Proposal to Drop Type 1 and Type 2 Classification

I’ve long felt that the classification of diabetes into T1 and T2 is just messed up. T2 is just a hodgepodge of different things and a diagnosis of T2 really means diabetes of unknown cause and the diagnosis for many is not really useful in guiding treatment. A recent editorial article on DiabetesInControl discusses a view proposed by Dr. Stanley Schwarz to do away with the current messed up system and instead adopt a more useful model that identifies the pathways that contribute to hyperglycemia. The article by Schwarz in Diabetes Care is not available to non-subscribers but will presumable be available in three months.

There is also an interest interview of Dr. Schwarz by Steve Freed (if you listen to Dr. B’s monthly teleconferences you will recognize Steve’s voice).

What do you think of the idea of changing the diagnostic classification of diabetes?

ps. Some additional discussion can be found in the topic " Proposed New Classification: No More Type 1 or Type 2 Diabetes."

1 Like

After my daughter was first diagnosed with Type 1 and I was upset and stupid, I would have disagreed.

Now, I’m with you all the way. I do think some sort of non-inflammatory descriptor can be used, however, e.g.: insulin-using; insulin-dependent; non-medicated; oral-med-using, etc. Just NOT “pre”. I’m with David on this one: you either ARE or you AIN’T, kind of like being pregnant.

1 Like

Sometimes I think we need to completely drop the D-word because so many people seem to be incapable of seeing past the “you caused it yourself by sitting around and eating too much” or in the case of children “your mother fed you too much sugar/high-fructose corn syrup” bull$h1t.:poop:

Perhaps “Insulin Impairment” or “Insulin Dysfunction”? Not “pancreaticly challenged” per se, because some PWD’s pancreases produce lots of insulin, thank you very much, but their bodies resist the effects of that insulin.

I don’t agree about changing the classification. Type 1 is an entirely different disease than Type 2 and both are treated differently. From a treatment perspective, this will be confusing. Discussing dosing, how to dose for different foods, this is very different between Type 1s and Type 2s. Type 1s, if lumped with Type 2s, will find themselves having problems getting more than two strips a day, problems getting insulin pumps. Even more problems getting cgms. This will greatly impact their health. Both have serious long term consequences; Type 1s face immediate short term consequences,with frequent hypoglycemia, body will no longer naturally produce glucagon if low. At one point, parents with children with Type 1 wanted to change the name of Type 1 to something without the name “diabetes” attached to it because of the discrimination their children were facing. But if that had succeeded Type 1 may very well have become an orphan disease. The ADA does more for our kids in school than JDRF whose focus is cure-related. The two are recognized by doctors as being completely different, which we were told at diagnosis. This is not to say that Type 2 is less serious. It is not. I believe we must fight together to get Type 2s the tools they need to manage their diabetes, which they currently do not have. Two strips a day for people who may be on insulin, and extremely high doses of insulin at that, is extremely dangerous. Type 2s need to have access to as many strips as they need, even if not on insulin, pumps and cgms if they need them. The goals of keeping blood sugar normal are the same; the means they must use to accomplish this are very often different. Lately they have discovered Type 1 and Type 2 do share more similarities than previously thought. It would be extremely confusing and time-consuming to have to go through a combined board if seeking advice. But, yes, there should also be a combined board for both for issues that effect both, food, political, insurance problems, discrimination. So I vote for adding a combined board but keeping the Type 1 and Type 2 boards.

2 Likes

I really don’t understand your position. I dose my insulin just like anyone with T1. Yet, I can have trouble getting test strips because of being diagnosed with T2. I have been repeatedly mistreated by the health system because of the failure to have a proper diabetes diagnostic classification and criteria. I would urge you to read the article and listen to the interview. There are many defects involved with T1 and T2 and many of these defects are shared. Some people with T2 lose their insulin production just like someone with T1. And someone with T1 can have messed up signaling, just like someone with T2 (this is why drugs like GLP-1s can work with T1).

The truth is that there are terrible rates of misdiagnosis. There isn’t a specific diagnosis of T2. And although there are ways of diagnosing specific diabetes defects, nobody does these tests and patients are harmed because they can’t get proper treatment. There would likely remain a specific classification of autoimmune T1 but rightly many people diagnosed with T2 today also suffer from insulin deficiency and they most appropriately should be diagnosed and treated as such.

3 Likes

ROFLMAO. You really think the present situation ISN’T confusing? :wink:

2 Likes

I love the idea… I have always felt that the type 1/2 model is a gross oversimplification, and harmful to pretty much all of us.

1 Like

Initially, there was no separate diagnosis for Type 1 and Type 2. As they learned how different the two are, they changed classification. If a cure for Type 1 is developed, in many cases, that cure will not cure Type 2. They are clinically different. As is Type 1 diagnosed in childhood and LADA, as they are finding out LADA Type 1 shares more similarities with Type 2 than previously thought. Changing the classification will not change the differences between the two. It may make it more difficult for Type 1s to get strips immediately after reclassification. Type 1 children are not the same as Type 1 adults. I have witnessed both. Type 1 is much more unstable in the childhood/teen years. We must fight for strips and proper medical care for Type 2s. Not put them both under the same classification and say they are exactly the same. They are not. The insurance companies are definitely going to try to deny Type 2’s pumps. They check the C-Peptide levels and only if they are below a certain level will they prescribe a pump. For that matter, everyone on this board needs to vote for a president that is going to try to give universal health care for all. And Universal Health Care that is modeled on Norway, Sweden, Finland and Denmark, not the U.K and Canada. It is not just diabetics that are getting screwed by the health care system in this country. We need to rise up! Feel the Bern…

  • List item
1 Like

This issue arose before, I think about 5 years ago, to rename each diabetes classification in a more descriptive way. The discussion centered around a petition led by two mothers of young T1D children. I don’t have good memories of that debate since at one point a significant portion of the thought leaders in the DOC disagreed with the proposal and the rhetoric was divisive.

I still think a more precise description in the diabetes classification serves the patient community well, providing we take aggressive community action to defend and increase access to all modes of treatment for all sub-descriptors of diabetes. We all know the world we operate in with diabetes, It involves friends and close family, school, work, clinicians, hospital staff, insurance companies and other payers, and the social legal system in the various countries in which we live.

The last debate fizzled and we as a community were left with bruises and no material gain. During that debate, some brought up the idea that this classification change would by its nature need to be spearheaded by the medical community. Perhaps this effort by Dr. Schwartz’s effort will germinate that movement. The important thing we need as a community is to take our rightful seat at the table when/if this happens. As has been observed in other social spheres, if you’re not at the table, you’re on the menu.

I don’t view all the other parties to this discussion as rivals, although some clearly are, such as insurance companies and other payers. I view the medical community as an ally of sorts but I think their view often leans to paternalistic and patronizing. If damage comes to us from the medical community, it comes from ignorance.

Natural organizational advocates like the JDRF, the ADA, the IDF at first seem like the proper channel for us to be heard but they often fail us. I’m not sure what venue of forum would produce the best representation but we should discuss it.

I watched all 7 of Dr. Scwartz’s videos and found them interesting. I encourage others to follow the links.

Finally, we’ve all witnessed, often first-hand, the woeful ignorance ironically from the very medical practitioners that we assumed knew better. Many hospital staff don’t understand the difference between type I and type II diabetes. Any renaming effort would need a much more aggressive and persistent campaign to educate the front-line medical community. That education effort must include a new view of the rights that any person with diabetes can claim. Confiscation of insulin, syringes, insulin pumps, BG meters, and test strips upon hospital admission should be relegated to the ranks of the dark ages of diabetes treatment.

2 Likes

Originally they classified according to treatment needs: insulin-dependent and non-insulin-dependent, IDDM and NIDDM. With this classification, a NIDDM patient could become an IDDM patient, so Brian would be IDDM and should have access to the same number of strips as a type 1. Others would be insulin users but not insulin dependent, meaning that without insulin they would have very high BGs, but they wouldn’t go into DKA .

Then someone decided to classify by cause rather than treatment needs.

Both systems have flaws. If we started to have a lot of subclasses like type 1 with IR, or type 2 insulin sensitive (a long time ago they did classify as type 2R and type 2S), that would get confusing too.

2 Likes

That’s my endo and the only one I found that would treat my pre-diabetes a year ago. He has several skype interviews on the following link that goes into more depth about the proposal for those interested:
http://www.diabetesincontrol.com/defining-beta-cell-centric-classification-of-diabetes/
I think the major point is that treatment would be based on underlying root cause of Diabetes- not merely by the type one has, which allows anyone with the disease to have access to all the treatments and have them tailored to their individual needs.

4 Likes

We need to fight for universal health care that is quality care, comprehensive from cradle to grave for all. We need to fight the insurance companies who are nickeling and diming us to death. Yes. To. Death. We need to choose a successful model like the Scandanavian countries to model our universal health care on. So far the only candidate I have heard mention this is Bernie Saunders. Obamacare, great if you can afford it. Any middle income Type 1s getting affordable medical care that covers pumps, cgms, adequate strips? I’m curious to know. We have insurance, supposedly good, and we have to fight for more strips, fight for cgms, are fighting for Afrezza. There are Type 1 adults who may not be alive today because they were misdiagnosed as Type 2s. Because, supposedly, only children can get Type 1. I do not want to put my Type 1 daughter’s health at risk by reclassifying under one broad diabetic label. Because that would add more confusion at the MEDICAL level. At the insurance level, well… If you think they will give all people under the “diabetic” classification the same care, you are right. But it will be the lower level of care, the two strips a day model. The only way to beat the insurance companies is to join forces with the entire population of patients with chronic illnesses, and rise up in one big lobby and vote for the one issue we all so desperately need, get universal health care passed. Then, we can vote on other issues. Insurance companies are taking Novolog out of their formularies because another insulin comes in with a lower priced deal. Ditto with meters and strips. Things will not get better. They are rapidly getting worse. We need to vote for what we need.

3 Likes

Yes. Agreed. Agreed as to everyone having access to all treatments and tailored. But most doctors are confused as to the basic differences between Type 1 and Type 2 so there can be a lot of danger just keeping a patient alive until they are properly diagnosed. And the broader issue is the insurance companies are taking away medications for chronically ill patients across the board, based solely on cost. Right now, very few are getting the care they need.

1 Like

But it’s our trend of categorizing everything to death that’s given insurance companies the power to deny certain treatments for this specific categorization vs that one and so on… I think we’ve essentially been duped by them into advocating against our own best interest when it comes to further and further subdividing patients

2 Likes

Wouldn’t that confusion be aided by using an algorithm that bases treatment on the root causes instead of the general categories of Type 1 vs. Type 2? Coming from a special education background I compare it to evaluating a child to identify strengths and needs, then using the data to develop an individualized education plan (IEP) specifically tailored to address those needs. This way every person identified with diabetes, would have an individualized treatment plan (ITP) to address the underlying causes of the disease, which likely are still impacting the progression after diagnosis. A major hurdle would be how to evaluate and identify the root causes in each individual whether that be through genetic and antibody testing, etc… Schwartz did mention about the importance of identifying individuals prone to ketosis so they can be immediately treated.

      Any discussion about "reclassification" tends to become 

controversial quickly - I hope I don’t offend anyone with my comments,
that is certainly not my intention. Every person deserves access to the
treatment they need for their individual challenges. Unfortunately, at
least in the US, in our current healthcare system, a lot is driven by
the diagnosis code assigned by their physician. Any classification
change can lead to errors, delays, or at best additional stress to get
the correct coding to receive the necessary treatment. Still…

I don’t remember where or when, but I saw a similar (perhaps the
same?) proposal some time back. At the time, the proposal was presented
as a work in progress, since potential criteria for classification are
many. The requirement is to find a balance between ease of use - to
avoid healthcare provider confusion - and diagnostic/clinical
requirements - to correctly qualify treatment options. The current
article appears more developed.

As someone who has experienced some of what I call “Type 2
discrimination,” in regard to access to treatment options, I can see
the value in a classification system that aims to minimize this. As a
Type 2 dependent on insulin, I have had to fight a battle for nearly
every aspect of my treatment. I have been told by medical professionals
that a T2D cannot have hypoglycemia unawareness, will never get any
benefit from using a pump, and shouldn’t have to test more than once or
twice a day. I have been told to “just use less insulin” even if it
means that my BG is high all the time - because using less insulin is
more important. (I’m still trying to figure out what that last one even
MEANS!) I was also told that all my “symptoms” have to be
psychosomatic, since “T2s don’t have such symptoms.” Oh yes, I was told
that many of my problems are because I "choose to use insulin."
Really? A needle-phobic person like me WANTS to use needles?

From the insurance side, I’ve been told that pumps and CGM are
"unproven, experimental treatment" for my condition. I’ve gotten past
that, for now, but expect the same battle in July with the annual
formulary review, or if I have to change insurance providers.
Thankfully, the insulin prescription at least made test strip limits
higher than 2/day.

OK, maybe I encountered some idiotic so-called “healthcare
professionals,” but a lot of my problem with at resulted from the
oversimplification of the “Type 2” diagnosis. "Textbook medicine"
doesn’t make it easy for doctors to provide the kind of individualized
care that the multifaceted nature of Type 2 diabetes (and in its ways,
of Type 1 as well) presents. I was able to skip through some of the
potential quagmire initially because I have a smart, proactive PCP who
monitored the initial treatment selections closely, making changes
quickly until it became clear that insulin was the best option. (Ok, a
bit of persistence on my part helped, too.) I may otherwise have spent
months or longer on diet/exercise programs that wouldn’t work,
medications that made me ill and who knows what else.

Type 2, insulin deficient with hypoglycemia unawareness. Am I at risk
for DKA? I don’t know, and I sure don’t want to find out! I’ve had two
endocrinologists tell me that I’m their “most difficult (or complicated)
case.” I don’t see how that is so, though - I have no co-morbidities.

One last thing – When will someone make a commercial for a Type 2
diabetes treatment that includes only “patients” who appear to be at a healthy weight, instead of parading one obese T2D after another!?

[REPOST]

1 Like

I have not noticed this… Aside from Wolford Brimley who we all know put the D in Diabeetus… I’ve actually thought almost the opposite trend was true, where commercials usually portray actors who are younger and appear physically fit— more so than I think most in he general population would picture to be representative of the stereotypical diabetic…

I’m going to recopy parts of my alternate post (linked by Brian above) because it seems to me the gist behind the proposal is getting buried. I came upon Dr Stanley S. Schwartz’s proposal by way of the summary article, linked below, on the www.diabetesincontrol.com/ website.
A New Proposed Classification of Diabetes: No More Type 1 or Type 2 Diabetes

Most people appear to think this is just about calling things by different names. That’s not my understanding of what is being said. Instead, Schwartz appears to be suggesting that the current view of Type 1 and Type 2 as “totally different” is, uh, totally wrong. Different, yes. Totally different, not so much.

Schwartz’s view is characterized as “β-cell centric”. I think he is arguing that while there may be “a total of 11 interconnecting pathways that contribute to hyperglycemia”, it ultimately boils down to problems with our β-cells.

Here is an excerpt from the summary article I read.

The basis of the new classification system is treatment of patients as individuals though currently most prescribers will initiate treatment based on a diagnosis instead of the person. Schwartz believes that diabetes is rooted to β-cell and because of this, classification of diabetes types should be based on causes of that damage so physicians will know how to go about treatment. This “β-cell centric” criterion recognizes that β-cell damage can be caused by inflammation, immune actions, gut biome, high fatty acids, high glucose levels, genetics and other causes; categorization founded on these sources can help cultivate an improved treatment strategy, as opposed to simply knocking down an individual’s glucose level.

It seems I am really out of touch with how many different mechanisms may be hiding behind a diagnosis of “diabetes mellitus”. Toto, it looks like we left Kansas behind us quite a few years ago.

That said, this struck me as primarily a discussion among researchers. There is nothing here (yet) that would seem to result in any change to the current diagnosis & treatment quagmire. My personal feeling is that one heck of a lot of the currently practicing MDs haven’t really gotten around to working well within the current T1 & T2 classifications. If you tried to explain to them that there “a total of 11 interconnecting pathways …” I expect most are just going to “Harrumph!” your a$$ and walk away. :wink:

But it does look as though the discussion about underlying mechanisms will be at least interesting. Schwartz’s viewpoint also pokes another stick at questions about methods of treatment.

“The research also noted that any treatment option that would potentially be detrimental to the long-term integrity of the β-cells — specifically including sulfonylureas and glinides — should be avoided because any potential benefits of the medications are severely outweighed by the risks associated with their use.”

Yeah. Good luck with that one.

2 Likes

I encountered similar ignorance from health care professionals but from a T1D perspective. In the US I realize that clinicians must see x number of patients per day or risk failing to pay the bills. I think due to that factor alone doctors try to put us into neat little boxes that define us in a general way and smooth their path with our interaction with us.

When I tried to solicit the help of one endocrinologist to move my A1c below 6%, he immediately concluded my proposal was crazy. I’m sure he was thinking that any T1D with an A1c below 6% must be at undue risk of severe hypoglycemia.

You can’t tell me that he had never come across a T1D, at least in the literature, that was able to calm BG variability to the extent to enable lowering the BG average to enable an A1c to safely settle below 6%. Using broad based stereotypical thinking he quickly lumped me in with a large general group. That enable him to quickly dismiss my proposal using sloppy and discriminatory thinking.

I know he was a smart man and he had empathetic qualities but he wasn’t willing to move out of that well worn rut he had carved for himself in a multi-decade career. This rut-disabled thinking enabled him to get from one end of the clinic day to the next. He had succumbed to the mind-numbing-dozens-of-patients-per-day torture that the current medical system in the US extracts from its providers.

This proposal to move to a patient centered custom diagnosis tool might work if the doctor could get by on seeing one patient per hour but the number denominated medical business formulas will snuff that sensibility out before it has time to take root. I wish it were not so.

I haven’t yet visited the link but your quotes above have peaked my interest, specifically the one about beta centric criterion. It’s vaguely reminiscent of something I read by de Fronzo.