Diabetes Rising

Twelve miles west of Boston lies its wealthiest, and seemingly healthiest, suburb. Along its winding, wooded roads, one can find a private tennis club, two golf clubs (including the 115−year−old Weston Golf Club and the nationally known Pine Brook Country Club), 13 soc­cer fields, and 19 baseball diamonds— and not a single fast−food restau­rant. Established in 1713, the town has the highest median household income in Massachusetts, as well as the state’s best public school system, according to Boston magazine. Its recreation department offers nearly 500 classes a year in yoga, karate, gymnastics, swimming, fencing, basketball, Pilates — even tap dancing. David Ortiz and Kevin Youkilis of the Boston Red Sox live there. Ray Allen of the Celtics lives just over the town line. The scent of overripe apples fills the air in the autumn, when tourists drive past the town’s old stone walls and buy pumpkins from its roadside stands. Storybook beautiful, Weston is the kind of place where parents dream of raising their children.

No other children in the elementary school that Kelley and Ashley attended had diabetes; the school nurse there had never before treated the disease, and had to learn everything from scratch.

So it took 41−year−old Rikki Conley by surprise when, early on the morning of September 17, 2007, she heard that another child in town might have the same rare, incurable, life−threatening illness that both of her young daughters, Ashley and Kelley, had been battling for years: type 1 diabetes mellitus— formerly known as “childhood onset,” “insu­lin−dependent,” or “juvenile” diabetes.

“That’s ridiculous,” Rikki thought to herself while speaking on the telephone to the mother of Kelley’s best friend.

But here was Gus’s mother, Ann Marie Kreft, calling her at 6:30 on a Monday morning.

“He had to go to the bathroom every fifteen minutes this weekend,” Ann Marie said of her seven−year−old son, citing one of the cardinal symptoms. “Last night I saw him holding a water bottle under the faucet and then guzzling it. He’s even started wetting the bed.”

“I’ll come right over and do a blood−sugar test,” Rikki said calmly, now convinced that Ann Marie’s suspicions weren’t so groundless.

Within minutes of getting off the phone with Rikki, Ann Marie saw Gus wander out of his bedroom in his “bug” jammies, the ones with drawings of bugs all over them. By the time they made it down to the kitchen, Rikki was already pulling up in her minivan. Ann Marie’s husband, Tim, was fixing breakfast for Gus, his older sister, and younger brother.

“She brought Kelley’s check,” Ann Marie answered, using the Conley family’s term for a blood−sugar meter. “She needs to do a check on you.”

Rikki pricked his finger with a spring−triggered device and squeezed it for a drop of blood. She blotted it onto the end of an inch−long plastic strip protruding from the hand−held device that was the size of a cell phone. After what seemed like three years to Ann Marie, Gus’s number flashed on the device’s screen. Normal would be under 120. Gus’s number was 292.

“Is there somewhere you and I can go?” Rikki asked Ann Marie.

Less than two months later, things got weirder. On November 6, another little girl, Natalia Gormley, was also diagnosed with the sup­posedly rare disease on her tenth birthday. She lived just a few blocks from Rikki. A school nurse asked Ann Marie to let her know if any other new cases were diagnosed.

During the two−day span of Gus’s hospitalization at Children’s Hos­pital, the Boston institution affiliated with Joslin, Rikki remembered something: another child in town had been diagnosed with type 1 dia­betes back in April. Six−year−old Grayson Welo was just one year younger than Gus. She attended a private school, so neither Rikki’s nor Ann Marie’s children knew her. But she lived right around the corner from Gus, just a two−minute walk away. How weird is that? Rikki thought.

Less than two months later, things got weirder. On November 6, another little girl, Natalia Gormley, was also diagnosed with the sup­posedly rare disease on her tenth birthday. She lived just a few blocks from Rikki. A school nurse asked Ann Marie to let her know if any other new cases were diagnosed.

They didn’t have long to wait. In the third week of January 2008, Rikki’s daughter Kelley heard from a friend at the stables where she went horseback riding that another kid, 12−year−old Sean Richard, was diagnosed with diabetes on January 16. He lived less than a mile from Ann Marie, in a house that faced her street. That made four cases in nine months.

Having worked years earlier for the Massachusetts Department of Public Health as a health educator, Ann Marie decided to email a few friends who still worked there as epidemiologists to see whether they thought the four new cases exceeded the expected number for a town as small as Weston. Maybe, maybe not, they wrote back. It was right on the edge.

Six weeks later, eight−year−old Finn Sullivan became the fifth case of type 1 diabetes diagnosed in Weston in less than a year. He lived on Ann Marie’s block, just six doors down.

Not easily frightened, but now certain that something serious was going on in her neighborhood, Ann Marie emailed her epidemiologist friends again. This time they told her she needed to request an official investigation from the state health department. None of them was quite certain what a normal rate of diabetes diagnoses should be, but whatever was going on in Weston, it wasn’t normal.

They put her in touch with Suzanne K. Condon, associate com­missioner and director of Environmental Health at the Massachu­setts Department of Public Health. Condon remembered Ann Marie from when she worked there and assured her that she would have her staff look into the matter. In fact, she told Ann Marie, Massachusetts had recently become one of the only states in the country funded by the Centers for Disease Control and Prevention to establish an Environmental Health Tracking System. Although the program was initially examining local rates of childhood asthma, it could just as well track type 1 diabetes in children on a town−by−town level. She promised to begin doing just that. In the meanwhile, according to the best estimates from the CDC, for every 100,000 children in a given area, about 19 new cases should be diagnosed each year. With about 3,200 residents under the age of 18 living in Weston, the CDC statistics would mean that fewer than one child per year should be diagnosed with the disease.

By comparison, during the 18−year span between 1978 and 1996, the nurses could not recall there ever being more than one or two at any time in the 2,300−student public school system. Some years there had been none. Type 1 diabetes, after all, was supposed to be rare. Really rare.

Two months later, on April 28, six−year−old Mya Smith became the sixth case diagnosed in 12 months. Although she lived just over the town line, in neighboring Bryn Mawr, Mya and her family lived within two miles of all the other cases.

Then, on Sunday, June 15, came the jaw−dropper, when 17−month­old Walker Allen was diagnosed. Two nights later, his father, Ray Allen, scored 26 points in game six of the NBA playoffs to give the Celtics their first championship in 22 years.

Not knowing where the Allens lived, Rikki joked sarcastically to a friend, “He probably lives in our neighborhood.” In fact, he did — less than half a mile from Ann Marie. This brought to seven the number of children diagnosed with type 1 diabetes in the past 14 months, all living within the same two−mile radius.

The town’s school nurses had never seen anything like it. Even though some of the kids were too young for school, and some went to a private school or lived over the town line, there were now eight chil­dren with type 1 diabetes attending Weston public schools, including those diagnosed in previous years. By comparison, during the 18−year span between 1978 and 1996, the nurses could not recall there ever being more than one or two at any time in the 2,300−student public school system. Some years there had been none. Type 1 diabetes, after all, was supposed to be rare. Really rare.

On July 7, author James S. Hirsch of Needham, Massachusetts, published an open letter of support to Ray Allen in the Boston Globe, noting that his seven−year−old son, Garrett, also had diabetes (as Hirsch had chronicled in his book Cheating Destiny). Ten days later, Ann Marie and her husband published a letter with Kathy Richard, Sean’s mother, to share their concerns about what they perceived to be a local epidemic in Weston.

“Three out of five families with recently diagnosed children live near enough for Allen and his son, Walker, to stroll to our homes, and a short car ride could take them to an additional two homes,” they wrote. “Something’s not right here. The lack of a national or even statewide diabetes registry complicates monitoring efforts, and we know little about what causes Type 1 diabetes. But we do know that these many diagnoses, in this tight proximity in this short period, are way out of the norm. We would be grateful if a researcher tried to figure out what’s going on.”

Although Ann Marie was already in touch with Dr. Condon at the Massachusetts Department of Public Health, she hoped to hear from academic researchers at one of Boston’s many colleges and universi­ties. She did. But she also began receiving letters and phone calls from parents in nearby towns, who shared their concerns about local rates far exceeding both current national averages and historic experience.

So it was from north to south, east to west: the same alarms were being rung, and the same questions being asked, by parents, school nurses, and people with diabetes. Were these clusters of type 1 just statistical flukes, or were they real?

In Concord — site of the Old North Bridge and Walden Pond, and one−time home to Ralph Waldo Emerson, Louisa May Alcott, Nathaniel Hawthorne, and Henry David Thoreau — five children were diagnosed with type 1 diabetes during the 2007–08 school year.

In nearby Mansfield, a total of 18 kids in the school system had the disease, enough to spark a parents’ meeting with nurses, administra­tors, and representatives of the American Diabetes Association on the evening of October 18, 2008.

In Sudbury, the number of diagnosed children in the school system stood at an astonishing 27.

And in the nearby town of Woburn— where industrial pollutants had been linked to many cases of childhood and adult cancers, result­ing in the infamous lawsuit featured in the book and movie A Civil Action— seven children in a single elementary school of 225 students had type 1 diabetes just a few years earlier.

As her concerns grew along with media attention to her cause, Ann Marie — described in a Boston Magazine article as having “an Erin Brockovich vigor about her” — began searching the online chat groups on www.childrenwithdiabetes.org, a popular site for families affected by the disease. There she found a posting by Analisa Cleland of Littleton, Colorado, a suburb of Denver, who wrote that seven children with type 1 diabetes lived in her neighborhood, “all within walking distance of my house . . . It sure makes me wonder if something is up . . . I must watch too much TV, I’m picturing the CDC coming to investigate the high incidence of type 1.”

From the western suburbs of Phoenix, Arizona, Kelly Lyon responded, “I always picture the CDC coming to our door too! We have a lot of cities outlying here in the Phoenix area that have schools with crazy amounts of Type 1.”

A mother in Colorado wrote, “My daughter is one of 3 girls on her softball team that are Type 1!! That is scary since there are only about 20 girls. Something isn’t right!!”

From Sterling Heights, Michigan, Melissa O’Neill wrote about the junior high school her son, Brendan, attended. “Brendan’s junior high school has 800 kids,” she wrote. “There are now six type 1 diabetics in his school. Another boy was just diagnosed last week and is in one of his classes.”

And from northern Georgia, yet another mother wrote, “I travel 30 minutes to a support group for the west part of our county. I was amazed that [there] were several moms from elementary schools that [have] 7 kids at each school.”

So it was from north to south, east to west: the same alarms were being rung, and the same questions being asked, by parents, school nurses, and people with diabetes. Were these clusters of type 1 just statistical flukes, or were they real? If real, was the increase happen­ing in just a handful of unlucky towns, or in many towns and cities, and in every state? What dark force could be behind the rise of such a dreaded, lifelong, life−shortening disease? And what, if anything, could be done to reverse it?

Two Types, One Disease, Both Rising
This book seeks to answer these and other fundamental questions about the epic rise of diabetes, in both of its two major types, and the monumental efforts already underway to reverse the decades−long trend that has transformed a rare ancient disease into the defining affliction of modern Western civilization.

Most of us know the conventional wisdom about diabetes. It’s pretty simple:

More recently, in the five years between 2001 and 2006, the percent of adolescent girls receiving prescription medications for type 2 nearly tripled —in just five years. Reports of kids dying from diabetes have even made their way into medical journals.

Type 1 is rare and strikes out of the blue, due in part to a genetic risk, set off by perhaps a virus or some other kind of stress. To treat it, you take insulin, test your blood sugars, and carefully watch what you eat. Self−management is the key to good control.

Type 2 is far more widespread, and spreading fast along with America’s waistline. It’s caused by eating too much and exercising too little. To treat it, you eat less and exercise more. If that fails, you take pills and perhaps insulin. As with type 1, self−management is the key to good control.

It turns out that this conventional wisdom is mostly misleading, mistaken, or outdated.

Type 1, it’s true, used to be rare. Today, however, it’s about twice as common among children as it was in the 1980s, about five times more common than in the years following World War II, and perhaps ten times more common than 100 years ago, if early statistics are to be believed. Genes have not changed; lifestyle and environmental risk factors have. Part 2 of this book will explore what those risk factors are. Suffice it to say for now, that while Weston might have unique local factors pushing its recent outbreak, it is also emblematic in many ways of the new normal across the United States, and indeed around the world: how we live and play and work, and why that has made us so curiously susceptible to type 1 diabetes.

Type 2 is also rising, of course, but far faster than the rate of obesity. In fact, the rate of new type 2 cases has doubled in the past decade, according to the U.S. Centers for Disease Control and Preven­tion. Shockingly, the CDC now projects that 33 percent of all boys and 39 percent of all girls born in the year 2000 will develop type 2 in their lifetimes. That’s more than one in three overall. For blacks and Hispan­ics, the projections are even worse, tipping to over half— 53 percent — of all Hispanic women, meaning that more of them will eventually have diabetes than do not.

Already, many people are developing the disease long before middle age. At Children’s Hospital in Cincinnati, the rate of new diagnoses of type 2 in adolescents grew tenfold between 1982 and 1994. More recently, in the five years between 2001 and 2006, the percent of adolescent girls receiving prescription medications for type 2 nearly tripled — in just five years. Reports of kids dying from diabetes have even made their way into medical journals. Dying of type 2 diabetes in childhood? That’s like getting Alzheimer’s disease in high school.

It is worth stepping back to look at the big picture and consider what an aberration the rise of diabetes is in modern medicine. By contrast, cancer death rates in the United States fell by 18.4 percent among men and by 10.5 percent among women between 1991 and 2005, according to the American Cancer Society. Heart disease death rates fell by just over 25 percent between 1999 and 2005, according to the American Heart Association. Deaths due to stroke are likewise way down. Even the percentage of Americans ages 70 and over with demen­tia (ranging from mild memory loss to full−blown Alzheimer’s disease) fell by 29 percent between 1993 and 2002. Diabetes, it would seem, is going the wrong way down a one−way street.

... with all the dozens of pills available for type 2, all the high−tech treatments available for type 1, and the estimated $116 billion per year spent on the medical treatment of diabetes in the United States alone...

But take another step back: diabetes is growing at epidemic pro­portions not only in the United States. Rather, it can be fairly called a global pandemic, afflicting every continent and nearly every country. Indeed, diabetes was called a pandemic in the title of a 2006 book chapter co−authored by Venkat Narayan, MD, who recently stepped down as the CDC’s chief epidemiologist on diabetes, and Pina Impera­tore, MD, PhD, who took over that position. Consider the evidence:

• According to Takashi Kadowaki, MD, PhD, professor of diabe­tes and metabolic diseases at the University of Tokyo, “There has been an explosive increase in the prevalence of diabetes in Japan. In 1955, there were 1 million people with diabetes. Now there are nearly 30 million.”
• The minister of health of Mexico, José Ángel Córdova Villalobos, MD, says of his country, “We could be in bankruptcy soon if we don’t handle the diabetes problem.”
• India, with more people suffering from diabetes than any other country in the world, now has an estimated 40.9 million with type 2 — twice as many as were counted 12 years earlier, but just over half the number expected by 2025.
• In Bangladesh, where over a million human beings died in a 1974 famine, 8.5 percent of adults are now estimated to have type 2 diabetes.
• China has an estimated 40 or 50 million citizens with diabetes, with another million diagnosed each year.
• Even in rural Africa, a 2008 study found, 3.9 percent of people over the age of 15 have diabetes.

In the words of Gojka Roglic, MD, a leading specialist in the spread of diabetes at the World Health Organization, “Diabetes is probably the only disease in the world that has not seen a decline in at least some countries in the past 30 years. This applies even to countries that have a problem with under−nutrition.”

Now take one final step back and ask yourself: 88 years after the discovery of insulin, with all the dozens of pills available for type 2, all the high−tech treatments available for type 1, and the estimated $116 billion per year spent on the medical treatment of diabetes in the United States alone, why the heck do more people get diabetes, and more people die of it, each year?

I ask these questions with more than the usual curiosity of a medical journalist. I was diagnosed with type 1 more than 30 years ago, at the age of 18. My late father had type 2, my mother’s mother had it, and one of my older brothers was recently diagnosed with type 2 as well. So when I read yet another article or book about how we diabetics should just try harder and test our blood sugars more often and try some nifty new diet, I know enough to say that surely there has got to be a better way.

I am happy to report, after spending over a year interviewing hun­dreds of physicians, researchers, and patients in the United States and abroad, and even participating in a clinical trial, that there is a better way. Flying under the radar of most observers, a number of revolution­ary approaches are making quiet, dramatic gains toward preventing, curing, or significantly improving the treatment of diabetes. As we shall see in Part 3 of this book, none of them involves lecturing people about the need to eat less and exercise more. None of them requires diabetics to test their blood sugars more often. And none of them places the blame for the disease and its dire consequences in the laps of diabetics. Instead, an astonishing body of evidence has been built in support of an interlocking group of theories, provocative as they are disturbing, as to why both type 1 and type 2 are rising in lockstep and how we can, for the first time in history, prevent or cure both of them.

Diabetes Rising seeks to trace how we dug ourselves into this hole, and how leading researchers believe we might climb out. Although I will occasionally share my own experiences when they seem pertinent, this will not be another memoir of living with diabetes. Nor will this be a book of advice, tips, heartwarming inspiration, or recipes; there are hundreds of those in the realm of diabetes.

This, instead, is something that has been curiously lacking: a work of impartial investigation rather than inspiration — of description, not prescription; of journalism, not paternalism — about the millennia−long quest to understand and cure what many consider the most mystifying, annoying, fascinating, and maddening disease known to humanity. This is the story of how diabetes rose from obscurity, and how a relatively small number of passionate, smart scientists, advo­cates, and public−policy strategists are struggling against orthodoxy to bring it to its knees.

To appreciate just how bizarrely unnatural the current mush­rooming of the disease has become, it is useful to go back to a time when doctors could go their entire careers without seeing more than a handful of cases, or any at all. Part 1 of this book will narrate the biography of a disease called diabetes: how it started small, and grew into a monster.