Response to Wil Dubois' Article in Diabetes Mine 2/21/2017
BDF urges all BT1D’s to seek assistance from Board Certified Endocrinologists specializing in diabetes care. My daughter’s healthcare team which included an endocrinologist, diagnosed her with Brittle Type 1 Diabetes (BT1D) . I did not. Despite my background in the biological sciences, I had never heard of Brittle Diabetes. After 22 days, her healthcare team, under controlled hospital conditions realized that they could not stabilize her blood sugars. BDF represents those who have been diagnosed with BT1D, usually by endocrinologists, members of the medical community that the American Diabetes Association (ADA) claims to be guiding. The appropriate question is Why did the ADA omit any mention of this rare disease in their 2017 Standards of Care (SOC) given the overwhelming evidence available for its existence?
I rather suspect Mr. Dubois, if you had to deal with the daily symptoms experienced by BT1D’s, you might not be so quick to dismiss BDF’s advocacy efforts for BT1D recognition. Those that suffer with BT1D symptoms are looking for relief that can only be provided by informed physicians. BDF’s suggestion to ADA to provide regional panels of experts to assist physicians with difficult BT1D cases continues to fall on deaf ears.
Who is out of step with reality? The NIH that has funded clinical trials for the cure of Brittle Type 1 Diabetes; JDRF, the leading researcher of T1D; the thousands of physicians who have diagnosed their patients with BT1D; the medical researchers that continue to publish BT1D articles in recognized journals; or the ADA?
Regarding terminology, ADA’s own research journal, Diabetes Care, through 2017, has published 347 research papers employing the terms, Brittle Diabetes, Brittle Type 1 Diabetes and brittleness. And yet, they omit any mention of its existence in their SOC. The 1,100 research articles written on the subject, many in the last ten years, is strong evidence that these terms are presently being employed globally by members of the medical community.
You have led your readers to believe that there is no readily acceptable definition for Brittle Type 1 Diabetes which is far from the truth. The components of that definition include: a rare insulin dependent disease characterized by severe instability of BG levels with frequent and unpredictable episodes of hypoglycemia and/or ketoacidosis that disrupt quality of daily life, often requiring frequent or prolonged hospitalizations and for which a secondary cause exists, some known, some yet to be discovered.
Desmond Schatz, ADA’s past President, basically ignored the question of whether Brittle Diabetes differs from stable T1D. It is interesting to note that ADA doesn’t deny the existence of BT1D, they have chosen to ignore it to the detriment of those suffering with this ailment.
ADA would have us believe that all T1D’s are the same, except for glycemic variability. That there are only some people who are harder to control but with more diligent monitoring, they too can be managed. And yet, you quote Dr. Gabbay as admitting “that there’s a small percentage of patients who continue to have highly variable BG levels despite all efforts to the contrary”. It is this very group of individuals within the PWD community that BDF represents. They are unstable, uncontrollable and unpredictable. They are not factitious. They are brittle.
BDF believes it necessary to customize treatment for BT1D’s to eliminate brittleness returning the patient to a more stable T1D state. This is not likely to occur if physicians are not properly guided in the treatment of those exhibiting extremes in glycemic variability. This is where ADA does a disservice to BT1D’s.
When Dr. Gabbay suggested that endocrinologists rarely employ the term brittle shouldn’t surprise anyone when you consider the probability of any endocrinologist or diabetes educator ever getting to see a brittle diabetic within their practice. Out of an estimated 28 million PWD’s, BDF suggests that numerically there are some 4,500 individuals within the US who fit this rare uncontrollable group.
There is growing evidence that researchers are beginning to separate stable from uncontrollable T1D’s in clinical research and that diagnostic criteria are evolving to distinguish between these two disease states. In fact, the NIH is presently funding a clinical trial predicated on the use of diagnostic criteria to distinguish between the two.
Our thanks to Healthline and Diabetes Mine for, once again, shining the light on Brittle Type 1 Diabetes.
Manny Sorge Ph.D. - President/BDF