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Gina Solomon’s Blog

Health Alert: Disease Clusters Spotlight the Need to Protect People from Toxic Chemicals

Gina Solomon

Posted March 28, 2011

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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.

Today, NRDC and the National Disease Cluster Alliance released an issue paper documenting 42 disease clusters in 13 states. We documented confirmed clusters of:

  • 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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Nancy HildenMar 28 2011 04:06 PM

That's my Senator Boxer. It's amazing she's the one often supporting these kinds of issues. Thanks Barbara

Renee DowningMar 28 2011 08:24 PM

Here's another cluster. the two scientists in the article, Witten and Shepherd, are still working on it.

Robert HoggardMar 29 2011 06:09 AM

This makes me wonder about my hometown of Joshua, Texas. In the apartments where we lived one family had two autistic children, my own two have mental retardation and neutropenia. Another neighbor's child was born at the same time as my daughter and has Asperger's, and the person living below me had a baby with severe physical and mental handicaps.

ava daniel wilsonMar 29 2011 10:36 AM

I am from Collinwood Tn, a short distance from Dickson Tn in the study. I truly wish someone would do a study in my small home town. My youngest sister has battled breast cancer this past year, and today is to undergo test to see if it has moved to her brain. So many people in this small town have died with cancer related illness. The doctors in Birmingham Al, where most go for treatment have said the cancer rate from this small town is way past the " normal " and that a study needs to be done. My question, how does anyone go about getting this done?

Kathy C.Mar 29 2011 01:48 PM

I know how Ava feels. Our small town, of barely 3 miles long, has had more cancer victims in the past 8 years, it's obvious something needs to be studied. We've already lost 2 children this year, and it's only March! Off the top of my head I've counted 14 people in our small town who've suffered with cancer in the past 8 years... & those are just the young people I know of, not even people from other schools & Churches in our town. There have been far too many children, and teachers, and moms. This should frighten EVERY parent! There must be SOME explanation, something to be done. How many kids have to DIE before they finally become more important than town 'problems' about cleaning streets or fixing sidewalks?

DL MMar 29 2011 02:35 PM

Given the last 70+ years enduring the Military/Industrial Complex rule in this country, is there really any doubt we're receiving the benefits from our "seeds" ?
How many States do not have or never did have a military base or presence ? I can't think of any; can someone name one or two ?
When the people vote to allow their military and corporate supporters of their military unrestricted, unregulated, unwatched (no oversight), operations through-out their country...I don't know what happens but, these clusters might be part of the picture ?

Simon WMar 29 2011 02:42 PM

Good luck with your testimony - I have suspected that something is amiss in my neighborhood - 3 women on my block have had breast cancer - a man has it in the stomach - one block over are 2 children with neuroblastoma - and a father with cancer - these are just friends in the immediate area - we have a golf course at the corner of our block - and the lawn chemicals have always scared me. We abut Oakwood Country Club - Cleveland Heights, Ohio 44118

E StewartMar 29 2011 02:57 PM

I work at the major airport in Las Vegas and the amount of cancer victims who work here is scary. Mostly with the custodians. We've had lung, bladder, brain, prostate, liver, and it seems the women get cancers in their reproductive organs and the men too. The wives of men get cancer too. I don't know if its possible to spread cancers on a genetic level like that, but we really don't understand enough about this disease like we should. The amount of cancer victims within a small department and in the period of time is telling a story. Someone please investigate and help soon!!

James Singmaster, Ph.D.Mar 29 2011 03:50 PM

Much bigger non-cluster health problems need much more attention. These include the germs, toxics and drugs escaping from the mishandling of our massive ever-growing organic waste messes. If we would recognize these messes as being an already harvested biofuel supply, then maybe some environmentalists will join my calling for the pyrolysis process to be used on those wastes that will destroy those hazards and generate some inert charcoal instead of having carbon dioxide being reemitted by natural biodegrading in dumps. And pyrolysis can give some fuel and/or energy from the expelled gaseous mix of organic chemicals and water; they used to call methanol, wood alcohol as it was made by pyrolysis of wood.
Such dumps across the country have billions of $ being spent to monitor against escapes of such hazards, Yet EPA a year ago put limits on several drugs showing up in some drinking water. I ask: Will that stop the drugs from getting to the water possibly at levels above the limits? What does EPA do then and do with other hazards getting into foods from mishandled organic wastes? The Salmonella in eggs was indicated to have gotten there via rats living in wastes at farm egg factory and then carrying the germ into the much tastier feed grain for the hens. I have many comments on this blog and others pointing to making the organic waste messes into a resource using pyrolysis that will destroy those hazards.
A second across the board exposure hazard arises from the across the board permitted fumigation of food in warehouses or in shipping vans with methyl bromide. I found with some rice sent to Puerto Rico in a van with a fumigation warning on it that no added niacin could be found in extracts of the rice, but a methylated product called trigonelline that is inactive as a vitamin could be detected. Methyl bromide is known to react with several essential B vitamins and amino acids, but FDA has avoided any consideration of what happens to the methyl group in the fumigation and just calls inorganic bromide the residue of concern. This fumigation should be of great concern as it can include various packaged baby foods such as cereals and teething biscuits having added fortifying vitamins that may get destroyed.
Another mass exposure to toxicants needing attention is the past use of PCBs escaping from lighting fixture ballasts, from older AC units that had capacitors exploding in the units and from caulks used around windows and various building panels. But the most direct route for PCB exposures may be bleeding from PCB containing sealants used on the insides of drinking water storage tanks. Problems with this sealant deteriorating to make a mess were encountered in Oakland, CA in 1993, and a news report indicated that 116 out of 176 such tanks in the water district involved had records of having such a sealant applied on them. Thus this sealant use appears to have been a SOP until PCBs were banned in late 70s, but with no action outlined to check and eliminate PCBs in all the old equipment and uses. In the NYTimes since early Feb. M. Navvarro has written about the mess with PCBs in ballasts of lights at schools in NYC, and this is again not localized but goes across the country involving almost every home and office with fluorescent lights built before1980. I have made comments on the postings by Ms. Navarro pointing to the PCBs in water tanks that in many cases may still have the PCB containing sealants with PCBs leaching into the drinking water.
Bigger toxicant problems from across the country exposures exist but are not very noticeable as compared to clusters of higher level but localized exposures. In the case of our organic waste messes, an already harvested biofuel source, the utilizing of the pyrolysis process to handle them would have major benefits as I have outlined on this blog before and several other blogs. These bigger problems seem not recognized by NRDC and other groups especially the PCB mess in NYC that has gotten a lot of coverage. The looking for localized problems is often easier to get a handle to play up for media coverage, but the real wide spread toxicant problems seem beyond understanding for green and environmental groups. I fear that what will be wiping out our descendants' futures will be the continued ignoring of ever-growing organic waste messes that will be killing off the oceans and spreading diseases and pollutants into our water supplies and onto our crops. Dr. J. Singmaster, Environmental Chemist, Ret. Fremont, CA

PaulMar 29 2011 06:20 PM

Not being familiar with the specifics of the cases cited here, I can't comment one way or the other on the existence of any true clusters. From a biostatician's perspective, however, I think it needs to emphasized that at least some of these clusters were likely to occur randomly and the methods used to identify them are subject to a number of biases that greatly increase the number potential for errors. I think what the NDRC did here is a great start to finding possible problems but more rigorously investigations will need to be done before coming to any possible conclusions.

Larry LaddMar 30 2011 12:39 AM

@SimonW. Things I would be looking for in conjunction with two cases of neuroblastoma would be adult cancers that are CIMP (CpG Island Methylation Profile) and birth defects that involve similar epigenetic hypermethylation of DNA, like Beckwith Weideman syndrome, Prader-Willi, Angelman's disease. Look into evaluating the level of DNA methylation in body fluids.

Gina Solomon, MD, MPHMar 30 2011 01:45 PM

Thanks to everyone for such an interesting discussion. Paul is absolutely right that disease clusters can appear simply because of random chance, and it's really tough sometimes to figure out if a cluster is due to chance or is real. The clusters that we identified in our report have for the most part been determined to be unlikely to be due to chance, according to state or federal agencies (a few of the clusters are still under investigation).

The important thing about clusters is that they raise serious concerns in communities and as such, they deserve some attention and investigation. Also, some of these clusters may hold clues to the causes of disease and they might help prevent future disease. That's why the legislation (S. 76) introduced by Senators Boxer and Crapo (Trevor's Law) is so needed. We're hoping that Senators from other states will join as co-sponsors of this important legislation.

ME, M.D.Mar 31 2011 03:27 PM

Having been directly involved in two of these investigations in California, I am very disappointed in the reporting by NRDC of these so-called clusters. NRDC has repeated incorrect activist and media language, and not checked the actual facts of these cases. I was a long-time supporter of NRDC until yesterday.

Dana RoseApr 2 2011 12:04 PM

I am having trouble confirming the cluster in Carlsbad, CA. Most of what I read comes from a year ago when a grief stricken father was pushing pins in a map when he heard about cancer cases. It would be nice to see where the NRDC got it's info from because I have family that live in the cluster zone. I couldn't find a single study or update.

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