Yes, they should…

Coverage by the Boston Globe of an ALS (Lou Gehrig’s disease) cluster in Southeastern MA. Not regular news coverage, but this is an OP-Ed, about Public Health (!):

Disease cluster mystery

FOR MORE than 20 years, health officials have known about a puzzling concentration of the neurodegenerative illness known as Lou Gehrig’s disease in the southeastern Massachusetts town of Middleborough. In the coming months, a study financed by the federal government and conducted by state environmental health scientists might answer the riddle of whether toxic waste from two Superfund sites in the town has caused the rare and usually fatal disease, which normally strikes just two of 100,000 people.

It would have been nice had the author seen fit to disclose the rate in the Middleborough area, and talk a bit about the odds of that cluster being a random occurrence. Let’s give the public some numbers, not everyone is innumerate.

But here’s where this OP ed really falls down, IMHO:

The state is also working to create a registry to keep track of the disease. In collaboration with the Centers for Disease Control and Prevention’s National Environmental Health Tracking Program, such registries can build up the databases that researchers need to track diseases with suspected environmental causes. Democratic Senator Hillary Clinton of New York and Republican Orrin Hatch of Utah have called for a $100 million increase in the CDC program’s budget to help the tracking program establish itself nationwide. Congress should approve the funding.

The National Environmental Health Tracking Program is much more then ALS, and unless you read between the lines a little bit, you’d think that the program was all about ALS, when ALS is just one small part of that program:

The Tracking Program can use data gathered from the Tracking Network to identify areas and populations most likely to be affected by environmental contamination and to provide important information on the health and environmental status of communities. Analyses of data from the Tracking Network will provide valuable information on changes or trends in levels of pollutants, population exposure, and occurrence of noninfectious health effects and enable environmental public health practitioners and researchers to examine the possible relations among them. The information can be used to drive public health policy and actions that ultimately will reduce the burden of adverse health effects on the American public.

Programs that integrate the data collection and data processing capabilities of modern computers with other information, such as locations of superfund sites, are full of promise, and could lead to insights about disease processes.

Another similar program that hasn’t been fully developed, as I have noted, could also be a key protection against both the emergence of new diseases as well as provide a measure of protection against bio-terrorism. I also found it interesting that the NSA spying program, of doubtful value and controversial, got completely funded, while syndromic surveillance systems (vital and fairly non-controversial) have not been funded completely, and have languished under mismanagement, with very little attention being paid to them. (With some notable exceptions, mainly by Katherine Eban, doing a really excellent job.) The Op-Ed continues:

Researchers have studied other ALS clusters. Three men who played football for the San Francisco 49ers in 1964 were diagnosed with Lou Gehrig’s. A possible cause was a fertilizer with high levels of the heavy metal cadmium that was used on the team’s practice field. Residents of the western Pacific island of Guam have also had abnormally high rates of the disease. A possible trigger there was an edible bean, the cycad.

It would have been nice to include information about the cluster of ALS among frisbee players, too. That information is out there and available, too. And the Op-Ed concludes:

The CDC program for tracking environmental links to diseases was spurred by a 2001 Pew Environmental Health Commission report calling for such an effort. The program offers the prospect of integrating, under uniform data standards, the toxic monitoring and health surveillance efforts of a myriad of state agencies. Especially in the case of low-incidence diseases like Lou Gehrig’s, such a nationwide tracking system could be of great benefit to scientists in identifying concentrations and pointing to causes. Congress should give the project the support it needs.

All in all, I give this OP-Ed a C+, because it raises a current health policy issue and gives an example of how it could be tied to a public health outcomes, but I downgrade it for not giving complete data, and not more fully explaining what the National Environmental Health Tracking Program is.

Yes, they should…

2 thoughts on “Yes, they should…

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