In type 1 diabetes, once called juvenile diabetes for its tendency to strike children, a person’s immune system attacks the insulin-producing cells of the pancreas; when the pancreas stops producing insulin, which regulates blood glucose, the body stops converting the carbohydrates in food into energy. Theories about the disease’s environmental trigger abound, some more credible than others. They include diet (type 1 is less common in children who were breastfed); hygiene (unnaturally clean suburban kids, Purell-ed by their nervous parents every five minutes, may have fewer early-life infections, and hence underdeveloped immune systems); viruses (some scientists think intestinal tract or Coxsackie viruses are possibly to blame); climate (type 1 develops more often in the winter and is more common in colder climates); psychosocial issues (stress may be a catalyst); or some unseen toxin sprinkled on manicured lawns. Immunizations, vitamin D insufficiency, heavy metals—all are under investigation. None has emerged as the definitive culprit.
For all the investigations of potential environmental components, type 1 diabetes is not viewed as an infectious disease, and accordingly the Centers for Disease Control doesn’t keep a database of those diagnosed; instead, it classifies type 1 as an autoimmune disease. (Type 2 diabetes, associated with poor diet and irregular exercise, accounts for up to 95 percent of diabetes diagnoses. It is not autoimmune in nature, but rather is linked to genetic and environmental factors.)
The fact that no one is formally tracking the disease makes queries into the existence of type 1 diabetes clusters nearly impossible to answer. In fact, until recently the mere idea of a type 1 diabetes cluster was ridiculed in some circles. Dr. Giuseppina Imperatore, the head of the CDC’s epidemiology team within the agency’s diabetes division, barely suppresses a chuckle when asked about the purported cluster in Weston and Wellesley. While there have been a handful of investigations into "so-called clusters" over the years, none of them, she assures, turned up conclusive evidence of a pattern. Dr. Lori Laffel, an investigator in genetics and epidemiology at the Joslin Diabetes Center in Boston, inquired about clusters herself after Kreft told her about the data she had compiled. Laffel called the researchers at Search, a CDC-funded study of kids with type 1 and type 2 diabetes in six locations across the country. "The simple answer was that they have not been able to identify clusters in their data," she says.
Since the advent of lab-produced insulin in 1922 turned the disease from a fatal diagnosis into a chronic illness, diabetes funding has looked mostly to manage patients’ condition. (Even with insulin, diabetes patients die younger and face the constant threat of devastating complications: kidney failure, blindness, nerve damage, amputation, heart attack.) Caring for type 1 diabetes patients is a $17 billion industry, and researchers are therefore inclined to focus on those complications, rather than on the root causes of the disease. "It’s safe research," says Dr. Denise Faustman, director of Mass General’s immunobiology laboratory. "It’s a revenue stream."
Faustman, a petite blonde with a big laugh who was once dubbed "the Madonna of modern medicine" by the magazine Current Science, is not interested in that kind of research. She’s interested in curing diabetes outright. She feels it’s obvious why previous attempts to do that failed, and that these failures illustrate a further point about the politics of diabetes research. They didn’t (or didn’t want to) address the autoimmunity aspect of the disease, in which the body’s immune system inevitably kills the insulin-producing cells in the pancreas.
And yet in the early 1990s, Faustman conducted experiments on mice that used a generic drug to target the killer cells within the immune system. The drug reversed the cells’ devastating effects, and the animals’ pancreases healed. Just regenerated on their own. It was revolutionary. It also unleashed an ugly backlash within the scientific community: Here was a potential cure that could eliminate all sorts of research dollars. "If you change a paradigm, you’re not going to get invited to cocktail parties," Faustman says. She received Food and Drug Administration approval to move forward to human trials in 2002, but none of the usual suspects would finance her efforts. The Juvenile Diabetes Research Foundation alone rejected three funding applications from her. The reasons, it says, are confidential, but Faustman thinks she was done in by rival scientists who peer-reviewed her research results, and who knew they could be out of a job if her work went forward. The big pharmaceutical companies also weren’t interested in her research, because her drug was a generic already on the market to treat other conditions. It wouldn’t add to any of their bottom lines.
Faustman finally found a prominent backer in former Chrysler chairman Lee Iacocca. His wife had died of complications from diabetes, and he not only gave her millions from the Iacocca Foundation, but also convinced Chrysler to become an official sponsor of Faustman’s human trials in 2005 and 2006. He’s since been joined by other patrons: A legion of biking and baking and auctioning mothers much like Ann Marie Kreft have gathered millions of dollars for Faustman’s research. "I call them the Mad Moms," Faustman says with a cackle. It’s been a hard and weird slog, a molecular biologist raising her own funds. The results of her trials should be known in three to four years.
Yet notwithstanding her iconoclastic tendencies, Faustman, too, isn’t much for cluster research. She thinks investigating clusters could mean, in the end, investigating nothing more than race and class. Seventy-seven percent of the children under age 10 diagnosed with type 1 diabetes are white. Ritzy (and largely white) enclaves such as Weston and Concord, then, may not be ground zero for an emerging epidemic so much as they are areas disproportionately populated with hyperattentive parents who think the problems afflicting their children are as unique and special as the children themselves, and therefore warrant exhaustive study. "A family came in today and said six kids on the same street got diabetes six years ago in a three-month period," Faustman says. "Every parent comes in here and says the same thing."