A Diabetes Outbreak in Boston’s Suburbs
Thwarted by the prevailing scientific attitudes, Kreft has found she needs a different course of action to get the public’s attention. Here a local, and famous, precedent exists. The better analogy for Kreft, ultimately, may not be to Erin Brockovich but to a Woburn housewife named Anne Anderson.
Nearly 30 years ago, Anderson found similar patterns with cancer in her Pine Street neighborhood, as famously chronicled in the bestselling book and movie A Civil Action. After her three-year-old son, Jimmy, was diagnosed with childhood leukemia, she noticed there were an unusual number of children—12 in all—getting sick and dying in her part of town. Anne Anderson suspected the water in the nearby municipal wells was the culprit, and her persistence led her to a woman named Suzanne Condon, an environmental epidemiologist and now director of environmental health at the Massachusetts Department of Public Health. It was Condon who determined that leukemia rates were indeed abnormally high in east Woburn. She then linked the cluster to contaminant-laden water the mothers drank while pregnant.
As it happens, Ann Marie Kreft knows Suzanne Condon. They worked down the hall from each other at the Department of Public Health when Kreft was a health educator for cancer prevention. A year ago this month, on February 29, Kreft sent Condon a letter: “I am writing to ask for your help with a crisis that our neighborhood is encountering.” She and Condon began corresponding by e-mail. In response to Kreft’s July letter to the Globe, other parents from across the state deluged Kreft’s in-box—a mom from Concord offering a tip about the five cases in her town, the worried professor sharing her report from Hingham, and so on. Kreft passed those messages on to Condon. Condon, wondering whether something might again be amiss in Massachusetts’ towns, told Kreft she would look into the numbers.
One night this past fall, Ann Marie Kreft swings into a Weston driveway and pulls up in front of a sprawling Nantucket-style mansion. It’s the home of Kevin Conley, chairman of the board of the Joslin Diabetes Center and owner of Conley & Company, an executive-recruiting firm that donates 25 percent of its profits to diabetes research. Inside, past the sweeping staircase curling off the grand entrance hall, Kreft accepts a glass of red wine from Conley and soon is chatting with his wife, Rikki. The Conleys have two daughters with type 1 diabetes. The girls are not part of Kreft’s Weston cluster (they were diagnosed years earlier), but the Conleys and Krefts have become dear friends because of the disease—and the Omni brand of insulin pump—their children share.
Tonight, roughly 12 residents of “Omniville,” as Kreft calls her neighborhood, have gathered to discuss their research into diabetes and clusters over a decadent spread of sushi and fruit, brownies, and cheese pastries. The mothers (and they are almost all mothers) have come together twice before, but there is a notable undercurrent of nervous energy to this session.
Shannon Allen arrives 15 minutes late, her husband in tow. The rest of the guests are giddy as they shake hands and make small talk with the couple. Ray Allen, dressed casually in jeans and a white T-shirt, eventually folds himself onto a leather sofa and gracefully commandeers the conversation. He says he was shocked when he read Kreft’s letter in the Globe. He ran into another father on the golf course, whose daughter is in the Weston cluster, and knew he had to come tonight.
Kreft perches on the edge of the couch, gently cupping her goblet of wine, as she explains to the Allens what she’s learned about the neighborhood’s diabetes cases. “One thing that’s interesting to look at with us is that [on a map] five of us are in a straight line,” she says. “And you can’t help but notice we’re hugging the [Charles] river, the golf course, the train tracks—everything right along the highway.”
“I know what my gut tells me,” Shannon says in a fast-paced, raspy voice. “After the diagnosis, all that I could think was that for the whole spring my kids were out in the backyard squirting each other with the hose and drinking out of the faucet. That was the first thing I thought: Oh my God. I am testing our water.”
“But that’s the thing,” Ray says. “It will take us to figure out what’s going on.” He explains that while he was at the White House to meet President Bush after the championship in September, Illinois Congressman Tim Johnson introduced himself, relaying that his father has diabetes. Ray told Johnson about Kreft’s letter, about the seeming cluster in his neighborhood.
Ray looks around, and the other parents lean in, rapt. He says the congressman mentioned he had contacts at the CDC, and said he would get the Allens some answers.
That same day, Dr. Thomas Sinks, deputy director of the Agency for Toxic Substances and Disease Registry at the CDC, called Shannon at home. His office—which is separate from the CDC’s diabetes division—had never looked at the potential existence of type 1 clusters, but he wanted to be of service in any way he could. When Ray Allen later told Sinks about this evening’s meeting, Sinks offered to speak to the group by phone (Allen graciously turned him down); he also said he would put in a call to the state health department. (When contacted for this article, Sinks wouldn’t discuss the specifics of his conversations with the Allens, nor what he’ll be examining based on those conversations, but did confirm that the calls took place.)
Kreft nearly falls off the couch upon hearing Ray’s news. Despite the luck she’s had with Suzanne Condon, she knows firsthand how difficult it can be to get access to the CDC and its resources. “I just think we have the most incredible, unique, wonderful opportunity,” she says, her face flushed. “I mean, wow. I mean, how good is this? This is just amazing.” Shannon agrees. “As horrible as this is, I told Ray, ‘Things have to happen to people who have a voice that can be heard in order for it to matter to everyone else.'”
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.