Misclassified and Often Overlooked

Clinically, type 5 diabetes refers to severe insulin-deficient diabetes (SIDD)— marked by elevated blood glucose levels due to defective pancreatic beta cells that fail to produce adequate insulin. Type 5 diabetes arises from long-term undernutrition, especially during key developmental periods in childhood and adolescence. This leads to impaired pancreatic development, setting it apart as a distinct clinical entity. This condition is often hereditary, with a 50% chance of transmission if a parent carries the gene.

Although this form of diabetes has been observed since the mid-20th century, it has often been misclassified and largely overlooked in global health discussions. Earlier theories attributed the condition to insulin resistance, but recent research—led in large part by the Type 5 Diabetes Working Group co-chaired by Dr. Meredith Hawkins, endocrinologist and founding director of the Global Diabetes Institute at Albert Einstein College of Medicine in New York and Dr. Nihal Thomas, professor of endocrinology at Christian Medical College (CMC) in Vellore, India. —has established its unique metabolic profile.

Symptoms and Diagnosis

Individuals with Type 5 diabetes often present with symptoms similar to other forms of diabetes, such as increased thirst and urination, unexplained weight loss, fatigue, blurred vision and slow-healing wounds. Most are young and thin, so they are often misclassified as having type 1 diabetes. But based on clinical experience, treating them with insulin did not help and sometimes led to dangerously low blood glucose levels.

Type 5 diabetes is different than type 1 or type 2. That’s because it is caused by malnutrition, which leads to low insulin production due to pancreatic damage. This leaves the body unable to make enough insulin to effectively manage blood glucose.  It typically appears in early teens or 20s, especially in young men in Asia and Africa with a body mass index (BMI) of 19.

Diagnosis involves a combination of blood tests to assess insulin levels and glucose metabolism, along with genetic testing to identify mutations in genes like TCF2 or HNF1B, which are associated with this form of diabetes.

Treatment and Management

People with type 5 diabetes are insulin-deficient but not insulin-resistant, meaning many can be treated with oral medications rather than insulin injections. 

The emergence of this classification brings hope for more cost-effective and tailored care, and strengthens efforts to address the growing burden of diabetes. 

Currently, there is no standardized treatment for Type 5 diabetes. Management strategies focus on nutritional interventions, including:

• High-protein, low-carbohydrate diet
• Micronutrient supplementation
• Careful monitoring of insulin therapy, as inappropriate insulin administration can be harmful.

Identifying if someone has type 5 (and not type 1 or type 2), is particularly important in low-resource settings, where injectable insulin may be less accessible or affordable.

The IDF’s recognition of Type 5 diabetes aims to raise awareness and promote research into effective treatments, especially in regions where the condition is prevalent.

Global Impact and Future Directions

The formal acknowledgment of Type 5 diabetes by the IDF is a significant step toward addressing a long-neglected health issue. With millions affected, particularly in underdeveloped regions, this recognition is expected to:

• Improve diagnostic accuracy

• Facilitate the development of targeted treatment protocols
• Encourage international collaboration in research and healthcare initiatives .

As the global medical community focuses on Type 5 diabetes, there is hope for better management and improved quality of life for those affected by this condition.

For more information on Type 5 diabetes, you can refer to the IDF’s announcement: idf.org.