Monday, February 28, 2011

DSMA Blog Carnival: DSMA, DCCT & the Most Awesome Thing I've Done In Spite of Diabetes

During February 2011, the Diabetes Social Media Advocacy (DSMA) group began what what they are calling the monthly "DSMA Blog Carnival", something that will continue in the future with a variety of different topics. Essentially, it's a chance to explore a recent DSMA question in more than 140 characters (Twitter messages are limited to 140 characters each for my readers who may not be intimately familiar with that particular social network). This month's topic is "The most awesome thing I have done in spite of diabetes is _____ (fill in the blank)"

At first, I wasn't sure I wanted to even try this topic.

It's not that I haven't done awesome things in spite of diabetes. Quite the opposite: for me, the challenge was how to limit my conversation to a single thing. Then it occurred to me: the most awesome thing I have done in spite of type 1 diabetes has been to live my life -- seriously, and so far, it's been a great one!

My sentiments echo at least one other d-blogger I follow Mike Durbin at (see HERE for his post). I concur that ranking things is not something I can easily do, but my reasons are a bit different than his. For example, by my calculations, I have now spent approximately 83% of my life-to-date with type 1 diabetes. The other 17% is pretty much a footnote from my perspective, and as time passes, what few memories I do have about life before diabetes become even more vague (barring a few explicit memories on the subject, like my kicking the pediatrician who gave me the news I had type 1 diabetes and throwing what was probably the worst tantrum I had ever thrown as a kid).

When I was diagnosed at age 7 in 1976 (you can do the math to figure out my age), the outlook was sort of hazy. Medicine was just on the verge of a greater understanding of diabetes -- not that they're even close to completing their work yet, but at the time, the medical profession still had many rudimentary questions that simply hadn't been answered yet. Just a few years earlier, in 1973, for example, the the U.S. had officially "standardized" insulin sold for human use in the U.S. to U-100 (100 units per milliliter); prior to that date, insulin was sold in a variety of potencies and my parents actually had to specify at the pharmacy they wanted U-100 or the phamacist might give you the wrong potency. Today, I don't think many patients with diabetes are even aware different potencies can even exist, which explains how some patients can accidentally overdose when a stupid pharmacy clerk hands them a vial of U-500 insulin accidentally. Also, the following year, in 1974 to be precise, researchers had only just confirmed that type 1 diabetes was, in fact, an autoimmune disease that has just as much (if not more) in common with multiple sclerosis and psoriasis as it does with type 2 diabtes which is a metabolic disorder.

It wasn't until 1983 that the much-ballyhooed Diabetes control and complications trial (DCCT) would even kick off, and while that study was acknowledged to be a well-designed, landmark study, contrary to widely-held perception, it was NOT a perfect, flawless research study. For example, the DCCT is generally believed to have tracked 1,441 randomly selected diabetic participants for a period of 10 years. That's exactly what we've been taught to believe. However, as my friend Deb Butterfield poignantly once

"The truth is that the study [DCCT] began in 1983 with only 278 participants, the first two years were devoted to planning and feasibility studies and the DCCT's full cohort of 1,441 participants was not achieved until 1989, only four years before the study ended. Of the original 278 participants, 8 [which equates to 2.9% of the cohort] dropped out and 11 [which equates to 3.9% of the cohort] died. Those sad statistics were caused in large part by severe hypoglycemia. But then the study designers made changes to the eligibility criteria for the full-scale trial to exclude anyone with this very common short-term complication of diabetes. This exclusion raises fundamental questions about the randomness of this selection process."

Another flaw: although the DCCT authors observed a far greater increase in hypoglycemia than there were reductions in eye, kidney, and nerve damage, the authors miraculously failed to note this except in a footnote to their study conclusions. Was that just an oversight, or was that omission by design? It really makes me wonder.

Beyond that, the (DCCT) study authors noted that they were unable to show any reduction in cardiovascular morbidity and mortality without longer-term follow-up, hence the need for the NIH/NIDDK follow-up study called the Epidemiology of Diabetes Interventions and Complications (EDIC) study. However, even those conclusions had limitations. Most notable (in my opinion) was the so-called "Quality of Life" measure (see HERE for a copy of those questions and the statistical summary, too). One glaring omission was the absence of a single reference to COST of treatment in their Quality of Life measurements. Nowhere in that survey is a single question about how much of the participants' monthly disposable income went towards paying co-pays and/or deductibles required by insurance, nor was there any reference to the amount of a participant's free time was spent on hold with insurance companies trying to get approvals or appeal for prescribed treatments, getting coverage for prescriptions that might not be on their insurance company's formulary, or finding a doctor or nurse educator who is on the insurer's "preferred" provider list, etc.

Hmmmm, so apparently money is no object when it comes to diabetes treatment, and indeed, it probably wasn't for the DCCT/EDIC participants. Most of their treatment was paid for ... by you and me as U.S. taxpayers thanks to the NIH/NIDDK paying for that research. It's really no surprise that 96% of the cohort invited to participate chose to do so; participating meant they never had to deal with private insurance companies to get the care they were prescribed whereas they would have had to deal with all of B.S. than if they did not participate. In effect, the NIH/NIDDK coerced the participants to stay in the study by freeing them from the all of the usual crap you and I have to deal with to get our basic treatments covered. From my perspective, that measure (money & time spent to get prescribed treatments) should always play a significantly larger role in the so-called "Quality of Life" measures rather than how enjoyable a participant's sex life is, but alas, that was not the case in the DCCT/EDIC. That's a pretty big flaw in the applicability towards real-life patients, yet doctors must be reminded of these issues by patients, whose first question about a treatment is typically whether it is on their formulary.

Finally, there is also at least some scientific evidence that both cardiovascular disease and neuropathy have an autoimmune basis as well, meaning regardless of how good or bad your glycemic control may be, some nerve damage and cardiovascular disease might occur regardless. Even the criticisms of the original conclusion on cardiovascular disease, specifically that the population studied in the DCCT was relatively young (the age range of participants was 13–39 years), and therefore their likelihood of having a significant cardiovascular event during the follow-up period was low cannot explain away the autoimmunity question (for those of you dying to know what the study was, view HERE, or HERE for one on the topic of autoimmune neuropathy). Furthermore, although the DCCT authors observed a far greater increase in hypoglycemia than there was reduction in eye, kidney, and nerve damage, somehow, miraculously, they failed to note this in the DCCT conclusions except in the tiny footnotes!

That's not terribly comforting, except that for people who might be chastised for their failure to adequately manage their diabetes might still have something they can throw back at their doctors for some "complications" that were previously presumed to be due exclusively to glycemic management. Unfortunately, that's also little more a consolation prize, and too often, people will make snarky comments at the funeral home that if "so-and-so had just managed his/her diabetes better, he/she wouldn't be dead right now". I guess these people missed Emily Post's long-running newspaper colum on Etiquette (some readers may even ask "Who is Emily Post?", but should know that her daughters now run an etiquette website at

The follow-up EDIC study was supposed to answer the questions on cardiovascular disease, and did to some extent, but the notable take-away they did NOT publish was the fact that intensive glycemic control alone failed to prevent all cases of cardiovascular disease, suggesting that there's a bit more to preventing this complication than glycemic control alone.

But today's post was not meant to raise questions about the DCCT conclusions; rather it was to celebrate the fact that I have pretty much done everything I've wanted to in spite of diabetes.

If there's anything I might like to do but couldn't in spite of diabetes, it's that I might like to work as a contract employee (who can set their own rate, hours, etc.) but cannot do thanks to the inability to get healthcare insurance at any price in the United States thanks to diabetes being a preexisting condition. While the recent healthcare law may make that a possibility in some states, that won't happen until 2014, so it may still be a possibility for me in a few years, just not at the moment. But I can live with that provided some dumb-@$$ politicians don't decide to try to dismantle the law since they had 20 years to do something about this problem, yet chose not to even address it until a rival political party did it first, and they did not like the outcome. They had over 20 years to address this issue, but preferred to ignore it until over a year after it became law.

Anyway, maybe I can add some interesting perspective to the next DSMA Carnival topic for March 2011!


Jenny said...


Move to Massachusetts where you have your choice of plans and the only rate banding allowed is based on age.

No one is charged more for a pre-existing condition. I'm in my early 60s and pay less than $600 a month for a very good plan with low deductibles. I could get once cheaper if I wanted a higher deductible. Insurance is considerably less for people in their 30s.

I've never had a problem with a claim in the 17 years I've lived in this state. Even before our reform the state had passed laws that banned the kinds of abuses common over the border in CT where I had almost all my claims rejected by my insurer on ridiculous pretexts.

This is the same Massachusetts the Republicans would like you to believe is such a disaster. I urge people with diabetes to consider moving here so they can get on with their lives and not have to agonize about losing coverage.

There is even assistance to help people who meet financial criteria with their insurance costs.

Anonymous said...

Thanks for the great thoughts, Scott. Enjoyed your post. I wasn't familiar with the initial DCCT years and all the detail you explained, as it started only about a year before I was diagnosed and I never took the time to read up on the history of it on those points. Very interesting, indeed.

Mostly, I really concurred on your point about celebrating "the fact that I have pretty much done everything I've wanted to in spite of diabetes." Same here, for the most part. Only one more comes to mind, and I'm sure that more will materialize in the future, but I've been "normal" and achieved what I have wanted to. Even in those times I didn't think it would be possible, because of diabetes.