The ADA just announced that they’ve brought in Laurence Hausner to head
the organization. Housner is a businessman who is an expert in
“branding” whose last two jobs involved leading the Multiple Sclerosis
Society and The Leukemia & Lymphoma Society where it appears
enhanced fundraising was a major achievement of his leadership.
The ADA press release announcing his appointment
says of his work at the Leukemia & Lymphoma Society, “As Chief
Operating Officer, Hausner had oversight and management of all of the
Society’s operations, including revenue generation, finance,
information technology, patient services, public policy, marketing,
human resources and field management.”
What the ADA’s new CEO isn’t
is a person with diabetes. Which means that there isn’t a hope in hell
that he will push the organization to change the toxic advice it keeps
giving people with diabetes–such as the advice posted on their web
site that it might be dangerous for any person with diabetes to strive
for “tight control” defined as a blood sugar of 180 mg/dl 2 hours after
a meal and that bananas, oatmeal, and bread are the ideal diet for a
person with diabetes–even those controlling their blood sugar with
“diet” alone.
Clearly this new CEO’s mission will be to raise
even more money and build the ADA brand. That means avoiding any policy
shifts that might annoy the ADA’s top donors who include Cadbury
Schweppes (the candy maker) and the bunch of other snack food purveyors
who fund the organization now, as well as the drug companies that make
the oral drugs the ADA’s educational material treat as the only
legitimate treatment for the very high blood sugars caused by the
“diabetic” diet of high carb foods they have spent a fortune promoting
to dietitians and doctors.
Is it really possible there isn’t a qualified executive out there who has diabetes?
Someone who might not see diabetes as “a heartbreaking disease” to use
Hausner’s words, but as a challenge that they have personally
surmounted? Someone who has actually tested his or her blood sugar
after a high carb meal and has some clue as to what it takes to avoid
high blood sugars?
It’s hard to believe there isn’t. But it has
been clear for years that the ADA is not an organization that answers
to people with diabetes. Instead, it appears to serve those who profit
from those who have diabetes, be it the doctors who treat their endless
series of complications, the drug companies who sell them thousands of
dollars worth of drugs a year, and the food companies who sell them
crap that raises their blood sugar despite the ADA logo on the label.
So that leads me to one last question: Why do we people with diabetes let an organization full of people who don’t have diabetes represent our disorder and be its voice in the world at large? Why do we let them define the appropriate treatments for our
condition when they make it clear that they are driven by concerns
other than attaining normal health for people with diabetes?
Finally,
when will people with diabetes band together and start an organization
that has as its primary concern NOT the building of the Diabetes
brand–not the slathering of that brand on products guaranteed to raise
the blood sugar of people with diabetes–but to spreading the knowledge
that we already have of what it takes to achieve normal health after a diagnosis of diabetes.
An
American Association of People With Diabetes might dedicate itself to
teaching the public that that people who achieve normal blood sugars,
no matter what their diagnosis, can have normal health, that they
shouldn’t settle for the dangerously high blood sugars the ADA has
taught their doctors to call “good control,” that the ADA’s recommended
A1c of 7% has been proven to lead to severe complications for most
people with Type 2 diabetes and many with Type 1. Such an organization
that might actually get across to the rest of the public at risk of
diabetes and to the media that if you cut back on sugar and starch you
can bring down your blood sugar because it is carbs, not fat, that harm
the health of people with diabetes!
What a dreamer, eh?
----
This is a repost of a posting from my regular blog, Diabetes Update. It’s one I feel very strongly about, which is why I am posting it here too!
Golly, gee, Jenny. What do you REALLY think?
Personally, it does not offend me that the ADA chooses a fundraiser and a non-diabetic as its head. After all, the ADA is all about raising money to fund research and to advocate for diabetics. If its standards for control are less stringent than some think it should be - well there’s a whole blogosphere and bookstores full of literature explaining how the standards are wrong.
Even if the new leader of the ADA were a diabetic who advocated tight control, his or her primary duty would be the same - raise money. Get the loot. Increase membership. For that reason their message has to be ‘good enough’ control not Dr. Bernstein-like ‘BGs the same as a non-diabetic.’
The fact is, most people aren’t willing to work that hard at it and many of them, with good reason, are mortally fearful of hypoglycemia. Hell, my endo freaked out at me when she saw three in a week, even though all were mild cases.
How many organizations that are advocating for the end of a disease and fair treatment of its ‘victims’ also have a ‘victim’ at the helm? Not one comes to mind - although I am woefully uninformed about who heads what group.
Their primary goal is to raise money and spend it on research. Unless the ADA is found to be enriching its board of directors or management or actively hurting people it pretends to help - it can pick whoever it wants to lead and it should pick the person who best serves its mission - raise bucks.
For myself, I advocate tight control and I admit that I was misled by the ADA standards after I was first diagnosed. But I learned better by educating myself, often through resources I was led to by the ADA. I learned much from it’s magazine, although I also admit being flumoxed many times by the recipes and diet recommended in its pages. Stuff I wouldn’t eat.
As long as there are people like you, Jenny, advocating for tighter control and demanding tighter standards, the word will get out that the ADA standards need another look. It’s refreshing to see such passion. Send me an application for the AAPWD if you have one. 
I wonder if any other group with a chronic condition like diabetes has such a large and vocal presence on the web? My view is kind of myopic since I don’t visit sites for, say celiac disease.
Just a thought.
Terry
Hear, hear!
With overtones of Gallaudet.
Terry,
I think that the online diabetes community is so large because 1) there are more people with diabetes than there are with most other chronic conditions
2) It’s a condition where you CAN do something about it and support helps.
I have another condition where you can’t do much but just hope it won’t flare up. I found with that condition that posting on the support group made me MORE aware of the symptoms and therefore I’d feel worse. The less I think about conditions I can do nothing about, the better off I am.
But with diabetes, if you think about it, it helps you remember that you really don’t need to eat that plate of fries and there are other people out there who are dealing with the same thing and that many of them have tips that can really help.
So I think it is the fact that you can actively fight diabetes and win that makes the support community so strong.
As far as advocating goes, well, I’ve always been out on the trenches fighting the good fight for something. It keeps me young!
But the ADA’s bad advice hurt me a lot worse than by telling me to eat bananas. Their faulty diagnostic criteria and the way they fought against the use of OGTTs for diagnosis which meant that insurers wouldn’t pay for them or doctors recommend them kept me from getting diagnosed for at least a decade.
I have recently read that disc problems may be caused by compromised blood supply and I really wonder now if I’d gotten diagnosed in 1985 instead of 1998 whether I’d have the serious orthopedic problems I have now. I had abnormal blood sugars diagnosed on OGTT since 1978! (1985 was my second GD pregnancy at normal weight.) But my doctors followed the ADA line and only gave me fasting glucose tests so all those very high post meal blood sugars went unnoticed.
Just to show you how uninformed I am, I had to look up “OGTT.”
If the ADA is setting criteria for diagnosis - that is a bad thing. A very bad thing. What would be worse (or is worse) is that the medical community would allow an advocacy group to set the standards. Although the organization is likely to set the bar low, in order to increase its constituency, I would fear that it’s standards are as much political as scientific, if not more so.
I’m keeping my eye on the ADA. I will give it credit, though, for teaching me to take care of and advocate for myself.
Thanks for the heads-up.
Terry
Terry,
The history of how the ADA fought AGAINST diagnosing people with Type 2 diabetes until they had had high blood sugars for long enough to cause complications BEFORE diagnosis can be found here:
http://www.phlaunt.com/diabetes/14046782.php
Geez, Jenny - you’ve given me way to much to think about, regarding the ADA! I am not a member of that organziation, but find it surprising that they (according to what you said) seem to advocate not very stringent control and a “victim” mentality if you will, for diabetics.
Thanks for the food for thought though.