Four Essential Diabetes Facts You Never Knew
Politics and Diabetes have a lot in common, but only one is easy to fix
The CDC has declared November as Diabetes Awareness Month, whose mission is “to bring attention to diabetes [and] taking action to prevent diabetes health problems.” And it’s the perfect time of year, too, since Thanksgiving is when I gorge myself on high-carb food, drink heavily, and argue with family about politics. And that’s just the days leading up to the big dinner! [rim shot]
But seriously, folks…
This year, I will remind my dinner guests that we, as a country, can set aside our divisions and come together to peacefully and rationally talk about ways we can take better care of our diabetes.
Thank you, CDC. I’m getting all misty now.
Kidding aside (not), what’s interesting is how much politics and diabetes overlap. They’re both deeply personal, extremely complex, and everyone thinks they have a simple formula for how to make things better.
Fortunately, diabetes can be better understood and managed without throwing dinnerware across the room at ungrateful family members. And that’s the aim of this article: to help arm you with factoids that you can hurl at those who yell at you for not taking care of your diabetes. Or, maybe to help you actually take better care of yourself. I dunno. Just sayin’.
Look at it this way: You might even be healthy enough to run for public office one day, or become a Supreme Court Justice, like Sonya Sotomayor, who’s also a T1D.
So, let’s dive into the four most important things about T1D that you should always remember.
#1 Diabetes is far more complex than you think
Many people see diabetes as a “complicated problem,” where there may be a huge number of variables, but with enough learning and horsepower, it’s a knowable and repeatable process. So, you should be able to come up with a formula that works pretty reliably.
This perception leads to the aphorism that “if you’ve seen one diabetic, you’ve seen them all,” which leads to silver-bullet solutions: low-carb diets, high-carb diets, using insulin pumps, eating cinnamon, and some really crazy ideas. Each of these has rabid fans who claim that, because these approaches help them as individuals, they must therefore help everyone.
In reality, diabetes is “complex problem,” which is a type of problem where each variable is too diverse and volatile to predict any outcome within any reasonable degree of certainty. That is, there is no concrete formula, rather, a series of semi-workable rules of thumb. You do the same thing every day, and yet, blood glucose swings happen seemingly in wild and unexplained ways; insulin doesn’t absorb into the skin exactly the same every time; insulin resistance can be triggered by minor stresses, lack of sleep, inflammation, a common cold; food may have more or less carbs, fats and proteins than you estimated; you may have walked a tad more or less than you usually do on a particular day. The list of variables in endless, and the variability within each one has a very large effect on glycemic volatility.
Unfortunately, most T1Ds think their volatility in glucose control is somehow their own fault, that they didn’t count carbs right, or factor in other things that they think they should (or could) have known. While some are certainly better than others at any given task, the reality is that underlying volatility has a greater effect. “Complex” problems like this cannot be performed better by automated systems, or by magical diets, etc., but they can be managed, and the first step is to set realistic expectations.
In my article, “Why Managing Glucose is so Tricky,” I dive into the vast and diverse constellation of factors affecting glucose levels that most people are unaware of, one of which is the fact that insulin is only one of a very large set of hormones that allow glucose to be cleared from the bloodstream. Moreover, glucose is added to the bloodstream from other sources than just eating food—the liver produces glucose, and glycogen stores in muscles also create glucose as needed to address fuel demands by the entire body. With more than just carbs and insulin involved in the balance of blood glucose levels, one can better appreciate how and why T1D glycemic control is more of a cacophony of hormones signaling around the body than that of the simple balance between food and insulin intake.
The point is that the metabolic system is inherently volatile, which puts things into perspective: If the natural human metabolic system were so efficient, we wouldn’t have 40 million type 2 diabetics in America, with another 98 million undiagnosed.
With all this in mind, the cliche should be, “If you’ve seen one diabetic, you’ve seen one diabetic.”
So, as a T1D, don’t necessarily buy into dogma that managing the disease can be reduced to singular things, like a diet, a behavior, or a technology. Nor should you be surprised or blame yourself when unexpected volatility happens. Unrealistic expectations lead to depression, and become major barriers to even attempting to gain self-control.
In the literature review, “The cognitive and psychological effects of living with type 1 diabetes: a narrative review,” hundreds of studies show a pooled prevalence of 30% of depression for the T1D population at large, and 17% to 63% for subpopulations, usually due to the bewildering frustration and unpredictability of glycemic control. (For those interested, the Behavioral Diabetes Institution is a resource with considerable resources, both in research and therapy, and they are specifically dedicated to mental health for T1Ds.)
Now that you know not to blame yourself, you naturally wonder, who else can you blame?
I know, it’s tempting to place all the blame on others, especially politicians, when things go wrong that aren’t your fault. I understand the sentiment, but no. We’re trying to manage diabetes, not politics. No blaming allowed.
What you need is a customized self-management protocol, but that presents a textbook catch-22: To create a personalized management regimen, you have to know how to design a personalized management regimen. Ok, how? Well, the obvious go-to person is your doctor, which leads to the next factoid: T1D docs have a nearly impossible task, so don’t blame them either. (Yeah, sorry.)
#2 The impossible task of T1D docs (and they’re not all equal)
All T1Ds need medical providers, if only to get prescriptions for medications and devices. Everything beyond that takes time and individualized attention, which is not pragmatic.
We T1Ds all had common experiences: We originally experienced some horrific event (that shall remain nameless), landing us in the hospital, where a well-intentioned person in a white lab coat approached us with a clipboard, and said, without looking at anyone directly in the eye, “I’m sorry, but you have type 1 diabetes.” And in response, we all said, “I have… whaaaaaa?”
At this point, we are whisked away to a room, where other well-intentioned people (not in white lab coats) teach us the basics of taking insulin and calculating carbohydrates, fats and proteins. We’re then sent home with a stuffed animal and a huge, sugar-free lollipop.
After a few years of struggling with the disease, we get angry with our docs because we think they’re not doing enough, or not listening to us, or any number of complaints. Most T1Ds change doctors an average of 5-6 times during their first ten years, primarily for these reasons, only to run into the problem that there just aren’t enough endocrinologists. Period.
Alternatively, many T1Ds turn to general practitioners (primary care physicians, or PCPs), where there’s also a major shortage. Worse, PCPs have even less experience with T1D (and many of them don’t realize it). And that problem is getting worse because medical students aren’t looking to become PCPs.
Irrespective of any of the above, there’s one rule that you can’t escape: Clinician appointments last for 15 minutes per visit, typically 2-3 times a year, leaving very little time to actually come up with techniques that help patients manage their disease.
People blame the medical system for this, which ultimately brings us back to politics (darn!), but fortunately for this discussion, the “medical system” isn’t the problem, nor is it your doctor. The reality is that, even if a doctor could spend 100% of their time with you for weeks or months on end, there would be too many situations where it just isn’t clear what’s going on, or what you should be doing, not to mention the unique nature of all situations.
What’s more, every endo is different—very different. In a study that asked 17 physicians from 11 countries to provide insulin dose adjustments for 15 T1D patients, there was only a 51% agreement among the physicians. Among them all, there was a 17% change in just the basal rates. That study, incidentally, also had an automated insulin pump algorithm, the Advisor Pro, perform similar analysis, and it too had great variability in recommendations that were not just different from the endos, but resulted in similarly erratic outcomes.
This all brings us back to the fact that diabetes is a highly complex problem—it has inherent volatility and unpredictability, even for non-diabetics—so you have to set realistic expectations of the disease, and even lower expectations of your endo.
Instead, use your empirical experiences to learn how your body works. Look for patterns and deal with them individually and independently. No one can hold your hand here. This is more art than science, and you can’t rely on clinicians or automated algorothms for this.
When I broached this topic with Christopher Worsham, a critical care physician and research faculty member at Mass General Hospital & Harvard (and co-author of "Random Acts of Medicine"), he told me:
“Not only are the disease and its treatment complex, but the way that complexity has to weave its way into the unique considerations for each individual patient with unique needs that change over their lifetimes makes it exponentially more complex. It's a situation where I think doctors/healthcare providers often need to take an approach of being an advisor to an informed and proactive patient, who is ultimately the one who is in control of their care (and will be the second they walk out of the office). That doesn't mean handing over the prescription pad, but it does mean having the humility to recognize when patients are, in fact, experts in their own disease and to help them take control of it in a way that the evidence suggests is going to be beneficial to them.”
The key phrase is, “an informed and proactive patient.” It takes considerable self-discipline to become proactive; you need to own your agency and just decide to make a commitment to it. Once you do that, becoming “informed” is a tad easier, but there are pitfalls. Namely, the desire to oversimplify, which leads to:
#3 Oversimplified explanations, oversimplified treatments
As mentioned before, many people treat T1D like a “complicated problem,” by reducing it into easy, bite-sized tasks that can be administered by patients. This is understandable, because “complex problems” cannot be managed easily. It puts clinicians in a bind: They have to straddle between what is achievable, versus what’s optimal. While understandable, it’s also a moral hazard, similar to problems that face politicians: Oversimplified information and solutions give the illusion of progress, but are inherently unhealthy. (Remember, I’m trying to talk about T1D here, not politics.)
It reminds me of the quote (attributed to Einstein): “Everything should be kept as simple as possible, but no simpler.” The problem with T1D is that nothing is simple. (Neither is politics. Ugh.)
The most universal example of this is the use of A1c levels for managing individual care, which is still recommended by the American Diabetes Association. While A1c levels are useful for evaluating population-wide trends, determining whether a non-diabetic is developing T2D, or testing the effectiveness of technologies, A1c levels are not useful for ongoing, individual care. As I detailed in my article, “HbA1c Tests and T1D: The Good, The Bad and the Ugly,” using A1c levels as an endpoint for control tempts many clinicians to prescribe too much insulin.
While higher insulin rates lowers A1c levels, that only gives the illusion of progress. It also leads to a cascading series of unhealthy events, namely severe hypoglycemia and weight gain, both of which are highly unhealthy. Obesity in T1D has increased across the T1D community since 1988, when it was just 3.4%, but is now at 37% in 2023, according to the Lancet article, “Obesity in people living with type 1 diabetes.” Weight gain leads to cardiovascular disease, kidney and liver dysfunction, and a whole set of conditions normally only seen in T2Ds.
Having both T1D and T2D is like a politician being both a Democrat and a Republican! That’s almost worse than a third-party candidate! (ba da boom!)
Sorry about that.
Ok, the problem is understandable, and even a bit poetic: We want to teach something… and yet, we can’t teach everything… but it’s better than nothing.
It’s like teaching first and second graders to read and add numbers: It’s achievable, but they’re not going to go into the real world and make a living.
Ok, so if we can’t blame ourselves or politicians, and we can’t rely on our doctors beyond certain minimum levels of support, and simplistic treatments don’t work, what’s left that will help us manage T1D better?
Technology! Why not? Technology has solved all the world’s problems, right? How hard can T1D be? (Strap in, cuz here we go down a rabbit hole!)
#4 T1D Technology can be a moral hazard
Leave it to technology entrepreneurs to make things easier, faster, and simpler for everyone. But not less expensive. (Remember that.) You think I’m going to say it’s not that simple, so instead, I’ll just cite H. L. Mencken: “For every complex problem, there is an answer that is clear, simple, and wrong.”
The CGM (continuous glucose monitor) is the one technology that has had the most positive impact on T1D management for two key reasons: 1) It’s very easy and accessible, and 2) the patient has data available by looking at their phone, a habit that (sadly) is part of human life across the globe. And yet, even with the improved glycemic control, CGMs still don’t bring glucose levels below that critical health threshold. Improvement is not the same as achievement.
There’s no question technology is providing good, beneficial outcomes for T1Ds, but this is where the axiom of “one size fits all” doesn’t work. A typical example is the insulin pump (including automated pumps). In theory, it looks like a great idea, but in practice, it’s a very different picture.
One of the first studies on evaluating their effectiveness is one I cite frequently: This study by the T1D exchange in 2018, which found that “there isn’t a substantial difference between A1c outcomes for those who manually take insulin injections compared to those who use pumps” for T1Ds over the age of 26. Even among the best performers, A1c levels did not come down to healthy levels (<7%).
These results have been replicated along a series of studies covered in this metareview of randomized control trials using closed-loop systems, which showed that adult subjects only saw an improvement of only 1.07% compared to those not using pumps.
There’s another factor: Cost. In a paper titled, “Cost-effectiveness of Initiating an Insulin Pump in T1D Adults Using Continuous Glucose Monitoring Compared with Multiple Daily Insulin Injections: The DIAMOND Randomized Trial,” researchers found that the lifetime cost for pump users would be $112,045 more than MDI (multiple daily injections), along with a decrease in quality-of-life metrics by 0.71, and a decrease in life expectancy by 0.48 years.
The authors conclude, “initiating an insulin pump in adults with T1D already using CGM was associated with higher costs and reduced quality of life.” This is primarily why insurance companies are so resistant to covering insulin pumps in their policies.
Believe me, I’m not against pumps–I’m aware that many, many people benefit from them, particularly children and adolescents (as shown in the study), pregnant mothers, elderly populations, and others whose conditions are such that they cannot manage MDI on their own.
The real rub that causes the visceral arguments and dinnerware to be hurled across the room is that many T1Ds erroneously believe that pumps are better, safer, and yield improved glycemic control over MDI (outside of the edge cases noted earlier). This misguided belief, combined with the medical community’s efforts to streamline care, puts most T1Ds on pumps, without evaluating on a case-by-case basis whether it's appropriate for any given patient, either from the perspective of their health or their pocketbook.
For a much deeper dive into pumps—including automated pumps—see the article, “Benefits and Risks of Insulin Pumps and Closed-Loop Delivery Systems,” which delves into the epidemiological research that surprises many.
What the article point out is that the most beneficial thing one can do is learn about T1D and your own unique physiology. In the literature review, “Diabetes Technology: Standards of Medical Care in Diabetes—2022,” the authors find that no technology has succeeded in reducing A1c levels below the 7% threshold in large populations. Only the user can do that by being engaged with their disease. This is their concluding statement:
“The most important component in all of these systems is the patient. [...] Simply having a device or application does not change outcomes unless the human being engages with it to create positive health benefits. [...] Expectations must be tempered by reality—we do not yet have technology that completely eliminates the self-care tasks necessary for treating diabetes.”
Summary
I once had an endocrinologist in the 1980s that was also a T1D, and I always asked him what his A1c was, but he never answered me, always giving me vague, sweeping answers, couched in the form of advice. One day, as I was paying my bill with the receptionist, I commented to her that I assumed his T1D was in control, but she looked at me and rolled her eyes. I leaned in and asked, “What do you know?”
She said his control was horrible because he spends all his time in the office, eats poorly and doesn’t exercise. She then added matter-of-factly, “People who are in the best control just have the self-discipline to pay attention to their numbers, and do what they know they should do. It’s not magic. You just have to decide to do it.”
It would be another thirty years before I considered her observation, largely because I thought it would be hard, daunting, painful, and an abrupt imposition on my lifestyle. You know, “work.”
And yet, once I just “decided to do it” in 2018, it became such a non-issue, I couldn’t believe I waited that long. Once I removed the word “work” from my vocabulary, it truly felt “easy.” (I write about the three stages of T1D self-management here with a similarly humorous disposition.)
This past April, 2023, I celebrated my 50th anniversary with T1D, which I write about in, Why I Haven’t Died Yet: My Fifty Years with Diabetes.
It may sound like managing T1D is difficult, but it’s much easier than solving our political problems.