With the 10th annual Rare Disease Day just around the corner on Feb. 28, it's a perfect time to revisit the issue of "brittle diabetes" and how recognition of it as a rare disease (or lack thereof) has sparked a new wave of controversy recently.
Those watching the news wire may have caught some of the press releases, like the one in January screaming that the "American Diabetes Association Ignores Those Suffering with Brittle Diabetes" and another on Feb. 14 accusing the ADA of taking an "ostrich approach" to brittle diabetes.
The organization behind those announcements is the New York-based Brittle Diabetes Foundation (BDF), which has been lobbying everyone in sight to accept a new classification of "BT1D" (Brittle T1D), for those of us with extreme blood sugar instability.
While this Foundation has successfully lobbied the National Institutes of Health (NIH) to include brittle diabetes as a rare disease in its national database, and other orgs like the JDRF and American Diabetes Association have at least acknowledged it to some extent, the BDF does not believe the ADA has gone far enough -- and is spending a lot of energy on calling out the country's largest diabetes organization over it.
Specifically, the BDF (not to be confused with your Best Diabetes Friend) is blasting the ADA for not including brittle diabetes in its 2017 Standards of Care, an omission the BDF describes as “disgraceful and sad," and they claim it ignores “some 4,500 US residents and 150,000 worldwide diagnosed with BT1D.”
Whoa! Sounds pretty serious, no?!
When this foundation was formed back in 2013, DiabetesMine reported on its origins -- along with the new NIH designation -- and found in large part that medical professionals viewed "brittle" as an outdated term that should no longer be used in official diagnoses, and that's often used loosely to describe dramatic blood sugar swings.
It doesn't appear much has changed on that front among medical professionals, and certainly no official diagnosis code exists for "brittle diabetes." So what's all the current brouhaha about? Is this really an issue the ADA is neglecting, and ought to be addressing in 2017?
Brittle Diabetes Origins
Historically, the label of "brittle diabetes" first appeared in the pre-glucometer days of the 1940s, and was used to describe patients who regularly suffered from both severe hypoglycemia and DKA. Later it evolved into a non-diagnostic term for any diabetes that was simply more damned difficult to control than typical diabetes, characterized by radical -- some would say inexplicable -- swings in glucose levels.
While a number of different schemes have been
But even from day one, there’s been controversy over whether or not it’s a medically-appropriate label, and over the last few decades the term has been decreasing in popularity in clinical circles. In fact, had it not been for the BDF, the term would most likely have become extinct.
A Personal Quest
As we previously reported, the Brittle Diabetes Foundation is based in East Norwich, New York, and headed by founder Dr. Manny Sorge, a retired college professor and recycling expert. Dr. Sorge started the BDF after nearly losing his 40-year-old daughter to what he believes was brittle diabetes. The organization has become his full-time job, although he acknowledges he's not paid for the 25-30 hours a week he puts in.
Sorge’s efforts have led to brittle diabetes being listed in the GARD, the National Institutes of Health Generic and Rare Diseases register, and, he claims, is also being recognized by the JDRF -- although the only mention of it on the JDRF website is a single blog post. When we reached out to clarify, JDRF Public Relations and Communications Manager Kristy Evans simply stated that "the NIH recognizes brittle diabetes in its register, and so JDRF recognizes it as well.”
Despite two “wins,” he clearly believes his quest is far from over. The BDF’s mission statement includes the goal of convicing the World Health Organization (WHO), International Diabetes Federation (IDF), and ADA all to “recognize the existence of brittle diabetes as a rare disease that is a separate and distinct form of type 1 diabetes.”
Calling a Spade a Spade
Even the BDF admits on their website that, “brittleness has a cause. When determined, and treated successfully, (the) individual reverts to stable type 1 condition without the seesaw effect.” In a separate section, the BDF lists 18 diseases and disorders that they say cause brittle diabetes, either individually or together. These include Addison’s, celiac, Cushing’s, hemochromatosis, scleroderma, and even vitamin D deficiency, as well as the diabetes complication gastroparesis. They also list depression as a cause of brittle diabetes, and in fact state, “people dealing with psychosocial problems, those dealing with stress or depression, are at the highest risk.”
Uh… wait a second here.
If a second medical condition, a comorbidity, or a psychosocial issue is frustrating efforts at blood glucose control, that needs to be addressed. BDF is correct on that score. But demanding that a constellation of complication factors deserves a separate diagnostic label as an entirely unique form of diabetes...?
By that logic, we’d also need to create independent classifications for all the various conditions and circumstances that lead to poor blood sugar control, including a special label for TPFP (Too Poor For Supplies) and NGB (Not Gonna Bother) for folks who are truly not motivated and don’t even attempt to control their diabetes.
And I think we can all agree that would be ridiculous.
The fact is, brittle diabetes is not some unique strain, but rather a state of affairs in which T1D is poorly controlled, for a variety of reasons. Even the BDF folks don’t suggest a unique treatment for brittle diabetes, other than identifying and treating the secondary condition that's making BG control difficult.
In short, "brittle diabetes" appears to be diabetes + something that's making it really hard to control.
Why a New Classification?
We reached out to Sorge to pose just that question: Why exactly does "diabetes + something making it hard to control" need to be recognized as a separate and unique illness?
“Since we have a finding and classification [from the NIH’s GARD listing] of BT1D as a rare disease, common sense suggests that it must be uniquely different from that of stable T1D,” he replied.
Well, that’s rather a Catch-22, isn’t it? His organization convinced the NIH to list it as a rare disease, so now it must be unique and separate? Strikes us as uncommon sense.
That aside, Sorge has a long list of perceived benefits to patients that would follow if the ADA recognized BT1D, chief among them that “frustrated” physicians would “have proper guidance in the care of BT1D patients.”
But not all doctors agree with that assessment, and just think this through for a moment:
If you're living with type 1 and are depressed, and as a result have "brittle diabetes," and then receive counseling to overcome the depression and your extreme blood sugar swings cease, are you then "cured"?
See the flawed logic here?
We queried Joslin Diabetes Center's Chief Medical Officer Dr. Robert Gabbay for a leading endorinologist's POV. He didn't hesitate to say that you’d “rarely, if ever” hear an endo use the word "brittle" these days, and that it’s mostly used in the primary care arena as a label for people who have difficulty managing their diabetes.
Gabbay doesn’t care for the term, he says, because he feels that it gives primary care providers an easy excuse “not to delve deeper” when working on difficult cases. He says, “It’s almost like saying, ‘I give up, you have brittle diabetes.’”
So rather than giving primary care docs a leg up, as the BDF envisions, adoption of the label could actually lead to a reduction in care efforts?
Gabbay says most cases of difficult-to-control diabetes can be sorted out and helped, although he does admit that there's a small percentage of patients who continue to have highly variable BG levels despite all efforts to the contrary.
So what does Gabbay call someone with crazy-fluctuating blood sugars, if not brittle?
A “patient with a lot of glucose variability," he says.
After the Jan. 17 blast, the BDF issued a second, more reasonably toned press release on Jan. 31 that promoted its own work and detailed its efforts trying to get the ADA to recognize brittle diabetes more officially. Yet then the third on Valentine’s Day that included rhetoric like “the ADA has turned a deaf ear,” a veiled threat that said future releases would address the “need for targeting donor funds,” and a call for “members of the medical community and researchers in this field to end their silence and become a collective voice for BT1D-diagnosed patients who continue to be ignored.”
What’s the ADA’s stance on all of this? We asked.
Immediate Past President Dr. Desmond Schatz told us via email that the ADA’s view is: “While all people with type 1 diabetes endure fluctuations in blood glucose levels, some people struggle to find a regimen that keeps their blood glucose stable, despite significant effort... This severe instability is sometimes referred to as 'brittle' diabetes and should be addressed in close collaboration with a diabetes care team.”
He goes on to say that since no two patients are exactly alike, ADA has "consistently promoted an individual diabetes care plan -- it is a core tenet of our Standards of Care and inherent in the Association’s treatment guidelines."
He wraps with: “The Association remains committed to supporting every person throughout their journey with diabetes and will continue to evaluate special concerns, including extreme variability in blood glucose levels, to ensure that our guidelines are in line with the most current data and evidence.”
Meanwhile, Sorge continues to rail at the lack of an official "brittle diabetes" program, stating in his most recent press release, “Isn’t it about time that the ADA live up to their mission statement to “improve the lives of all people affected by diabetes?”
It's an interesting stand-off, but not a very productive one to our minds. In our opinion, the energy expelled in this "fight" could be put to better use. You know, like for managing the glucose swings that all of us experience and figuring out what works best to tame them. After all, Your Diabetes May Vary.
Dear Readers: What do you all think? Is clearer recognition of "brittle diabetes" important at all to you?