Outbreak

By Gretchen Voss | Boston Magazine |

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."

  • Ingrid

    My child has had diabetes for many years. For a small town like Medfield, I always though something was wrong, when each year there were more and more kids visiting the school nurses office for lunch time blood testing.

  • Athena

    My child was diagnosed at the age of 6, and I also feel something is wrong considering when we moved to Leicester MA, my son as well as 6 others (if not more now) have been diagnosed at approx. the same age, same schools. Leicester MA should be on the outbreak list as well. I know the other mothers would agree as well. (Majority, does not run in the families, and not mine). Love this article and would love to get in touch with anyone in this article.

  • Lisa

    My daughter is 1 of 10 kids (we know of) that have juvenile diabetes living in Acton. She was diagnosed almost 2 years ago, just after her 5th birthday. I too would like to get in touch with someone in this article.

  • Athena

    The diabetics with type 1 is much more than 6 children, and it's a small town….could the arsenic in our well water be the cause? Our town is loaded with children getting diagnosed around the same age and area.

  • Laura

    This article is very interesting ~ as the mother of the child diagnosised at age 3 on the South Shore ~ I would love to talk to any researcher about this ~ my child's school had had type I's before but my child was the 1st one in the school at the same time and since then 4 others in our district have been diagnosised. Our small town has 4 elementary schools and the numbers are on the rise ~ any help our family can be – bring it on!!!

  • Sue

    Look to the increased vaccination schedule for our children. Read Dr. Classen's work … Look to the Prevnar vaccination. Vaccinations trigger type 1 diabetes in children!

  • Lisa

    I live in Methuen, MA. When my daughter was diagnosed 4 years ago, another boy in her school was diagnosed a day or two before her. When she went back to school she was one of 8 or 9 kids, over the years those older kids have moved on, for a while she was the only one, now she is 1 of I think 7 kids at the same school!!!! This is not a coincidence. Some kids move into the district with the diagnosis, but always in the late winter early spring months you will hear of one or two more children diagnosed with the same thing! Presently, I am going to try and find out in Methuen what is going on!

  • Lisa

    My daughter had that vaccination….it was about a year before she came down with diabetes. The doctors offered this new vaccine that helped to prevent the colds that cause ear infections and I took advantage of it….now I read up on Prenvar and what Dr. Classen says….OMG!!!!! I will call my pediatrician tomorrow to make sure I am certain of what I am talking about and I will post here.

  • Lisa

    It was Prevnar, August 03. Diagnosis of Type 1 Diabetes March, 05!

  • Jill

    My 11 yr old was just diagnosed in May of this year. Two weeks after her best friend! There are many children in our small town Scituate. What is going on?

  • Lisa

    Contact me if you want to talk. I've been where you are….

  • Anonymous

    my daughter diagnosed age 23 coxsackie virus as child. no symptoms, fitness, however, blood test showed she has antibodies and runs high in morning 130. Comes down after eats in a.m. Dr. says because she has antibody she is type 1. Believe because she always exercised and ate healthy is why she wasn't symptomatic and kept under control. We are still very confused at what caused this and still is not symptomatic with thirst, urination, hunger, etc. On insulin only at bedtime, 5 units a1c 6.2 over past year. ? is she really diabetic. Lately eating certain foods increasing blood sugar at times 180 during day. Would like another opinion.

  • Pam

    My daughter was DX at age 6, 21 years ago. She was normal weight until age 4 when something triggered extreme weight gains while consuming less than 1000 calories a day. Then came the DX of Type I diabetes. Children for the past 30 years have been given routine dosages of antiobiotics for ear infections. My daughter took ampicillin almost every 6 weeks for ear infections. At age 6, she was given the pill form of penicillin. She broke out and within a month was in the hospital with diabetes. I will always believe these high dosages of antibiotics are the trigger for weight gain and diabetes in children.

  • Rose

    Question to all of you, as this story ran again the other night on tv, are any of your chldren who were diagnosed conceived by fertility methods? Just brainstorming to get to the bottom of this.

  • Pat

    Our 6th grade here in Marlborough, CT has 4 type 1′s out of 88 total (my son and another on our street diagnosed about 6-7 months apart). Stories of kids in our town getting a bug after swimming in the town lake and getting diabetes a few years later.

    • Steve

      I had 2 of 3 children diagnosed on South Shore both within months of each other. But they are 6 years difference in age. Something is going on and I don’t feel the right questions are being asked to get the answers.