Dr. Irl Hirsch on the crisis of adult onset Type 1 diabetes

Type 1 and LADA
1

This is an interesting but sad statement:

Type 1 Diabetes in Adults: Growing Management Crunch Forecast

By Bruce Jancin
Elsevier Global Medical News
Breaking News

KEYSTONE, Colo. (EGMN) – The number of adults with type 1 diabetes is quietly and steadily climbing – and the American health care system is utterly unprepared to handle their needs.

So asserts Dr. Irl B. Hirsch, professor of medicine and holder of the Diabetes Treatment and Teaching Chair at the University of Washington, Seattle.

“The folks at [the Centers for Medicare and Medicaid Services] are not ready for the impact of type 1 diabetes in the Medicare age group over the next 10 years. I’ll say it publicly: They are clueless,” Dr. Hirsch said at a conference on the management of diabetes in youth, sponsored by the University of Colorado at Denver and the Children’s Diabetes Foundation at Denver.

Adult type 1 diabetes poses huge public health issues, in part because of physician workforce constraints. This is a disease that will of necessity be managed primarily by nonendocrinologists, he said.

The projected number of internal medicine–trained clinical endocrinologists is nowhere close to meeting the growing demand for management of type 1 diabetes in adults. Primary care physicians do not have the skill set or time to provide state-of-the-art diabetes management. Few geriatricians are trained in type 1 diabetes. So the task, by default, will fall upon the shoulders of the midlevel providers – nurse practitioners, physician assistants, diabetes educators, and registered dieticians, he predicted. And he’s just fine with that.

“The DCCT [Diabetes Control and Complications Trial] was done by midlevel practitioners. That’s how we run our clinic, too,” he said. “The midlevels are going to be in charge, there’s no doubt in my mind. And this will work.”

The incidence of type 1 diabetes is doubling roughly every 2 decades in developed nations. The rising population of U.S. adults with type 1 diabetes has two sources: a steady increase in patients with new-onset type 1 disease arising in their 30s, 40s, and beyond, and improved longevity of patients with childhood-onset type 1 diabetes.

“In our clinic, the biggest surprise for our internal medicine residents and our endocrine fellows is how many of our patients are diagnosed after the age of 20. It’s a lot. I can’t say exactly, but it’s easily over a quarter of our type 1 patients who are diagnosed after age 20,” said Dr. Hirsch.

The age record at the Seattle clinic is held by a patient who presented at age 92 with newly diagnosed, autoantibody-positive type 1 diabetes and a history of Graves disease and vitiligo.

“We [don’t] really understand the epidemiology and demographics of type 1 diabetes in adults .... But now with the better treatments, having patients live for 50 years with type 1 diabetes is routine. It’s not a big deal anymore,” he said.

A large new research grant from the Leona M. and Harry B. Helmsley Charitable Trust is going to provide badly needed data on type 1 diabetes in adults.

“You’ll be hearing a lot more about this project soon. We’re in the midst of planning a very large registry of patients called the Type 1 Diabetes Exchange, where we hope eventually to have data on 100,000 individuals,” said Dr. Hirsch.

With regard to new-onset type 1 diabetes in adults, Dr. Hirsch highlighted a well-documented Italian study that demonstrated that the incidence in Northern Italians aged 30-49 years was similar to that in 15- to 30-year-olds. Among males there were twin peaks in incidence: one at age 10-14, and a second at age 45-49. The trend in females was similar except that the second peak wasn’t as high as the first (Diabetes Care 2005;28:2,613-9).

Dr. Hirsch said that by a very conservative estimate there are 1.1 million American adults with type 1 diabetes of either the classic type or latent autoimmune diabetes of adults (LADA), a group whose absolute need for exogenous insulin is somewhere between that of classic childhood-onset type 1 diabetes and adult type 2 disease. By a recent estimate, LADA accounts for 2%-12% of all cases of diabetes (J. Clin. Endocrinol. Metab. 2009;94:4,635-44).

He does not include in his tally of adults with type 1 diabetes the very large group with what is often called “type 1.5” disease: that is, phenotypic type 2 disease with autoantibody positivity. Type 1.5 diabetes is roughly two- to threefold more common than classic childhood-onset type 1 diabetes, but there is not as yet agreement on how to classify it. He excludes them from the type 1 diabetes category because type 1.5 patients have major problems with obesity and metabolic syndrome, which are not issues in managing type 1 disease or LADA.

The forecast is that in the year 2019 there will be roughly 3,200 internal medicine–trained adult endocrinologists. Assuming that close to half of them are not seeing any new patients because they are fully booked, or are not taking new diabetic patients because the reimbursement is paltry compared with the effort required in state-of-the-art disease management, or due to pressing research or administrative responsibilities, that would work out nationwide to 636 type 1 diabetic patients per practicing endocrinologist. That’s just not realistic, Dr. Hirsch said.

Approaching the manpower issue from another angle, Dr. Hirsch said his recent informal, nonscientific survey of adult endocrinologists in St. Louis, Seattle, Los Angeles, and Chicago suggests type 1 diabetes typically accounted for 20% of their patient load. Again, that doesn’t come close to meeting demand.

“No matter how one does the math, type 1 diabetes in adults will by necessity be cared for by the primary care physicians,” he said.

But that’s not realistic, either, the way primary care medicine is practiced at present, he quickly added. “In current internal medicine residency training, we put little or no emphasis on insulin therapy in general, let alone type 1 diabetes. And current primary care systems lack an infrastructure for insulin therapy, let alone pumps, sensors, and the like,” according to Dr. Hirsch.

And then there are the brutal time constraints imposed on primary care practice, he continued, citing a recent survey of 2,500 family physicians which showed that patients with well-controlled diabetes were on average allocated just two 10-minute office visits per year for their chronic disease.

Through the Helmsley Trust project, diabetes researchers expect to generate much more specific figures as to the actual time primary care physicians spend in managing type 1 diabetes in adults, he added.

Dr. Hirsch declared having no financial conflicts regarding his presentation.

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Thanks for posting. Is sad & frightening.

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This confirms the vibe I was getting from my NP about the “newness” of the rising number of Type 1 adult cases, and related insulin dependent types… “rare” appears to becoming less so, and the medical community is being taken by surprise.

Thank God Tudiabetes exists-- I think I would have been a nervous wreck if I didn’t have access to a resource with so many smart and knowleadgable patients!

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Hi Caprifoglio: I would actually disagree–adult onset Type 1 diabetes has always been more prevalent than childhood onset Type 1 (I have a 1950s diabetes book that documents that and in 1934 Dr. Elliott Joslin noted that the incidence of diabetes in lean individuals [Type 1] was relatively constant in each decade of life, but that diabetes in the obese was related to older age) but the problem is that usually people with adult onset Type 1 are misdiagnosed as having Type 2 (an altogether different disease). So I would say that the only thing that is “new” about adult onset T1 is that more people are getting correctly diagnosed. Gradually, within the last decade or so, the medical community has started to acknowledge the prevalence of adult onset Type 1, although too many are still misdiagnosed.

And you are so right, we are so lucky to have TuDiabetes, to share and support!

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Some of the confusion has come about because of the confusion in medical practice in the diagnosis of diabetes. There was adult and juvenile onset diabetes, where adult onset included both what we now know is T1 and T2. Then there was insulin depdendent and non-insulin dependent diabetes, IDDM could be both T1 and T2. And this diagnosis confusion continues today, you are T1 if you arrive in the ER in DKA, otherwise you are T2 until proven otherwise. And why bother proving anything? There are stories of T1s who have spent 30 years with their charts marked T2 because nobody bothered to diagnose them. Even today, many doctors won’t bother to diagnose you as a T1, after all if you are T1, it gets really bad and you end up in the ER, then it is obvious.

Personally, I’d rather use a simple blood test to diagnose my condition rather than depending upon a near death experience. But who am I to question medical practice?

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That makes sense – now that you mention it, I think I read something in discussions here that mentioned something about that, and that there isn’t much data about T1 adults in general… I’ll have to see if I can find it…

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But near death experience is so fun! Just kidding, naturally. :slight_smile:

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I think of all the pesticides being used.

Just the other day I had a helicopter attack by my house mosquito spraying with numerous small children out playing. ummmmm

Then I read the other day that DEET used in bug spray repellent is getting into the ground water after people take showers and then it is ingested via the ground water.

With this growing in frequency something is going on Melitta

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Just my first-hand experience:

When I was first diagnosed 30 years ago, by definition if you were diagnosed as a kid you had “juvenile diabetes” and if you were diagnosed as an adult you had “adult onset diabetes”. T1 and T2 were terms just in the process of being invented. I’m sure lots of T1’s diagnosed as adults were classified as “adult onset” back then because that was the definition. (The “adult onset” ctagory back then were subdivided into “insulin dependent” and “non insulin dependent”, and many skinny “adult onsets” diagnosed in their 20’s or 30’s were indeed on insulin).

About 20 years ago I was a young adult, at college and grad school with about 10 years of T1 diabetes under my belt. I had a very hard time finding docs or practices that would treat a young adult T1 diabetic when I moved away for grad school. I was told (quite frankly) “only kids have juvenile diabetes, we don’t know how to treat you, you could see one of our adult diabetes specialists though”.

Things have improved since then, and usually after being first presumed to be a middle-aged newly diagnosed T2, I can quickly move past that and get them to realize that I’ve had T1 diabetes for about a third of a century now and metformin simply won’t do the job.

So yes, the medical community faces some challenges in realizing that T1’s can now live for most of a century after diagnosis, but I see them slowly facing the challenges. Even the ADA and JDRF now have online communities for adult T1’s, realizing that not just kids have what was once called “juvenile diabetes”. So I see a lot of progress being made.

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Hi Brian/bsc: And you can have the near-death experience and STILL be diagnosed as having Type 2! That was what happened to me. Near death, hospitalized, DKA, then taken off of insulin and discharged from the hospital (my blood sugar was only about 350 mg/dl at discharge). But within a week my diagnosis was changed to Type 1 and I was on MDI, due to the fact that I am a pit bull in human form. However, that was 15 years ago, and I do think that there have been improvements since. I find it shocking that in Irl Hirsch’s article he says that most adult onset T1s will be treated by non-endos. That is horrifying to me. I see an endo, and can’t imagine being treated by a GP.

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Hi Pauly! Yes, something is going on. T1 worldwide is increasing by about 3% per year. Mind you, the several thousand year old written descriptions of diabetes (from Turkey and Egypt) clearly show it has been around for a very long time, before DEET and pesticides. However, if it is increasing at 3% per year there must be some environmental factor.

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Has it been increasing by 3% per year all along, or just in the past few years? I don’t remember anything being said about T1 increasing in incidence until the mid-2000s.

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Hi Jennifer: The articles that I have seen have indicated an uptick in diagnoses since the 1950s. However, methods of reporting before that time were imperfect to say the least. Then you get further complicating factors: researchers have almost exclusively been looking at the T1 increase in the 20 and under age group, thus excluding the majority of new onset T1. In the United States, Type 1 diabetes is not a reportable disease. The diagnostic criteria used by physicians for diabetes fail to include tests that would distinguish between Type 1 and Type 2, despite the fact that they are two completely different diseases, so you have many if not most adult-onset Type 1s being misdiagnosed as having Type 2 diabetes. So it’s complicated!

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Does anyone have a phone contact for Dr Hirsh?

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Irl B Hirsch 206 598-4882 ihirsch@u.washington.edu

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The main thing I’ve learned on this site is that my T2 diabetes experience is soooo different from a typical T1’s. Yet my GP treats it all the same. I must have serious neuropathic complications, he says, because of years of high blood sugar. Not so. It came on quickly, was never terribly high (9.1) and quickly came under control with diet only and has stayed that way (4.9-5.3) for 3 years. There have been times when I was in a wheelchair from neuropathy and begged to see an endocrinologist, but was told “no” because my A1C was low so I must be doing great. You get that “D” slapped on your records and that’s as far as diagnosis and treatment go. Heaven help us if GPs are in charge. And while the only useful advice I’ve gotten is from savvy nurse practitioners, they are limited in what they can recommend. I wonder if endocrinologists are even what we really need to tackle some of these problems.

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I would ask for a GAD 65 antibody test. I also had a rapid onset too, and was treated like a T2 for 2 years by the endo. I did well for about 2 years with no meds and diet and exercise. After 2 years I had a routine office visit with the nurse practitioner in the endo office. The nurse practioner ordered the GAD65 antibody test for me on my first visit with him. It was positive. That meant my diagnosis was “Latent Autoimmune Diabetes in Adults (LADA),” a slower onset T1. My family doctor had never heard of that diagnosis. I had to explain it to her. Even worse, the original endo told me a year later that my diabetes was not autoimmune because I still had insulin. He did not even read the chart to see the diagnosis made by his NP! After 5.5 years, I start on the pump next week.
I can’t diagnose anything, but I do know you have to be your best advocate. Change doctors if necessary. Ask for the GAD 65 antibody test and educate the medical practitioner if they don’t know what they are doing. Or ask to talk to an NP who has to keep current and renew their license every 5 years.

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I am in arbitration with my health care provider . I begged to see an endo for years because my sugars kept escalating, The tester said too high to test. I was over 600. I had many bad experiences. I almost went un concious 3 times with lows in the thirities -seventies. I am standing up for better care . The cheif of medicine admitted in the grievance I filed that a mistake was made but the legal department brought in a legal consultant that blamed me. This is absurd, I come from a family of 3 diebetics two type 1 audult onset. I am struggling beyond belief. I am very concerned about people not being in a dangerous situation and receiving good care. i would welcome any letters that would like to be included as prove of this situation, I exercise and diet and look very healthy. I hope to bring about positive change and awareness to this date I have not found one doctor who is willing to speak up in the arbitration and hope to find one. I do have a good doctor now.but need someone to speak up on my side. The doctor I have can not because he works for the healthcare provider. I believe we all have to speak up for adequate care or this will continue.

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Getting back to Medicare, I think someone needs to educate Medicare admin that once you have type 1, you do NOT have to keep testing whether a person really has it every time they are due for a replacement pump!! Or even the first time for that matter. If you have had a medical diagnosis and been taking insulin for 18 years, like I had at time of my first pump, it is not only insulting, it is stupid and expensive to “verify” again that you actually have type 1 diabetes. It does not go away!!!
At least, I read on another forum that folks had to be retested with a c peptide test for the replacement pump. I am about to find out as I have ordered my third pump, but the first time when on Medicare.

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He does not include in his tally of adults with type 1 diabetes the very large group with what is often called “type 1.5” disease: that is, phenotypic type 2 disease with autoantibody positivity. Type 1.5 diabetes is roughly two- to threefold more common than classic childhood-onset type 1 diabetes, but there is not as yet agreement on how to classify it. He excludes them from the type 1 diabetes category because type 1.5 patients have major problems with obesity and metabolic syndrome, which are not issues in managing type 1 disease or LADA.

Melitta - I was reading this again and that jumped out at me. So Irl Hirsch is saying that you can be antibody positive yet still not be considered a T1 if you’re fat/have metabolic syndrome?

I remember reading in your blog post on needing a detective in the house, that according to the international committee on diabetes, antibody positive means T1? And that while the causes of T2 are unknown, in T2, there is no autoimmune beta cell destruction? So if i understand that correctly, it means if you have autoimmune beta cell loss, by definition that means it is NOT T2?

Isn’t there a major contradiction there?