS, which saw the inclusion of children with cystic fibrosis (up to the age of 21 years) who require insulin to have access to this scheme. People with type 1 diabetes aged 21 years or over, who have concessional status and a high clinical need, were also included in this change.
Cystic fibrosis related diabetes (CFRD) is classified as “other” and not specifically type 1 or type 2. Therefore, what should have been a time of celebration for our adult members living with CFRD, quickly turned into a nightmare, as they were ineligible for inclusion.
People living with CFRD are not cured upon turning 21 yet their access to live-saving NDSS support ends. CFRD affects 30% of adults living with cystic fibrosis. Approximately 500 Australians with CFRD are not eligible for the free glucose monitor and so it is very hard for them to effectively track and improve diabetic control and mitigate long-term diabetic complications. The estimated cost is about $2,200 per year and it is a valuable tool for those with poor diabetic control or hypoglycaemic episodes.
The CF community has been waiting for three years for this change and must be made to wait no longer, change is needed now. The Australian Cystic Fibrosis Data Registry reports that 85% of members are pancreatic insufficient and of this cohort, almost half suffer from CFRD as cystic fibrosis co-morbidity. Given that only 3500 Australians are living with cystic fibrosis and many of the modulator drugs your government has listed on the PBS on our behalf address many of the side effects of CFRD, the financial implication of extending the NDSS to include people with CFRD would not be significant, yet the lives saved would be.
Do you live with CFRD? If so, then we need your support.
CFCC is collaborating with CF Queensland (who initiated this campaign) and we are asking the cystic fibrosis community to write letter of support seeking for all people living with CFRD to be included in the NDSS today.
Please email your letters to enquiries@cfcc.org.au and please address your letters to the Health Minister, The Hon Mark Butler MP.
Thank you in advance for your support.
Cystic Fibrosis Community Care and
Cystic Fibrosis Queensland