Outbreak

By Gretchen Voss | Boston Magazine |

Suzanne Condon has a quote taped to the wall of her office on Washington Street in Boston: "Public health begins with surveillance. Without surveillance, it’s difficult to learn anything at all." She lives by the words. It was surveillance—gathering the hard data—that allowed her to begin unravelling the mystery of the leukemia cluster in Woburn, to link its children’s cancer to contaminated drinking water.

Before hearing from Kreft, Condon had noticed mentions of possible environmental triggers for autoimmune diseases in various scientific journals, including suggestions that the illnesses could be triggered by chemical solvents. Because type 1 diabetes is in part an autoimmune disease, Condon thought the chemicals could perhaps be its environmental trigger. Kreft’s letter only further piqued her interest. These diagnoses in Weston and Wellesley did seem abnormally close in time and space. The only way to know for sure what was happening was to get some surveillance, some real numbers, to compare them with.

Condon oversees an annual statewide survey of asthma cases in students from kindergarten to eighth grade. In January 2008 she decided to include questions about diabetes on the form. It was the first diabetes survey of its kind in the country. Condon finished the preliminary analysis this summer, and she noticed something rather unusual. According to CDC estimates, about 183 in 100,000 children in that age group could be expected to develop type 1 diabetes, but in Massachusetts the number was significantly higher: 265. There are two possible explanations for the disparity: The CDC’s estimates are off, or, for some nefarious reason, the disease is striking Massachusetts children at an alarmingly increased rate.

To try to determine which explanation is the right one, Condon’s staff is now sorting through the data community by community and school by school. It is a massive labor, made even more daunting by a federal law called the Family Educational Rights and Privacy Act, which was reinterpreted a few years ago to forbid school officials from sharing children’s names or other identifying information with public health researchers. As it stands, Condon knows only the number of children in each Massachusetts public and private school who have been diagnosed with type 1 diabetes, as reported by the school nurse who filled out the extra questions on the asthma exam. She does not know whether any of them live in the same neighborhood or if they were diagnosed within a small window of time—in short, whether there is evidence of a potential disease cluster. Those vital details, Condon says, will have to come from Ann Marie Kreft’s contacting the families in her database and asking them to share their personal information with her.

And marrying that information to Condon’s numbers will only be a small step. To uncover what in the environment might be making these suburban children sick is the truly hard work, the stuff of, yes, blockbuster books and movies. "It may be a dietary thing," Condon ventures. "These are wealthier communities. Do they have a diet that’s more likely to contain something that we may someday find out has something to do with type 1 diabetes? Some expensive cuts of meats and fish have higher levels of PCBs, for instance." It could be the river, much as it was Woburn’s contaminated water. It could have something to do with the railroad tracks, which, Condon notes, may be sprayed with toxic pesticides otherwise banned from residential neighborhoods. It could all just be a bunch of horrible coincidences. The only way to find out is to keep digging.

In early November, the CDC’s Sinks called Condon and asked her to open an official investigation into the type 1 cases in Weston and Wellesley. He was surprised to hear that Condon had already found more diagnoses than Kreft had originally turned up through her amateur epidemiology efforts. According to Condon’s figures, there are now six children in Weston, and 17 in Wellesley, as well as 28 in Newton. There are many more towns still to tally.

Gretchen Voss, former Boston senior writer, is a contributing editor at Marie Claire.

  • 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.