Health Alert: Disease Clusters Spotlight the Need to Protect People from Toxic Chemicals
When I was a Clinical Fellow at Harvard in the mid-1990’s, I learned of a major investigation into a childhood leukemia cluster in nearby Woburn, Massachusetts. Twelve children in that small community developed leukemia over a period of ten years – an extraordinarily high rate of this rare disease. Ultimately this cluster provided a key clue linking the widespread industrial solvent, trichloroethylene (TCE) with cancer – something that has since been confirmed in multiple studies. This cluster became famous because it was the focus of the book and movie "A Civil Action".
Ever since that time, I have been interested in investigations of disease clusters - both because they are horribly painful problems for local communities, and because they may provide clues to the causes of some diseases such as cancer, birth defects, neurological diseases and others. When a community is struck by abnormally high rates of an illness, people naturally ask questions. They want to know what's causing their families, friends, and neighbors to get sick. Unfortunately, often clusters don't get fully investigated; or when they do, often the investigations come up with clues, but no clear cause. Although it is difficult to conclusively prove what caused any specific disease cluster, we can gather invaluable clues and hints from these tragic events.
- Birth defects in Kettleman City, California, including twenty babies born over less than two years with birth defects, and four children born with birth defects so severe that they have since died, in this town of only 1,500 people.
- Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease) – a very rare disease - in Herculaneum, Missouri, a town affected by a major lead smelter and decades of pollution.
- Multiple sclerosis (MS) in Wellington, Ohio, where residents are three-times more likely to develop MS than in the rest of the country, a disease whose causes are unknown but are thought to involve a combination of genetic and environmental causes.
- Birth defects in Dickson, Tennessee, a striking cluster that was identified by a non-profit organization called Birth Defect Research for Children, created by the mother of a child with birth defects, which gathers information about birth defects nationally, links families, and works with scientists to identify patterns that require investigation.
- Male breast cancer, childhood cancer, and birth defects in Camp Lejeune, North Carolina. More than 60 men who lived on that base have been diagnosed with male breast cancer – an extraordinary and alarming finding which is almost impossible to occur by chance alone, and one which deserves urgent attention.
And these examples are just the tip of the iceberg. In the states we haven't studied yet, we have already heard of dozens more disease clusters, so the problem is widespread. Tomorrow, the Senate Committee on Environment and Public Works will hold a hearing on disease clusters. I'll be testifying, along with Erin Brockovich, and Trevor Schaefer, a young man who survived brain cancer and is working to get answers for his community in Idaho and for other communities around the country. Learn more about Trevor's brave fight here.
The good news is that Senators Boxer (D-CA) and Crapo (R-ID) have introduced legislation, S-76 (which many people are calling "Trevor's Law") that will bring much-needed help to communities. The legislation would improve coordination between federal and state agencies, include the EPA in cluster investigations, require creation of clear guidelines for these investigations, and create community advisory panels.
Learning lessons from the disease clusters in communities around the country allows for the possibility of some good emerging from something that is otherwise very bad. I’m sure that every parent of a child with cancer or a birth defect would do whatever they can to help – not only their own child – but also help prevent other parents and children from having to go through such an ordeal by identifying causes and preventing future disease.
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