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. The debate has hit a climax this week, in the wake of a new online petition issued by two passionate D-Moms, who’ve gathered more than 2,800 signatures to date and even enlisted the support of some renown researchers in their call for a “rebranding” of disease types.
The petition asks 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 state 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).”
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.
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 (see T2 blogger Bob Pederson’s heartfelt post on the hurt this can cause)
- 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
- as T1 blogger Lee Ann Thill points out, the two types are more similar than not, and “a name you assign today might be proven to be a misnomer with future research findings”
I’m preparing for stone throwing and pitchforks over here, but I have to agree with Lee Ann’s very measured assessment that a push for new names is going to be a giant uphill battle, and probably one not worth fighting…
Like Lee Ann, I might have felt differently about this issue earlier in my diabetes life. But now, approaching my 10-year anniversary with this illness, 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 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.
Here are the points behind my thinking (you may agree, or throw virtual rocks):
* We need to listen to the veterans in our community. They are our wise elders, who’ve lived with type 1 for decades and seen many initiatives come and go. Lee Ann, with 34 years of diabetes behind her, points out that name changes have been made before: 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” and would hopefully clarify things. Yet she’s still explaining… and explaining… and explaining! Only now the explanations have gotten that much more complicated, because she has 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 type 1 — or whatever label you give it).”
Contrary to some commenters on her site, I don’t think that Lee Ann is simply a sour puss or has “given up”; I think that the years have given her 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. This is going to be a long and heated battle, People.
* We ought to learn from diabetes name-change history, which isn’t pretty. 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, as we reported last year about how even 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.
* 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 are a couple of passionate D-parents who desperately want to do something to help their children now; they want to stop all the dumb, hurtful and negative comments coming at their families, and create a future in which diabetes types are crystal clear and their children won’t need to suffer discrimination or spend their lives explaining their illness. While this is noble, I honestly don’t think that 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? (April is Huntington’s awareness month, btw, and they too are storming Capitol Hill and struggling to educate the media). 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 really take the time to read more and learn about these conditions.
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.
Meanwhile, there’s a renewed call for unity ricocheting around the D-Community. T1 blogger Scott Strange suggests:
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.
Well said, my Friend.