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!