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Tip of the Iceberg: Are We Missing Undiagnosed MODY Patients?
Glen
min read
New research published in the Internal Medicine Journal (IMJ) has uncovered critical evidence suggesting thousands of Australians may be receiving unnecessary insulin treatment due to undiagnosed Maturity Onset Diabetes of the Young (MODY).
MODY, the most common genetic form of diabetes, often masquerades as Type 1 or Type 2 diabetes, leading to inappropriate and potentially harmful insulin therapies. Despite accounting for an estimated 2–3% of all diabetes cases—likely more due to widespread under-diagnosis—many patients are subjected to lifelong insulin regimens they don’t actually need.
Diabetes experts are now calling for urgent action: increase MODY testing, raise clinician awareness, and update clinical guidelines to reduce misdiagnosis and prevent low-value care.
According to Associate Professor Kathy Wu, chief principal investigator of the landmark study:
“Our preliminary findings suggest there are more people living with undiagnosed MODY than previously believed. Identifying these individuals early can transform their quality of life—and our health system.”
Key findings from the study:
One trial participant, initially diagnosed with Type 1 diabetes, reflected:
“Learning I could have avoided approximately 28,000 insulin injections and 30,000 blood glucose checks over 11 years was overwhelming.”
This revelation underscores the profound personal and emotional burden carried by misdiagnosed individuals.
Currently, MODY diagnosis requires molecular genetic testing, a costly procedure not covered by Medicare. However, Professor Wu emphasized that broadening access could ultimately save costs for the healthcare system while sparing patients from the risks of unnecessary treatments.
Importantly, reallocating insulin resources to those who genuinely require it could improve overall healthcare efficiency.
While no national guidelines currently exist for MODY testing, the study’s inclusion criteria may serve as a foundation for future clinical protocols. With stronger awareness and public funding, the hope is to mainstream MODY testing and significantly enhance outcomes for patients living with diabetes.
Media Contact:
Catalina Casar
📞 0421 547 759
📧 catalina.casar@essentialmedia.com.au
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