Diabetes is a disease that affects millions of people, and it has a long history. Learn about diabetes, its history, and how it has impacted healthcare in this season premiere.

Featured Guests

Tamara Hannon, Aaron Carroll, George Huntley, David Marerro, and Ann Albright

Transcript

Phil Lofton:
Welcome back, everybody. Over the past few years, The Problem has tackled some of the biggest issues rooted in healthcare that have spread out to affect society on the whole. We’ve talked about the opioid crisis, Alzheimer’s disease, and the ongoing COVID-19 pandemic, but for this season, we’ll be examining a condition older and more widespread than anything we’ve covered so far. Diabetes is a condition that affects a staggering amount of people. In 2018 34.2 million Americans, or 10.5% of the population, had diabetes. It’s a costly disease too. In 2017, total cost for diabetes in the United States were estimated at $327 billion. And while a disease this widespread might affect people in your life, it’s possible you might not know exactly what diabetes is. Here’s Dr. Tami Hannon, a Regenstrief affiliated scientist and an expert on diabetes who helped make this season possible.

Tami Hannon:
Diabetes is a condition where a person’s blood sugar is too high for the best health. Diabetes is actually defined by what the blood sugar is. However, diabetes or high blood sugar is caused by many things. There are probably over a hundred different things that can cause your blood sugar to be in the diabetes range. Typically, we think of two types of diabetes, but there are actually many causes of diabetes. When we think about how the body works, the main reason why the blood sugar gets too high is because once the sugar is in the blood, a hormone called insulin is also secreted into the blood, and that hormone brings the sugar out of the bloodstream and puts it into the cells that need to use the sugar for energy. So principally, your blood sugar stays too high either if your body isn’t making insulin, if it’s not making enough insulin. Or if it is making insulin, it may be even making a lot of insulin but the body tissues are not responding properly to the insulin, so that insulin isn’t working.

That’s what happens in the body, but we define the different kinds of diabetes most of the time by actually the reason why insulin isn’t there or it isn’t working. For instance, type 1 diabetes happens when the body stops making insulin. This is an auto-immune disease where the body is actually destroying the cells in your pancreas that make insulin because the immune system thinks that these cells don’t belong in our body. It’s confused. Generally, we think that happens because the immune system gets triggered to get rid of something like a virus, and it somehow senses that something inside those insulin-making cells is not supposed to be in our body so it has a reaction to those cells and those cells eventually die over time and so a person stops making insulin and insulin is absolutely needed to survive. And so as the blood sugars get higher and higher and the insulin levels get lower and lower, the person gets sick with symptoms of having too-high blood sugar. That’s type 1 diabetes.

The opposite of this happens in what we call type 2 diabetes, which is the most common form of diabetes in the world and generally happens in adults, but sometimes happens in kids. Type 2 diabetes, actually the body can still make insulin. There’s no immune system problem causing destruction of those cells in the pancreas that make insulin. And actually the body makes a lot of insulin if you measure how much the body is making, but what we know is that even though that insulin is in the bloodstream, it’s actually not doing the work to pull the blood sugar from the blood into the tissues. What we call this condition is a overall body resistance to the action of the insulin. Sometimes we talk about insulin resistance and that’s what we mean by that, that the body is making insulin, but the body tissues aren’t really responding to the insulin.

Phil Lofton:
Welcome back to a new season of The Problem. I’m your host, Phil Lofton.

Diabetes has a history that stretches back millennia. In fact, we see records of the condition being discovered by several ancient cultures, including Greece, India, and Egypt. In those cultures, there were some treatments available, but many tended to, in retrospect, make diabetes worse, treatment such as excess feeding, prescribing wine or starvation diets. Some of the biggest innovations in treating diabetes and ensuring that people with diabetes could live healthy, full lives are very recent. Here’s George Huntley, CEO of the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition on how treatment and monitoring has changed over the last century.

George Huntley:
You can’t start that conversation without discussing insulin, which was discovered 100 years ago this year. So in 1921 insulin was finally discovered and created through, I think, pigs’ pancreases at the time by two doctors up in Toronto, Canada, as I recall — Banting and Best. Prior to that, you died of type 1 diabetes. You lived about three, six months — even less — and you just didn’t live. Once that happened, people then could start living, but it was crude. Blood testing, so you can see where your number was, you had urine strips to see if you were spilling sugar into your urine, which is a very common thing that happens when your blood sugar runs high, but it doesn’t really give you actionable information at that point in time. Then they got finger sticks.

When I was diagnosed in 1983, home blood finger monitoring, blood glucose monitoring through finger pricks, were first hitting the market. It was three minutes to get a result, but that was life changing. And I realized that at the time, because my life was just being changed with diabetes, but that’s one. Then those blood tests sped up and now they’re five seconds on a finger stick. Now, you’ve got the continuous glucose monitors. That’s a game changer because now instead of just getting the finger stick test, which tells you what you are at that moment in time, the continuous glucose monitor tells you the entire graph of all the points in between, gives you your trends. And then you can really fine tune your control.

Phil Lofton:
Insulin is a controversial drug though, when it comes to discussions on how pharmaceutical prices have risen in the past few decades. But interestingly, the increased cost of insulin is a little bit more complex than stories like Martin Shkreli’s raising of Daraprim from $13.50 to $750 a dose.

George Huntley:
Insulins have improved over the years as well. The first issue with pig pancreases, and they were also making it out of cows, beef pancreases as well, back in the day. And a lot of people were allergic to it and had bad reactions to that. And you would have negative reactions, it wasn’t as easy to manage your… And pure if you will. Somewhere in the 70s and 80s came out with the human Humulin and some human insulins. Now they’ve come up with analogs that started in the 1990s and they are so much smoother. When I first was diagnosed in 1983, I was on a drug insulin that would peak in two to three hours and then have another peak in six hours or more. So I would get up in the morning at seven o’clock, I would take an injection of NPH and my lunch dose is a wave of insulin from that 7:00 a.m. shot would kick in somewhere between 11:00 a.m. and 1:00 p.m.

Now, if you had a new lunch planned and your insulin kicked in at 11:00, you can’t wait until noon. You have to deal with that right then and there. So you eat lunch at 11:00 and then you watch everybody else eat at noon, when you got your normal business meetings. So the ability to have a quality of life, and that’s really, a lot of this is ability to manage and which allows you to avoid complications, which we should talk about, but also the quality of the patient’s life is exponentially better.

Phil Lofton:
But still even taking innovation into account insulin has had an intense, even exponential rise in costs over the last 20 years. And if innovation were the only factor driving that cost increase, we might expect to see similar costs in diabetes care in other developed nations. But that just isn’t the case. According to findings by T1International Americans spent five and a half times more out of pocket every month for diabetes care than individuals in the UK. On average, American diabetics spend more than 7% of their monthly income on just managing their disease. That includes insulin, testing strips and other equipment. It’s nearly as much as Americans spend on food in a given month. According to Dr. Aaron Carroll, Regenstrief’s Vice-President of Faculty Development, this rising cost of medicine is an unexpected result of the American healthcare system.

Aaron Carroll:
Our system is built around a model where it’s incredibly, I don’t want to say easy, but the guard rails are not set up well to prevent people from trying take a lot of money. So, in a strictly capitalistic sense, companies are trying to maximize their profits at all time. Because of the way that healthcare is set up, where both the person prescribing the drug and the person taking the drug are somewhat insulated from the costs because of the way insurance is set up, it is possible to charge a lot of money, spread that cost over a lot of people and therefore get much more than you could if you just tried to get people to pay it individually. And because of the way that it’s set up, there’s a lot of real, solid economists would tell you that healthcare does not function like a functioning market would. And that to expect it to do so, which we often do, is a mistake.

So companies can charge a lot of money for drugs because insurance will often swallow the cost, the vast majority of that cost. And then people are like, well, I want the drugs that work and the drug companies can set any price pretty much they want. And the way that insurance, often we have reimburses and that includes Medicare, will often pay incredibly high prices. And because of that, everything costs a lot of money. You can charge a lot for the tests. You can charge a lot for the drugs. You can charge a lot for the equipment. You can charge a lot. And when you’re spending three plus trillion dollars on healthcare, there’s plenty of money to spread around and go around. And you also have to understand that with the patient population, like those who have diabetes, there’s somewhat a for about, I mean, they have to test many of them multiple times a day. You can charge for those tests and people have to pay it, which means that insurance has to cover it.

They have to give themselves drugs, often multiple times a day, which means they have to cover it. They have to constantly monitoring it. And it’s not going to get better because the way especially type 1 insulin, that is a lifelong disease where there’s no expectation that at some point you’re going to be able to stop doing all of the things that you need to do. So you’ve got a lifelong customer, who’s got an insurance company that’s going to have to pay. That is a system that is set up to wind up spending a lot of money.

Phil Lofton:
So with regards to improving health outcomes, what role have you seen at, in your decades as a clinician, but also just the extensive research that you’ve done into how the healthcare system operates? How have pharmaceutical and insurance companies improved health outcomes? What have they done that has been helpful? What have they done that has moved the needle in a positive way?

Aaron Carroll:
I mean, let’s be honest, drugs are amazing. There are a lot of drugs that do a ton of good. I mean, without insulin people with diabetes would die. I have ulcerative colitis. I have been in remission for almost a decade because of the drug that I take, which is generic, cheap and fine. It doesn’t even cost me that much. There’s any number of illnesses where drugs make asthma. I mean, for instance, like albuterol works, it’s a miracle for cancer. Chemotherapy often works, it’s a life-saving drug, immunotherapy is amazing, look out in the world right now. The two vaccines that have been approved so far in the United States are a wonder, I mean, in less than a year, these drug companies have come up with an mRNA vaccine, which is likely going to help us end the pandemic in the near future. We should be paying through the nose for this. I mean, it’s like, I’m not in any way trying to advocate that it’s kind of miracle should not be met with financial success, we should reward that.

The problem is that there’s a lot of drugs which are not nearly as good, or as miraculous, a lot of drugs are marginally better than what already exists and cost a lot of money. And therefore drug companies have to spend a ton of money, marketing them, trying to sell them. Every single drug that I mentioned already, you’ve never seen an advertisement on TV. You don’t need to sell albuterol, it works. You don’t need to put commercials on for chemo or for steroids because when someone has a disease that requires one of those, we give the drug, we know it works. It’s a locked in market. There will never be a commercial for the Pfizer or the Moderna vaccine for COVID. They don’t need to market it. It’s a miracle. The problem is that lots of drugs are marginally better and we don’t differentiate or spend money differently when a drug is marginally better than if it’s a miracle.

And that is where we sometimes get into arguments. And when something makes news in a bad way, it’s because they’ve taken a drug which has been around forever, that works, and all of a sudden jacked up the price. Be it an EpiPen, be it a longstanding antibiotic or perhaps another kind of drug that treats something acute, but where there’s a tight market or small market and all of a sudden the price gets checked up for no reason, that’s when people get very upset or they sometimes get very upset when there’s a drug that there’s no choice, like it is life saving and necessary say, insulin. And we treat it with the same kind of copays and deductibles and high out of pocket spending. Then we do something or underline optional and that’s when people also get upset because they’re like, I have no choice. I must take this drug or I will die. And when we charge a lot of money in those respects, or it gets very difficult for people to afford them, then they get very angry.

The way that we cost this out and the way that we reward companies that make these drugs often doesn’t follow a tight correlation with outcomes and others. It’s not like the best, most life-saving drugs are the ones that make the most money. It’s often just sometimes whimsical. And that is very difficult for people to wrap their heads around.

Phil Lofton:
Dr. Carroll has some ideas for how we could retool the system to provide better care with less burden on patients. Care that focuses on prevention of bad outcomes by prioritizing good, regular maintenance of chronic conditions.

Aaron Carroll:
Well, I think one thing that we could do a much better job of that we do not, is in the same way that we don’t figure out how to pay for drugs based upon better factors like outcomes. We don’t use things like cost sharing depending upon need. And so there’s a difference. First of all, I think deductibles are absolute crap. The idea that we just say blanket the first $1,000 or $2,000 comes out of your pocket is just dis-incentivizing people from getting healthcare. We should care much more about that in a healthy individual than someone who has diabetes, where on day one, they have to spend X amount of money. Why have a deductible? What’s the point? We’re not trying to get them to think twice about getting the insulin, we want them to have the insulin. I can make a solid argument for paying them to take the insulin, but we still ask people with chronic conditions to have the same levels of cost sharing and the same types of deductibles and co-pays, and co-insurance that we do everybody else, that makes absolutely no sense.

Cost sharing is a mechanism by which we try to make people better, consumers to think twice about whether they need the care that all of a sudden they’re asking for insurance companies to cover. And the reason that cost sharing exists is because it works. In randomized controlled trials, we have found people are less likely to spend their own money than the insurance companies money on healthcare. The problem is that that calculus is very different if you’re a person with diabetes or if you’re a completely healthy 30 year old. One, I’m thrilled if a 30 year old thinks twice about whether or not they really need that extra MRI, I’m not thrilled at all if somebody with diabetes is thinking, well, maybe I could just skip insulin this week. Those are totally different. And we treat them exactly the same way. And no matter how many times I’ve written about this, I cannot seem to get any traction on the idea that we need to massively redesign the way we do cost sharing.

Phil Lofton:
Well, we often perceive human behavior as existing within individuals. It’s also largely influenced by external factors. Policies, for example, are intimately related to behavior. As Dr. Carroll alluded to, altering cost sharing policies can lead to better health outcomes in diabetic patients by influencing their behavior, more specifically by influencing their willingness to get treatment. There are several other external factors that influence the way people behave and they all interact with each other. Dr. Dave Marrero studies, this very thing.

Dave Marrero:
Well, diabetes has been around for 5,000 years, but it’s only in the last three decades or so that the numbers of people that are coming down with what we call type 2 diabetes, which is a different form from the insulin dependent type of diabetes, which is called type 1. The other form is called type 2. And there’s an awful lot of type 2. About 90% of people in the world have type 2 diabetes. It’s a disease characterized by insulin resistance and the inability of the person to utilize insulin or to make sufficient amounts of insulin, which is the hormone that we all need to break down everything that we eat — it’s a useful fuel — and to get that fuel to the cells in the body.

Over the last three decades, four decades or so, there has been an incredible, almost meteoric rise in the incidence and prevalence of type 2 diabetes worldwide, and in particular in the United States. The reasons for that really are somewhat complex, but it partially is defined by the increase in obesity. So obesity is the primary risk factor for developing type 2 diabetes as one of the hallmarks of the condition. So many people with type 2 diabetes have excessive weight or frank obesity.

Phil Lofton:
The study of what drives the social factors behind diseases like diabetes is called social ecology. Here’s Dr. Marrero with more on the social ecology of diabetes and how we arrived where we are today.

Dave Marrero:
Social ecology as a discipline is based on a multidisciplinary systems model that tries to look at contemporary problems and social issues from a framework of interacting elements. So looking from the individual to the family, to the community, to the policy, if you will. And in terms of diabetes, the social ecology of diabetes is very complex. We’re talking about changes in our culture, for example, at the policy level where we are allowed now to buy incredibly high-fat foods that are not particularly healthy and they’re everywhere now. Fast food is something that has arisen in my lifetime. When I was a kid, there weren’t that many places you could get high-fat, high-calorie foods, but now they’re everywhere. We know that the ecology of family dynamics and how people eat and what they eat, the portions that they eat, have evolved very significantly in the last 30 or 40 years, that has given rise to literally an epidemic of obesity.

So if you look at any data that looks at the rise of obesity, starting from, let’s say, 1950 and moving forward, it’s like almost a vertical line. It’s going up very quickly, and with it is the increasing onset of type 2 diabetes. So they’re linked hand in hand. The problems with these secondary conditions is they’re very expensive. You’re talking about the leading cause of kidney disease, for example, type 2 diabetes, which oftentimes resolve some transplantation or dialysis, which is a very expensive treatment to deal with. You’re talking about people losing work capacity and having to take time off from production and things like that because they go blind or because they have the inability to feel things in their hands or their feet. You’re talking about cardiovascular disease. And while heart attacks are a leading cause of death, it’s not clear to us whether that is, in fact, heart attacks associated with diabetes or just people having heart attacks without any influence of diabetes, because they’re so intertwined.

So in the last few years, we’re talking economic impact of diabetes almost $400 billion. So it’s really expensive. It has a big impact, not only on work and productivity, but on people’s lives. It’s very difficult to live with diabetes. It’s difficult to have family functioning with diabetes. It’s a bunch of elements that interact with this condition.

Phil Lofton:
Elements like race, economic status, family risk factors, access to food and access to care. These elements don’t just add complications to diabetes, they’re also risk factors for it in the first place. Here’s Dr. Ann Albright, director of the Centers for Disease Control and Prevention, Division of Diabetes translation, on the risk factors of diabetes and the misplaced stigma that can sometimes be applied to diabetes.

Ann Albright:
Those are risk factors. And so it’s important for people to know their risk factors, that’s why taking a risk test is very important goes to get a sense of where you stand, and to talk to your clinician if you have risks, then you have a score on that risk test that would encourage you to talk to them. Because again, you may have no symptoms or they may be vague, and so going through those risks symptoms is very important, those risk factors is important. And then if you have those of symptoms, absolutely get in and get tested. Diabetes is a condition that has got a lot of stigma around it, particularly type 2 diabetes. And it really is difficult. We interestingly share some things with HIV AIDS and the opioid crisis in our nation. There’s a lot of stigma around these conditions. And type 2 diabetes, people say — and I’ve heard this — just scary enough, people think, “Oh, you’re fat and lazy. You’re just not taking care of yourself, you deserved this disease, you brought it on yourself,” is what you hear.

Unfortunately, that does nothing to help people, nothing. What you need to do is help people know where they stand and know how to take positive action to improve their health. And that’s constructive. Blaming people and wagging the finger and, oh, you don’t eat right. Or some people do the blame game themselves. They say, “Oh, I know I shouldn’t eat like this, but I can’t help myself. Oh, I just can’t.” Well, then get some help because it’s much better to not look back with regrets. And so, as you’re considering these risk factors and symptoms, people who are at risk, you do have to take action. You do have to take a step. And I know that that step can sometimes be scary, it’s not fun to receive a diagnosis, but when you do or you’re aware, then you can take action.

Phil Lofton:
This season, we’ll be exploring diabetes through the lenses of prevention, care management, and access to care and food. But first, next episode, we’ll listen to the stories of two individuals living with diabetes and hear how the condition has affected their lives. 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 Unregulated Spending.

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 regenstrief.org and see bonus content from this episode, including sources, pictures, and more at regenstrief.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.