November 2006

Colleen Mondor

nonfiction

Cheating Destiny: Living with Diabetes, America's Largest Epidemic

Although diabetes is an acknowledged American epidemic (nearly 21 million adults and children in the U.S. suffer from some form of the disease), publishers have been more interested in releasing diet books promising questionable preventive formulas then anything concrete about what diabetes is like. Fortunately Houghton Mifflin has decided to offer something different from an author who is uniquely qualified to write on the disease. Former New York Times and Wall Street Journal reporter James Hirsch and his brother have both lived with Type I diabetes for decades and his own young son was diagnosed while he worked on his new book. The result of voluminous research and dozens of interviews, Cheating Destiny: Living with Diabetes, America’s Biggest Epidemic is the kind of title that anyone with the disease or who knows someone with the disease should read, and its effectiveness and intensity can not be overstated. In the interest of self disclosure, here is where I acknowledge my own personal interest in a book on diabetes: my son was diagnosed at three-and-half-years-old and we have been riding the roller coaster ride of living with it ever since.

Hirsch opens his book with a dramatic first-person account of the moment he realized his son was ill with the disease and raced to the hospital to get his escalating blood sugars under control. Honestly I thought this prologue was a bit unnecessarily heavy on shock value -- the description of a nurse struggling to draw blood from a five-year old will resonate with any reader who has ever had a child in a doctor’s office and applies very little to the long term struggle with a chronic disease like diabetes. I understand why Hirsch wrote it this way and why his editors probably loved it, but as the same experience could apply to so many childhood illnesses or injuries, it seemed a bit over the top. But it does the job and draws the reader in -- and then Hirsch has them for the gripping narrative that follows.

In chapter after chapter, the author reveals the variety of ways in which diabetes fits into American culture. First and foremost he describes it is a monumentally valuable disease to the many corporations who make money off of it. This is illustrated brilliantly by his recollection of visiting the 2004 Scientific Sessions of the American Diabetes Association convention. He wanders around, dazzled by the many displays and is overwhelmed by a hall “packed with 182 exhibits, some of them adorned with twirling neon signs, gardens or waterfalls, others equipped with interactive computer demonstrations and elaborate stages for product displays and corporate giveaways -- everything from paperweights and visors to an eyeglass case that can be engraved with your name.” It’s all about enticing attendees to try their product, or better yet to shift alliances and buy their product and then recommend it to their patients. Everything is based on promises that “it” can change your life, save your life (or at least your sex life in more than one booth) and certainly stave off the potential ravages of the disease. Diabetes care is a $132 billion a year industry, Hirsch notes, and it takes a lot to get noticed in the midst of all that glamour. The fact that it is a “complex metabolic balancing act of diet, exercise and insulin or other medication” is largely immaterial to the folks at SSADA. There are games and dancing girls and free samples. It’s a day at a combination cheap circus, boat show, and Sam’s Club, step right up to the barkers’ persuasive call out: “Step right up and we will cure what ails you.” Yeah, and late night TV ads promise you can lose 20 pounds without ever getting off the couch, too.

Hirsch navigates the convention to show just how bizarre and unreal it can be for someone trying to get to the truth about any disease, but particularly this very lucrative and complicated one. Diabetes is odd in that it includes two very disparate forms of the same disease, Type 1 and Type 2 (and now doctors are straying into Type 1 ½ territory). Type 1 was commonly referred to as Juvenile Diabetes for a long time as it primarily affects children and young adults and is an auto-immune disease, meaning it has nothing to do with childhood obesity or poor exercise habits. It generally appears for no reason and no known source and causes a body to destroy a critical portion of its own anatomy. The child loses all ability to manufacture his or her own life-saving insulin and thus their blood sugars begin to climb as they simultaneously lose weight from an inability to process food into energy. In what used to be called the “wasting disease,” they almost seem to starve to death, unless insulin is provided in time, and at levels that allow them to slowly return to normal blood sugars. That’s when the whole “complex metabolic balancing act” begins to become part of the child’s life and they learn to balance food with insulin and exercise and keep their blood sugars in a certain “zone.”

People with Type 2 diabetes acquire the disease as adults (although increased obesity among young adults is lowering the age of diagnosis dramatically) and their physical condition directly results in both onset of the disease and its rapid advancement. This split in how the disease manifests in patients (to some Type 1 parents it seems that Type 2 patients “ask for it”) resulted in formation of two very different organizations: the American Diabetes Association and the Juvenile Diabetes Research Foundation. Hirsch provides a generous amount of fascinating background information on both groups and explains the complex political maneuverings that have resulted in one closely aligning with Type 2s, whereas the other is clearly dedicated to Type 1s.

He also shows how new questions about research and cures have forced yet another split, with some doctors aiming towards ways to manage the disease better and prevent it prior to diagnosis while at least one maverick scientist is determined to cure it in children who have long ago become wholly dependent upon daily regimens of insulin. He also explains how diabetes is unique among more conventional diseases, like cancer, where remission is the medical goal and complete cure the aim of all fundraising dollars. In the world of diabetes, to a lot of people where there is no question that insulin must always be present, there is only the hope of finding better ways to administer it or determine appropriate dosages. The word “cure” thus does not really seem mean the same thing in diabetes-world as it does on the cancer ward. This is something that many people are unaware of, and Hirsch goes to great pains to explain while interviewing many of the powerful parties involved, including former Chrysler Chairman Lee Iacocca whose wife died from Type 1, and now spearheads one of the most dynamic research foundations in the country.

Hirsch clearly realizes that some of his readers will not be aware of the intricacies of the disease and so he provides an easy to follow primer on how it works and, in the case of Type 2, might be prevented. But it is perhaps in his retelling of the history of the disease and the breakthrough discoveries in the late 19th century about the connection between the pancreas and diabetes that readers will be drawn in the most. Particularly when Hirsch explains that the only way to lengthen the life of a person prior to the “discovery” of insulin was through starvation that the devastation of its diagnosis is truly felt. And then he tells the story of Elizabeth Evan Hughes, diagnosed in 1919 at the age of twelve and clinging to life in 1922 at less than fifty pounds, who was one of the first patients in the world to be treated with insulin. Hughes’s story is hard to believe and yet it is true, even the part where she passed away in 1981 after receiving more than 43,000 injections in her long and well-lived life.

There are many other amazing personal stories in Cheating Destiny from rebel scientist Denise Faustman to survivor Eva Saxl, who with her husband’s help managed to stay alive (along with others suffering from the disease) in World War II Shanghai. (They synthesized their own insulin from animal organs, which sounds like something from a science fiction movie, but merely brings home all that much clearer how hard it must be for modern day sufferers of the disease in places like Gaza, Baghdad and Kabul.) Hirsch looks into the famous work of Elliott Joslin and also reflects upon the surprising disparity between treatments his son receives when moving from one hospital to another. There is an entire section in the book on how hard understanding diabetes can be for the newly diagnosed and how often general practitioners can fail in their treatment. It is also incredibly expensive, even for those with insurance, and cost of testing supplies and appropriate food clearly plays a major part in how well some patients are able to manage the disease. Hirsch also points out how few endocrinologists there are in the country for the awesome number of people with diabetes; all too often patients just don’t have a choice and so they trust a doctor, any doctor, to tell them what is best. Most doctors just don’t know enough to say the right thing, which results in patients feeling both angry and frustrated and many doctors blaming the patients themselves for their ongoing poor condition.

Ultimately, Cheating Destiny should be considered an outstanding source of both historical relevance and present research and will certainly give readers a far deeper understanding of the disease than any book on the market today. I would caution readers though, just a bit, to understand that the developing treatment regimen Hirsch describes for his son is only one regimen for one boy, and will in all likelihood be quite different from what other parents and children might be following. That is the nature of diabetes, though -- what works for some patients will not, at all, work for others. Clearly James Hirsch, his brother and his son are navigating their own journeys through the labyrinth as are all the rest of us who live with the disease. We are lucky that he has taken the time to learn so much about diabetes, though, and share it in such a well-written way. I wish we didn’t need Hirsch’s work -- selfishly, I wish I could have passed this book by without a second glance -- but I can’t, and neither can so many others. This is the world in which we live, and now, after reading Cheating Destiny, it’s a little bit easier to understand.

Cheating Destiny: Living with Diabetes, America's Largest Epidemic by James S. Hirsch
Houghton Mifflin 
ISBN 0618514619
320 pages