Petition to Revise Names of T1&T2 to Reflect the Nature of Each

Type 1 and LADA
21

That's why I don't like the name "Type 1.5" which fortunately seems to have fallen in use compared to LADA, because it seems to imply LADA is "halfway between Type 1 and Type 2". It's not; it's Type 1, just with slower onset. Per John Walsh in Using Insulin, "Insulin Resistance is minimal or non-existent in LADA's" (page 52) as it is in newly diagnosed Type 1's. I believe he states common times for destruction of beta cells are between a few months and 6 years with "insulin required in 1/2 of those within four years".In my case I needed insulin within 15 months of diagnosis. Though the original edition of Using Insulin is now 10 years old now and current best practice says that starting LADA/Type 1's on insulin right away will slow beta cell destruction.

I actually made my own diagnosis while living in another country but ALL LADA/Type 1's are diagnosed as Type 1's. "LADA" is not an official diagnosis. I probably don't respect insurance companies any more than you do but Insurance and Medicare distinctions are important to us for things like number of test strips covered as well as approval of insulin pumps. I also want my Type 1 Diagnosis on the records in case I am ever hospitalized and can't speak for myself so they don't see a baby boomer and kill me by thinking I need Metformin or Actos not insulin.

Even though I disagree with the emphasis on name change I have to say it would have strengthened your argument if the information on LADA/Type 1 was more prominent and more accurate (like stating the true number of Type 1 which is 25% not 10% and pointing out the misdiagnosis of slow onset Adult Type 1's because their onset does not come on as rapidly.)

Yes, we can certainly agree to disagree but conversations like this one where you share your expertise in childhood diagnosis and I mine in LADA/Type 1 are, imho, a lot more valuable both for our community and the medical field than coming up with new terms.

22

As I said, my official diagnosis is "Type 1", not LADA; LADA is not a diagnosis and "1.5" certainly is not. If hospital personnel don't know what that means, then maybe they will recognize my insulin pump (or maybe not..lol).Coming up with new, unfamiliar terms and ones that are very medical and obscure sounding is not likely to clear up the assumptions of someone not educated in
diabetes types. In general, rate of onset is slower the older the person, though there are exceptions to that.

I'm really suprised Gary Scheiner would say that. Everything he says is correct except the part about insulin resistance (and the mint chocolate chip.....huh?).I know you're new to TuD, but in surveys on here people who identify as LADA/Type 1 and are past their honeymoons report TDDs that are equivalent to other Type 1's and much lower than would be expected in someone with IR. You might want to check out Melitta's blogs if you want to learn more about LADA. She's our resident expert.

23

It’s interesting to me that Scheiner’s latest TLAP edition covers LADA and it’s related insulin resistance. Does he provide footnotes to sources for this? I have the 2004 edition of TLAP and he doesn’t mention LADA at all.

I struggled for years with insulin resistance and would have truly benefitted from this knowledge. I eventually figured it out but with no help from a parade of endos!

24

Thanks, Jamie, I appreciate your passion.

25

My theory, which I can't prove but believe to be correct: insulin resistance is not as closely linked to any particular type of diabetes as is automatically assumed.

There are T2s (like me) who are not very resistant at all, and others who are intensely resistant. There are T1s/LADAs who are, and who aren't. (Yes, I do consider T1 and LADA to be one and the same; arguing about the rate of onset when the final result is identical strikes me as a discussion of angels on the head of a pin. Or, to use Oscar Wilde's classic description, a distinction without a difference.)

Insulin resistance occurs (or doesn't!) in in widely varying degree in all sorts of people. I don't think we really understand the etiology of IR very well yet. It may turn out to be largely environmental, which if true would mean that it can strike anybody, regardless of what is or isn't going on with the pancreas.

I distrust flat pronouncements about this. I just don't think it's conclusively settled yet.

$0.02

26

I was thinking just such. Diabetes does define both types, Other than causes and treatment methods we do have a lot in common. Both types hopefully do benefit from the interaction that we have here at TuDiabetes. Both types do benefit from a healthy life style, Type 1's can be over weight and insulin resistant and T2's can be thin or totally insulin dependent such as I am. I know that I have benefited greatly from my interaction here with my Type 1 friends and I hope it works both ways.

I understand the desire of some and maybe most T1's to separate themselves from the negative stereotype of T2's, heck I would love to distance myself from that one. It is a perception that serves no one.

27

I have to be honest, I won't be signing the petition. I understand there is confusion about the different types and causes of diabetes. But things are just so much more complicated than two types of diabetes. Even so called autoimmune T1 diabetes is likely some spectrum of different autoimmune and immunologic conditions. And T2 is even more complicated. According to DeFronzo, T2 is a result of eight different defects, several which are shared with autoimmune T1. T2 isn't just IR it is also insulin deficiency.

And as a T2, I seem to primarily suffer from an insulin deficiency, so called apoptosis. The path that led me there may well be different, but the end state is the same. An artificial separation of medical conditions which clearly manifest with the same medical state will only bring me a case of woe. My access to insulin, to pump and CGMS technology is already limited. And I cannot see how creating two separate names is going to do me any favors when it comes to my future treatment.

28

Hear, hear, Brian! I am in exactly the same boat: insulin-deficient T2 with very little IR. And I share fully the concern expressed in your last two sentences.

29

Please understand that I'm not opposed to a name change but I do believe that you are putting to many hopes into what it will accomplish. Ignorance of Type one is the main problem that I see. A coach will be just as ignorant of type one no matter what you call it. Doctors will continue to think T2 only for the simple reason that it is much more common and the symptom are similar even though the cause it different. A child or adult T1 now ends up in DKA not because of name confusion but rather because of inept medical professionals. Education here is the key

30

Is your plan for the petition to change the names in the US or is your scope larger ?? IDF ( International Diabetes Federation ) states that over 160 countires are connected with IDF with no doubt quite a few English first language , if not second .
My believe is , that the word " diabetes " is a Global one and likely I am not a very forward thinker ...I don't know, where your petition would lead too BUT I am all for Education ...this task can be , should be often on our minds . I recently met an insulin pumper , diagnosed about 4 ms ago with type 1 ; she expressed that till that time, she had no knowledge of diabetes, other than it is " a disease of older people "...she was educated very quickly , believe me ! A name is a name is a name ...only those who live with the name will truly know the meaning .I was told I had diabetes back in early 1983( age 42 ) ; meds did not work , 6 weeks later on insulin ...insulin worked ...only much later , did I start using the type 1 description ...for me , it never was a big deal ; the big deal is :I together with my Team need to take care of this or else .. I do wish your challenge successful ...it seems you and your friend have put your soul into this ...our world needs " committed people " for the betterment !

I will not sign because of my concerns

http://en.wikipedia.org/wiki/International_Diabetes_Federation

31

I posted your petition link in a FB group in my Community ...I also added, that I was diagnosed at age 42 plus and I would not sign because of the complexities /confusion of diabetes ...a comment was added : person ( not living with diabetes ) did not know , that type 1 can be diagnosed at another age than during childhood . At least one more person received a tiny bit of Education ..I though I share here :)

32

As long as it doesn’t impact finding a cure or developing new treatments, they can call it what they want. I don’t get it, but whatever floats your boat. I guess after 30+years years, I’m over the name debate and more interested in improved treatments.

33

I agree with Zoe and Nel. Type 1 is not only a child's disease. I am in my 20's and was diagnosed just two years ago. Like Zoe I was automatically diagnosed Type 2 simply because I'm not a "juvenile".
I believe that education is paramount instead of the switching up of terminologies. Instead of making all encompassing statements like, "A sedentary lifestyle can bring about Diabetes" how about people learn the difference between Type 1 (which NO amount of exercise or lifestyle change is going to help. I was a health nut PRIOR to my diagnosis) and Type 2. All of the onus should not be solely on the Diabetes community. The medical community should make it a point to inform the media (thus informing the general public)about the difference.
Yes, both types share the same problem...controlling blood sugar. But the root is NOT the same (well exactly. There are Type 2 people who are slim and obese people with normal functional pancreases).
Great petition nevertheless. I am glad that people are making this an issue. I am tired of the ignorance surrounding Diabetes.

34

Hi Jamie , I copied this from the Canadian Diabetes Association ,website diabetes.ca...and I am involved with raising funds through Team Diabetes Lead represents our commitment and the value we deliver in the fight against diabetes. We will continue to be leaders by ensuring that we are effective educators for all our stakeholders and a strong voice for those living with diabetes, and by funding leading-edge research that may lead to the next great medical breakthrough.
Live specifically focuses on our long-term strategy to help people with diabetes live healthy lives. Aspects of our strategy include providing all stakeholders with education, community-based tools, resources and networks; honouring Banting House, a National Historic Site of Canada; and focusing on our camps for children with type 1 diabetes and their families.
Cure stands for our continuing tradition of innovation and excellence as we fund Canada’s most renowned scientists and clinicians in the quest towards a world without diabetes. We will fund unique, clinical and applied research in order to find a cure, and to improve management and treatments.
All types of PWD are covered in their Mission statement ...Kids Camps , research , education ...just another reason why I stay with my original choice not endorsing name changes As an add on , the Board of the CDA includes type 1 , type 2 , reseachers, etc.

35

Hi Jamie: I would favor a name change, and think you bring up many excellent points, but I think "Autoimmune Beta Cell Apoptosis (BCA) Diabetes" is too complex; autoimmune diabetes is really much simpler. And although you do include information about adult-onset Type 1 diabetes in your petition, it's a bit limited. For example, death from DKA is also quite common amongst adults who have never been diagnosed with diabetes. And people with adult-onset Type 1 diabetes are very often misdiagnosed as having Type 2 diabetes, and that can be a fatal error (or at least cause rapid onset of diabetic complications due to the patient being denied insulin). Here is a link to my Bill of Rights for People with Adult-Onset Type 1 Diabetes (aka "Manifesto for the Misdiagnosed") where I address many of these problems. In your petition, you state that more than 90% of all cases of diabetes are Type 2 diabetes, but that is not true if the misdiagnosed are included in the Type 1 stats: about 10% of "Type 2s" are autoantibody positive and have been misdiagnosed. Doing the math, about 75% of PWDs have Type 2 diabetes.

36

Jamie, all,
I have been meaning to share my perspective about this topic for a few days.

I respectfully have to disagree with the impact that this would have, specifically with regards to uniting the type 1 and type 2 diabetes communities.

I am copying here the text of a blog post I wrote on the Diabetes Hands Foundation web site, regarding the petition.

A few weeks ago two mothers of children with type 1 diabetes, started a petition asking the heads of ADA, NIH, and IDF to change the names of type 1 and type 2 diabetes.

Seeing the level of depth in the arguments in the petition, I know that a lot of time and energy went into it, so I really respect it. But personally, I do not agree with it, with all due respect to Jamie and Jeanette (who started it) and to the people that have supported it.

Our friend Amy Tenderich made some excellent points on a DiabetesMine post yesterday, which we highly recommend you read. She presents both sides of the debate in a balanced way and stated her position: “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.”

I agree with Amy and I also don’t believe this effort (if successful) will foster a harmonious relationship between the type 1 and type 2 diabetes communities. If anything it would open up a deeper divide.

Increasingly, the science is showing us MORE and MORE genetic elements that connect to type 2 diabetes and its risk factors. More people with type 2 diabetes evolve from taking oral meds (plus diet and exercise) to being on insulin. As they do, their lives with diabetes and the challenges they live with become more similar to the ones faced by those with type 1 diabetes and LADA.

I don’t like to criticize an idea without offering an alternative. The alternative I propose is that we look at the successful experiences of the past 30 years, from the HIV/AIDS and Breast Cancer communities, to see what they have done that has resulted in these diseases getting 72 times and 60 times more biomedical research funding than diabetes (both types combined).


Source: The Fair Foundation

Back in the 80′s, people who were HIV/AIDS positive and negative joined together, because the stigma was affecting all of them. I recommend that everyone touched by diabetes watches the documentary “How To Survive a Plague“, so we can all get a sense of the unique challenges that this community faced and how they overcame them.

You may say: “HIV/AIDS is so different from diabetes. Diabetes is not contagious. There’s no point in comparing ourselves.” I would argue that a majority of people with diabetes live in the DIABETES CLOSET, and because of this, WE as a diabetes community, are in the DIABETES CAVE… we’re not being seeing enough, all types of diabetes are not getting enough exposure, visibility, and deserved attention.

So, instead of focusing on changing names, let’s unite, learn the lessons from the other communities that have earned the level of visibility that they have today, and turn diabetes from a cause to a movement.

I hope you will join this invitation to do justice to all of us, and see diabetes receive the level of financial support and awareness it needs and deserves. It won’t happen if we don’t join and come out of this cave together! I want to leave you with a video we did back in 2009, inviting all people touched by diabetes to learn from each other and find common ground.

37

Hear, hear! I could not agree any more completely.

38

why do we have to unit type 1 and type 2 diabetics, it's not about that, this isn't a personal attack nor is it a presumed love feast, it's about distinguishing between the two totally different diseases. sure, type 2's may eventually move to insulin, there are lifesytle changes they can make to ward that situation off. IDK, maybe not. It's not about uniting or isolating each other. We're NOT one happy community for pete's sake. We, as type 1's, want to differentiate between the two. I'm not a type 2 diabetic, I don't need to diet, lose weight, whatever is always suggested with the 'genetic diabetes' statements. It confuses the masses, most of whom have NO idea that there are indeed two different diseases. It's also not about type 2's moving to insulin. The beta cell destruction and the autoimmune disease is more then just taking insulin, it's an attack on the pancreas, as well as many other hormones involed. I have TYPE 1 diabetes, maybe no worse or better then type 2, but I have a totally different disease..I WANT THE DISTINCTION and more awareness in the media for type 1.

Additionally, what a type 2 diabetic does or doesn't do in terms of lifestyle chanages, etc...is none of my business, doesn't effect me one way or the other, i could care less, frankly what, say, Paula Deen, does or doesn't do...nor should a type 2 need to know what I deal with every stupid day with this nonsense. Sorry, they are NOT the same. Just because it's diabetes, sorry, it's not all bundled together and shouldn't be!

Additionally, if anyone has noticed lately, even all the commercials about diabetes target type 2 diabetes but never distinguish between the two. I see insulin commercials now with a type 2 diabetic, usually overweight, stating that they now have to 'start' insulin and promote whatever, novolog, levemir, saying, their doctor's say, "they now have to start insulin, lose weight, exercise, etc..." per their doctor. I didn't just have to start taking insulin, I started the day I was diagnosed and will never get off it until and unless there is a cure!

39

Here's what it should be all about. To quote from Scott Strange's blog mentioned in the Diabetes Mine Blog Manny mentioned:

"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."

also PLEASE, if you haven't seen it watch Manny's video from 2009 he included in his post. I think I've seen it at least 10 times. I think I may watch it again today.

Marie, type1 for 45 years

40

it should 'be about' whatever we feel, not what is dictated by what you or anyone else says. i have empathy for anyone who struggles. I however, want a cure first and foremost for type 1 diabetes...sorry, that's just me. i want awareness for the distinction. I struggle every day, every day with this, it effects me in every way, my career, my loved ones, my health, my emotions (anxiety depression, etc..) i want type 1 awareness, that's my concern. I have empathy for those young children who get this nasty disease and all those parents who go through hell having to become their child's frickin pancreas. it's not stereotypes, it's fact.