I could feel the shakes starting, a cold shiver mixed with sweating, the rising emotions of recognizing a hypo beginning to encircle my throat.

This low blood sugar seemed like it came out of nowhere...

As it happens, I wasn’t wearing my continuous glucose monitor at the time as I had wanted to take a break for the weekend, but the symptoms told a story of where my BG levels were going.

This was the scene in my living room on a recent Saturday morning, when I was home alone prepping for a relaxing (or so I had hoped) day of college football.

It soon seemed that the stats displayed on TV weren’t making sense, and eventually I couldn’t focus at all on the great big screen right in front of me.

A fingerstick confirmed that my BG level had dropped into the 40s, but I hadn’t felt it coming on before it suddenly plummeted and left me dazed and confused.

After muddling around in the kitchen for longer than I should (due to a compromised ability to walk efficiently!) I downed some OJ, which started bringing me up but then led to even more cold chills – the effect I feel when my BGs start rising after a dramatic hypo.

To me, when I think about the current advocacy push to move 'Beyond A1C' in diabetes care, this is what matters most: those moments where I lose control of my body, due to a severe hypo, that I may or may not be able to recover from on my own.

What does not matter to me at these critical moments is my latest A1C lab result, which we all know can mask a series of highs and lows, and also does nothing to inform me about my daily BG habits or struggles.

While I'm certainly aware that the A1C has a role to play in predicting potential complications, it's no guarantee that we will or won't develop complications. There's a higher risk th higher your A1C is, but that's really it -- there is still so much researchers don't know. I think most of us with type 1 diabetes especially are tremendously weary of the tunnel-vision focus on this single, somewhat amorphous test result. We PWDs are more than a number, even if we live much of our lives by these digits.

Sure, I still get a bit excited or disappointed depending on what the “big” number is each time I have my A1C checked. But it plays little to no role in the decision-making for my daily care -- deciding what to eat, how much insulin or which insulin to take, how to deal with physical activity, or any number of other D-related mental notes I churn through on any given day.

The #BeyondA1C Movement Gets Real

We've closely followed the advocacy happening in our D-Community around establishing meaningful measures of "diabetes success" #BeyondA1C, and I've even shared my personal take on looking beyond that number.

But I'm happy to report that we reached an important milestone this past summer, when many in the D-Community’s brain trust finally reached an initial consensus on actual definitions of new parameters that better address Quality of Life with diabetes, like "time in range," hypo and hyperglycemia, and so-called "Patient Reported Outcomes (PROs)."

The idea is that now, instead of relying solely on A1C, the medical establishment can use these more meaningful measures to gauge the efficacy of medicines, devices, treatments and services, and they will also help provide ammunition to convince Payors to cover the items that help patients most.

The draft consensus statement on these new measures was unveiled and discussed at a July 2017 gathering coordinated by the diaTribe Foundation, featuring key speakers from influential orgs including the American Diabetes Association, JDRF, the Endocrine Society, the American Association of Clinical Endocrinologists (AACE) and others. This all flows from discussions and policy meetings that have been happening since 2014, and we're now finally moving toward a tangible plan for actual change.

These groups are now working together in an initiative called the T1Outcomes Program aimed at "developing better ways to define clinically meaningful T1D outcomes beyond hemoglobin A1c (HbA1c)."

This is a first, a true milestone!

Specifics of New Diabetes Measures

At the American Association of Diabetes Educators (AADE) big annual meeting in early August, JDRF Chief Mission Officer Aaron Kowalski (a veteran type 1 himself since 1984) presented a broad update on where this movement stands.

They began by hashing out consensus on definitions, of hypos and hypers, what constitutes Diabetic Ketoacidosis (DKA), and more:

  • Below 54 mg/dL is considered 'meaningful hypoglycemia' that urgently requires treatment and has serious side effects if not quickly addressed.
  • Below 70 mg/dL but above 54 mg/dl is considered an 'alert level for hypoglycemia' – warranting action and a reminder that glucose levels are approaching a more dangerous zone.
  • 70-180 mg/dL is considered “in range,” serving as a target that could apply widely to many people with diabetes.
  • Over 180 mg/dL is considered high blood sugar (though many presenters noted that some people with diabetes can “spike” to 180 mg/dl or higher after a meal).
  • Over 250 mg/dL is considered very high and may require additional treatment actions, such as testing for ketones or, for those who wear pumps, determining if the pump site has failed.

As our friends at diaTribe also reported:

"Speakers also agreed that the most dangerous classification for low blood sugar – 'severe hypoglycemia' – would describe when a person with diabetes requires assistance from another person (e.g., a caregiver or healthcare provider) to treat a low. This would not be measured directly with CGM, but is a critical outcome beyond A1c that must be tracked and reported routinely."

That's interesting to me, especially in the context of my most recent low that made me feel nearly incapacitated, while I was also home alone.

The "final" definitions and consensus statement are being crafted now and we may hear more news as soon as November, according to Kowalski.

We look forward to that!

In the meantime, as we go about our days struggling to avoid lows and highs and stay in range, physicians and others will still be staring down A1C like the big goal post at the end of the field. But I for one know better now.

There ain't gonna be no touchdown if I can’t even manage to kick the football, or survive the run into the end zone.


Update: The diabetes organizations published their consensus document in November 2017 (see this JDRF consensus announcement, as well as this news release). In May 2018, the ADA also issued a report on needed regulatory change as well as the gaps that exist within clinical diabetes care.