Reigniting the Renaming Diabetes Debate

There's been a longstanding discussion among patient advocates over the need for new, more descriptive names that would better differentiate between type 1 and type 2 diabetes.

Every so often, the debate hits a fever pitch. New online petitions pop up, calling for change that supporters believe would eliminate confusion and better distinguish the actual realities of each health condition.

Most recently the issue came up in response to WNYC Public Radio's Sugarland show, a pretty darn amazing investigative series highlighting the diabetes epidemic, that's covered the skyrocketing price of insulin. WNYC's illustrative journalism got it right in distinguishing between T1 and T2, but it also sparked comments about the need to revise the names. Our podcasting D-Mom friend Stacey Simms picked up on this in her Diabetes Connections podcast, and it’s led to a wave of fresh debate over the diabetes moniker.

Clearly, this isn’t the first and won’t be the last time this issue comes up.

'Rebranding' diabetes types

Back in 2013, two passionate D-moms enlisted the support of some renown researchers in their call for a "rebranding" of disease types, and created an online petition that gathered 16,621 signatures before it closed.

The petition asked decision-makers at the ADA (American Diabetes Association), NIH (National Institutes of Health) and IDF (International Diabetes Federation) to "revise the names of both type 1 and type 2 diabetes to more accurately reflect the nature of each disease." They stated clearly that "the medical community should determine appropriate names, as they are most qualified; but just as an example, the unique nature of type 1 would be reflected in a name such as Autoimmune Beta Cell Apoptosis (BCA) Diabetes and the unique nature of type 2 in a name such as Insulin Resistance Diabetes (IRD)."

{Enter head-shaking over the complexity of those proposed names.}

So began the whole kerfuffle over whether new names will only serve to deepen the divide in our D-community, and confuse the heck out of the general public that's already confused over diabetes types -- or whether they give a hoot anyway, and this name-change is just a big waste of efforts when we could / should be advocating for more meaningful changes that actually help people live better with diabetes.

That was 5 years ago. And here we are again, having the same conversation.

 

Those in favor claim:

• We've been tolerating these'messy' (or worse, meaningless) titles for the two types of diabetes for too long, and it's high time for some clarity.
• This is a great chance to raise awareness, and educate the public and mainstream media about the real origins and
  parameters of diabetes types.
• "Hey, we're not biased against type 2; we just want people to know that our type 1 kids have a very different condition than that one." (I'm paraphrasing here)

Those against claim:

• No matter how you slice it, this will create an ever-greater divide between the diabetes types, impeding our
  ability to work together to advocate for a common cause. This can also cause a lot of hurt, because (again paraphrasing) T1s would be "throwing T2s under the bus" and creating even more negative stigma than exists now.
• Pushing for a name change is a giant waste of time, because the media and public barely understand the current
  names, and won't remember or understand the new names any better. Yep, media get it wrong often, and new names aren't going to change that.
• As many D-peeps and advocates and "experts" have pointed out over the years, the two types are more similar than not, and in the long run, "any name you assign today might be proven to be a misnomer with future research findings."

I'm preparing for stone throwing and pitchforks in saying so: but I have to agree that a push for new names would be a giant uphill battle, and probably one not worth fighting...

Admittedly, I felt differently about this issue earlier in my diabetes life. But after living with T1D for more than three decades, and having constantly researched it and written about it and talked about it with dozens upon dozens of people in and out of the pharma industry, healthcare field, and patient sphere, I can now only agree that we have "bigger fish to fry" -- and that any attempt at a sweeping national or international name change is doomed to fizzle.

Reasons for Not Changing Diabetes Names

Here are the points behind my thinking (you may agree, or throw virtual rocks):

* We ought to learn from diabetes name-change history, which isn't pretty. Let's start by examining our own history here. It began back in 1979, when jettisoning the terms "juvenile onset" and "adult onset" was proposed by an international task force sponsored by the NIH's National Diabetes Data Group. The ADA, Australian Diabetes Society, British Diabetic Association, and the European Association for the Study of Diabetes (EASD) signed on. With provisos, the World Health Organization eventually signed on as well (although they went farther and actually "created" five types of diabetes, of which only the first two had numbers). 

Between 1979 and 1995, we got the terms insulin-dependent diabetes mellitus type 1 (IDDM) and non-insulin-dependent diabetes mellitus type 2 (NIDDM), which were treatment-based but confusing nonetheless. During the 1990s, another international Expert Committee sponsored by the ADA re-organized the whole scheme and gave us the numerical terms of type 1 and type 2 that we use today, although they specified using Arabic numerals, rather than the medically traditional Roman Numerals, supposedly to eliminate even more confusion (?).

Of course, none of this halted the debate, which gathers steam every few years. The confusion continues even in the medical profession; we’ve reported over the past decade that those working in diabetes cannot agree on how many different types of diabetes there really are and what they should be called.

Also, back in 2007, Medtronic ran a study about public D-awareness and found that 80% of the 2,436 American adults surveyed could not distinguish between type 1 and type 2 -- and 36% thought there was either a "type 3 or 4" diabetes too! (among other misconceptions)

Clearly all this jockeying for better names hasn't helped much for the last 30+ years.

* We're still explaining... Just ask the many wise elders in our community who've seen these renaming initiatives come and go -- from "juvenile" and "adult" to insulin dependent diabetes mellitus (IDDM) and non-insulin dependent mellitus (NIDDM) and eventually to type 1 and 2, which seemed "generic and symbolic" enough to hopefully clarify things. Yet those of us living with diabetes are still explaining... and explaining... and explaining! Only now the explanations have gotten that much more complicated, because we have to say, "I have what used to be called X and then was referred to as Y and/or Z, because... (insert lengthy explanation of the old and new labels)."

Contrary to what some commenters have claimed, I don't think this is a "sour puss" POV or an indication that someone has "given up." Rather, I think that years of experience bring perspective on what is realistic. Don't forget that folks used to run around saying, "They'll be a cure by the year XXXX." Not realistic, and neither is the expectation that a name change is going to revolutionize public health literacy on diabetes.

* Building consensus is a monumental task, and takes a loooong time. Think about about the Blue Circle for a moment. For years we've been trying to get the major national advocacy groups to get behind this simple, universal symbol for diabetes awareness. At first they complained they didn't like it; now they're just dragging their feet as they cling to their own individual logo symbols. Now imagine trying to get the whole U.S. Medical Establishment to agree on new names for the two major types of diabetes. And then the International Medical Establishment... This is going to be a long and heated battle, People.

* Re-educate the mainstream media? I think not. Are you aware of the chaotic state that journalism is in, as a business and a profession at the moment? Massive cutbacks mean that newsrooms are working with less staff that is more inexperienced and more overworked than ever. Sending out a bunch of materials demanding that reporters forget the "old" names for diabetes types and start using new labels will accomplish nothing. In fact, I can just imagine the erroneous assumptions that will pop up as hapless reporters stumble over the "reinvention" of diabetes.

* There is a saying that "the road to hell is paved with good intentions." What I see most often are passionate D-parents who desperately want to do something to help their children now. There are also those adults with diabetes, who just can't stand the stereotypes and misinformation they encounter. They want to stop all the dumb, hurtful and negative comments coming at them and their families, and create a future in which diabetes types are crystal clear and those who are pancreatically-challenged won't need to suffer discrimination or spend their lives explaining their illness. While this is noble, and it's something we all hope for, I honestly don't think it's possible.

Let's face it: what do we all know about Crohn's disease or Huntington's disease if we don't have a family member affected? We outsiders don't know much about their community concerns... And if these diseases present with different types (for all I know they do), then giving those types new scientific titles like "Autoimmune Beta Cell Apoptosis (BCA) Diabetes" or "Insulin Resistance Diabetes (IRD)" is not going to help me understand anything better, unless I have the personal passion to get involved, of course.

Obviously, diabetes is not a rare disease and IS a prominent public health problem. But I just don't see the value of investing our efforts, time and money (yes, renaming incurs costs) in creating descriptive, scientific names for a cause we're trying to make easier for the public to embrace, rather than more difficult.

* A low priority, at best. In our opinion, renaming one or both types of diabetes would do nothing to change the status quo. Rather, it would bring mostly blank stares and head-scratches, calling for the followup explanation of, "It used to be..." And that would just bring us back to where we are now: Confusion Central.

So yes, we respect those who are passionate about this topic. But no, we don't happen to agree that this something our Diabetes Community should (or even could, if we wanted to) unite over. There are much more important issues to prioritize, such as making meaningful change on affordability and access for all to essential diabetes treatments and new tools.

Interestingly, each time these calls for name changes pop up, are are responsive calls for unity ricocheting around the D-Community. A few years back when this topic arose, fellow T1 blogger Scott Strange suggested the following as a mantra we could all embrace:

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I want diabetes advocates worldwide to pledge:

To have empathy, no matter the type.

To advocate for those with this condition, whatever the type.

To educate about diabetes, regardless of the type.

To correct misinformation and stereotypes that are so common in society and the media.

To recognize the hurt that misinformation and stereotypes cause people everyday. Hurt that is both emotional and physical.

To help people, who for whatever reason are affected by these stereotypes on a daily basis. People who just happen to live next door, who just happen to come to your family picnics, who happen to be among those you care for. People you've never met, people with families and loved ones.

People who happen to have diabetes.

Because we are all people.

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Well said, my Friend.

110% agreed.