A brand-new Australian study has found that the number of people living with diabetes in Australia might be far higher than what the government statistics show. Not surprising!
It suggests that close to 35% more people may be living with diabetes than what’s currently recorded in our national diabetes system.
Why this matters
In Australia, we rely heavily on the National Diabetes Services Scheme (NDSS) to keep track of who has diabetes. It’s the primary place the national diabetes statistics come from.
When you register with the NDSS, you can access things like subsidised test strips, needles, and diabetes education—though you can’t really trust or rely on the education the NDSS provides (more on that below).
But here’s the catch: you have to register through your doctor or health professional, and not everyone does—especially if they’re managing their diabetes through diet or just taking metformin.
So the big question is: how many people are actually being missed?
A better way to track the real numbers
Researchers from the University of Sydney wanted to find out. They looked at information from over 266,000 Australians aged 45 and over, linking together hospital records, Medicare claims, and prescription data. Then they created an algorithm (a fancy word for a set of rules) to figure out who was very likely to have diabetes.
And the results were revealing.
While the NDSS had about 36,000 people registered with diabetes in this group, the algorithm found nearly 54,000 people with strong signs of diabetes. That means nearly one in three people with diabetes weren’t on the NDSS registry.
Diabetes estimates in Australia
The NDSS publishes new statistics every quarter.
As per the Jan-Mar report there are 1,318,392 people living with type 2 diabetes. Adding 35% makes this statistic 1,779,829.
Previous estimates have also shown much higher rates than reported by the NDSS, including the fact that about 20% of Australians living with undiagnosed diabetes, equating to another 4.8 to 5.3 million people.
Who’s falling through the cracks?
According to this new study, the people who were missed shared some common traits. They were more likely to be:
- Over the age of 75
- Living in rural or remote areas
- From culturally and linguistically diverse backgrounds
- Living with other health issues like high blood pressure, cholesterol, or obesity
What about prediabetes?
The study didn’t focus directly on prediabetes, but here’s something interesting: a lot of people who were missed by the registry were only having occasional HbA1c blood tests or taking metformin.
That might include people who are in the early stages—undiagnosed or managing prediabetes quietly.
What this means for you
Probably nothing.
If you’re living with type 2 diabetes or prediabetes, and you’re not registered with the NDSS, it just means you’re not included in the national statistics and you might not have access to subsidised test strips, needles, and diabetes education.
That said, having your name on the books helps ensure your needs are seen—especially when it comes to research funding and health services in your area. It also means better data to help prevent diabetes in others. Because if we don’t count everyone, we don’t get the full picture.
But, when it comes to national support programs, the NDSS is hopeless!
Diabetes Australia administer the NDSS and their education programs are not backed by science and are very outdated!
Some of their education materials are even dangerous to people living with diabetes—a carbohydrate recommendation of 45-60g per meal—that is harmful and will keep your blood sugar and A1c levels high, high, high!!
So, you wouldn’t want to put any confidence in what the NDSS tell you in terms of diabetes management!
And the thing is, people might just choose NOT to register with the NDSS, as they prefer to stay out of the system, and that’s perfectly fine too—you could even be better off doing so, it’s your choice.
Final thought
This study confirms what many people already suspected—the true number of Australians living with diabetes is far higher than the official stats suggest. While everyone seems to think that’s concerning, maybe it’s not such a bad thing.
If you’re managing your health on your own terms, outside a flawed system, you’re not alone. And your progress matters—even if no one’s counting it!
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