LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Wednesday, December 15, 2010

Don’t judge people by their organization


I’m the innocent bystander
Somehow I got stuck
Between the rock
And a hard place

And I’m down on my luck
Yes I’m down on my luck
Well I’m down on my luck

I’m hiding in Honduras
I’m a desperate man
Send lawyers, guns, and money
The shit has hit the fan

--Warren Zevon, 1978


The American Diabetes Association frequently pisses me off.

So much so, and so often, that I don’t even know why I keep expecting better of them. I’ve long maintained that all the ADA is interested in, if you are a diabetic, is your wallet.

Which would be OK, if they were more up front about it. They are, after all, an organization by, for, and about doctors. I guess my main issue is they market themselves as THE organization for people with diabetes, and frankly, that’s a lie.

Don’t get me wrong, I’m glad the ADA exists. They excel at what they excel at. Research. Setting standards. Educating doctors. And, when the shit has hit the fan, they are the lawyers, guns, and money folks.

Well, maybe just lawyers and money. But when you have a problem with the government and diabetes, they’ve got your back. Taking on “the man” is one of the things they are good at. Fired from your job ‘cause of the big D? School hassling your kid over taking shots at school? Cops throw you in jail for being hypo?

Call the ADA.

The ADA really is the White Hat Sherriff when it comes to laws that protect those of us with diabetes. They are also always on the lookout for new and wrongful laws that effect us, and their legislative advocacy has shot down many a law that would chill you to your bones before it even had a chance to take effect.

But where the hypocrisy hits the fan is in the way the ADA presents itself as a caring educational organization. In this arena, the ADA is like a law book with a dust jacket disguising itself as a romance.

A major failing of the ADA is what the rest of us learned in kindergarten: the world is a better place when we all place nice together in the sand box. Two appalling examples of this come to mind. First is the ADA’s refusal to really join in with the International Diabetes Federation on things of common interest, like, oh I don’t know…maybe World Diabetes Day?

The ADA has me seeing red by sticking with red (with no logo) as the color of diabetes while everyone else has gone United Nations blue with a cool circle logo. You all know the pink ribbon, right? Every year a little over 200,000 women in the U.S. are dx’d with breast cancer while well over one-and-a-half million Americans are dx’d with diabetes. I’m not trying to belittle the horrors of breast cancer. I’m just saying they have a better PR firm than we do. In terms of annual growth, we’ve got ten times the numbers but even most health care workers don’t recognize the blue circle. And having one of our flag ship organizations refuse to play with anyone else isn’t helping.

Anyway, I’ve gotten off track again. I had said there were two appalling examples of the ADA’s lack of kindergarten decorum. The second one pisses me off more, as it effects me personally as an author.

The ADA won’t in anyway promote a book that it didn’t publish.

I’ve known this for a long time. But I thought, stupidly, that maybe they might help out with promoting the free Tiger e-books for the newly diagnosed, seeing as they think they are the ultimate help-the-poor-diabetics organization.

So I crafted a plea and fired it off to them. 48 hours later I had my answer from a lady at their “Center for Information and Community Support.” I think I’ll just quote directly from the letter:

“Thank you for contacting the American Diabetes Association. We have received your e-mail regarding a resource.

Unfortunately, I am unable to assist you. As a rule we don’t promote or endorse non-ADA-published books. If you would like to advertise in our journals, please visit us at: www.diabetes.org/adrates

Checking the rates in Diabetes Forecast, which the ADA modestly calls “the premier consumer publication of the world’s authority on diabetes,” I find that a single ad ranges in price from a low of $5,920 to a high of $25,990. Ummm…. OK, I don’t even make $25,990 per year in the first place (almost, but not quite). And of course, running an ad only once is pretty useless. It needs to be seen again and again. All the time. But even their smallest B&W ad, at almost 6 grand per month, for something that is free is just bad economics.

Oh yeah. Then they tried to sell me a membership and asked me to donate my time by “becoming an advocate or by getting involved through volunteering or participating in a local event.”

“Local event” is ADA slang for fund raiser.

OK. So let me get this straight. You won’t help me get the news out about something that’s free unless I pay you. But you want me to give you my time to help you raise money?

Huh.

Is there something wrong with this picture?

But before my blood pressure got too high, I got another email from the ADA. Different department. Different person. Different tone.

This person went to the Red Blood Cell Books site, and Amazon. And TuDiabetes. And Diabetes Living Today. This person read the reviews and commented that the Tiger books get “enthusiastic reviews” and seem “quite popular and effective.” The letter writer went on to say:

“I can tell that word will get out about the book. Unfortunately, the ADA is a bit more restrictive. Our current policy does not allow us to promote or distribute non-ADA-published books through our online resources or conference bookstores. We’ve had that policy for awhile and I know it won’t change in the near future.”

So I was still in the same sinking boat I was in before, but I felt better about it. It also served as a really important reminder. Organizations are like living organisms. Just as creatures are made up of individual cells with various functions, appearances, and personalities; so too organizations are made up of individual people. Each of those people has a mind of their own. They may not agree with the direction this ship is sailing in, but there is a limit to what they can do as a member of the crew.

What we need to remember is that any single person who works for an organization is not some kind of clone. We can (and should, must) fight to keep our organization’s feet to the fire. When an outfit like the ADA claims to be the “world’s authority on diabetes” we need to call them out on it. And keep calling them out on it until they become what they claim or stop lying about it.

But, but, but… We must never get personal about it. We must keep the high ground and remember that some (many, even most?) of the people in the organization may agree with us. Politics in our county has gotten revoltingly personal. We must be sure to not let our revolution fall to the same level. We need to speak with integrity about facts, and not fall to name calling.

Unlike those fuck-faces over at the ADA who… ah… oh…

Oops.

4 Comments:

Blogger Reyna said...

Still laughing at the last sentence Wil!

OK, you know I never thought about the blue circle thing Wil. You have a point. AND...on your book, is there any way we bloggers can help? I know I am small potatoes but I would help out in any way to promote education and dissemination of information to help others.

AND you are right...the individuals are not to blame...play nice...blah, blah, blah...fuck-faces!

8:08 AM  
Blogger Michael Hoskins said...

Completely agree, Wil. Though, I must admit that the local chapter here in Indy seems to be different than what I've seen from other chapters and at that national level. They play nice with the JDRF and others, and that's very encouraging to me... especilly when I hear from outsiders that others nationally are looking to the Indy folk as trend-setters for the broader picture. We can hope, and play a part, to hopefully make it so the types of things we're so used to don't stay the norm. Thanks for the post, Wil.

4:09 PM  
Blogger Scott said...

Wil, You get no disagreement from me; I asked them at the Roche meeting to explain how they weren't a professional doctors' organization, and after their explanation, I am still not convinced by what they tried to tell us. Transparency is something the ADA is not good at now, nor have they ever been, but they need to get better at.

8:39 PM  
Blogger Penny said...

Oh Wil, you never fail to crack me up and educate me at the same time. I don't give a lot of time or effort or attention to ADA cause frankly, Diabetes Forecast well, sucks as far as I am concerned. Lots of recipes, as all I need to be concerned with is just cooking the right foods. Wrong slant to me as the 'premier magazine for diabetes' I unsubscribed after one year, that was enough recipes for me, thank you.

I hear you about the whole blue circle deal. They'll be damned if the color for diabetes is NOT red damn it - is almost their stance. It's like them saying they came in second in the race.

I think bloggers can help, like you said. I am going to post on my blog and ask all the people that read me to post on their blogs and get the word out about your books. We can do what they refuse to do. I got nothing to do all day but count carbs and bolus for an 8 year old, what the hell :0)

4:16 AM  

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