May 5, 2008

A Lesson from People with Lyme Disease

There was an interesting story in the news last week about how people with Lyme Disease organized and brought so much legal pressure on the Infections Disease Society--the organization that provides treatment guidelines for infectious disease--that the IDS was forced to agree to reconsider the recommendations it puts out for the diagnosis and treatment of Lyme Disease.

You can read about it here: Doctors to Reassess Antibiotics for 'Chronic Lyme Disease'.

The background on this story is that the doctors who make up the IDS have continued to deny that there is such a thing as Chronic Lyme Disease or that it should be treated with aggressive antibiotic campaigns despite the experience of many sufferers from Lyme Disease who have developed long term disease syndromes that responded dramatically to the antibiotic treatment.

Because the official treatment guidelines claim that chronic Lyme Disease does not exist and discourage antibiotic treatment for it, people with Lyme Disease cannot get insurance coverage for their treatments, to say nothing of being unable to get their doctors to prescribe the drugs that other people with Lyme Disease have found so helpful.

Does this remind you of anything we people with diabetes go through? Like, perhaps, the way that the American Diabetes Association--a wholly owned subsidiary of Big Pharma and the large junk food companies--has taken to itself the role of defining not only the diagnostic criteria for diabetes but also the blood sugar targets doctors are told to recommend as well as what the drugs and dietary approaches those doctors should prescribe?

The ADA's criteria and treatment recommendations hurt every single person with diabetes, but because they are the official treatment standards, no doctor can be sued for following them.

Let's review exactly what is wrong with the ADA's many positions on Diabetes:

1. The ADA's Diagnostic Criteria were set intentionally high so that people with Type 2 diabetes are not diagnosed until very late in the disease process, right before they are likely to develop retinopathy. That is why more than 1/2 of all people with Type 2 diabetes have a serious diabetic complication--usually neuropathy (nerve pain)--on the day of diagnosis, despite the fact that we know it takes about ten years of exposure to high blood sugars for neuropathy to develop.

The ADA has fought very hard against any revision of its diagnostic criteria, though study after study shows that truly normal blood sugars are much lower than the range that the ADA defines as "prediabetic." The fasting blood sugar test that the ADA tells doctors to use for screening for diabetes also is known to miss full fledged diabetes in women and people of color who usually develop extremely high blood sugars after meals long before their fasting blood sugar deteriorates. This is documented in great detail here: Misdiagnosis by Design the Story Behind the ADA Diagnostic Criteria.

2. The ADA's Blood Sugar Targets for People with Diabetes which are the one most family doctors still follow are set so high that a person with Type 2 who follows them almost guarantees that they will develop complications. Despite a load of peer-reviewed evidence that blood sugars over 140 mg/dl (7.7 mmol/L) are associated with the development of retinopathy and neuropathy, the ADA still tells doctors that a blood sugar of 180 mg/dl (10 mmol/L) two hours after a meal is "tight control" and that an A1c of 7% which represents an average blood sugar well over 140 at all times is "Excellent."

It isn't, but the ADA has refused to lower its blood sugar targets, possibly because the drugs that its financial sponsors sell are not capable of lowering the blood sugar of the typical Type 2 below those very high levels. To do that, a person with Type 2 Diabetes must also cut carbohydrates. If they do that, they can usually achieve normal blood sugars. Which brings us to the third and most damning failure of the ADA:

3. The ADA Actively Promotes the Consumption of Very High Carbohydrate Diets despite decades of evidence that these diets harm people with diabetes. You need only look at the recipes in an ADA magazine for people with Diabetes to see that the ADA is still promoting the idea that people with diabetes need to eat high carbohydrate fruits like bananas and apples along with high carbohydrate pastas and grains. The ADA partnered with Campbell Soups--a company whose high carbohydrate foods are notorious for their unnecessarily high levels of sodium and high fructose corn syrup. The ADA tells people with diabetes that they should eat sugar--possibly as a sop to their other huge contributor, Cadbury Scweppes, the candy maker.

And though it's main mission is "education" the ADA does not mention anywhere in its educational materials that it is carbohydrates that raise blood sugar and that by lowering carbohydrate intake, people with diabetes can restore their blood sugar control. Instead, the ADA tells people with diabetes to eat high carb diets and then take every single one of the drugs its Big Pharma sponsors sell, including Avandia, which the ADA went out of its way to urge patients to continue to take after the data came out showing it increased the likelihood of heart attack.

4. The millions of dollars that pour into ADA coffers thanks to its aggressive fundraising do not fund diabetes research. The ADA's primary mission is solely "education." The one thing that the ADA does re research is to publish two medical journals, Diabetes and Diabetes Care, which publish research--much of it funded by its drug company sponsors. However, if you price a subscription to either of these magazines, you will see that these journals are a profit center for the ADA. They are expensive! And the ADA's leadership usually ignores the results of the research published in those journals when setting treatment guidelines.

Much of the money you hard working people with diabetes raise with bake sales and other community activities funds the enormous salaries of the ADA's top executives, who are people who come from backgrounds as health industry lobbyists or from heading other disease charities completely unrelated to diabetes. The ADA's leadership do not have diabetes themselves, and have been known to refer to us folks who do as "poor victims."

Well, we are poor victims as long as we let these health industry profiteers earn huge salaries for fighting AGAINST us people with diabetes getting timely diagnoses, while refusing to teach physicians the safe blood sugar target recommendations that could keep us from developing complications, and actively campaigning against giving people with diabetes accurate dietary advice.

It is time we looked into how the people with Lyme Disease got some action from the organization that has a stranglehold on the treatment for their health condition and got into doing some organizing of our own.

The damage being done by the ADA to people with diabetes is far, far worse than anything the Lyme Disease people have to contend with!


nonegiven said...

We could start our own organization, publish our own diagnostic criteria, blood sugar targets and dietary advice, while referring to (and calling attention to that and their major funding sources) the ADA research.

Scott said...

This is indeed an interesting parallel, but I cannot help but wonder whether any doctors in clinical would even pay attention to people with diabetes on the issues you mention?

Its certainly worth trying, but I find it difficult to believe that anyone would even consider the patients' perspective; current dogma is the result of decades of brainwashing by the ADA, and we'd only likely get attention if more attorneys general assisted us in this matter. While it could happen, I wouldn't bet on it!

Jenny said...


What the Lyme Disease people did was put together a compelling legal challenge. So suddenly people in the medical community had to listen.

But you have to wonder, on what basis does this organization funded by drug companies and junk food companies get the AUTHORITY to set the practice standards?

And if those practice standards can be shown to be flawed due to undue influence, well, maybe there are some legal issues there.

I don't know. Someone who understands the legal system would have to get involved and look at what the Lyme Disease people based their legal action on.

Anonymous said...

Just for your information. Readers may want to check out ADA's 'rating' at: To me the fact that ADA spends 26 cents to collect a dollar (via fundraising) gives it a 2-star (out of 4) ranking. When the mission statement of the ADA reads: "to prevent and cure diabetes and to improve the lives of all people affected by diabetes" I am not averse to saying their solicitation and fund-raising is fradulent. Their mailing solicitations (which are as noxious as cockroaches and just as difficult to get rid of) to me pluck at heartstrings, and depend on equal measures of guilt (of victims/families) and extortion.

ADA has ill-served all diabetics--choosing to remain quiet as natural insulins were disappeared from the American marketplace. They have provided a platform for corporate sponsors to reach a captive audience with myriad products necessitated because of the LACK of effective medications, treatment protocols, and patient education. They continue to remain quiet . . . and provide a forum (organization's publication) to disseminate propaganda and provide a platform for opinion leaders/ scientists/ researchers to present pseudo science as substantive and progressive.

Sorry for venting . . . but years ago, before family, I had considered ADA a potential beneficiary should I die. Many years later . . . I would flush money down the toilet before I would give one nickel to this sycophantic, quasi-corporation that benefits from its protected 501(c)3 status, and returns little to those for whom it supposedly advocates (patients!)


Alan said...

Hi Jenny

Why don't you let us know how you really feel? :-)

You know I share those feelings re dietary advice (see but I'm afraid that we face an enormous inertia, not only in the ADA but in the AHA, the USDA "Pyramid" authors and the dietician training establishments, to name just a few. Then I have to extend the battle to my own homefront and Diabetes Australia.

Do you have a plan of action? I know of no organisation or funding source that could help support the legal challenge. It may need something like a class action of disgruntled relatives sueing over the death or illness of family members.

Cheers, Alan

PS Hi nonegiven, it's been a while:-)

Jenny said...


The difference between the ADA and the other organizations you cite is that in the U.S. the ADA's practice recommendations become the basis for what insurers will pay for. If the ADA discourages Glucose Tolerance Testing, which it does, insurers can refuse to pay for it, and do.

My feeling is that people with diabetes need to form some kind of advocacy group along the lines of the Lyme group or ACT-Up which is the other group that was able to change policy.

To do this, you need certain kinds of people with organizational skills and a love for political action, which does not describe me. I'm a hermit who writes, and the idea of sitting in a meeting about anything pretty much makes me break out in hives. But there are many people of that description, and it is my hope that someone will emerge who has the skills and determination to organize a "People with Diabetes" advocacy group that could stand up to the ADA.

For now, though, the first step is to raise awareness in people with diabetes that the ADA is NOT working for their good. It breaks my heart to see the amount of effort decent people in my region put into raising money for the ADA thinking they are doing something for their loved ones with diabetes.

And every time I see a newspaper obituary that suggests giving donations to the ADA, which is too often, I think, "There goes another victim of the ADA's self-serving, flawed medical advice!"

Robin123 said...

Hi - I am a Lyme patient and I was alerted to your interest here in the current historic uprising of Lyme patients. In reading through what you're going through here with diabetes, it sounds like the same thing - dealing with exclusionary conduct by a medical organization with financial ties to several industries, plus publications. (to be cont'd)

Jenny said...

Here is the link to the ADA rating on the highly respected Charity Navigator Web Site which analyzes the financial performance of charities.


Look at how much money they take in every year and then ask yourself what did they do with it? Besides push a lot of sugary breakfast cereal, bananas, and Avandia?

Check out the JDRF's five star rating.

It's time that people with diabetes started to demand that the ADA do something in return for the money it extracts in OUR names!

Anonymous said...


You're right about class action lawsuit as a possible course of action. BUT (big but!) as Jenny said in a previous post, medical examiners need to be gotten up to speed--as do diabetics themselves.

Medical examiners apparently list "heart attack," "natural causes," or "accidental" instead of "diabetes-related insulin response." I, personally, would like to know how many sudden, unexpected diabetic deaths have actually been attributed to INSULIN? How many traffic fatalities have resulted when a diabetic, experiencing hypoglycemia unawareness, loses cognitive ability, and kills himself (and sometimes others) while behind the wheel? {BTW, I know 2 young diabetics who were convicted of vehicular manslaughter--guilty of driving under the influence of insulin--and serving serious jail time.)

Sadly, there is a very small window of opportunity for medical personnel to establish that a victim had a significantly low blood sugar immediately prior to death.

The second problem is un-educated diabetics and families. The time for education is BEFORE a tragic event; and the education needed is awareness of severe hypo 'behavior' and the fact that insulin is a very dangerous drug. Who would be insensitive enough AFTER a tragic event to try to enlist family activism?

Insulin manufacturers--with their sometimes voiceless mouthpiece, the ADA--have successfully avoided liability for the role they have played in distributing 'modern' insulins that elevate potential for hypoglycemia unawareness. With ADA non-education, diabetics continue to be labeled as non-compliant or stupid when harm or death occurs due to hypoglycemia unawareness.


Khurt Williams said...


Great article.

One question?

Who are "people of color"? Don't all humans have a color?

Jenny said...


In my region "people of color" is the term used to refer to people of non-european ethnic heritage.

My own color tends to run from freckly to bright red, depending on sun exposure.