Diabetes Controversy That Led to the DCCT

While participating in Richard's thread on Starvation Diet from 1916, BSC brought up a point about tight control, the founding of the ADA, and the DCCT. This stirred a memory of something I had read in James Hirsch's book, Cheating Destiny. I found what I was looking for and, so as to not hijack that thread, decided to post my findings here.

The diabetes controversy that led to the founding of the ADA and the DCCT (information found in Cheating Destiny, by James Hirsch)

Who: Elliot Joslin, Boston Brahmin, founder of the Joslin Diabetes Clinic, first president of the American Diabetes Association. While dedicated to his patients, was also rigid and inflexible. Any and all deviations from his prescribed routine and beliefs, including avoiding hypoglycemic reactions in public, were met with scorn and ridicule. He believed diabetes to be a punishment of the obese for being too gluttonous. He insisted on extreme self-control and could be said to be the founder of the “take as little diabetes medication as possible and stick to a strict diet” philosophy. Essentially, he believed, “You are diabetic or have problems with your diabetes because of a moral/character flaw”. Edward Tolstoi, extroverted immigrant to New York and founder of the American Diabetes Association. Believed Joslin’s philosophy put patients in “a medical straitjacket, injuring them emotionally while increasing their risk of hypoglycemia” and in response, was one of the strongest proponents of the “free diet”.

What they wanted: Joslin insisted on the tightest control possible at the time. Urine was to be sugar free at all times through strict adherence to insulin regimen, regular vigorous exercise, and exacting dietary compliance through weighing and measuring. In one way, he might have preferred to have his patients in the hospital at all times so he could ensure they stuck to his regimen. Tolstoi wanted to remove the burden of shame from the diabetic, to allow them to eat without having to weigh and measure every gram of food eaten. Patients should not be made to feel guilty for not having absolutely perfect blood sugars, but should be allowed to live as normal a life as possible. He showed that, even with the best control available back in the 1940s and 1950s, diabetics died with and from the same complications as those with the worst control. If the complications and death are inevitable, then why not allow them to enjoy the cheesecake without guilt?

Why was this not resolved until the 1980s and the DCCT? Hirsch asserts that both “tightly controlled” and more loosely controlled diabetics developed complications at the same rate because, at that time, the tools were not available to adequately control blood glucose all the time. Joslin may have thought he was keeping his patients “tightly controlled”, and it was an improvement over the pre-insulin era, but it was not near enough to keep people from having complications. With the development of blood glucose meters and the A1c test in the 1980s, the average diabetic now had the tools to more tightly manage his/her blood glucose.

Findings of the DCCT: Retinopathy and nephropathy (eye and kidney disease) were substantially decreased in those who were managed under tight control. Long-term follow up showed a decrease in the incidence of heart disease for those under tight control. Complications: Hypoglycemic events increase 300%, so instead of becoming rare, became far more frequent. Weight gain, sometimes substantial (on order of 100 lbs for one person I met) is common among the tightly controlled group. Limitations: Motivating patients to test bgs frequently, take 4-8 injections/day of insulin or to attach themselves to a pump, to write down everything they eat, etc. is not as easy as the doctors thought it would be. While patients did not drop out, CDEs and dietitians found they had to frequently call the members of the tight control group, and even bribe them to keep them “compliant” with the regimen. The DCCT used newly-diagnosed, young adult Type 1 diabetics, which are not the norm for people with diabetes. When doctors tried to apply the findings to children, the results were sometimes devastating. With adult type 1s who had diabetes for some time and who had complications (especially retinopathy), tight control made the situation worse. Finally, ADVANCE and ACCORD were done to see if the findings could be extended to older type 2s. Results from those studies are mixed and for some type 2s, tight control may be inappropriate, though both of these studies have been criticized for their flaws.

My take-away: While Joslin was right and tight control does matter, Tolstoi also has a point. Over the past 17.5+ years, I have seen many patients who have been made to feel that their complications are “all their fault”, that their inability to lose weight is a moral failing, and that severe hypoglycemia – blood sugars under 30 with seizures – is simply a “fact of life” for type 1s who are tightly controlled. As James Hirsch writes:

“’The problem with the DCCT was the whole fixation on causality, and the other side of causality is blame: “It’s your fault,”’ said Howard Wolpert, a senior physician at Joslin. Some of his patients have been badgered by other doctors for failing to meet glycemic targets, and he refers to some physicians as ‘fascists’ in their use of high-pressure, accusatory tactics…Moreover, the DCCT created unrealistic expectations. Its volunteers, already highly motivated, had access to teams of specialists at academic centers and were never limited by financial considerations, circumstances that few patients can duplicate…in subsequent studies of the same volunteers…the average A1c increased to 8.0 from 7.0. ‘The first lesson,’ Kahn said, ‘is that it is very difficult to achieve these goals.’”

Obviously, a better balance between the Joslin and Tolstoi extremes needs to be struck.

Views: 95

Comment by Natalie ._c- on December 12, 2010 at 10:50pm

An interesting counterpoint to your article is this one, on Diabetes Update, about the history of diagnostic criteria by the ADA:

http://www.phlaunt.com/diabetes/14046782.php

It mostly talks about Type 2, but the issue of the incidence of complications is also discussed in detail, and applies to both types.

Comment by Brunetta on December 12, 2010 at 11:17pm

Great post, Angela!!! I have read Hirsch's book and found it to be enlightening and informative.  I also know that prior to the DCCT, I had an "ignorance is bliss" attitude,and I was young anactive and i really only though about diabetes injections like any other healt ritual, such as brushing my teeth, one to two shoat a day for over 25 years.. I .only tested glucose once a week and was not told nor tuaght to how adjust insulin dosages.. and I managed ok with hardly any  disabling diabetes crises throughout my life.My most disabling medical condidtions have not appeared to be diabetic in nature:.autoinmmune, yes, but not hyperlgycemic stuff. Now that I have gotten older and have the full arsenal of diabetic control tools ( CGM unlimited access to testing and doctors and the DOC) I find that I absoutely HAVE to give myself a break, every two weeks, from the CONSTANCY of test test test test test correct, treat low test test test test. I have to deliberatelY NOT wear my CGM, so I do not get sostressed about tying to hit those "perfect numbers". With the CGMS, I tend to have toomuch information at times, and may overcorrect. I forget how fast acting Apidra is and I wan that  out of range high to come dowm quick quick quick. Because I am impatient and oerreactive, I have to haver an "ignorance is bliss period" about one a day every two to three weeks. I I only test before breakfast and before driving. I test if i am going to do any extra esercise or house work. I count carbs for bolussing . that's it

 

All this is just to say that U am happy that we got so much  needed info from the DCCT , but as you mentioned WE have to have a balance.

 

God Bless and Stay warm

Brunetta

Comment by Brian (bsc) on December 13, 2010 at 5:30am

Good work Angela.  I certainly agree that there has to be a balance and Joslin represented an extreme in treatment philosophy that was unbalanced.  But I would also suggest that it was also extreme of the ADA to suggest that you could just go about life as usual (without concern for diet and exercise) if you just took your insulin as ordered.  As diabetics started living longer, the number of complications in the 40s and beyond exploded.  And once the DCCT came out, the ADA accepted that tight control led to fewer complications but was unwilling to budge on the "life as usual" position.  In my opinion, that is why to this day we see the nutrition guidance saying that you should eat as though you don't have diabetes. Wolpert and Kahn have been very outspoken in stating the position that patients just "can't be bothered" to worry about diet and exercise.  Given what we know today, that is an extreme view and should be tempered with understanding that attention to diet can bring better blood sugar control.  It should be a personal decision about whether you want to have a strict diet and exercise, but it is wrong (and unbalanced) to withhold information from the public that these treatments work. 

 

ps. As a final note, one must also take the view presented in "Cheating Destiny" in context, the brother of the author is the noted diabetes clinician Irl Hirsh who is an "insider" at the ADA and the author does up front note that his brother is a primary source.

Comment by Melitta on December 13, 2010 at 10:00am

Thanks, Angela, this is really fascinating.  The one thing I disagree with is your comment that newly-diagnosed young adults with T1 are not the "norm."  The vast majority of new-onset Type 1 is in adults, and new onset Type 1 is seen in all ages (even Joslin commented on this in 1934).  That T1 is a childhood disease is just a myth.

 

On a different note, my godmother was diagnosed with Type 1 as a child in 1928.  My mother said that she was always very controlled about her eating and weighed every morsel that went into her mouth.  There's the Joslin influence.  She lived a relatively long life for someone diagnosed in 1928, so there is anecdotal evidence that the low carb approach is preferable to the "eat anything you want" approach.

 

Finally, blaming people for non-compliance and high A1cs is SO harmful in so many ways.

Comment by Doris D on December 13, 2010 at 10:20am

Thank you Angela. I have found that the "better control" I get the more lows (really low) and seizers I have I got diabetes in 73 and for me the "carb war" sometimes helps but usually not. I've been a Type 1 now for 37 years. Done MANY experimental things that have helped a little today. I wish this "war" over Type 1 and Type 2 would stop. I mean WE ALL HAVE DIABETES AND WE NEED TO HELP ONE ANOTHER!!!!

Comment by AngelaC on December 13, 2010 at 2:38pm

Melitta,

Allow me to clarify. When I said that newly-dx'ed young adults withT1 are not the "norm", what I meant is that withing the entire population of people with diabetes, young adults (17-30) newly dx'ed with t1 constitute a small portion of that population. That is, if you took all 23.6 million US diabetics out there, only a tiny portion of them would have met the qualifications to participate in the DCCT. Anyone who has had a decent research methods class could list the problems with using such an unrepresentative sample, the most important of which is that the results cannot be easily generalized to groups of individuals that vary in one or more important ways from the group studied. Doctors did try to extend the DCCT results to groups that weren't studied, such as children and the elderly, and when they did, they found maintaining "tight control" to be even more difficult than it was with the "standard" young adult.

As reported in The International Handbook of Diabetes Mellitus, 1:300 children and 1:100 adults will be diagnosed with diabetes at some point in their lives, so yes, you are right and more adults are dx'ed with T1 dm than children are.

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