The Elusive Cure
Living With Diabetes, America's Biggest Epidemic
By James S. Hirsch
Houghton Mifflin. 307 pp. $25
Why is there still no cure for diabetes? James S. Hirsch has every right to ask. He's lived with the disease since he was 15; his brother, who was diagnosed at 6, is now a nationally prominent diabetes doctor. And in the course of researching Cheating Destiny, his new book on the subject, Hirsch learned that his young son has diabetes, too. He knows what lies in the boy's future: a lifetime of finger pricks, insulin injections -- and the hovering specter of disability and early death. It is a desperate thing for a father to contemplate, but it gives a powerful emotional drive to this insightful, deeply reported book.
By now, the facts are nearly boilerplate: Diabetes is epidemic in America, affecting about a 10th of the population and rising; its costs in health care and related expenses are measured in the billions of dollars. Minority groups develop diabetes at above-average rates, and now more and more young people are showing up with what used to be called the "adult" form, type 2. (Although Hirsch and his family members have the less common type 1, in which the body has completely lost the ability to make its own insulin, he is just as clued in to the "insidious" type 2, in which the body's production and use of insulin are impaired.) Tens of thousands of diabetics are still undiagnosed; few of those who do know they have the disease get good treatment.
Tough stats, but they don't say much about what it's like to live with diabetes and the roller-coaster of blood-sugar highs and lows, the daily calculations of what and how and when to eat, the constant, exhausting vigilance. Hirsch, a former reporter for the Wall Street Journal and the New York Times, understands all that, down to the most mundane details. I used to be proud of my talent for shooting insulin on the sly in the middle of a busy Starbucks -- until I read about what Hirsch did in Times Square. He was looking for a place where he could inject, and no restaurant would let him use a bathroom without buying a meal. So he ended up taking a peep-show booth, filling his syringe as a stripper gyrated on the other side of the glass.
More harrowing is the chapter about the time Hirsch miscalculated the balance between his insulin and his food intake, sending his blood sugar plummeting. Dazed, he got into his car anyway -- and wound up driving himself and his son off the highway and into a ditch. (Neither of them was seriously injured.) This is a guy who is as well-informed about diabetes as a layperson can be, who is lucky enough to have access to the nation's best doctors -- but even he stumbled. Do the rest of us even have a chance?
Hirsch thinks so: While some health experts say that the kind of behavior modification necessary to fight the disease is "too elusive and too difficult to translate to the masses," he believes that "most diabetics, given the tools and training, are willing to discipline themselves to stay healthy."
And yet diabetes is particularly -- perhaps uniquely -- unsuited to the way medicine is practiced and paid for in America. Ideally, most patients would receive intensive and ongoing education in addition to regular monitoring and testing by a team of health professionals working in concert. Good luck making that happen. Our medical system has evolved to treat sudden or episodic illnesses, not chronic ones. Hirsch describes the perverse incentives and shortsightedness that drive health insurance companies to cover, for example, leg amputation, but not the care and education that would have saved the leg in the first place.
Through nuanced profiles of patients, doctors, researchers and activists, Hirsch persuasively illustrates an epidemic that is at odds with modern society at almost every level. While technology has brought us such remarkable advances as the home blood-glucose meter, with superfast results that allow the fine-tuning of treatment, those high-tech promises come with frustrations, too, such as hypersensitive meters that regularly give faulty numbers.
Meanwhile, not only is public funding pitifully low for both research and treatment, but the way research is financed in this country discourages the kind of out-of-the-box thinking that some experts believe might lead to a cure. Hirsch also raises the disturbing possibility that the $132 billion-plus diabetes industry may have little incentive to find one.
But the blame rests elsewhere, too. Patients and doctors have become too complacent, Hirsch says, accepting halfway measures because eradicating the disease seems like a fantasy. Parents of children with type 1 diabetes have long been active advocates for research, but too many people with type 2 are absent from the fight, ducking their heads in guilt because they believe the illness is their fault: a result of moral weakness and lack of willpower. It's the same emotional bind that inhibits many from managing their condition. Now Hirsch has written the book that people who care about diabetes have been waiting for. If it spurs more of us to work for a cure, so much the better. ·
Sara Sklaroff is a Washington-based writer and editor.