Proposal to Drop Type 1 and Type 2 Classification

Names matter - and they don’t. True, when it comes to the various clinical trials, names based on cause of the condition (autoimmune, genetic, medication, etc.) may be more important; however, when it comes to treatment, names based cause of of the symptom (hyperglycemia) become important. This difference becomes even more apparent when it comes to insurance reimbursement.

Case in point, symptoms are insulin deficiency, volatile BG highs and lows, and hypoglycemia unawareness; therefore as part of treatment, a CGM was requested (and warranted). Insurance company returns “CGM is only a proven treatment for Type 1 DM; however for Type 2 diabetes, this is only an experimental treatment, and therefore not covered.” A label that has nothing to do with the actual requirement becomes the reason for withholding treatment!

Second case, a Type 1 who also has significant Insulin Resistance can get denied access to medications that help reduce IR because “Those medications are only Type 2 medications.” I have heard of people even getting refused access to metformin on this basis!

In research, “how we got here” may be the key definition; however, in treatment the important factor is “where are we now.”

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We want a correct diagnosis, first and foremost, so that we can get the treatment suited for our personal best health outcome. Following closely behind in our values hierarchy is how much this treatment regimen will cost. I realize this is mostly a value in the US where we like to pay twice as much as things cost in other countries, because, you know, we have the best medical system in the world??! :wink:

If there were no individual cost consequence, I think most of us would prefer to leave the classification issue to the clinicians and researchers.

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And that treatment should be determined by a knowledgeable doctor, not by an insurance billing code. I thinks that’s what’s lost in this conversation— that you should not have to be ‘correctly’ labeled / categorized (according to an insurer) in order to be eligible to receive the treatment that your doctor determines is appropriate for you. I think the counter argument is actually pretty valid— that anybody with any form of diabetes should never have to argue with their insurer about their diagnosis or funding for their treatment. I think the most direct route to that goal is by calling them all the same thing and treating them all equally in terms of access to whatever treatment is necessary / appropriate for each individual as determined by their doctor.

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Yes. I didn’t include it at the time because I hadn’t gotten that far in watching the videos.

I have gone back and edited my post so it now includes a screen cap of both slides. I figured it made more sense to have both slides side-by-side than to add the second slide in a separate post.

Below is a quote/link back to that post in the interest of saving folks the time of scrolling around to find it if they are curious.

It isn’t only insurance companies that make this a problem, however. I was told by a supposedly smart edocrinologist that, since I am Type 2, I “obviously” will not find any benefit from using an insulin pump. I don’t see how that makes ANY sense at all! Benefit from a pump isn’t determined by “Type 1/Type 2” - it’s determined by the results from treatment. On MDI, I found I had to choose between very high fasting BG and rising BG throughout the day or regular drops into hypoglecemia 1-2 times per day, because basal needs are not constant throughout the day. What other evidence of potential benefit from pump therapy is needed?

Doctors and other medical professionals frequently get just as hung up on labels as insurance providers. If not the labels, what kind of change with alter this paradigm?

Unfortunately this is true… Although I think the driving force behind this ignorance is still the financiers…

It’s a cultural issue as well… We’ve become so hung up on labels that we’ve lost sight of the big picture in many ways… I think that with less diagnostic specificity, on this particular subject, comes more treatment flexibility. I believe that the forces behind those who have convinced many patients, and even many doctors otherwise, unfortunately, are those whom it costs money to provide the best treatments to patients, and saves money to provide subpar treatments.

Certainly I understand that researchers, etc have to research different subtypes, etc differently— but those distinctions belong in their laboratory, not at your pharmacy. I don’t know what the solution is, but I’m not sure we are moving in the right direction.

@Melitta You said exactly what I wanted to say. I am certainly on-board with the notion that people who fall under the huge umbrella of Type 2 might need better diagnoses and targeted treatments. However as a Type 1 who gets sick within 2-4 hours of going without insulin and who will die fairly quickly without insulin, I want to keep a name that screams that I am different from the vast number of people with Type 2.

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If we don’t know what type 2 is and don’t diagnose treat it properly that is not a reason to say we don’t know what type 1 is, even with all of the variations in both , it is just not logical imo.

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The American Diabetes Association/JDRF Type 1 Diabetes Sourcebook (ADA/JDRF, 2013; Anne L. Peters and Lori M. Laffel, Editors) is an evidence-based reference work and a treatment consensus report written for clinicians. They are unequivocal in stating that Type 1 and Type 2 diabetes are fundamentally different diseases. From The Type 1 Diabetes Sourcebook:

  1. We want [medical] providers to know that patients with T1D are not the same as patients with T2D; thus, we describe the specific approaches for patents with T1D across the life span. Page 73.

  2. The pathophysiology of the two diseases [T1D and T2D] differ on a basic pathophysiologic level such that T1D is marked by insulinopenia while T2D is characterized by obesity, hyperinsulinemia, insulin resistance, and relative insulinopenia. Page 104.

Ralph DeFronzo MD, in his excellent 2009 Banting Lecture, addressed ways to better treat those with Type 2 diabetes.

There is a huge problem of misdiagnosis (Type 1 misdiagnosed as Type 2 diabetes) that would only be worsened by “merging” the different diseases. Excellent care and treatment protocols exist for Type 1 diabetes (of course, they can always be improved). IMO we should be focused on Type 2 work-ups that can then be used for defining optimal treatment, which is what DeFronzo seems to advocate. And also reducing the stigma associated with Type 2 diabetes; the stigma hinders excellence in treatment, IMO.

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Main Type 1 difference: If my daughter is without insulin she is very high in two hours. I’m not sure if she has exactly 24 or 48 hours, if deprived of insulin, she will die. She no longer has proper glucagon function so can die from lows overnight, if exercising, or at any time. Therefore she needs to either wear a cgms or test frequently. She faces possible death in the very short term. In fact, she was misdiagnosed at 8 years of age, when her pediatrician did not send her urine to the lab nor did she take blood samples, claimed she did so, and told us our DD did NOT have diabetes. We specifically asked for a full blood workup to check for diabetes or other illness as she was ill. Was told she probably had a virus. Two weeks later rushed to ER, in hospital 11 days. Being a child, the ER at the children’s hospital was able to properly diagnose. If she was adult when diagnosed, she would probably be mistakenly diagnosed as a Type 2 and be at great medical risk of death. Since most adult Type 1s are LADA, they may have time to work with the misdiagnosis. Rapid onset adult Type 1s would not be so lucky. Death could be in one or two days, immediately, not in the long term. Reclassification would further confuse doctors from properly diagnosing Type 1 which can be fatal. You do not realize the insurance companies do not care about us; they are all about reducing costs. Reclassifying will not cause the insurance companies to grant Type 2s more strips, pumps; quite the contrary. The adult Type 1s will be the ones most adversely effected by reclassification. You have to fight the insurance companies head on and we may need a larger lobby than just diabetics alone to do so.

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Wow, everyone seems so upset over something that I don’t believe is something ever proposed. I would encourage everyone to read the article and see the video. There is hardly any suggestion that the these changes would effect how someone currently diagnosed with T1 would be diagnosed or treated. Rather it is to fix the diagnoses of 95% of people with diabetes who simply get diagnosed as “diabetes of unknown cause.” I would urge you to read the article and view the video.

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[quote=“Brian_BSC, post:52, topic:50659”]
Wow, everyone seems so upset over something that I don’t believe is something ever proposed.
[/quote]These are not “feelings” and I for one am Not upset, I just don’t agree.

I think it is interesting to see the titles morph through the hierarchy of articles. The doctor’s original article is “The Time is Right for a New Classification System for Diabetes.” Then the title of his interview article is “Defining the Classifications of the New System.” And then Diabetes is Control changes it to " A New Proposed Classification of Diabetes: No More Type 1 or Type 2 Diabetes. And here we are on TuDiabetes with " A Proposal to Drop Type 1 and Type 2 Classification."

I’m not particularly angry or upset to talk about this stuff. Ideally we should get to a point where all patients receive the appropriate care for their disease. In the short run, that is a pipe dream. Probably in the long run also.

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I just first want to make a comment on what you said. How true, now have a little fun, just because.
I want to make a comment on Diabetes. I have an analagy of Diabetes that most people can understand better. that is the automobile. Gas is food, It goes through the car to the engine where the spark plugs do their thing. with type 2 the spark plugs don’t spark enough, or don’t spark in rythm. now in type 1 the spark plugs don’t spark at all.so by necessity we have to manually spark (insulin), which causes the gas to either run the engine good, or flow through and flood the engine (hyperglycemia) or spark too much and not let anything in the engine run (hypoglycemia). Also in type 2 the insulin is produced, but after a while doesn’t quite do enough at all. but that is not done by the immune system.

the actual meaning of Diabetes Melitus. It is a group of funky words. Diabetes is Greek for siphon, or flow through. Mellitus is Latin for Honeyed, or sweet.

NPR had a nice story discussing the article by Dr. Schwarz. I think there has been a lot read into this proposal that isn’t there.

We have to understand, right now if you walk into a doctor with a high blood sugar you get diagnosed as having T2. And that diagnosis is very, very accurate since 95% of patients will actually have T2. The average diagnosis accuracy for doctors, even for easy cases has been found to be 75% and that is with employing expensive diagnostic tests. The proposal to more finely break up the classification of diabetes would “break” this problem. It would mean that the 95% would be broken up into a bunch of different types that would have to be identified by a differential diagnosis. This would mean that you could not just “assume” T2, you would have to do proper tests to figure out what type. This proposal doesn’t mean that you would stop testing for T1, it would mean that a doctor would almost always have to do the tests because without a proper differential diagnosis they could get it even close to right.

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Exactly what I took away from it Brian. Not sure if it was in the editorial or the videos, but he made a point that one of the first things to do was identify any patients that are Ketosis prone and immediately treat with insulin. I would hope that this new approach would mean that there would be less chance for misdiagnosis because doctors would need to run various tests to determine the underlying mechanisms to treat. One example statement was “Precision medicine in the treatment of DM could be realized by additional diagnostic testing that could include C-peptide (1), islet cell antibodies or other markers of inflammation (1,65), measures of IR, improved assays for b-cell mass, and markers of environmental damage and by the development of markers for the various mediating pathways of hyperglycemia.” Maybe I am looking at it too logically but I would think patients presenting with more severe symptoms would be validated by further testing. Obviously the severity would lend itself to more needs and hence more if not faster treatment.

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I think what they do is Dx type 2, and only if you don’t respond to T2 drugs do they look more closely. Unless, of course, you’re in DKA. And that could be type 1, LADA, ketosis-prone diabetes, or some as-yet unrecognized type.

One problem with running a lot of tests right off is that it would run up costs, and people with diabetes would be reviled even more than they are now.

One trip to the ER offsets the cost of many tests. Most of the tests are far less expensive than the test to confirm other serious or chronic conditions, often starting with less-confirming evidence than many people with just-diagnosed diabetes exhibit. I’d rather test, test, test.

I hear these complaints about cost, but I consider that to be totally unfounded. I just looked back, my insurance rate for the antibody tests is about $20 each and the c-peptide is $21. I recently had a genetic tests done (for another condition) for $60. These tests are either already entirely affordable or could be made very affordable if done competitively at scale.

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I agree. But when the public doesn’t understand difference between what is currently called Type 1 and Type 2, they’re unlikely to understand that early Dx and treatment is cheaper than letting things progress until your feet fall off.