We are really pleased to be part of the campaign for the name change of Diabetes Insipidus. The new name is Arginine Vasopressin Deficiency. In this blog we will tell you more about the reasons for this new name and what this means for you.

There has been confusion between sugar diabetes (also known as diabetes mellitus) and diabetes insipidus for a long time, which has been detrimental to patient care. Many pituitary patients will have their own experiences of having their fingers pricked when telling a medical professional that they have diabetes insipidus. The death of Kane Gorny brought the understanding for the need of a new name to the forefront when he was refused his desmopressin during a routine hip operation.

After a long campaign, a working group with endocrinologists, patient representatives, and patient support groups, a new name was decided on – Arginine Vasopressin Deficiency or AVP-D for short. This is a global change.

Why the new name

The new name decided by the working group is AVP-Deficiency (Cranial DI) and AVP-Resistance (Nephrogenic DI). This name fits in with the process of naming other medical conditions, and was agreed upon by countries across the globe.

“Like naming a child, everyone has their favourite, unconscious bias is at play, and nothing in life is perfect. The sole ambition was always to remove the word Diabetes. Names suggested and discarded along the way have included Pituitary Insipidus (etymologically incorrect, and not all patients have pituitary disease), ADH Deficiency (abbreviates to ADHD), and Vasopressin Deficiency (abbreviates to VD – even worse!)”

Miles Levy, Consultant Endocrinology at Leicester University Hospital

What this means for patients

Over the next few years, it is likely that both names will be used whilst clinicians and patients get used to the change. It is expected that diabetes insipidus will cease to used, making way for the new name, and calling it diabetes insipidus will be a distant memory.

“We are so pleased to have been part of the campaign to change the name of diabetes insipidus. The new name should improve endocrine patient care and stop DI being confused with sugar diabetes. Thank you to everyone in the working group for bringing this positive change about.”

Lottie Storey, Communications Officer at The Pituitary Foundation

What the foundation will be doing

At The Pituitary Foundation, we will be updating our website and other resources over several months to reflect the name change. We will also be sharing lots of information about the name change over the coming months to raise awareness about it.

We want to thank everyone who was part of the team to change the name, especially our trustee, Deborah Cooper, and members of our medical committee, Prof John Wass, Dr Miles Levy, and Prof John Newell-Price.