I wrote this letter to Mr. Hagan in 2016. I never received a reply, and the ADA’s website has not been updated to reflect current knowledge of Type 1 diabetes, especially adult-onset Type 1 diabetes.
The American Diabetes Association (ADA) fights against the deadly consequences of diabetes and fights for those affected by diabetes. It also strives to provide objective and credible information related to both Type 1 and Type 2 diabetes. Currently the ADA is providing contradictory information around the prevalence of new-onset Type 1 diabetes in adults. As ADA strives to be the preeminent voice for those of us living with diabetes, it is imperative that the information put out by the ADA be scientifically correct, factually accurate, and most importantly consistent.
By virtue of the ADA website and in information ADA provides to media sources, ADA perpetuates the myth that Type 1 diabetes is typically diagnosed in children and young adults. Simultaneously, ADA’s scientific literature correctly identifies a large group of adults who are misdiagnosed as having Type 2 diabetes but who actually have Type 1 autoimmune diabetes, based on autoantibody testing, and in fact represent the largest group of new-onset Type 1 diabetes. For example, the ADA website says, “Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease.” And this is the same information that ADA provides to media when they seek statistics on Type 1 diabetes. Conversely, in ADA’s The Type 1 Diabetes Sourcebook (ADA/JDRF, 2013), Michael J. Haller MD says that adults with slowly progressive Type 1 diabetes (Footnote 1) may represent an additional 10% of those adults incorrectly diagnosed with Type 2 diabetes.
The first study that demonstrated that about 10% of study subjects with “Type 2” diabetes were autoantibody positive and actually had Type 1 diabetes was published in The Lancet in 1977 (Footnote 2). In the United Kingdom Prospective Diabetes Study (UKPDS), about 10% of people diagnosed with “Type 2” diabetes were found to be autoantibody positive and had been misdiagnosed. If ~10% of people diagnosed with “Type 2” diabetes are misdiagnosed and actually have Type 1 diabetes, as pointed out in ADA’s own The Type 1 Diabetes Sourcebook, then the vast majority of new-onset Type 1 autoimmune diabetes is seen in adults, not children; this fact has been widely reported in the scientific literature (Footnote 3).
Within the past several years, awareness of misdiagnosis has increased, and articles about the problem of misdiagnosis have been published in The Wall Street Journal, Prevention, and ADA’s Diabetes Forecast. As stated in a Wall Street Journal article on the problem of misdiagnosis (“Wrong Call: The Trouble Diagnosing Diabetes,” August 2012), "Most of my adult Type 1 patients have been misdiagnosed as having Type 2," says Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York. The Diabetes Forecast article was entitled “Diagnosing Type 1 in Adults: Why type 2 misdiagnoses abound—and what to do about it.” Sept/Oct 2015.
New United Kingdom Prime Minister Theresa May is a prime example of a person with adult-onset Type 1 diabetes who in 2012 was initially misdiagnosed as having Type 2 diabetes, based on age not etiology; Prime Minister May was 56 years old when first (mis)diagnosed. A 13 July 2016 Medscape article on Prime Minister May (“New UK Prime Minister Brings Spotlight to Type 1 Diabetes”) sheds light on adult-onset Type 1 diabetes and the problem of misdiagnosis. Two endocrinologists who specialize in type 1 diabetes, Simon Heller, MD, professor of clinical diabetes at the University of Sheffield, United Kingdom, and Irl B. Hirsch, MD, professor of medicine at the University of Washington, Seattle (Dr. Hirsch has Type 1 diabetes), offered Medscape Medical News their thoughts on Ms. May's type 1 diabetes. Heller and Hirsch say that unfortunately, like Ms. May, many adults with new-onset autoimmune diabetes are initially misdiagnosed with type 2 diabetes by medical doctors, who simply write a metformin prescription when they see high blood sugar without appreciating other clues such as excessive weight loss without trying, extreme thirst, frequent urination, and a family history of not only type 1 diabetes but other autoimmune conditions including celiac and thyroid disease. For such patients — or those who aren't heavy to begin with, although obesity does not rule out type 1 diabetes — ordering an autoantibody panel [GAD, IA-2, IAA, and ZnT8] will help in making the correct diagnosis, both experts said.
Kevin, as the CEO of the ADA, it is your responsibility to ensure the information ADA provides is scientifically correct, factually accurate, and most importantly consistent. Please change your website, and the information provided for media requests regarding Type 1 diabetes, to ensure that the information matches the scientific findings of your own organization. The financial cost of misdiagnosis is massive but the human cost is immeasurable. Misdiagnosis and not being treated immediately with exogenous insulin can result in rapid-onset of diabetes complications, diabetic ketoacidosis (DKA), and even death. Every person deserves correct diagnosis and treatment; it is past time that this tragedy ends. You can make this happen; it is as simple as making sure the voice of ADA clearly says, “Type 1 diabetes, an autoimmune disease, is diagnosed at all ages, from the very young to the very old. About 15% of people with diabetes have Type 1 diabetes.”
Thank you for your consideration. Those of us who were misdiagnosed and suffered the consequences, including me, want to be sure that that never happens to another human being.
Footnote 1: Published in ADA’s journal Diabetes Care, The Expert Panel on the Diagnosis and Classification of Diabetes Mellitus’s definition of Type 1 diabetes clearly encompasses all autoimmune diabetes, regardless of age of onset, and includes LADA/slowly progressive Type 1 diabetes (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults)).” The Type 1 Diabetes Sourcebook makes it clear that Type 1 diabetes and Type 2 diabetes are altogether different diseases.
Footnote 2: “Clinical and pathogenic significance of pancreatic-islet-cell antibodies in diabetics treated with oral hypoglycaemic agents.” The Lancet, Volume 309, No. 8020, p1025-1027, 14 May 1977.
Footnote 3: For example, “Diabetes at the crossroads: relevance of disease classification to pathophysiology and treatment” Diabetologia (2016) 59:13-20.