Despite Advances, 'Diabetes Rising'
NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
Ninety years ago, the invention of insulin was hailed as the magic bullet for a terrible disease that was incurable, but insulin was just a treatment for diabetes, not a cure, and even with the understanding that with medicine, diet and exercise, patients can control their blood sugar, death rates from diabetes continue to increase, and increase dramatically.
Today, Type 1 and Type 2 diabetes affect some 23 million people in the U.S. alone. If that growth continues, as much as a third of the population could come to be affected.
In a new book, medical journalist Dan Hurley asks why a once-rare disease is exploding around the world, why doctors focus so much on treatment rather than cures or prevention, and on the importance of money, milk and dirt. He also describes his own experiences as a Type 1 diabetic for over 30 years.
So diabetics, explain to the rest of us what we don't understand about your disease and how it affects your life. Our phone number is 800-989-8255. Email us, firstname.lastname@example.org. And you can also join the conversation on our Web site. That's at npr.org. Just click on TALK OF THE NATION.
Later in the hour, a Google smartphone, ESPN in 3-D, and Apple's tablet computer rumors. Farhad Manjoo joins us to make sense of the latest tech news. But first, diabetes.
Dan Hurley joins us from our bureau in New York. His new book is "Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It." It's nice to have you on the program with us today.
Mr. DAN HURLEY (Author): Thank you, Neal.
CONAN: And as someone with no experience of diabetes, I have to say I was very surprised to read that while you monitor yourself regularly, you eat right and exercise, mostly when you can, and take your insulin regularly, that you can count on feeling terrible at least once a day.
Mr. HURLEY: Neal, this is - this disease they say is like a baby that never stops crying. It never stops demanding your attention. I would call your attention to the just-reported death of Casey Johnson(ph), the daughter of the owner of the Jets. She was a Type 1 diabetic with a history of hospitalizations for severe low blood sugars. I don't know if this is what caused her death, but I do know the terror of waking up in the back of an ambulance with a severe low, and I do know that Type 1 diabetes is now twice as common as it was 20 years ago and five times more common than it was after World War II.
So I want - what I don't know is why the FDA is holding back a lifesaving device called the artificial pancreas that could make life for people like me a lot easier by letting a computer track my diabetes like an autopilot.
CONAN: You write about that in the book, and we'll get to some of the complaints you have, not just about the FDA but about the diabetes community too, which - but anyway, you were talking about Type 1 diabetes. You describe at one point waking up with your daughter spooning marshmallow fluff into your mouth, your nine-year-old daughter.
Mr. HURLEY: Nobody wants to wake up with their daughter saving their life, and this is not a result of not taking care of your diabetes. In fact, the harder a person with Type 1 diabetes who takes insulin, the harder they work to control it, the closer their blood sugars are to normal, and that means we're always a cupcake away from a coma.
CONAN: And when you first adopted your regimen of monitoring yourself very closely, testing your blood sugar repeatedly during the day, closely watching your diet, exercising regularly, you describe meeting another writer who said, boy - who also had diabetes - and said, boy, you know, I'd rather die than live that way.
Mr. HURLEY: And then he did. He was a guy who wrote regularly for the New Yorker, and one day I read in the paper, he had passed away from a sever hypoglycemia. It happens - it's really unavoidable in the life of a Type 1 diabetic.
Some people are lucky enough, usually because they let their sugars run higher, but if you try to get low, and you keep it close to normal, you're on the razor's edge.
CONAN: If you don't keep it close to normal, then you risk doing what happened to the writer.
Mr. HURLEY: Yeah, you have - you know, all diabetics have tripled the risk of heart disease. It's the leading cause of non-traumatic amputations, of blindness, of kidney failure, and it has been growing so insanely. We have - I don't think people realize that 150 years ago a doctor could go most of his career and never meet a person with diabetes. This is something that is the disease of modern culture.
CONAN: And in fact, one of the correlations, and we'll get to obesity and overweight, and that's one correlation with it, but another one that you point out is money.
(Soundbite of laughter)
Mr. HURLEY: Well, there have been countless studies looking at associations with Type 1 diabetes across - around the world, and it's often been seen that higher rates of Type 1 diabetes are seen in more well-to-do countries. Whether - you know, I don't think anyone thinks that money causes diabetes - I hope not - but people do think that eating a healthy diet, what we think of as a healthy diet, getting - never having to face any kind of food shortages, sets up the body for a higher risk of later developing Type 1.
CONAN: Indeed, you say essentially our bodies were never designed with the idea that we would ever have to face the problem of too much food, and indeed never learned how to regulate the sugar right.
Mr. HURLEY: You know, it seems we've set up a world that is perfect for creating diabetes in so many ways. It's not just the food. It's the lack of time we spend outside in sunshine, Vitamin D is the sunshine vitamin. It increases your protection against developing diabetes. Persistent organic pollutants that are everywhere, they're ubiquitous in the culture, they've been found to have a 37-fold increase - that's 37 times likelier - to develop Type 2 diabetes. So the world we've living in is a diabetes machine.
CONAN: We want to hear from our listeners today, those of you who have experience with diabetes. What is it that the rest of us don't understand about your disease? Give us a call, 800-989-8255. Email us, email@example.com. Let's begin with Dave, and Dave's calling us from Jackson, Wyoming.
DAVE (Caller): Hello.
CONAN: Hi, Dave.
DAVE: How are you?
CONAN: Good, thanks.
DAVE: I'm a physician's assistant here, and I see a lot of diabetes. I work in a free clinic. We've seen a dramatic in the incidence of diabetes over the last few years, and for a while it seemed like we'd see, you know, one a week, a new diagnosis.
I attribute that partly to, you know, the advent of video games and, you know, not getting outside and exercising more, but I also see - it seems like in the mid-'70s, when the United States food industry started using more high-fructose corn syrup, we saw - we've since then seen a dramatic increase also in both obesity and diabetes.
CONAN: Is there a connection, Dan Hurley, that you've found or that the doctors you talked to found between diabetes and high-fructose corn syrup?
Mr. HURLEY: There was one study that saw an association specifically between high-fructose corn syrup and diabetes, and that study was later found to have been flawed.
What's clearly true is the more you weigh, the likelier you are to become diabetic, and this is a multigenerational effect. If your grandfather never went through a period of food shortages when he was a kid, say, living in Europe during World War I, you are more likely to get diabetes. This is a multigenerational, epigenetic effect.
So food is part of the story, but there's a lot of wheels turning in this diabetes machine.
CONAN: And Dave, thanks very much for the call. Indeed, you say yes, obesity's increasing dramatically. Diabetes is increasing faster than obesity is.
Mr. HURLEY: It's grown so ridiculously, it's almost impossible to keep up. This is - Type 2 diabetes is what everyone used to think of as Uncle Fred's disease, that he's 50, 60, he's overweight, he's not doing anything, and by golly, he developed diabetes.
Now they're seeing it in children, and there have been reports of children dying of Type 2 diabetes. This is like getting Alzheimer's in high school. This is crazy.
One-third of boys born in the year 2000 are now expected to have - develop Type 2 diabetes in their lifetime, and 39 percent of girls in their lifetime will develop it. It's really a pandemic that our society and our health care system have really yet to come to grips with. We're not going to fix this with another pill.
CONAN: And we're going to get to more calls in just a minute, after we get back from the break, but I do need to address a question that you address repeatedly in the book, and that is advice from so many doctors: If you just diet and exercise and take care of your insulin injections, monitor yourself carefully, you can control this disease.
Mr. HURLEY: Neal, if I could walk on air, I could jump off a cliff and not hit the bottom. The problem is, I can't walk on the air. And the problem for human beings to be told by a dietician, hey, here's what you're going to eat from now on - and I've been on the receiving end of this glib advice - it's good advice. I try personally, in my life, to control my diabetes as closely as possible, and it's been really important for me. I mean, I have no complications after more than 30 years. I would urge every diabetic to take the best care they can of themselves.
But if you step back and look on a societal level, you just know that giving yourself round-the-clock care, turning your diet upside-down, changing your lifestyle all because of some disease, is just not going to work, and it's not working.
CONAN: We're talking this hour with medical reporter and diabetic Dan Hurley. If you suffer from either Type 1 or Type 2 diabetes, call and tell us what we don't understand about your illness. Give us a call, 800-989-8255. You can also send us email. That address is firstname.lastname@example.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington. We got this email from Carol in Davidson, North Carolina: My sister was diagnosed with juvenile diabetes in 1969. Her pediatrician had not ever seen a case before. The doctors told my parents she would not live to see 21. She died at 39, in 1996, while waiting for a kidney transplant, but when I tell people she died of complications from juvenile diabetes, they tell me: People don't die from diabetes.
We're talking about this chronic and debilitating disease today and about the great deal we do not understand about it. Reporter Dan Hurley's book is called "Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It."
If you'd like to read an excerpt from his book about how mom Rikki Conley discovered a high number of children in her neighborhood diagnosed with Type 1 diabetes in Boston's wealthiest suburb, you can head over to our Web site. That's at npr.org.
We also want to hear from you. If you have either Type 1 or Type 2, what don't we understand about your disease? Give us a call, 800-989-8255. Email us, email@example.com. You can also join the conversation on our Web site - that's at npr.org - and click on TALK OF THE NATION.
And here's - Dan Hurley, we're referring to Type 1 and Type 2. They used to be called juvenile diabetes and adult-onset diabetes. Those terms aren't used anymore.
Mr. HURLEY: Doctors have really struggled for years how to distinguish between the two types, basically, and they finally gave up and just came up with these blank-sounding terms, Type 1 and Type 2.
Type 1 usually occurs when you're young. I got it when I was 18. Usually the oldest a person would get it would be into their 20s. A lot of kids will develop it, if they get it. And you need insulin. Basically your immune system has attacked the insulin-producing cells in your pancreas, kills them. You've got no insulin. You will die if you don't get insulin, and there's no diet that will save you except, you know, you do want to follow a healthy diet.
Type 2 is slower-forming. It's usually in later life. It's usually associated with being overweight, but as I've said, it's happening much more often in younger kids. It's being seen in the teens and the 20s, even in people that are not necessarily very overweight, and although everyone likes to seem to think that you could diet your way out of Type 2, it is, it is really tough to do that.
CONAN: Here's an email we got anonymously. I am 35. I had a stroke due to complications with pregnancy. I was diagnosed with pre-diabetes this year. I feel like I live with a death sentence each day.
Mr. HURLEY: It's not a death sentence. You know, I'm talking very seriously about this at a societal level. I have good friends - one of my best friends in my town is another Type 1 diabetic, woman who lives down the block, the wife of a good friend, she has Type 1. We're doing great, and with Type 1 and Type 2, if you are determined, if you follow the diet - there's lots of great tools. There's wonderful developments.
And I think, though, that doctors forget to - they get so lost in thinking, hey, we've got two dozen drugs for Type 2, we've got continuous sugar monitors for Type 1, we've got insulin pumps, isn't everything great? It is, at the very least, an exhausting disease, but you can - it should never be forgotten that you can really take control. It's just that, do you want to spend your life focusing on this?
Right now I have no choice, and neither does anyone else, but that doesn't mean we shouldn't try.
CONAN: You talk about some of the psychological effects too: predisposition towards depression and a condition you describe particularly with women: eating disorders, which you describe as diabulimia.
Mr. HURLEY: I've met with folks, and this is about one-third of young women apparently do this - they will stop taking their insulin to lose weight. And this is a very well-known secret among young diabetic women. They get - having someone tell you, hey, every bite of food is - your life is in your hands and you've got to control everything. Human being tend to be a little rebellious, and they don't like being told what to do.
So it's - this is why we really need some important breakthroughs to get past the current plateau that we've reached. There are good tools, but we need much more.
CONAN: We want to hear from diabetics in the audience, what we don't understand about your disease, 800-989-8255. Email us, firstname.lastname@example.org. Annalisa's on the line from Salt Lake City.
ANNALISA (Caller): Yes, hi. How are you?
CONAN: I'm well, thanks.
ANNALISA: Good, good. First of all, I just have to say, I'm so excited. When I turned on the radio to hear this program, I went: yay, finally, someone's talking about the things in diabetes that everybody thinks they know but don't actually know. So you know - I'm 33 years old. I was diagnosed Type 1 diabetic at 17. When I was 18 years old, I got on the insulin pump, which has been very wonderful. I just recently got on the continuous glucose monitoring system, which has been helpful as well, but still people think, oh good, then you're good, you're cured. And I go, no, no.
Anyway, I just wanted to tell you that for me, living with diabetes is kind of like the secret in your closet that you don't really talk about much because people are so - so many different opinions about it and so many different ideas about what should be doing, and they look at you and they go: Oh really? That's interesting. How can you go about doing regular day-to-day things?
And - so I don't actually - I wear my pump on the outside of my pants. People say: What is that? I used to teach, and my kids would say what is that? And I used to say, I was born sexless, and it's a device that actually, you know, gives me estrogen, keeps me from, you know, turning back into sexless. Or I'd say it's one of those - I'm in constant pain. It's a morphine pump, you know. I mean it was just - things that you just have to do because you have to deal with what's going on.
But I have two kids, and I had normal pregnancies for the most part. They were born three weeks early, both of them, but they were only about seven pounds, which is a normal size, especially for a diabetic.
So anyway, I just wanted to ask a question out there. It's dealing with doctors and endocrinologists, which I am ashamed to admit I haven't seen my endocrinologist in a bit because every time I go in I feel like I have just completely failed at my life and just wanting to maybe - from the doctor here being a diabetic and also practicing in the field - what if I should give to endocrinologists to help diabetics not feel like they are just failing when actually, in reality, when you look at it, I feel like that I'm doing relatively well in my life, so...
CONAN: Well, we should point out Dan Hurley is not a doctor. He is a diabetic and he's written a lot about diabetes, but he's not a doctor. But anyway, Dan...
Mr. HURLEY: I'm a reporter and a diabetic.
ANNALISA: Oh, okay.
Mr. HURLEY: But Annalisa, this is - really goes to the heart of the issue, and what I wish I could say to every person with diabetes and the people that know them and love them, and to the physicians, is - this disease, there is no such thing as perfection, that it's a struggle, and there is nobody who is wise enough to constantly accept this burden of having to control their sugar minute by minute by minute.
I mean, I'm sitting here. I have a continuous glucose monitor, and I'm looking, and oh, my blood sugar is 148. Twenty minutes ago it was 110. Where is it going? How can I do that? I'm on the radio. Hold on.
And so I think we need to accept that we are human beings and we were not put here to control our blood sugar and that we do the best we can, and if dieticians and doctors could begin to accept a little better that we're not screw-ups because our sugar is running a little high, we're human beings, and we've got more important things to do with our life than stare at our blood sugar all day. We do our best, we try, and you know, I think people with diabetes need to accept their inevitable failings. It is inevitable. There is no way to keep your sugars normal all the time, and you do your best and you try. This is why I think it's really important. There's studies being done on what's called the artificial pancreas where, you know, they take...
CONAN: I was just going to get to that. If you have that insulin pump and the glucose monitor, if you connect those with a computer, you have what you called the computer cure.
Mr. HURLEY: Yes. And this exists right now. I mean, I have on me a little continuous monitor that tells me my sugar every five minutes. I've got an insulin...
Mr. HURLEY: Right. And I've got an insulin pump. And the problem is that the FDA will not allow the data from the pump - from the monitor to control the pump. So my blood sugar can be falling, falling, falling. And if I'm asleep and I don't notice that it's trying to beep me to tell me to wake up, I could, you know, die from that. It - progress is needed, and a lot of researchers are very frustrated. The Juvenile Diabetes Research Foundation has been working tremendously hard. They're spending more than 10 million a year to get this to people. It's entirely doable. All the products exist. All we need is some final testing, and get the FDA to wake up and realize that people are dying right now. And they're being driven crazy by trying to be their own pancreas.
CONAN: And Annalisa, thank you very much for the call. Good luck.
And I wanted to point out that you also argue in the book, this kind of behavior from the FDA, the AIDS community would not have put up with this.
Mr. HURLEY: You know, there's a lot of discussion behind the scenes among people that care passionately about diabetes. And whether we've reached the point where there should be marches out in front of the FDA offices demanding faster approval of an artificial pancreas, I don't know. I do know that it was only just over a year ago that the FDA, after years of studies showing that many drugs for type 2, it actually increased the risk for heart disease in diabetics. Finally, last year, they decided that any new drug has to show evidence that it doesn't increase your cardiac heart disease risk for diabetes and that was long overdue. There are still many drugs on the market that doctors are prescribing that can have an effect on the heart, a risk of people with diabetes. And I urge folks to look into it, whether they read my book or do some Googling, or read some other books. There's so many drugs out there that people really need to inform themselves.
CONAN: Dan Hurley's book is " Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It." You're listening to TALK OF THE NATION from NPR News.
And here's an email we have from Ellen(ph) in Boca Raton in Florida. My now 22-year-old son was diagnosed with type 1 diabetes 21 years ago. Type 1 is a relentless potentially devastating, debilitating and deadly disease. There's no rest even in sleep. Parents are up throughout the night checking their children's blood sugars, worrying about the dead-in-bed syndrome. Even when a person gets up to go to the bathroom, they need to check blood glucose and sometimes check for ketones to know if their insulin pump is working or if they took enough insulin. We need increased funding for cure-focused research in humans. And she adds, no more - not mice need to be cured.
And this from - what's this person's name - it's from Redmond, Oregon, from Rick(ph). Both daughters have type 1 diabetes, one at 10, the other at 20. They're now 30 and 32. I am concerned that the industry of supporting type 1 and type 2 is so large that there are efforts to discourage a cure. There was a lot of promise. Now I hear nothing about stem cell research replacing islet cell. I don't want to outlive them.
Mr. HURLEY: There - you know, I'm not going to be so cynical as to say that drug companies don't want to cure diabetes. They're human beings. They have loved ones as well. But what I will say is they want to make money. They need to make money, and that's their job. But it's the job of people with diabetes to demand harder work and the kinds of research that will get us to a cure.
You know, the biological cure - whether through stem cells or some sort of treatment that could reverse the disease, this is a really tough case. That is going to take quite a while unless something comes like a bolt out of the blue.
Mr. HURLEY: That's why I think this biomedical device, the artificial pancreas, can be huge. And it's something doable. You basically have off-the-shelf devices that are available. It's not...
CONAN: And companies ought to be able to make a pretty good profit on it too. It's...
Mr. HURLEY: It's not pretty. It's a kind of winning-ugly approach.
CONAN: Kludge, yeah.
(Soundbite of laughter)
CONAN: Let's see if we can get one more caller in before we have to let you go. This is Nick(ph). Nick calling us from Green Bay.
NICK (Caller): Hi. I'm from the ER, and the (unintelligible) I was diabetic. And they're like, what are you gonna do about it? I said, there's nothing I can do. I don't have health insurance. So, luckily, my wife - she's pregnant, and she got a prescription for metformin, so I'm just taking that on my own. But I checked and I tried to get help and there's no one out there to help me, so I just take my metformin every day. And luckily, she's got prescriptions for it but if it wasn't for that, I'd be in deep trouble.
CONAN: Dan Hurley?
Mr. HURLEY: The health care system of this country, obviously, or Congress has - I don't know if they've let us down or if you're going to be able to get the kind of help you need. I can tell you that I spend a - just crazy amount of money on my diabetes care and my health insurance. It's just obscene. And I don't think that the care should - needs to be this expensive. Metformin, by the way, as far as I know - again, I'm not a doctor - that's a good first drug for diabetes. And if you were able to test your blood sugar every once in a blue moon and see if it's staying close to normal, that'd be great.
CONAN: Good luck, Nick. And Dan Hurley, we have to - you've really hit a nerve here. We've had hundreds of emails pour in during this segment. Thank you very much for being with us.
Mr. HURLEY: Thank you for giving a chance to this important topic.
CONAN: Dan Hurley's book, "Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About it." Coming up, it's a week for geeks. The Consumer Electronics Show starts on Thursday. Everybody is buzzing about tablets. Plus Google has a Smartphone. They debuted it today. We'll get a review from Farhad Manjoo coming up next. Stay with us. It's the TALK OF THE NATION from NPR News.