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We are very lucky to live in an age of so much marvelous technological and pharmacological innovation. The tools we have to manage Type 1 diabetes would have been almost unimaginable just a generation ago, as many people with long-term diabetes can attest.

New diabetes management tools generally have a dual purpose: they serve to improve glycemic control, but they also serve to improve lifestyle, generally by making conventional lifestyle choices more feasible. Sometimes these two goals are at cross-purposes.

Consider the Continuous Glucose Monitor (CGM). It’s an extraordinary technological advance, and I hope that every person with T1D will someday have access to their own affordable CGM. The ability to warn users of potentially life-threatening hypoglycemia is reason enough to make it a vital piece of any approach to diabetes management.

A CGM offers much more than alerts. Many studies have confirmed that it can have a powerful A1c-lowering effect. This is easily believable and is confirmed both by personal use and anecdotal evidence. And yet the CGM does not itself automatically keep you in range: it only gives the user better data. The user must choose what to do with that data.

You could use your CGM to track your glycemic response to your usual healthy breakfast with a new level of precision, and use your new data to help fine-tune your insulin dosing strategy. This is likely to result in better blood glucose numbers, a smoother response with fewer large spikes and crashes.

Conversely, you could use the CGM in the same way with a meal that is notoriously challenging to bolus for – say, fries and a milkshake. In this case, the CGM again allows you to refine your bolus strategy, and should help you improve your glycemic response. But this isn’t likely to result in better overall blood sugars, especially if your increased confidence encourages you to eat this challenging and unhealthy meal more often. And I do think there’s some danger in using new technology and medication to obtain a more conventional lifestyle. In modern America and much of the rest of the world, “conventional” can entail some real health risks.

Diabetes Outcomes Are Not Improving

Despite all this superior technology and medication, Type 1 diabetes outcomes are not improving.

The principle evidence comes from the journal Diabetes Technology and Therapeutics, which last year released an article that sought to analyze trends in Type 1 diabetes management and clinical outcomes. The authors used data from the T1D Exchange Registry, a voluntary annual questionnaire for individuals with Type 1 diabetes that has been collecting responses since late 2010. The most recent results (2016-2018) were compared with results from the initial enrollment push (2010-2012).

The results were distressing: “Glycemic control has not improved overall between 2010–2012 and 2016–2018 and in fact appears to have worsened particularly in adolescents.” The numbers, in fact, were not close. A1c’s increased across the board, as you can easily see in the graph (the orange line represents the 2010-2012 numbers). Among the 9,657 that participated in both surveys, adjusted mean A1c increased from 7.8% to 8.4%.

While negative progress would be cause enough for alarm, what is particularly striking about this decline is that it should occur during an age of such innovation.

In particular, the 6 year interval between surveys saw the rise of the Continuous Glucose Monitor (CGM), the brilliant piece of equipment that should allow its users to markedly increase glycemic control. In the 2010-2012 cohort, a mere 7% were using a CGM, and no doubt using models that would appear primitive compared to today’s standards. In the 2016-2018 cohort, that number had increased to 30%.

There were even greater proportional increases in the use of adjunct glucose-lowering medication. The percentage of participants taking Metformin more than doubled; those taking GLP-1 agonists had increased 10-fold; users of SGLT2 inhibitors (which were not even available by 2012) increased from 0 to 232. All told, 6.7% of 2016-2018 participants were using secondary medications for glucose control, compared to just 2.2% in the earlier sample.

There is no real reason to doubt the potential effectiveness of all of this innovation (even though we have our concerns about some noninsulin glucose-lowering medications). People with diabetes today have a more impressive and effective toolkit for managing the disease than ever before. So why are outcomes sliding backwards?

Obesity is Also Increasing

Meanwhile, people with Type 1 diabetes struggle with weight gain more than ever.

For decades, people with T1D were thought to be stereotypically lean. This image, sadly, was at least partly due to the ravages of chronic insulin deficiency, which can cause people with undiagnosed or poorly controlled diabetes to shed weight, no matter how much they eat. But it can likely also be attributed to the caution and consistency with which people with diabetes were once taught to eat, in the decades before the introduction of modern rapid-acting insulins and personal glucose monitors.

This situation has now reversed. A 2010 study showed that people with T1D were “subject to similar risk of excessive weight gain as the general U.S. population,” and more recent data shows that younger adults with T1D have actually outpaced the general population, and are now more likely to be overweight and obese. This is easy to believe, as a person with T1D eating a conventional diet will need to use very large amounts of exogenous insulin, which may promote weight gain.

Does it matter? It certainly should. Excessive weight gain puts people with Type 1 diabetes on a collision course with insulin resistance and the dreaded “double diabetes.” The confluence of Types 1 and 2 diabetes, double diabetes was once so rare as to be considered a curiosity. Now diagnoses are commonplace. This is an extraordinarily difficult condition to manage well, and entails an “unacceptably high” risk of cardiovascular disease, stroke, and early death.

People with T1D should recognize that they have a far greater incentive to avoid excessive weight gain than their non-diabetic peers and family members. If you already have T1D, the metabolic disorders associated with obesity and poor diet are far more dangerous.

Encouraging Unhealthy Behavior

I recognize that this is an uncomfortable subject.

There’s a tension in the diabetes community over how much life with diabetes should resemble life without it. It’s something we all wrestle with almost daily. When you’re offered a slice of cake, you have a decision to make: will you accept and eat it now, like everyone else in the room? Will you accept but first pre-bolus and then wait 20 minutes or more before eating it, probably after everyone else has finished? Or will you simply decline, deciding that the cake isn’t worth the blood sugar yo-yo that may follow?

These choices are particularly fraught for the parents of children with T1D. Children, adolescents and teens are not often equipped to properly balance short-term pleasure against long-term concerns. And so it falls to their guardians to decide if they will enforce diet restrictions today or if they’ll just let the kid be a kid, aware that this means tolerating both inevitable blood sugar rollercoasters and some incremental long-term damage to the child’s health.

It’s a tricky balance to strike, and most of us are getting it wrong. The T1DExchange Registry showed that “only 21% of adults achieved the ADA goal of <7.0% [A1c],” and only 17% of children and teens were able to hit the more relaxed goal of <7.5%. That success rate is woeful, and we haven’t even addressed the fact that many experts believe that the ADA’s A1c goals are too high to begin with. The consequences of chronic high blood sugars should already be well-known to everyone with diabetes.

Striking a Balance

Few of us want to return to the early days of T1D management, when doctors cautioned patients to eat consistent meals at consistent times of day, and even to avoid exercise. Type 1 diabetes was once seen as a significant hindrance to a life of freedom or spontaneity. I am extremely grateful that modern insulins and better technology allow me to enjoy a life that is largely unconstrained by my condition.

However, there is some wisdom in the old approach. When Diabetes Daily surveyed over 2,000 readers for its “Habits of a Great A1c” report, the authors found that methodical behavior was significantly correlated with better glycemic outcomes. Respondents that surpassed the ADA blood glucose recommendations (A1c of <6.5%) were more likely to eat a consistent number of carbohydrates from one meal to another, to be consistent with pre-bolusing strategies, to eat similar food every day, and to eat at similar times every day.

Remarkably, despite such a methodical lifestyle, these respondents were also 67% more likely to report that diabetes didn’t “greatly interfere with their daily life.” I think this finding is highly significant. If I may speculate on the difference, I would suggest that it indicates that most people with diabetes underrate the degree to which glycemic consistency contributes to the feeling of a “normal” life.

When you do accept that one slice of cake, it may allow you to feel normal for a few minutes, and it will taste good too, but the resulting blood sugar rollercoaster could take many stressful hours to resolve. The net impact on your mood is likely to be negative, with the result that the cake has actually drawn your attention to your diabetes, has emphasized and highlighted it. You may have hoped to forget your condition for a moment, but the very opposite has occurred.

Thriving with Type 1 diabetes, both emotionally and physically, still requires careful and mindful decision making. Using our most advanced technology and medications to enable more conventional choices is walking a dangerous line.