In a special op‑ed, patient leader Petrina Fraccaro argues that Australia’s NDSS unfairly cuts off adults with cystic fibrosis–related diabetes from continuous glucose monitoring at age 21, despite CFRD’s Type‑1‑like risks and the urgent need.
In Australia, we pride ourselves on a health system grounded in fairness. But when it comes to access to continuous glucose monitoring (CGM), that principle is not being applied equally, and people living with cystic fibrosis–related diabetes (CFRD) are paying the price.
At first glance, the policy logic seems sound.
CGM access through the National Diabetes Services Scheme (NDSS) prioritises people with Type 1 Diabetes, recognising the complexity of managing blood glucose without insulin production. Advocacy efforts have also rightly focused on expanding recognition of Type 3c Diabetes, a category that includes diabetes caused by pancreatic damage.
But here’s the problem. CFRD doesn’t fit neatly into either box. And treating it as though it does is where the system breaks down.
CFRD is a complication of Cystic Fibrosis.
Over time, the pancreas becomes damaged, reducing insulin production. On paper, this aligns with type 3c diabetes. But the way CFRD behaves and must be managed looks far more like type 1 diabetes.
People with CFRD often require insulin.
Their blood glucose levels can fluctuate rapidly. Infection, inflammation and medications like corticosteroids can destabilise control overnight. And critically, poor glucose control doesn’t just lead to long-term complications, it has an immediate and direct impact on lung function, nutrition and survival.
This is not theoretical. This is daily life.
Yet, despite this clinical reality, adults with CFRD are largely excluded from routine access to CGM.
Children and young people under 21 with CFRD are recognised as having a condition 'very similar to type 1 diabetes' and can access CGM through the NDSS. But the moment they turn 21, that recognition disappears. Their condition does not change, but their access does.
This is what we call the 'age 21 cliff', and it is as illogical as it is inequitable.
The current workaround is a case-by-case 'exceptional circumstances' pathway.
To be clear, a condition that is predictable, progressive and well-evidenced should not require exceptional pleading to access standard care. This approach creates an administrative burden for clinicians, delays for patients, and inconsistent outcomes.
So why hasn’t this been fixed?
Because the policy framework relies too heavily on classification and not enough on clinical reality.
Advocating for type 3c diabetes is important, but it is not enough for CFRD. Type 3c is a broad, heterogeneous category encompassing conditions ranging from pancreatitis to pancreatic cancer. The variability within this group dilutes the urgency of any one condition.
CFRD is different. It is lifelong. It is progressive. It sits within a complex, multi-system disease where the margin for error is small and the consequences are significant.
We have the data. We have national registry insights. We have a clinical consensus. And we have a technology, CGM, that is already transforming outcomes for people with other forms of diabetes.
What we do not have is a policy framework that has kept pace.
This is not about creating a new entitlement. It is about correcting a misalignment.
The solution is straightforward. Explicitly recognise CFRD within NDSS eligibility for CGM across all age groups or extend the 'type 1-like' category beyond childhood. Either approach would immediately address the gap without adding unnecessary complexity to the system.
More importantly, it would align policy with practice and fairness with need.
At a time when we are talking about preventive health, reducing hospital admissions, and improving quality of life, this reform makes both clinical and economic sense.
People living with cystic fibrosis already carry a heavy treatment burden, hours of therapy every day just to stay well. Access to CGM is not a convenience. It is a tool that supports stability, independence and, ultimately, better health outcomes.
We can and should do better. Because no one should lose access to essential care simply because they turned 21.
By Petrina Fraccaro, CEO and Managing Director, Cystic Fibrosis QLD, Cystic Fibrosis NT, Cystic Fibrosis ACT.
