On this World Diabetes Day 2020, I’ve decided to launch a new resource for the diabetes community that I’ve been working on for about a year: The “Type A” Diabetic Manifesto.
Because this is such a thoughtful and insightful community, @Chris suggested that I post various chapters here as key-offs for discussions and debate. I think that’s a great idea. So, I’m starting with the first “big idea” - should we even call this thing diabetes?
Here are some highlights from the chapter on this topic:
A troubling aspect of the current lexicon is that we have no common language to discern between people who have the underlying conditions that create glucose toxicity and people who are experiencing glucose toxicity.
Diabetes is an ugly, outdated term that does a poor job describing a variety of underlying conditions and should be retired.
People get depressed - they are diagnosed with depression. People have high cholesterol, and they are diagnosed as people with high cholesterol. Why, pray tell, must diabetes be so different from these other medical conditions? Why must we brand it? It would be one thing if it were named after the founder, but it’s not. It’s named after an old greek term meaning, essentially, pees-a-lot.
Is the term diabetes overstaying the its terminology welcome? Should we retire the term diabetes? Should we even have diabetic “types?”
If you’re interested in reading the entire chapter that focuses on these questions, please visit it here.
I am aware this is a provocative question and topic. Which is why I’m very open to constructive discussion and debate.
After reading this chapter in your manifesto, I went straight into the next chapter as well. While I agree that the term seems outdated, I can’t imagine referring to myself as a P0/R5, or having it tattooed on me like I do ‘Type 1 diabetic’.
It’s difficult enough when the general public make assumptions about what type we are based on our age or body size, without confusing them with a broader range of terminology.
A few years ago, Diabetes Australia came up with new guidelines for how diabetes and the different types should be referred to in government departments and the state health departments and the media. The latter because the types (T1, T2, GD, LADA etc) are never referenced when reporting stories or mentioned in reports or articles. Since the guidelines were introduced, I have not seen any differences in any of those reports, or how my state’s health department refers to me. Included in those guidelines, was also that we shouldn’t be called a type 1 diabetic, but a person with type 1 diabetes. Obviously, that doesn’t happen either.
Perhaps, if we used our diagnoses like gender pronouns there could be a change in how health professionals or the general public refer to us, but I still think that could lead to more problems… “Hi I’m Shauna, she/her, P0/R5, plus other autoimmune conditions”.
As I get older, my ‘pronouns’ would likely expand.
Here’s the link to that language statement, if you’re interested. [www.diabetesaustralia.com.au › …PDF A new language for diabetes - Diabetes Australia](https://www.diabetesaustralia.com.au › …PDF A new language for diabetes - Diabetes Australia)
I think your manifesto is a really interesting idea, and I’m going to read the whole thing, but wanted to share my initial thoughts with you about it and also acknowledge that my thoughts could also change. I’ll be looking out for further posts from you!
We see a lot of these nomenclature issues come up in psychiatry, which is my professional field. In the end, often nothing happens, especially when a system of the complexity described is proposed, in large part because too many clinicians tend to not want to adopt it.
You’d also have to do a ton more research to determine norms and cut-off levels to create an appropriate, clear cut, and reliable way to rate patients on the system, so that Clinician A diagnoses a patient the same way (usually) that Clinician B would. How do you rate insulin production? Do you just assume for a longtime T1 like myself that I’m a P0? Or do I now need to go through some testing for that? What about insulin resistance—I suspect I have some and thus take metformin ER which seems useful, though my TDD was never very high even beforehand, so how does my resistance compare on a scale to someone who has to take vastly more insulin despite similar body size, even if I think my resistance went up to relative to my norm of initially always having a relatively quite low TDD? So how is that objectively quantified? You need studies and expert consensus to develop metrics and assessment protocols, both so the diagnostic terms can be used for clinical practice and for clinical research purposes.
Also, because clinicians and insurance companies want labels, not more complex systems, in the end they will just end up translating P/R ratings back to diagnoses—so what kind of diabetic is that? So though I generally agree with the descriptive utility of the proposed paradigm, I think it would take a lot more time and work to get there, and I predict mixed enthusiasm at best from the clinicians who would need to use it. You might have more success framing it as a proposed adjunctive diagnostic qualifier rather than replacing the existing diagnostic terms.
I hear ya! I actually don’t suggest we call each other P0/R5s. I suggest we convert “Type 1 diabetic” to “having an insulin production disorder.” Yes, it’s more words, so it’s less efficient. In that way, it’s sub-optimal. But what gets me is more the “diabetic” bit than the “diabetes” bit.
If I could have my way, we’d stop using both diabetes and diabetic. But the more likely outcome if there will be any change, ever, would be to remove “diabetic” from the lexicon because it insinuates identity, which I think is misplaced.
I would argue that the variety of types combined with the identity aspect of the condition are the primary cause of any social value/devaluation problems. If we “deconstruct” this as an insulin disorder, and that there are two primary vectors of this disorder, it reduces the identity nature of it and brings us back to the actual problem at hand, which would reduce any social judging.
Wow, really? This is phenomenal in my view (except for the fact that it didn’t stick).
Thank you so much. It means a lot ot me that you’re thinking this stuff through with such rigor. I look forward to more conversation as I post other topics here.
You bring up really good points. For insulin production, we have c-peptide, which is a decent test. For insulin resistance, there is this thing called the HOMA model that is not mainstream but does exist.
This is a practical, fair point. That said, the more precise the diagnosis, the more targeted the therapy can be. Big Pharma would likely benefit greatly from this precision medicine revolution in diabetes. Think of all the variations of therapies they could market!
I appreciate this, and you may be right. I’m OK with the ultimate outcome being a compromise of being between where we are now (sledgehammer diagnosis) and my proposed paradigm (multidimensional sliding scale diagnosis). My whole objective here is to move the needle. It’s a step in a long process.
It explicitly states in the link you provided that this cannot be used to measure insulin resistance in people using exogenous insulin, so as of yet, there is no reliable metric I’m aware of for testing insulin resistance in T1s or even in T2s taking considerable amounts of exogenous insulin who may be functionally insulin-dependent at this point.
And we see on these forums so much confusion, including among doctors, about appropriate use and interpretation of the c-peptide tests. It seems like important information, but definitely more challenging to assess and apply meaningfully than getting an A1c.
Basically, my point is, you need probably 10+ years of research, minimum, before your proposal is ready for prime time, in samples where you first determine what those metrics are and how they correspond to diagnostic levels in your system, and then you have to prove that that can be done both reliably and that it can validly correlate to meaningful outcomes. People will want to see that it’s empirically better than the existing system in order to change it.
I honestly don’t think it would change the variations of therapies really—pharma targets both insulin production and resistance right now, and many people use combinations of both already in attempts to best manage. If you had reliable and easy ways of categorizing people, what it could help do is direct people more efficiently to which of the existing treatments they’d be best off with, instead of approaching with a best guess/trial and error. I think the good endos do that already. The problem is many people’s diabetes is treated by their PCP. But I’m not convinced that the change needs to happen with the diagnosis to improvement that. All that needed is clear new treatment guidelines along the lines of “if person is diabetic or suspected diabetic, do X tests, and depending on results, start with these sets of treatments or that set.” If that became the ADA standard, you don’t have to change diagnostic labels for that to get adopted. We see it all the time, for example, with shifting guidelines approaches to treating hypertension and high cholesterol over the past decades. The corporate interest who potentially benefits most is insurance companies I think, rather than pharma, since less messing around and also quicker route to effective treatments that prevent expensive complications.
I think we definitely need a new name. Different countries have come up with different labels that haven’t stuck. I remember one being type 1a and 1b etc. For the difference to distinguish an LADA versus childhood onset. Yea that works, already with the confusion of type 1 and type 2, lets throw more confusion at it.
It actually is important to distinguish type1 and type 2. In younger years diabetes meant virtually childhood onset type 1 diabetes. Now diabetes means type 2. And people know more about type 2 and not a clue about type 1’s. And half the time if you try to explain it you get a blank stare.
Why is it important? Because this trickles down to care. I still hear about people getting told that you shouldn’t eat this or that. This was recently said to a patient by a doctor. That squash has too much sugar for a diabetic. The understanding of the difference is gone in a lot of cases and just 10 years ago I was told by a GP that medications wouldn’t work at all if you’re a type 1. A couple of years ago I was told by a chiro that I could reverse my type 1 because I didn’t get it as a kid. So this becomes important so it can be distinguished. Right now it is easily mixed up with type 2, mostly because there is so many more type 2’s and people are now more familiar with it.
Not to say how it’s aggravating to tell someone that you are a type 1 diabetic and get told that their cousin has that and has to be careful of what they eat and they are controlling it really good, and you ask if their cousin is a type 1or type 2, they don’t have a clue. People hear diabetes and they think and only know about type 2.
And then you have Diabetes insipidus (DI) which is no relation to type 1 or type 2.
Thanks for raising this point. This helps explain why the current body of believe that Type 1s are exclusively insulin production-deficient (a belief that appears to be increasingly being debated, especially amongst adult-onset T1s).
Even though the HOMA model exists, it appears to be rarely used to diagnose. Millions of people are diagnosed with Type 2 / insulin resistant diabetes yet we rarely ever measure it. Why?
C-peptide level analysis isn’t as straightforward as other measures, but it’s not confusing, is it? It’s directly correlated to glucose levels at the point in time of testing, right?
I don’t see a correlation between c-peptide levels and A1c, though. Also, as an interesting aside, it looks as though my A1c isn’t accurate out-of-the-gate, so does that make A1c confusing as well? Well, it does for me at least.
Completely agree. Here’s the thing - targeted research isn’t done unless there is enough interest (medical or economic, usually both) to pursue it. One of the objectives of this document is to start to focus the thinking around these ideas so that the right kind of research can be done so that we can get closer to a state where we diagnose what it is vs. plaster a loose-fitting brand around it that papers over the actual physiological dynamics.
Perhaps! But I come from the school of thought that mental models are more powerful and durable over the long term than simply prescribing a series of if/then’s. Doing the latter may be good for our automated-MD future, but I feel it doesn’t let the mind of the physician work as well. A mind is a terrible thing to waste, and I would prefer to set the right mental model up so that the doctor’s minds are aligned with the right way of diagnosing vs. going through rote ADA guidance.
Given that the entire conceit behind my manifesto is to reduce complications, this would be aligned with the interests of payers first and foremost. Pharma could benefit with the growth of speciality medicine (longshot), and providers would take a hit, as a self-managed patient is a less-seen patient.
Exactly. And the vast majority of people don’t know the difference between types, and aren’t all that interested in understanding either. Yet, diabetes as a brand has a cognitive impact on people and they perceive it’s a dietary self-control issue more than anything else. It’s quite unfortunate.
Bingo. You make the point I make in the manifesto with far fewer words right here.
Thanks for sharing your thoughts. Let’s start the fight to redefine how we discuss and label this condition!