My new Position Paper: The Patient-Centered Approach for the Person with Adult-Onset Type 1 Diabetes

Finally, my position paper is done! Here is the link to my blog. Many thanks to Kris, Michael, Marybeth, and Jen for contributing your stories; thanks also to my cousin, Family Practice doctor Diane E. Dakin MD for her input and "doctor's perspective." The aim of my position paper is to improve diagnosis and treatment of adult patients with Type 1 diabetes. Medical doctors already know how to effectively treat Type 1 diabetes in children and teenagers; that excellence in care should also be applied to adults with new-onset Type 1 diabetes. When a child is diagnosed with Type 1 diabetes, the medical community springs to action on the child’s behalf, because Type 1 diabetes is a serious, life-threatening disease. Kids who are diagnosed with Type 1 diabetes are shown great compassion, and the disease is acknowledged to be profoundly life-altering. Yet often it appears that adults are not shown the same respect; my paper addresses this discrepancy.

679-T1DinAdultsthePatientCenteredApproach.pdf (108 KB)

Very nice , Melitta. Thank you. Sally.

Nice paper! The only suggestion I might have is that your examples all point to seemingly obvious errors, the real challenge is when someone middle age and overweight and inactive comes in. It would have been nice to have an example like that.

I'd also like to point out that when I had my antibody tests done they were billed at less than the quoted amount and my insurance paid even less. The billed cost of a single antibody test was less than the billed cost of a Vitamin D test. Why in the world would doctors test me every three months for Vitamin D and fight tooth and nail against antibody test.

I know we differ in out view, but I actually think every newly diagnosed person with diabetes (whether they match the T1 stereotype of thin and fit or not) should be given a battery of appropriate diagnostic tests that include one you mention. The added cost is minimal, particularly compared with the huge numbers of throwaway tests we all get (and don't even bring up cholesterol).

Hi Brian: Actually, we don't differ on the "battery of tests" for new-onset diabetes. I had some form of that in my position paper originally, but my cousin convinced me to change it. No medical entity (AACE etc.) is advocating that now, so I'd be too far off in my position paper. ADA, in its new position statement, is "dipping its toe in the water" on autoantibody testing. So I opted to do "baby steps" at this time, since I am trying to reach the medical community with this paper and I am just focusing on adult-onset autoimmune diabetes. And I try to emphasize in the paper that the MAX price you will pay for autoantibody testing is $750 (costs have gone up, and that doesn't include ZnT8, which is still expensive and not done at Mayo but at ARUP). The Medicare price is less than $100.

And yes, you are so right, my examples are really obvious errors. But they were still misdiagnosed. Thanks for your comments, all excellent.

I just think that this is so much more than just fixing errors of incompetence. Obviously if a patient comes through the door with a BMI of 20, an active athlete and with a blood sugar of 500 then they should be evaluated for T1. To do otherwise is clearly incompetent and as far as I am concerned malpractice.

But we both you want more. You want all patients to have a right to timely and competent diagnosis. That is why I suggest an example with an overweight T1s. The vast majority of the adult population is going to be slightly overweight and non-olympian and they deserve competent diagnoses as well.

My quote was included I feel honored and I might be blushing lol.

But anyway, I'd say this is a great paper. There's a great point you bring up there too, that adults with type 1 are treated differently than children and teenagers with type 1. Even for someone like me who wasn't much older than a teenager and clearly a type 1 I had to deal with a "no rush" to insulin therapy (though my CDE was all about rushing it when she first saw me because she's like you're a type 1, it's very clear, you need to be on insulin and I'm putting you on it) even though it is the best and only treatment for my diabetes. I agree that we need to fight for doctors to see adults with type 1 as people with just as much of a life threatening disease as children and younger people in general. I think my problem and possibly some other people's problem is that my highest reading ever has been like 352 mg/dL (I think, I could of had something higher but that's as high as my oldest log goes), and for some reason ? If you're an adult? Medical professionals won't take your numbers as seriously. I feel like a child would of been treated aggressively at my diagnosis level (249 mg/dL) but I wasn't even given a single thing for it.

I do agree with also including "less obvious" examples of people with type 1 being misdiagnosed as 2, but that's not honestly a major thing to include when the main thing here is a push for everyone to be tested for these autoantibodies on diagnosis. It shouldn't have a profile, type 1 seems a lot more indiscriminate than type 2.

Credit goes to my cousin Diane, the family practice doc, for the bit about "we know how to provide excellent care for Type 1" and the bit about docs springing to action when a child is diagnosed with Type 1. Diane, BTW, sees a lot of new-onset Type 1 in adults and does a lot of ordering of autoantibody tests.

My blood sugar when I was hospitalized was 619 mg/dl. I was still misdiagnosed.

I will include a "less obvious" example of adult-onset Type 1 in my video of misdiagnosis stories.

Great paper Melitta, and I think we all will be interested to hear how it is utilized. (I've sent specific comments separately).

Melitta, great paper. I understand the dilemma of taking baby steps while trying to get the word out. That's the critical step. But I am looking forward to when you can break down the door and add even more data and papers.

Thanks so much. You have been a godsend.