Problems with ADA?

She was fired after not endorsing Splenda-filled salads to people with diabetes. Why?
Elizabeth Hanna says she was fired by the American Diabetes Association after refusing to approve recipes heaped with the additive made by a major donor
The Guardian: She was fired after not endorsing Splenda-filled salads to people with diabetes. Why?
I have long been told that the ADA is not an ally of diabetics but of the donors it serves. This article pretty much sums it up. I have often wondered how or if we can effect change - would be interested in your thoughts.

“The United States has some of the best medical research institutions in the world,” according to the article, but we also score pretty low amongst the top 50 healthiest nations. For diabetics, I think a large part of the answer is to quit blaming others, get a CGM, and eat and dose to your CGM if you really care about your health. Be proactive, not reactive. Keeping healthy with diabetes is more than just about blood sugar, as that disease works in tandem with exercise, cholesterol, and atherosclerosis. Taking care of one piece without taking care of the others is an exercise in futility, as is putting all the blame on Splenda or any other small piece of the equation.

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But what if the organization that is supposed to be proactive in lobbying for better diabetic treatment and providing funding research for a cure does nothing of the sort?

Does the ADA really do “nothing of the sort” or did you pick out an incident that is not in line with their mission statement and maybe even an infraction that has been tolerated to appease a major donor? Is appeasing a major donor to get large funding from them to be able to promote your cause a righteous solution or if your donor is not 100% aligned with your cause, you refuse their donations and fund less research?

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Did you read the article?

Yes, I did read it before posting

I just read the full article. Though I have been a T1 diabetic for 58 years, I have not known much about the ADA, but I’ve assumed it’s an advocate of worthwhile education about DM as well as research about it.

The article paints a totally different picture. It is difficult for me to imagine how the ADA could endorse a significant use of potatoes or any carohydrate food in a diabetic’s diet, or use of a product like Spenda in large quantities in face of research showing it may have highly negative impact on a diabetic’s health.

If even some of the facts cited in the article about the ADA are true, it would appear the organization is not following its mission statement. I am glad I have not been paying attention to them all these years.

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I hate the ADA with a passion. My endocrinologist knows the same history and loves them almost as much as I do.

When home glucose monitoring was first being discussed, the ADA opposed it tooth and nail. I can’t find a good history of the power play at the moment, but this is from an interview with Dr. Richard Bernstein, now posted at History of Blood Glucose Meters .

“The ADA fought this tooth and nail until they caved in slightly in 1986, I believe it was October. There was a joint meeting of the ADA and AADE, that is representatives of the ADA and AADE and a few other organizations, and by this time the demand from the patients was so great that the ADA caved in and said that they would find self-monitoring as an acceptable mode of treatment for those who take insulin, just those who take insulin, which automatically ruled out 90% of diabetics, and that was in 1986, 17 years after they first knew about it.”

I used to not know what ADA did. I used to think they didn’t do anything…or didn’t do anything valuable. I didn’t know then, what I know now.

ADA reads what we write here.

There was a time that I had trouble with the State law surrounding diabetes and being able to obtain a drivers license (as someone who uses insulin). The State threatened to throw me in jail because the DMV computer system wasn’t built to manage my medical paperwork. I had been trying, for years, to explain the paperwork problem. One day, one of the women on this forum reached out and told me that I needed to go to ADA Day at the State capitol. So, I did. ADA had flown in from Denver. They had written a bill. They used the word, “discrimination” in that bill.

Now, the work of passing that bill fell on me. But, what they did made the State take me seriously. ADA made the State nervous. They used legal language that was meaningful. It gave me a lot of leverage and helped me get that bill passed. It took 5 years, but it would have taken a lifetime without ADA. I wouldn’t ever have had the opportunity to work and have a career. I would be in jail and possibly died from low BG in there.

During covid they did a lot.

When it matters, they come. They drop out of the sky without much warning. You don’t call them, exactly. But, somehow they know to come. There are some kinda bat signals that I don’t totally understand.

All the advocacy groups are connected through an informal network that I still don’t totally understand. But, there’s a network of support. Splenda might not be significant enough to summon the bat signal to shine. I don’t know.

I, personally, get really nervous when advocacy groups work with Pharma. It feels uncomfortable, like working with the Devil. The reality is, that if you do a lot of advocacy, you will work with certain players at certain times on specific issues, and then almost simultaneously work against them on other issues. It can be disorienting for people. It’s a complicated web we all weave.

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According to this article, there might also be little to nothing wrong with Splenda. I did not see anything that said Splenda was harming anyone. It kept using may and maybe words. The fired woman makes claims and has a lawsuit, but so far, nothing in the article says that her lawsuit has any validity. We should probably wait for the lawsuit’s outcome before rushing to judgments.

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I agree that this is primarily an issue of employment law.

I recall ADA not accomplishing anything with the CDC when we Type 1’s were desperately wanting priority for the first Covid vaccines. That caused ADA to lose some credibility with me.

Well…the type 2’s got priority. That was surprising, wasn’t it? I understand, but I was surprised.

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I remember having a lot of angst about that, but, by the time it got around to people who only had a single chronic condition, they didn’t care what type of diabetes you had. Maybe it affected people with multiple conditions one of which was type 1 and type 1 didn’t count? Or maybe I’m misremembering.

I got mine really early. Not as early as the over 65 crowd, but the same time as the T2’s.

In Minnesota, everyone in the city wanted to vaccinate. But no one in the country wanted to vacc, so they had a bunch of unused vaccinations that they were throwing away (if you drove three hours North of the Twin Cities). I went on a nice long road trip with the dog.

I understood the evidence for giving T1Ds COVID vaccination priority was insufficient. I assume that is because there are many more T2s that T1s and that would affect the statistics. T1s misdiagnosed as T2s might be a confounding factor.

My first COVID vaccination was 2-3 months early with CKD as the qualifying condition. CKD was result of a kidney stone and I’m unclear whether that is really CKD.