Part 1 of a series (because I have a lot to say about it).

When I first heard the return of rumblings to call for a diabetes name change, I rolled my eyes and thought ‘here we go again.” I couldn’t even tell you how often I’ve seen this rally cry resurface since we were first inducted into this club. I’ve glanced at those attempts as they came to my attention, but often they seemed anger induced, not my style. Upon the release of this new one, I read (…and read, and read…warning it’s long), I actually found myself pondering the points made by the authors. I found myself spending lots of time thinking and wondering what if they’re right, what if it is the vagueness of a number that is assisting to fuel the ignorance that all people with diabetes face in society? What if the Expert Committee did our community a disservice at the time they changed the classification of the subgroups to numbers? What if we actually had clarity?
Clarity. Freedom from indistinctness or ambiguity.

Ambiguity. Uncertainty or inexactness of meaning.

Before the Expert Committee met in 1979, Diabetes was classified as either Juvenile or Adult Onset. These labels were obviously no good, adults are being diagnosed with T1 and children are being diagnosed with T2. A demographic label is not appropriate for a disease label. So they changed it based on treatment to Insulin-Dependent Diabetes Mellitus (IDDM) and Non-Insulin-Dependent Diabetes Mellitus (NIDDM).

Oops, that doesn’t work either. They couldn’t divide Diabetes based on treatment because they discovered that some of those classified as NIDDM required insulin or perhaps they started with insulin but were able to switch to oral medication. This just added to the confusion.

So the Expert Committee met again in 1995. And in the introduction of their report they state:

The impetus for the classification and diagnosis scheme proposed then holds true today. That is,

“the growth of knowledge regarding the etiology and pathogenesis of diabetes has led many individuals and groups in the diabetes community to express the need for a revision of the nomenclature, diagnostic criteria, and classification of diabetes. As a consequence, it was deemed essential to develop an appropriate, uniform terminology and a functional, working classification of diabetes that reflects the current knowledge about the disease. “

Just in case it was missed, a revision was “deemed essential” for “appropriate, uniform terminology and a functional, working classification.”

So they eliminated IDDM and NIDDM because the “terms were confusing.”

And they assigned numbers.

Type 1 “encompasses the vast majority of cases that are primarily due to pancreatic islet β-cell destruction and that are prone to ketoacidosis.”

Type 2 “includes the most prevalent form of diabetes, which results from insulin resistance with an insulin secretory defect.”

After all that time, collaborating and circulating drafts, knowing the primary cause of each and they choose to designate a number.

And this is where I believe that the Expert Committee failed the Diabetes Community.

So much for clarity.