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.