Addendum to President Trump's Letter
Five years ago, Brittle Diabetes Foundation (BDF) asked the NIH for a review of the medical literature questioning whether Brittle Type 1 Diabetes (BT1D) should be considered a rare disease based on medical findings in some 700 peer reviewed research papers. Six months later, July 2013 the NIH established a GARD ( Genetic and Rare Disease) website highlighting, for the first time, the existence of this rare disease. It also recognized our Foundation, after vetting, as supporting this ailment, with links to our website. NIH letters received from patients written by GARD specialists to public queries about Brittle Diabetes always included referral to pages on BDF’s website.
This cooperative relationship continued for four years until BDF challenged the American Diabetes Association’s (ADA’s) lack of recognition for this disease and ADA’s failure to provide guidance to physicians regarding the proper treatment of BT1D patients.
BDF had submitted a 14 page proposal seeking reclassification of Brittle Diabetes as a real disease to ADA’s Professional Practice Committee in 2016. Their answer was to ignore the diseases existence in their 2017 Standards of Medical Care for Diabetes
As a result, BDF embarked on a public relations campaign aimed at calling ADA to task in a series of press releases: January - ADA ignores those suffering with Brittle Type 1 Diabetes and February - ADA.takes an Ostrich Approach to Brittle Diabetes.
On March 13, 2017, the NIH removed BDF and other NPO's as resources for BT1D patients and families after the NIDDK was approached by unidentified “experts”. The two organizations who do not recognize Brittle Diabetes as a rare disease despite medical research evidence to the contrary, were substituted as primary resources, viz., ADA and NIDDK.
On April 25 th, BDF wrote Dr. Collins asking why our cooperative venture had suddenly come to an end. As a result of Dr. Kaufmann’s reply we had to ask “Is Brittle Type 1 Diabetes (BT1D) a disease or isn’t it? Given that over the years, the NIH has spent millions on finding a cure for Brittle Diabetes or employing diagnostic criteria to distinguish Brittle T1D from stable T1D, or the fact that BT1D is listed by GARD, you would think the answer would be a no brainer. Nearly four months later, no one in his chain of command to whom he passed off the questions, including Dr. Petra Kaufman Director ORDR, Dr. Anne Pariser, Deputy Director, ORDR; Dr. Griffin Rodgers Director of NIDDK or Dr. Judith Fradkin Director, Division of Diabetes were able to answer either question.
Their response was always “current scientific evidence” resulted in changes. But, when asked to cite one scientific paper to support their position, the silence was deafening.
Mr. President, BT1D is generally diagnosed by a team of physicians who under controlled environmental conditions namely a hospital setting, find that they are unable to stabilize their patient’s blood glucose levels even after prolonged stays. These patients are considered uncontrollable, unstable and unpredictable not “ harder to control” which is what ADA would have you believe.
As long as practicing physicians continue to diagnose patients with BT1D, BDF will continue to seek recognition for Brittle Diabetes as a disease separate and distinct from stable T1D..Thank you for taking time to listen. Emanuel V. Sorge Ph.D. Chairman/President -BDF