Check out the diabetes section of your local bookstore, and chances are most books will fall into three types: memoirs, recipes and tips. Each of these categories is valuable in its own right — if you try to steal my copy of Pumping Insulin, you’ve got another thing coming. But there is a conspicuous dearth of journalistic books about diabetes — let alone books that track its recent rise, consider current theories as to its cause, and look ahead to what treatment options the future might hold.
Thank goodness, then, for Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What To Do About It (Kaplan Books, 2010), a new book by Dan Hurley. Hurley — a science writer who contributes regularly to the New York Times and has had type 1 diabetes for 34 years — describes the book as “a work of impartial investigation . . . about the millennia-long quest to understand and cure what many consider the most mystifying, annoying, fascinating, and maddening disease known to man.” With medical literature this compelling, who needs Dan Brown?
Starting with the mystery of a Boston suburb where, within fourteen months and a two-mile radius, seven children were diagnosed with type 1 diabetes, Hurley divides his book into three parts: The Rising, which chronicles the history of type 1 and type 2 diabetes and their recent explosion, The Reasons, which provides a summary of the most current theories behind what causes diabetes to develop, and The Remedies, which touches on future therapies and potential cures for type 1 and type 2, from closed-loop insulin pumps and islet cell transplants to bariatric surgery. It’s a fascinating, fast read, guaranteed to contain some fact, theory or historical tidbit that even the most expert diabetic doesn’t yet know — like the connection, for example, between long-acting insulin and trout sperm.
Intrigued? Check out Diabetes Rising. And in the meantime, here’s an interview with Hurley, who kindly answered some questions about his book.
What inspired you to write this book?
Except for one article in the New York Times, where I wrote about my experience testing a continuous glucose monitor, I always avoiding writing about my diabetes. I guess I didn’t want to be known as a “professional diabetic.” Even when a book editor asked me to consider writing a book, I feared it would be boring, like one long Wikipedia article. Much of what I thought I knew about both types of diabetes seemed decades old: type 1 is caused by an autoimmune attack, type 2 is caused by obesity, and you treat both with careful diet and tight control. Yadda yadda yadda. Luckily, once I looked into new research into both types of the diseases, I discovered a world of breakthroughs and controversies that have received little attention in the news media.
What gap in the literature on diabetes do you hope it will fill?
There are plenty of self-help books aimed at educating people with diabetes about how to manage their disease. My book steps back to look at the bigger picture, at the historic rise in diabetes and what’s really behind it. It’s fine to tell diabetics that their disease is in their own hands, but for many of us, that turns into a burden, as if it’s all our fault. Nobody blames women for getting breast cancer. Why should we blame diabetics for living in the midst of an epidemic that is on track to affecting one in three people born in the year 2000? It’s time to wake up and realize that we’re all in this together.
Beyond the rise of type 2, however, my book also looks at the shocking fact that type 1 diabetes is also rising fast—and has been rising for over 100 years. It’s now twice as common as it was in the 1980s, about five times as common as after World War II, and 10 to 20 times more common than a hundred years ago. Many studies in the U.S. and abroad have established that type 1 is rising at the rate of about 3% per year. It’s a shocking and unexpected fact, yet neither the American Diabetes Association nor the Juvenile Diabetes Research Foundation has taken much notice of it. My book seeks to get to the bottom of why both types of diabetes are rising, and what can be done to reverse the trend—beyond just yammering at people to control their diet and test their blood-sugar.
How would you describe the difference between type 1 and type 2 diabetes in terms of what we know (or don’t know) about what causes each disease?
Type 2 usually is first diagnosed in middle-aged, overweight people; diet and exercise can usually slow its progression. Type 1 is usually diagnosed in children and young adults, and requires lifelong insulin injections. But as different as they seem, a growing body of research shows that both types of diabetes are closely related. (That explains why actress Halle Berry first claimed she had type 1, and then claimed she had type 2 which she could control with diet.) For instance, children who develop type 1 are often slightly heavier than other children, and they often have signs of insulin resistance long before they are formally diagnosed. On the other hand, type 2 diabetics sometimes have the same markers of autoimmune attack on their pancreas as people with type 1. As a result of these findings, some researchers now believe that weight gain is the missing link between type 1 and type 2, that the increased weight affecting our entire society accelerates the body’s tendency to develop either disease.
What are some of the most common misperceptions people have about diabetes — either type 1 or 2?
Many people with type 2 are under the impression that if they just stop eating sweets, lose a few pounds and exercise more, they can get rid of the disease. While it’s true that such efforts can often get rid of the symptoms for months or years, it’s also true that for most people, the disease will eventually come back. That’s because type 2 diabetes is a relentless, progressive disease. Most doctors don’t say so, because they don’t want to make their patients worry, but almost everybody who gets type 2 will eventually need insulin…and they have triple the risk of getting a heart attack. So it’s an extremely serious disease, and I think all the happy talk about “try harder” is a disservice and an insult. We need to begin asking why all these drugs for type 2 don’t stop the disease’s progression, and what we as a society can do to turn back the rising tide.
What’s surprising about the recent upward trends in the number of new diagnoses of type 1 and type 2 diabetes? Why should we care?
Back during the Civil War, diabetes was so rare that many doctors went their entire careers without seeing a single case. Now it’s everywhere. In fact diabetes is one of the very few diseases that increased during the 20th century, and is on track to continue rising through the 21st century. The health minister of Mexico has said that the huge increase in type 2 there could bankrupt his country’s healthcare system. But this rise is not inevitable. First, however, we have to stop blaming the victims. We need all the resources of science and public health to turn this problem around.
Do you think there is a concern among pharmaceutical companies that developing a cure — or even more effective treatment options — might actually hurt their profits? If so, how does this affect research and product development?
Although I have spent more than 20 years as a medical journalist, I am not yet cynical enough to believe that drug companies would withhold a cure for diabetes. It’s true that they’re in business to make money, so they like drugs that people have to keep taking for years, over and over. But academic researchers are working hard on treatments that would literally cure both type 1 and type 2. In fact, some believe that certain kinds of stomach surgery already work as a true cure for type 2.
What area(s) of research do you think hold the most promise? What are you most hopeful and excited about?
I personally participated in a clinical trial of the artificial pancreas for type 1. We already have insulin pumps, and we already have continuous glucose monitors. All that’s needed is to combine the two with a computer, so it can analyze the minute-to-minute changes in sugar levels to decide automatically how much insulin the pump should release. The Juvenile Diabetes Research Foundation is spending over $10 million a year on research that will soon lead to approval of these devices. In my experience, these are life-changing devices that relieve diabetics from constantly worrying about how much insulin to take. As for type 2, I believe that stomach surgery is a remarkable treatment that can reverse the disease almost overnight. I observed a surgery on a man with type 2 who no longer needed pills or insulin a few weeks later. I urge anyone with type 2 to look into these procedures.
What did you discover that was the most frustrating?
There is so much apathy about type 2, in both doctors and patients. Either they think that a little dieting is all they need, or they take their pills and think everything will turn out fine. Ignorance may be bliss, but it can also be fatal. Another thing I found frustrating and surprising is that nobody is tracking cases of diabetes in our communities. If you get H1N1, your doctor has to report it to the CDC. But if you get diabetes, and if a dozen other people in your neighborhood have it, nobody has to tell the health authorities. It’s time for diabetes to be tracked on a case-by-case level by the CDC.
What isn’t being researched as aggressively as it should be — and why do you think that is?
The artificial pancreas could be available for every person with type 1 in a year or two if more money were available for research and testing. Many promising treatments to prevent type 1 and type 2 are receiving almost no funding. Studies have shown that a lack of vitamin D increases the risk of diabetes…yet no clinical trial is underway to prove exactly how important vitamin D is.
What would you say to a child or adult who’s recently been diagnosed with type 1? (Or type 2, for that matter.)
I don’t mean to toot my own horn, but I truly think that Diabetes Rising offers important, life-saving information that has received very little attention elsewhere. Even though I’ve had type 1 for 34 years and have been a medical reporter for over two decades, almost everything in the book was news to me. I also urge everyone with diabetes to go to an endocrinologist—not just your family physician, but a specialist in diabetes care. There are so many important breakthroughs being made in treatment, it’s essential for you to be cared by someone who knows what he or she is doing.
You write about spending a night wearing a closed loop pump — the much longed-for artificial pancreas — where, for the first time in more than 30 years, someone else was in charge of controlling your blood sugar. Can you describe how that worked (both in terms of the machine itself and the experience of what it was like to participate in the study)? What was it like emotionally?
It brought tears to my eyes. You don’t know how much of a burden tracking your blood-sugar level is until suddenly, magically, you don’t have to do it for a night. It was a dream come true. These devices are not implanted inside you. A little catheter is injected under your skin for connecting an insulin pump, and another little catheter is injected for the continuous glucose monitor. Both are removed every few days. But by connecting the two with a portable computer that analyzes your blood-sugar trends and automatically gives you just the right amount of insulin, you essentially can stop all your worrying and start living like a normal person.
How close are we to getting a closed-loop system on the market? What’s the hold-up?
Like I said, we could have one approved in a year or two if researchers and manufacturers would hurry up. There are no major technical barriers; it’s just a matter of getting the best possible computer program to decide how much insulin you need…doing the studies to prove that it’s safe …and then convincing the FDA to approve it. Aside from money for research, the biggest problem right now is that the FDA is afraid of putting a computer in control of your insulin. They have to wake up and realize that we diabetics cannot possibly be as accurate with round-the-clock control as a well-designed computer.
One of the engineers you interview describes the world of diabetes products as “a frontier, a border between academics, science and industrial applications.” What does he mean — and what are the implications?
For people with diabetes, the disease is a royal pain. But for drug makers, it’s a business. And for academics, it’s an endlessly fascinating series of intellectual puzzles. They need to wake up to the fact that this disease is killing 1.1 million people around the world every year. It’s a mater of life and death. I’m happy to see companies making money. It’s the American way. And as a reporter, I’m always fascinated by the research. But we need to light a fire under these folks, and get them to realize that our life is in their hands.
Did anything you learned in your reporting affect the way you manage your own diabetes? If so, what?
I was surprised to learn how much of a role vitamin D plays in the risk of getting type 1 and type 2—and in the risk of cancer and heart disease. As a result of reading the latest studies and talking to leading researchers, I decided to start taking the maximum safe daily dose, 2,000 IU of vitamin D3, along with 600 mg of calcium. Because vitamin D may prevent type 1 diabetes, parents should be sure their children get a daily supplement, particularly in the winter.
What’s the best way that people — with or without diabetes — can take action to help speed our progress toward a cure?
Get active in your local chapter of American Diabetes Association or the Juvenile Diabetes Research Foundation. Participate in online communities like the ones at “A Sweet Life.” The squeaky wheel gets the grease—so start roaring!