Proposed law would track cancer, chronic disease clusters nationwide

A neighborhood cluster of newly-diagnosed measles or tuberculosis – or any of a dozen other infectious diseases — unleashes an onslaught of federal expertise and resources.

But not so for clusters of birth defects or chronic diseases like cancer, asthma or autoimmune disorders.

More than 1,000 citizens ask public health agencies to investigate suspected chronic disease clusters across the U.S. each year, but state agencies are usually unable to offer a substantive response to such requests because of funding and staffing limitations – problems first highlighted by epiNewswire in 2006.

Now, proposed legislation introduced by U.S. Senator Barbara Boxer (D-CA) would create a nationwide database of suspected clusters and deploy federal agency resources to investigations into environmental correlates of local disease clusters.

“Health officials are currently working with their hands tied as they don’t have the resources or time to address the concerns,” explains National disease Cluster Alliance (NDCA) Executive Director Terry Nordbrock, MPH. “I keep being contacted by people whose state cancer registry officials have confirmed an unexpectedly high rate of disease, but their only suggestion for intervention is to invite the concerned residents to speak at smoking cessation workshops. This boil will be a real game-changer as we will now be able to directly address the environmental concerns that community members are asking.”

The proposed law would strengthen federal inter-agency coordination of cluster investigations and authorize federal partnerships with states and universities to investigate disease clusters. Federal labs would support biomonitoring and analysis of environmental contaminents, for example.

The legislation was initiated by Susan Rosser, Charlie Smith, and Smith’s son Trevor Schaefer, a childhood brain cancer survivor, and University of Arizona toxicologist Mark Witten. Schaefer and his mother founded the Trevor’s Trek Foundation to push for more research into environmental causes of chronic disease clusters.

“Environmental toxin exposure is insidious in all instances, yet affects our children in greater proportion than adults,” Schaefer says. “This bill will help eradicate predatory disease by bringing together agencies with the relevant expertise needed to investigate these clusters.”

Local business and real estate interests often oppose public discussion of suspected disease clusters, which may implicate corporate pollutors or otherwise harm local economies.

The U.S. Centers for Disease Control investigated two childhood leukemia clusters in the early 2000s: the Fallon, Nevada leukemia cluster and the Sierra Vista, Arizona cluster, without successfully identifying the cause of those clusters. Part of the problem, leukemia epidemiologists like UC San Francisco’s Joseph Wiemels say, is that even pronounced clusters like Fallon – which involved 16 children diagnosed in a town of 8,500 in fewer than five years – involve case numbers so low that meaningful statistical analyses can be a challenge.

But by encouraging nationwide tracking and analyses of such clusters, proponents say, the proposed law could provide larger numbers – and new insights into the elusive causes of gruesome chronic diseases.

“The online database that this bill will create will go a long way toward creating transparency that is currently lacking for communities experiencing disease clusters,” Nordbrock says.

Further reading:

NDCA’s Disease Cluster Hotspot Map