People living with diabetes face serious complications if their disease goes unchecked. Learn how experts are changing limb care and amputation in America.
Featuring: David Armstrong, M.D.; Tamara Hannon, M.D.; Jeffrey Robbins, M.D..
Welcome back everyone. So far this season, we’ve talked about the factors behind diabetes, and we’ve listened to the stories of those living with diabetes. This episode, we’ll learn about an under reported serious complication of diabetes that threatens the lives of people dealing with this condition. Welcome to The Problem, I’m your host, Phil Lofton. Life with diabetes comes with unplanned hurdles and complications, here’s Dr. Tami Hannon, a Regenstrief affiliate scientist, and Director of the Clinical Diabetes Program at Riley Hospital for Children with more on the roadblocks people with diabetes can face.
We divide the complications into what we call acute, or they could happen at any moment versus chronic, which means that they develop over long periods of time. Oftentimes the scariest complications are the acute complications because they can happen today. So a severe, low blood sugar can cause you to become sick right now, it could cause you to have a seizure, it could cause you to pass out, become unresponsive and need emergent care and assistance from another individual. That’s generally portrayed in the movies and plays out in real life to be the scariest thing associated with being treated with insulin. The acute complication of having low blood sugar, that you can’t treat yourself. Another acute complication is diabetic ketoacidosis. This happens because when your sugar levels in the blood are very high and you can’t pull the sugar into your cells to use that sugar for energy, your body has to have an energy source.
So what it does is instead of sugar, it will lose fat. And when your body runs on fat for energy, it can do that just fine, but it makes something called a ketone, which is an acid molecule in your blood. And as ketones build up, your blood becomes more and more acidic and this can cause you to be very sick. So when people talk about keto diet, what they’re talking about is eating so little sugar that their body runs on fat and their body will make ketones and it is doing this, and so you can measure those. A person with diabetes has absolute insulin deficiency, a person on the keto diet is not, so person on keto diet, generally doesn’t cause diabetic ketoacidosis, you have to have diabetes to have that. But diabetic ketoacidosis then can cause coma because of the acid levels impacting the brain. And that’s a condition that requires ICU level of treatment. So those are the two acute complications of diabetes. The chronic complications of diabetes are because the body doesn’t like to have too much sugar on it.
Dr. Hannon says, it’s almost like if you were to take soda or another sugary drink and just cover a table in it every day without ever wiping it up. If you were to do that, she says things could get out of hand quickly.
Over time what happens to your table becomes really gummy, really sticky, it doesn’t function as a smooth surface like you need it to. So think about the insides of your blood vessels, think about if there’s sugar there all the time. So the analogy is that that sugar does damage over time because it sticks to stuff. It sticks to stuff and our body doesn’t like that, particularly the very small blood vessels in your eyes and in your kidneys and on your nerves. So your nerves are very small, the blood vessels that feed your nerves are very small and those get gummed up, they’re not functional anymore when the blood sugar has been high for a long period of time. And so you lose blood flow or you have damages to those blood vessels that causes the complications in the eyes, in the kidneys, in the fingers and toes usually because those are where the very small nerves are, and the very small blood vessels are. And then in your large blood vessels, that can impact your heart. So that’s the reason for the complications.
And then the complications can get worse over time, because if we don’t have the blood flow to our organs or in our body, then our body has trouble fighting off infection. Or once something gets infected, we need the blood flow there to clean that out. Antibiotics can’t get there if the blood flow there isn’t good. And so that’s when we talk about long-term complications that people having ulcers and things on their skin or having to have amputations because the blood flow there is poor over a period of time. And they get things like infections and sores and things that never heal and that’s dangerous because that infection can spread to the whole body.
Life with diabetes is a constant calculus, a world of decisions, scans, checks, and monitoring. As a friend of mine once put it, people with diabetes have to live every moment of their lives with a level of awareness of their bodies that’s much more scrutiny than those without diabetes might give ourselves. Because if they don’t, the consequences can be dire. Here’s Dr. David Armstrong, founder and co-Director of the Southwestern Academic Limb Salvage Alliance.
Of the 30 give or take 30 something million now in the United States, about half of people with diabetes at any given time are going to have what we call some degree of loss of protective sensation, they’re going to have some neuropathy. And that is the silent sinister syndrome if you will, in the midst of this terrible silent sinister syndrome that we’re talking about. Because people can quite literally wear a hole in their foot, like you or I would wear a hole in a sock or a shoe, that hole is also known as a diabetic foot ulcer or a diabetic foot wound, you might hear it. And that happens about every, give or take 1.2 seconds now around the world, that’s getting more frequent, not less frequent. About half of those wounds are going to get infected. Once that happens, give or take about 20% of those folks are going to be hospitalized. And that’s why there’s an amputation now, every 20 seconds around the world and every 20 seconds, that’s a tragedy.
And it’s our goal here and our programming, I think in a number of other programs around the world to eliminate what we call preventable amputations over the next generation. And I think we can do it and we can do it together as a family. This is a hard problem. And we have a saying in our group, hard things are hard, you can take them one step at a time, so to speak, but hard things are hard. And it’s multi-factorial, and it’s easy to talk about even in a great podcast like this, that tackles hard problems, but it’s a challenge.
Dr. Jeffrey Robbins, Director of Podiatry Services at the VA knows that challenge all too well. In his work, he tries to communicate the risks of amputation to patients, but he says we could be doing a better job of informing patients of those significant risks.
The five-year mortality rate for prostate cancer is about 8%, for breast cancer it’s about 18%, for Hodgkin’s disease it’s about 18% and those are tragic. But for a diabetic foot ulcer that heals it’s 42%. And if it goes on to amputation it’s 48%. Now this is hidden, this is not well known. When people get a diagnosis of cancer, first of all they don’t hear anything else after that, they’re terrified. Then once they get some information, then they’re determined to ensure that the cancer’s not going to beat them, they’re going to fight. They’re going to change their lifestyle, they’re going to improve their nutrition. They’re going to do whatever they need to do, meditation, whatever they need to do. They’re going to go to the ends of the earth to prevent that cancer from killing them.
When we get a diagnosis of diabetes however, we say, don’t tell me I have to exercise and don’t tell me I have to change the way I eat give me a pill or give me an injection. We don’t look at diabetes as a fatal disease, we look at it as a chronic degenerative disease, which it is. But when you look at those mortality rates and you recognize that it is as serious as cancer, it changes your perspective. In fact, a colleague of mine, Jim Robel likes to use the term, I’m a four year ulcer survivor to give the proper motivation to continue to do those preventative things, those health things. We also live in a system, we don’t have a healthcare system, it’s a tremendous fallacy, what we have is a disease care system, we have doctors who are really good at tertiary prevention, arresting and retarding a condition once it exists. And there’s value in that, we recognize that when you have a problem in infection and ulceration and amputation, there’s a code, a compensable code, we see value.
Primary prevention, preventing a disease before it occurs, has no value in our system. There’s no compensation for it, there is no sound than a limb not being amputated makes, there’s only sound when it is amputated, but then we know. So when we look at all the people that haven’t had reputations in the diabetic world, they have no voice when you think about it in those terms. So the idea that we have a whole system of care that’s not designed to prevent the amputation, but to respond to the signs and symptoms, once it’s already a problem is fundamental and a thing that we need to change in order to get a handle on this.
Now, if you’re like me, you might be wondering whether the mortality rate just has to do with diabetes related amputations or whether it covers all amputations, like those that soldiers might receive in battle. Dr. Robbins, let me know that comparing the two is a nearly apples to oranges comparison.
Traumatic amputation, lawnmower, or even theater for us, military amputations, those kinds of things, these are healthy people for the most part and so they heal from their amputation, they get a prosthetic device, they move on. They want to run, they want to do all the things they used to do, hunting, so on. For a patient with diabetes, they have one arm tied behind their back because of their diabetes. They’re already compromised, even without an amputation, patients with diabetes have significant cardiovascular disease that will ultimately do them in, if you will, cardiovascular disease is still the number one killer in the United States. And we know that patients with diabetes not only have cardiovascular disease, but it progresses at a faster rate. So naturally, independent of the amputation patients with diabetes have a smaller lifespan because of the diabetes.
To put it a little differently, remember Dr. Hannon’s metaphor of the table covered in soda. Basically the amputation is a result of years of accumulated damage to blood vessels, veins, and arteries. That damage isn’t reversed just because the limp is removed. But if there’s a public health crisis happening with side effects like amputations and mortality rates worse than all but the deadliest cancers, why aren’t we hearing about it more? Here’s Dr. Armstrong with his thoughts.
We’re really good at responding to emergencies. I think as a species and even collectively, we become really good at mobilizing in times of war, in trauma, traumatic events. We have elite trauma centers around the world and around the country to take care of these things, but we’re not very good at, our silent, quiet, slow moving complications and disasters because these are not immediate threats to life and limb until they are. And that’s the problem. We have these complications that sneak up on us and we end up with chronic complications that become acute on chronic complications. And it’s the management and mitigation of those acute on chronic complications that is the bane of our medical existence, whatever our specialty in medicine, whatever our station in life, these are things that we have to deal with. And 2009, doesn’t seem like very long ago, or maybe it seems like forever ago with the time dilation from this epidemic from COVID. But that was before all this in a public health sense, might’ve been the most important year in any of our lives before all of this, or maybe it still is.
Because that was the first year, data seemed to show, and a couple of years before up to it, when more people died from non communicable diseases, in the history of humanity, it was the first time that people died, more people died from non-communicable diseases than from all the plagues in the world combined. Yeah, pick your plague, cholera, malaria, chicken Gunyah, Zika, et cetera. And that was a first. And so a switch was flipped and short of these other sort of blips, it’s unlikely to change back again. So you have the people moving from being agrarian, getting close together, getting diseases. And then instead of dying from disease, they are now dying from, as it were, decay. And it’s these diseases of decay as it were proverbially, that are now the bane of our existence.
But then when you add in these diseases of decay and what are they, they’re cancer, cardiovascular disease, diabetes. When you add these things in to a communicable disease and an epidemic like we’re going through right now, then it equals death. It just, it cranks up to 11. And so what we end up with is this amazing figure that fully 40%, depending on whose data you look at, of people that are dying from COVID-19 related complications have diabetes. That’s not an accident, but it’s silent. And almost everyone receiving a leg amputation, short of those that are lost in trauma are losing it because of diabetes as well. But really no one’s talking about either of those things. This problem is as bad as a bad form of cancer. If someone has a wound, their five-year mortality is give or take about two, it’s actually two or three times more greater likelihood the person is going to die that year, when they have the wound. And then their five-year mortality rate is about 30% just with the wound.
If they get other complications like significant vascular disease, which many patients do, fully half of people have some degree of peripheral artery disease. You’ll hear people say PAD, that’s like CAD coronary artery disease, peripheral artery disease. And that kicks up that five-year mortality. And then if someone’s had an amputation, it’s on the average around 60% up to 70 or 80. So this is a five-year mortality. So this again is as bad as a bad form of cancer. And you want to talk about a hard problem. So there are plenty of people right now, chatting on Zoom or on podcasts, or take your pick, talking about breast cancer and colon cancer, lung cancer, skin cancer, and they should be, but I guarantee you that we two, we happy two right now, not even we happy few, we happy two are the only people talking about this, and you want to talk about a hard problem and a silent sinister unmet need. Well, here you go. And the data are what they are.
But getting back to your great question, are these things, is it a fait accompli? That’s French, fait accompli. Is it a fait accompli that someone that is going to develop, that has a wound is going to get an amputation? It is absolutely preventable and in almost every case. If a patient is, if a person he or she, that has the wound gets in to see his or her foot doctor, their risk for an amputation over the next one to six years reduces anywhere from 40 to 80%, if they actually have an open wound, this is a crazy good number. So usually when we’re talking about technologies or anything, often the less you need something the better it work. When it comes to folks looking after your feet, whether it be toe doctors like me or flow doctors, like my friends and colleagues that I work with every day here at USC and other places around the world, the risk for a high level amputation goes way down. And that is really good news.
And then if you add in the diabetes specialist, or just the general practitioner into that scheme, the team gets even more powerful. So it’s almost like you’re assembling of a dream team with the patient at the center, but when you’re adding these folks in, depending on where they are and what their complications are, the relative risk and the reward is powerful.
Doctors like Dr. Robbins at the VA are doing their best to take new approaches to letting the public know of the risks of amputation. Sometimes with unexpected inspirations.
We have all this information, we really have good information and we have good advice to give patients. We know how to prevent these things, but we cannot convince patients to make voluntary changes in their behavior to save their limbs, to save their lives. And as I was contemplating, when I was writing this article, there was a knock at the door and it was the UPS guy with a large package for me, actually was for my wife. And I called to my wife and I said, “What is this?” And she says, “It’s our new steamer.” I said, “We needed a steamer?” “Yes, we did.” “I don’t remember hearing that we needed a steamer.” “Well, I saw a commercial.” I said, “Well, tell me about this steamer.” And she did. She told me all kinds of details. It’s going to clean our house. It’s going to clean our clothes. It’s going to take wrinkles out. It’s non-toxic, the grandchildren can play without worrying about any chemicals. It’s wonderful.
I said, “How long is this commercial?” She said, “About a minute.” I said, “So you got and retained all of that information and were convinced to buy something you didn’t need, nor did you want in one minute?” And she says, “Well, we do need it.” And I said, “Thank you for making my point.” And she says, “By the way, I saw the commercial twice.” I said, “Okay, two minutes. Great.” So then it occurred to me that we use a rather outdated method of educating patients. You come to the doctor, you come to me with a foot problem and I basically say, “Be quiet and listen to what I’m going to tell you.” And then I tell you what I have to tell you. I give you a tremendous amount of information, more information than most people can handle. Then I say, “Do you have any questions?” And you say no, because you’re so confused. I assume I did a great job and you leave no better than you were when you came in.
Now, I might even give you a piece of paper, but I haven’t convinced you. I haven’t motivated you to take the changes that are necessary to make those voluntary changes to your behavior, to save your limb and save your life. So what we did was we developed a poster and recognizing that advertising is a hugely successful way of convincing people to do things. I mean, after all, we watch TV, there are commercials that are running for things you cannot buy, the medications that they advertise, you can’t go out and buy them. Who’s that for? Who is that for? What’s for you to go to your physician to convince them, because you want to run through the meadow and feel the way that person felt, however, they really got there. But my point is that we need to take a page from advertising and start to market prevention to patients.
So we developed a poster at the VA called the WIN poster. The first portion of it says, “Don’t let your diabetes take your leg, win instead.” So that simple statement, which can be read in less than five seconds, don’t let your, you own it, diabetes, what it is, take your limb, serious consequence. When instead I got some control. Underneath that is a picture in shadow of a man and a woman, both who had a BK amputation and both on crutches, underneath that is the acronym WIN, wash your feet daily, inspect your feet daily, never walk barefoot. Three simple things when instead, and we posted those in our primary care clinics, in our podiatry clinics, so that patients who are sitting waiting for their appointments, and we all do it, we all look on the walls, we look at the pictures, we look at the posters. The posters are too detailed, we generally don’t read them, but when they’re not detailed and we can read the entire thing, we do.
And time after time, after time coming back to the clinic and what have you, and continuing to get that motivational advertising, if you will, helps to convince patients to make those voluntary changes in their behavior, because they have the control. I’m giving you the keys back to you. You take control. I’m not going to have the amputation, you are. I don’t want you to have the amputation, I don’t want to do the amputation. Here’s what you can do to prevent that.
That Dr. Armstrong thinks that this sort of approach, changing the messaging and playing to patient’s motivations could be the key to making real change.
This problem, as we’ve talked about, this problem is, it’s common, it’s complicated, it’s costly like cancer. And everyone lives in metaphor and simile, so you have to say, this is like this, or this is, that’s how we learn, that’s how we navigate the world. This problem that we’re dealing with, very few people care about it. And why should they? Very few people care about, unfortunately about diabetes, they tend to blow it off because it’s so quiet, silent, sinister, even fewer people care about feet in diabetes. But I think we’ve made this case that unfortunately, when it comes to morbidity, mortality cost complexity, the foot in diabetes is a little like cancer when you have complications associated with it. So if that’s the case, then having that discussion with patients when they get a complication or before they get a complication that this is going to shorten their life. That talk is really hard to have, even if you’re the most skilled, gifted oncologist or oncology nurse that has that discussion all the time with patients and folks that are living with, or have succumbed to, or have survived cancer. It’s a hard thing to have.
We have to have it better as folks who take care of people with diabetes, whether we’re a diabetes specialist, whether we’re a general practitioner, a nurse, a therapist, or a surgeon taking care of them. So that talk to our patients, to policymakers and to other clinicians is really important. And that discussion elevates this problem instead of being 11th on everyone’s 10 most important things, or maybe 51st, maybe it’s 50th or maybe it’s 10th. And so if we can just bump it up there just a touch, we can affect big change. And we see that already, then I think we have something that can really make a difference and help our patients move through the world a little better every day.
Join us next time when we look at some of the biggest advancements made in diabetes prevention, we’ll see you then on The Problem. Music this episode was by Everlone and Blue Dot Sessions. Our theme and additional musical cues were written and performed as always by Arterial Motives. The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at regenstreif.org and see bonus content from this episode, including sources, pictures, and more at regenstreif.org/theproblem. The Problem is written, hosted, edited, and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson and Jen Walker, web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker. Special thanks to this season’s advisory council, including Tami Hannon, Janet Panoch, Lisa Yazel, Julie Pike and Tiffany Doherty.