What’s in a name? So, so much.

We’ve all said it at some point: “I wish Type 1 and Type 2 had different names, I’m so sick of explaining the difference.” I recently received an email from a mother of a child with diabetes who has organized a petition to seek just that. Jamie Perez explained in her email that she filed the petition along with another mom of a Type 1 child “to more accurately reflect the nature of each disease. We tried to do this in a way that benefits both the T1 and T2 communities and helps protect our T1 children from dangers caused by the prevalent misconceptions..”

My immediate reaction was “it’s about time.” Since being diagnosed, I’ve been trying to explain Type 1 diabetes. What it is, why it happens, and why it’s different from Type 2 diabetes. I’ve been asked if I have the “bad” kind of diabetes (to which I always respond “remind me what the good one is again?” because we all know they ALL suck). I’ve been asked if I gave myself diabetes because I ate too much sugar (to which I always respond “that’s not how you get any kind of diabetes, it doesn’t work like that”). And I’ve spent way to many breaths explaining to people that no, this won’t go away if I just get myself to a treadmill (and that Type 2 is a progressive disease and not always related to exercise levels so the treadmill ain’t always the answer for Type 2 either). Basically, I’ve been explaining all kinds of diabetes (don’t forget our gestational friends and LADA either) for as long as I can remember and I’m tired of it. So I signed Jamie’s petition thinking that was the end of that.

Then I started reading about this whole debate and the unbelievable s&^%storm this has caused. The best arguments against the name change were well articulated and thought out, the worst came down calling it “useless”, “a waste of time,” and said that it unequivocally creates a divide between the Type 1 and Type 2 communities that drives us further apart when we should be working together. Several bloggers said that changing the name won’t help educate the media anyways, that it takes a long time and a lot of energy to do for something that might not ever happen, and that past attempts at name changes have not proven successful.

Wow. Although I think these arguments have merit, and many of them were well-written and articulate, I have to respectfully disagree. First off, I have never known the diabetes community to not attempt something because it “takes a long time and energy” and might not happen anyways. That’s the basic premise of searching for a cure, and we sure aren’t stopping that because “it takes a long time.” And if you think that this petition will distract from other diabetes efforts that are more important (i.e. research) remember that what’s being asked right now is ONE signature from you that takes two seconds to do, and two moms who are leading the charge on this. I can promise you they’re more passionate about finding a cure than anyone, because they’re watching their kids struggle with this disease every day. Petitioning for a name change isn’t taking away money from research organizations or public education programs. Yes, it could cost money down the line when names have to be replaced on educational materials, medical materials, and for public education but let’s not put the cart before the horse yet.

I also remember not that long ago when the d-community decided it would not longer refer to “diabetics” because the word defined us by our disease. It was practically insisted upon by bloggers and Twitter and everywhere else in writing that folks were referred to as “People with Diabetes”, or PWDs. I for one did not mind being referred to as a diabetic but I adopted the nomenclature because I respect the wishes of those it did bother and I want everyone to be represented. I understand that many people are not bothered by being lumped in to the same group, but some folks are and that’s something to think about. No one balked at PWD when that became the standard.

The tough one for me to understand is the idea that this is a waste of time. I will tell you what a waste of time is: a waste of time is pharmaceutical companies developing the exact same drug over and over again for Type 2 diabetes. Currently, there are no less than four DPP-IV inhibitors on the market (a Type 2 drug, all four work in the exact same way, they vary by dosage and way of clearance by the body) and NINE in development. Why do pharma companies keep developing the same drug over and over again? Because they go for the biggest money maker, not innovation. If you think pursuing a name change is a waste of time, imagine spending billions of dollars on a product that kinda helps a condition a little bit over and over again. What I’m saying is that there are much larger “wastes of time” than a petition for a name change. And people love to say that Type 1s can ride the coattails of Type 2 research to yield drugs or treatments that can help both. In the last 100 years, there have been two drugs indicated for Type 1 diabetes: insulin in 1921 and Symlin in 2005. That’s not a good track-record for coattail-riding. What if those billions of dollars spent on me-too drugs had been put into finding a cure? Or, since a cure won’t make a company any money, how about novel therapeutics that help people live with diabetes better. Anything but the same damn drug over and over again. I think the “waste of time” claim is better spent somewhere else. Educating the public about serious diseases is not a waste of time. The name change could be a wonderful platform to begin more broad-reaching and better educational programming about all kinds of diabetes.

Those are the reasons I’m for the name change. But there are two reasons I have a tough time with it, and think that it does need to be done very carefully. The first is that there are many kinds of diabetes already (T1, T2, gestational and LADA) and we may find out that there are even more as research continues. For this reason, I think it will be difficult to find the appropriate names for each disease, but as Jamie pointed out, this should be done by the medical community with careful attention to the fact that we might not know every kind of diabetes yet. And when you think about it, the fact that there are several different types that vary in epidemiology, treatment, and progression suggests we should have been giving them individual names in the first place. If we discover more types of diabetes as research continues, they deserve their own names as well.

The second part of this that is hard for me to adjust to is that I would never want a name change to make the Type 2 diabetes community feel that Type 1s don’t want to be associated with them. This has never been the case for me and I don’t think its the case for any Type 1 worth their salt. Type 2 is not some self-inflicted, shameful affliction for those of low self-control. It is a progressive, degenerative disease brought on by widely varying contributions of genetics and lifestyle, and disproportionately affecting those of lower socio-economic status and minority descent. It is a deeply complex disease deserving of it’s own name, public education, and research. I would think that the Type 2 community would want this complexity reflected in the name of their disease as well. I can’t tell you how many of my Type 2 friends go through the same stereotypes and explanations of how Type 2 works and why they have to take insulin or don’t have to take insulin yet or what that pill does. The bottom line is there needs to be more education about all kinds of diabetes. The last thing I want is a divide between these two communities, but I don’t believe in my heart that they are the same disease. My perfect world would contain the name change as well as a massive public education campaign that educates the world about both diseases, how they are treated, and why research for both of them are so incredibly important. I’m happy to start with signing the petition.

Alright. I said my piece. But I am wide open to debate and I think talking about this sensitive subject is exactly where we need to begin. Please, by all means, leave your feedback in the comments or send me a message directly at alexis@irunoninsulin.com.

If you agree with the name change, you can sign the petition here:

http://www.change.org/petitions/revise-names-of-type-1-2-diabetes-to-reflect-the-nature-of-each-disease

And if you’d like more information about why these two moms are working towards this change, check their website here: http://www.diabetestypeconfusion.org/

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Comments

Alexis, I respect you for posting what is quickly becoming an unpopular view in the diabetes community regarding the name-change or no-name-change. I’ll admit that I’ve been somewhat indifferent with regards to the name-change-topic, recognizing the merits of both sides and not leaning heavily either way. I haven’t signed either the “change” or the “no-change” petition, partly because I’m so easily swayed and partly because I got all kinds of junk emails last time I signed a Change.org petition. In the end, the name doesn’t mean that much to me — if people want to understand the difference between the types, they will; and if they don’t, they won’t. Will the short-term confusion brought about by a name-change that disturbs the status-quo lead to more long-term clarity? I just don’t know…

Scott thank you so much for your comment and please know respect is mutual with you and anyone else on the other side of this issue. My hope is that a name change could be a platform for more education across the board, but like you said, who knows? It could backfire and cause more confusion in the end but, I feel like the right thing to do is start that conversation, and maybe the name change is just the thing to get it going. Please know I respect and understand all sides of this issue. Scott thanks for taking the time to read and comment.

The waste of time argument ruffled my feathers a bit. There are people who state that a cure won’t occur in their life time, but does that mean we no longer fund or encourage the research?

I’ve seen the petitions come and go, but this one was different for me and actually made me stop and think “what if” We can’t know unless we try.

I totally agree with Scott on the part about people understanding. If they want to, they will. No change will help ignorance. The only change I will get behind is the one where we change it to a cured diseas.

Agree with outsiders and understanding. I don’t expect them to understand, mine was limited before I had know. But I do expect compassion without blame. I know of no other disease that carries the same stigma of diabetes. The finger pointing ‘it’s your fault’. This is what has to change, and maybe I’ve got my rose colored glasses on, but I do hope that this movement could help fix that.

Maybe we should start in the community with all the sugar references, my sweet kids, sugar free blogs and all that crap. And then maybe if the medical community will just GET IT themselves first before we trust them to come up with another confusing name- because THEY, the so called experts still confuse the 2….or 4 or however many flavors we have now. Sure its a simple name for a complex disease but hey- we do deserve something simple.

Sure we deserve something simple, but we also deserve something effective :)

Add to the list
Monogenic diabetes
Neonatal diabetes
Cystic fibrosis related diabetes
Tropical diabetes
Maybe there should be one for Wolfram Syndrome related diabetes
Each of the MODYs
Diabetes insipidus

I think, here in the UK anyway, that about 90% of people with diabetes have T2 and only 10% have T1, so inevitably people think T2 when they think diabetes, which causes so much misunderstanding. My daughter, now 14, has had T1 for nearly 9 years. Its SUCH a difficult condition to manage (obviously you know that, but most of course don’t) and SO different from T2 in so many ways, including causes & treatment, so why have the same name??? I would love for there to be different names. Any suggestions?

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