Who moved the goalposts?

Welcome to another episode of BDI Briefs! Our aim with BDI Briefs is to take a brief look at important issues about the emotional side of diabetes.

In this short discussion, Scott, Bill, and Susan ask whether striving for better-than-standards diabetes management is worthwhile. Or could there be unintended consequences?

Detailed show notes and transcript

Scott Johnson:
Welcome to BDI Briefs. This is another exciting installment where we take a brief look at important issues about the emotional side of diabetes. Thanks for joining us today. I’m here with Dr. Bill Polonsky, President of the Behavioral Diabetes Institute, and Dr. Susan Guzman, Director of Clinical Education at the Behavioral Diabetes Institute. Both are world-renowned diabetes psychologists and two of my favorite people to talk with.

My name is Scott Johnson. I’ve lived with diabetes for over 40 years and have been active in the diabetes social media space and industry for a long time. And with introductions out of the way, Bill, what are we talking about today?

Bill Polonsky:
I hope everyone’s seen the title of this, which is called “Who Moved the Goalposts?” And what we’re going to do today is a little different from our previous videos.

While in previous videos we’ve reviewed some of the research literature and gotten very, very specific about things where we see a problem and how to resolve it, today is something, well, it’s something that’s been bubbling up that isn’t exactly as concrete as I would like.

I wish it was that we could talk about it, but something’s going on that’s not quite right. And it’s this funny issue. And let me introduce it this way. You know, over the years, Susan and I, we’ve seen so many people who obviously are very distressed and burned out about their diabetes. And one of the major contributors that so many people talk about with us is that there’s so rarely do they ever get kind of an attaboy, so rarely do they ever get this feeling that, whew, I made it, that my efforts have worked, that they’ve paid off. That I’ve made it to a safe place with my diabetes and maybe I can relax a little bit.

Instead, we see many people saying, well, however well they’re doing, there’s a sense that I’m never actually quite well, I’m not quite actually doing well enough. And so they have to try harder and harder. And some are feeling like they never get there enough. So we’ve always pushed and pitched on this old idea that it’s important to have this conversation with your healthcare provider about you know, what’s your target at which you really can sit back and say, I’m safe. Is it an A1C of 7.0% under that? We know that the American Association of Clinical Endocrinologists says that an A1C of 6.5% or under is appropriate for more people. Certainly want to try to achieve those numbers without having any risk of having severe hypoglycemia. But we’ve seen that all of that seems to be falling away. And partly it seems to be failing away because our technology and our medications are getting so good.

So, because it’s so much easier, although it takes effort, to achieve better glycemic outcomes, better A1Cs, and higher levels of time and range, we know the international standards now say you can reach 70% time and range. And this is assuming you would only know that if you’re wearing a continuous glucose monitor, that means the amount of time you’re between 70 and 180 milligrams per deciliter commonly. So, you’re doing well if you reach 70% or higher.

But again, we see so many people and healthcare providers saying, you know, 70% is okay, but 80% would be even better. And oftentimes this is not based on any actual outcome data. And it’s just making me nervous. Are we really helping people to be safer and do better? Are we just driving people crazy? And so that’s what I wanna talk about.

It’s the sense that the goalposts have been moving, especially over the past few years. And what are we doing to folks? I mean, Scott, you’re living with this every day. Is this a good thing? Is it a bad thing? Susan, you’re seeing lots of people who come up with this. What do you guys think?

Scott Johnson:
I’ll take a stab at it first.

I often think that, all right, let’s say I work really hard and I reach whatever target my goal is with my healthcare provider. There is a sense of accomplishment and relief, but there’s also some additional pressure once that moment passes because it’s not like that’s automatically done and I’ll be there for the rest of my life now.

It’s, “Holy cow – I have to maintain this now!” right? And that is challenging for me. So I think that it’s good that we talk about this because the way I look at a lot of this is a balance between satisfactory diabetes management and my satisfactory quality of life. And that balance, that line of balance, moves a lot depending on what else is going on in my life. So, if all I had to focus on was my diabetes, maybe I could achieve some remarkable numbers.

But I would guess for most people watching this, life has a way of distracting us and pushing–oftentimes unwillingly–our diabetes onto the back burner for pockets of time. And sometimes those pockets of time are significant. And I think that’s just part of life.

Bill Polonsky:
Scott, I’m going to get personal with you, and you’ll push back if you tell me you don’t want to talk about it. But do you have an A1C goal or a time and range goal for yourself or something you’ve talked about with a healthcare provider?

Scott Johnson:
I do. We’ve talked about it. And my goal for time and range is 70%. And I know that because I wear a CGM. I’m also most of the time able to reach that goal. But my A1Cs, even when I try very hard, I struggle to get them below the low 7.x. So I often, even with my time in range, most of the time being about 70%, I’m seeing 7.3, 7.4, 7.2 A1Cs, and those bounce around a lot for me. We’ve agreed that as long as I’m not having a lot of lows or unexplained periods of high blood sugar, we’re pretty comfortable with where my A1Cs bounce around at. And we actually look more at my CGM data and time and range and troubleshoot based on that.

Bill Polonsky:
Okay, thank you. And again, I bring that up because I’m glad to hear that. And we see so many, I just get so worried about people who say, well, 70% is okay but I need to get to 80%. I need to get to 90%. I need to maintain there. And they might be right, but again, I encourage anybody who’s listening, if you’re living with type 1 or type 2, don’t believe me, but go and talk to your doctor. And the question is… Where’s any evidence that that’s going to be beneficial for you?

And that’s why it’s so important that I don’t want to pitch a number. I want you and your healthcare provider to have a discussion. But Susan, you see this all the time. I mean, how do you think about this?

Susan Guzman:
There are a couple of things that I’ve been thinking, sort of taking a more macro view, you know, thinking about like some studies that were done just on like how are people with type 1 diabetes doing before we change the goalposts? Where is the goalpost? Where are we at even? You know, how are people doing?

And what we know is that if we’re going to talk about the standard ADA target of an A1C of 7%. And again, that’s only taking one measure of diabetes management–that’s not even looking at blood pressure or LDL cholesterol or microalbumin or any of that other stuff–we’re just talking about A1C, right?

Look at the study done by our friend Jeremy Pettus where he looked at people about 20,000 people who have insurance and just looked in their system across ages in various demographics. How are people with type 1 diabetes doing? On average, only about 20% of people with type 1 diabetes with good health care were reaching a target A1C of 7% or less.

So that’s one piece that we have to think about. And the other is thinking about the emotional component. And when we think about, when we do large studies of people with type 1 or type 2 diabetes, something that comes up as the most endorsed item is for people with type 2 diabetes feeling like they’re failing. When you feel like you’re failing at a job you didn’t want in the first place, that’s not terribly engaging or reinforcing to continue to take action.

For people with type 1 diabetes, what Bill had already talked about earlier feeling like no matter what I do, it’s never good enough. And no matter how hard I try, I’m probably doomed to suffer complications. So you put all that together, and then we’re gonna change the goalposts?

It makes me worry a lot about not just what we’re going to do to people trying to reach things that out in the real world feel unattainable but how that’s going to show up in their emotional well-being.

Bill Polonsky:
Yeah, and again, I go back to this point of saying, I meet so many folks with type one, we’re thinking mostly about type one right now, who are very knowledgeable about diabetes, have a strong medical background, and they’ll say, well, you know, I think my time in range needs to be at least 85% all the time. And when I ask why, they go, well, I just kind of hope this is making up for all the times in the past when I wasn’t doing such a great job.

And again, they might be right, I guess, but we don’t have any evidence it’s true. And what everybody’s trying to do, Scott, you’re trying to do, is find this point of balance between what kind of handle I’m managing my life, and of course, I want to be as safe as I can, and I don’t want to have any problems and risk of having severe hypoglycemia.

I’m just thinking of the folks I meet who – it’s funny, it’s a mixed group – who come in, who will say, they have A1Cs and 6% or even 5% range and not having, nowadays with the new technology, sometimes not having any serious problems with hypoglycemia. And I’ll look at them and go, why are you here? Why are you even talking to me? And they’ll say, I’m just so tired, because it’s taking so much effort. But they have no interest in relaxing their hold on their blood sugars.

Susan Guzman:

Bill Polonsky:
Often because they’re so fearful about long-term complications, but that’s not necessarily unreasonable.

I keep thinking, I wish we knew more. When I talk to the most knowledgeable scientists in this country and say, what do we know? Is there really any added benefit of having, you know, extraordinarily great time in range, extraordinarily A1Cs? And I think most agree that we don’t know. You know, the studies really haven’t been done.

Susan Guzman:
But until that’s really achievable, like until we’re seeing more than 20% even get to what’s already been established as the goalpost, I feel like it’s a setup for people to feel, again, not good enough.

I can’t tell you how many people who have come to our programs here at BDI who’ve had A1Cs in the 7% range. You know, like Scott, like what you said, 7.2, 7.4. And you know, we show some of this data. And I think of this one lady who had diabetes about the same length of time as you Scott, and during the break, she started crying and she came up to me, and she said, “I can’t even believe this” and I didn’t know what she was talking about, you know, and she said, “you know all my life since I’ve had diabetes since I was a teenager,” she goes, “you know when I was a teenager, my management was a little bit scary. She goes, but you know, in my adult life, I’ve been below 8% but never below 7%.” And she said, “so, I have never gotten any, like, way to go, you know, I didn’t know I was doing, actually, in the grand scheme of things, pretty well.” And she said, “I always thought I was just like, super in trouble and doomed for complications. And she goes, my A1C is a 7.2 and I feel pretty good about myself, but I haven’t been. I’ve been feeling terrible about myself.”

And there’s no number for that. I mean, we talk about diabetes distress, but when does quality of life and how you feel about yourself as a person and how do you feel about your diabetes, when is that a metric that matters?

Scott Johnson:
I mean, it’s something that should matter, but hearing that story, Susan, I think that’s a pretty common experience for many of us.

And… It’s hard to know where, like, what does the playing field look like, right? Because in our diabetes education, we’re taught, okay, here’s how this works. You do this and expect that result. And then we very rarely meet that. At least I don’t. My diabetes doesn’t! You know, if I did the right things ten times, I might see expected outcomes only 50% of the time. And… And so there’s a certain part of having to safely let go and be at peace with the fact that diabetes is kind of strange in some ways. Your point with that story really resonates with me. It’s hard to feel good even with good numbers when perfection is the expectation that’s so often set.

Susan Guzman:

Bill Polonsky:
Especially when we don’t have any evidence that perfection is necessary. And that’s why this movement of the goalposts drives me crazy. I mean, Scott, with the international standard, you say for yourself, and we think we’ve talked about this before, to have a time and range goal of 70%, I mean, you’re out of range six hours a day. So yeah, things get wacky, and that’s apparently okay, right?

When people come in, and they’re working so hard to get that A1C really low, you know… 7%, that’s okay for other people, but I gotta get down to 6.2 or under 6%. And I go, from what I know, I say, look, what I think most people are trying to do and what you’re trying to do is, it’s the equivalent of, you wanna be safe.

It’s sort of like saying I wanna wear a seatbelt. And if you always wear a seatbelt, you know you’re gonna be safe. But what you’re doing, what you’re trying to achieve, is like someone who, I get to use a prop now, who isn’t just wearing a seatbelt but says, oh, whenever I drive, I should wear my helmet too. Because I’m definitely safer if I wear all this when I’m driving all the time. And I tell them, well, you are safer if you always wear a helmet when you’re driving, but you’re gonna look like me, right? You’re gonna look like a complete idiot. And in fact, it doesn’t help that much, right?

So anyway, I don’t think we’re gonna have any resolution to this in our brief conversation today other than I want people to think about it. I want them to talk with their healthcare provider. Susan says we don’t want people to drive themselves nuts. And yes, I want them to get to the safest places they can possibly be with their diabetes. And have a life!

Susan Guzman:
And have a life!

Bill Polonsky:
Yeah, talk about it with your healthcare providers.

Susan Guzman:
Thank you

Bill Polonsky:
Make sure you’re having this conversation because the goalposts are moving and sometimes it’s a good thing, and sometimes they’re moving for no earthly reason.

So we want to open a door and shine a light on this growing issue and encourage people to have more conversations with a trusted healthcare provider.

Anyway, what do you think? Last thoughts about that?

Scott Johnson:
Something that often helps me is when I think about my diabetes and my diabetes management, I’m striving to do as close as I can to mimicking someone without diabetes. And I wonder, even with someone without diabetes, I don’t think they are 100% in range, even with the fully functional, like everything is working how it should be. And so I try and give myself some grace in knowing that I’m doing the best I can most of the time. I also acknowledge that when things happen in life, as they do, I may not be able to focus as much on my diabetes and I don’t beat myself up over that if I can help it. Of course, I am always trying to do the best I can and be as safe as possible.

Bill Polonsky:
Susan, what do you think? Wrap it up for us here.

Susan Guzman:
Something I heard from Dr. Korey Hood, who is a psychologist who works with teenagers, is that one thing that he always remembers and always wants to advise healthcare professionals when they’re working with young people with type one diabetes–and I think this applies for everybody–Just to remember that whatever that person is doing in front of you that you might be concerned about to remember they’re doing the best they can with what they have going on with them.

I feel like that’s really true for no matter what you’re seeing in terms of A1C or any other outcomes we’re looking at is that people do the best they can on any given day with what’s in front of them. And you know, our job as healthcare professionals is to see if we can help make that path a little easier and safer.

Bill Polonsky:
Well, I think that’s about it, Scott. Take us home.

Scott Johnson:
All right, well, big thanks to everyone watching. And as always, thank you two for shining some light on this topic. I always find it thought-provoking and refreshing and sometimes even frustrating when we talk about topics like this, right? Where there’s no easy answer and more needs to be learned and studied.

It is always exciting to talk with you both. Thank you again, everyone watching and we’ll do this again soon.

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Scott K. Johnson

Patient voice, speaker, writer, and advocate. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent the position of my employer.

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…