Aug. 24, 2017 – The Brittle Diabetes Foundation (BDF) expected that taxpayer funding, amounting to 32 billion dollars/year, should have resulted in at least one cogent response from the National Institutes of Health (NIH) to BDF’s question – Is Brittle Type 1 Diabetes (BT1D) a rare disease? BDF provided the NIH with ample cited evidence from peer reviewed journals to support BDF’s position that BT1D is a disease and not just a term.
But when asked to reciprocate, NIH’s leading researchers failed to cite a single scientific research paper to support their position that Brittle Diabetes is only a term used based on “current scientific evidence.” In the words of President Trump “How Sad.”
According to the National Institutes of Health (NIH) Genetics and Rare Diseases (GARD)’s website “GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases”… “Each disease has its own webpage” including Brittle Diabetes.
And yet, four Directors within the NIH recently hid behind a website disclaimer that Dr. Petra Kaufmann Director Officeof Rare Disease Research paraphrased – “GARD does not provide official recognition of any rare or not-rare disease; instead, it uses disease pages to disperse information.”
The disclaimer states that all diseases on GARD’s rare disease list (approx.. 6,500) are not officially recognized as diseases by the NIH or any Federal Agency. This would include hemophilia, cystic fibrosis, Lou Gehrig’s disease and other publicly known rare ailments.
This is the battle that has gone on since April when BDF wrote Dr. Francis Collins, Director of the NIH, asking him to explain changes made to GARD’s Brittle Diabetes website relegating BT1D to being just a term and removing all Non Profit Organizations who support or advocate on behalf of those diagnosed with Brittle Diabetes.
There was no objection by GARD when BDF informed them on August 18, 2013 that BDF was updating its website to include what we logically assumed was the NIH decision to recognize BD as a rare disease and as a separate form of type 1 by BD’s addition to the GARD list (July 2013).
It wasn’t until July 2016 that NIH voiced an objection to BDF’s stated position after BDF had gone head to head with the American Diabetes Association who has been attempting to eliminate the terms brittle, brittleness, brittle diabetes and uncontrollable from medical literature – a position now apparently adopted by NIDDK/NIH – the only two organizational resources now listed by GARD.
As long as physicians continue to diagnose their patients with Brittle Diabetes, BDF will continue to advocate for BT1D patients.
Note: Most experts would define brittle diabetes as severe instability of blood glucose levels with frequent and unpredictable episodes of hypoglycemia (low sugar) and/or ketoacidosis (high sugar) that disrupt quality of life. Brittle diabetic patients virtually always have type 1 diabetes.