August 22, 2007

Why not Choose a Person with Diabetes to head the ADA?

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?

Copyright Janet Ruhl 2007. If you are NOT reading this on the content has been STOLEN.


Ralph said...

I can think of words for the ADA but will not post them. All of us should create our own organization and cure this disease with our efforts. With all of the good fighters out there we need a group of US to step up and do it correctly.

Robin said...

Jennie - I think it might be time to get that second association going. Its big tent should include those who 1. meter controlled carb consumption, acknowledging that it is the patient's right to choose the level of control, while taking responsibility for the consequences.

2. Best science evaluation of the varous drugs available. Some research money solicited for generic and 'natural drugs', ie, ALA and Evening Primrose Oil

3 Lobby for availability of more varieties of insulin, by importation if necessary. Particularly generics that are as good or better than what is now available

4. Needles designed for the lower doses most of us should be taking, if we are eating right.

5. Meters and strips at the price those not on insurance can affort.

6. Research to establish at what BGs medications ideally should start at.

Jenny said...


Great ideas!

As I see it the mission of such a group would be this. Instead of the "cure" focus of the other groups, lets USE WHAT WE ALREADY KNOW TO PREVENT COMPLICATIONS NOW!

Here, in no particular order are some other ideas besides your excellent suggestions that are worth some thought:

1. Lobbying congress to investigate why test strips keep getting more expensive when every other tech device comes down in price.

2. Fund Loaner program so everyone can use a CGMS system for a week that needs one.

3. Outreach to doctors educating them on key points:

a. Every patient needs to know that it is carbs that raise blood sugar and that an effective Diabetes Diet needs to cut back on carbs until normal blood sugars are reached.

b. Every patient should be informed that normal blood sugar IS possible for people with diabetes, that many of us achieve them, and that normal blood sugars will completely prevent complications.

c. Doctors should not tell patients with Type 2 that A1cs in the 7% range are "good control" since that level goes with a high incidence of retinopathy and neuropathy. Give patients the truth and help them attain the levels that REALLY are good control.

susie said...

not familiar with ada being scottish but love what u have written and agree with what u have said

Robin said...

Jennie - I am just newly ticked off, I had decided it was time to start taking fractional doses of Regular Insulin. Walmart did not know about dilutents but they were willing to get them if I would do a little research.

Guess what! Novodisk has quit making dilutent for regular insulin. The gal did say that you could use saline solution, but with no preservatives for a one time use only. Hmmmmm. Would you have any information that would allow a longer time.

Dr. Bernstein mentions saline for one of the long acting insulins, and says nothing about it being a danger.

By the way, your suggestions regarding the new association are obviously right in line with what many of us want. I would be willing to invest time and money. Rob

Jenny said...


I don't know anything about diluting insulin, but you might try Lilly as they also make R. Beyond that, there are already preservatives in the insulin and saline should be sterile. Probably not a biggie.


The ADA affects people with diabetes around the world because the diagnostic criteria and practice recommendations they come out with usually get picked up by WHO and other such organizations. They are the 600 pound gorilla of the Diabetes world.

Scott said...

The ADA has always been an organization of doctors for the medical profession, not a patient organization no matter what their charter or mission statement may claim.

But there does need to be more patient input into an organization claiming to be representing the needs of patients, and the fact that so few people say anything about the ADA's leadership is a de facto approval of the choices that are made. Now, I haven't a clue whom we should direct our efforts, but increasingly, I am thinking that it may be better to go the route of "dissident shareholders" leaving and starting their own organization!!

Anonymous said...

Yes Its time for a leader who is more compassionate to all of us who have diabetes and yes there are CEO candidates out there who have diabetes. The ADA volunteers even had a few but let them go

After a year on the job, Mr Hausner has proven that he is not up to the task as he thinks everything is about marketing. He holds no compassion or knowledge for/about the people he is supposed to serve.

I work for the ADA and continue to be shocked by his lack of vision for the the diabetes community outside of more marketing more marketing.

I am remaining anonymous because I did not want to be fired like the 75 staff he "layed off" 1 week before Christmas

AS a ADA staffer, I am asking that you volunteers and those affected by diabetes demand more from the ADA and ask the serious questions about how they are spending their money