One purpose of this conference is to provide an opportunity for scientists, public health professionals, and community activists interested in disease clusters to network with each other, learn of other viewpoints and ideas, and develop trust from the process. This networking opportunity is not just the conference itself, but also the conference planning process, which will purposely be longer than usual in order to give planning participants an opportunity to interact on issues with low emotional content before broaching more controversial topics. An explicit goal is to build trust among the various stakeholders of disease cluster response.

The Centers for Disease Control and Prevention (CDC) defines the term disease cluster as “an unusual aggregation, real or perceived, of health events that are grouped together in time and space and that is reported to a public health department. ” It’s estimated that every year there are approximately 1,000 public requests for investigations into suspected cancer clusters. This staggering figure does not even include cluster concerns about diseases and conditions other than cancer, such as autism, birth defects, multiple sclerosis, or Parkinson’s disease.

Chronic diseases place a significant burden on our society. According to the CDC, seven out of ten deaths each year are caused by chronic diseases and almost one out of every two adults has a chronic condition. Cancer is the second leading cause of death in the United States. A 2010 report from the President’s Cancer Panel said that over 40% of Americans will be diagnosed with cancer sometime in their lives and that the incidence of some cancers are increasing, including common cancers among children. It is unknown why they are increasing. Further, the Panel’s report says, “the widely quoted estimates of avoidable cancer deaths due to environmental factors…are woefully out of date. ” While the true impact of environmental exposures on our nation’s health is not known, there is a growing body of evidence showing the link between the two. NDCA is working to address public concerns about elevated rates of disease and possible ties to the environment by calling for the development of science-based methods for “researching, identifying, and responding to disease clusters. ”

In 2006, the CDC issued an update of their cancer cluster activities in the journal Environmental Health Perspectives. The article reiterates CDC’s commitment to responding appropriately to cancer cluster concerns. Data collected from CDC’s tracking of community requests and media reports show how important and relevant this issue is to the public. According to CDC cluster investigation guidelines, the states are primarily responsible for responding to cluster concerns. CDC’s role is to facilitate communication among states, provide greater resources, and assist state and local agencies in their cluster investigations.

Looking to the future, the CDC recognizes the need to develop “new systems, tools, and approaches to cluster investigations. ” However, the 2010 President’s Cancer Panel Report cited insufficient research and limited capacity to adequately measure, assess, and classify exposures as important issues affecting our ability to control environmentally-related cancers. Efforts to improve research on the environment’s impact on our health have been “limited by low priority and inadequate funding .” Unfortunately, in our current economic climate it is doubtful that CDC, or any other federal agency, will have the necessary means to achieve these goals without significant advocacy efforts calling for funding and the allocation of resources to be directed towards investigating disease clusters. Strengthening advocacy efforts will be another important byproduct of this conference.

Another study by Juzych, Resnick, Streeter, et al, 2007, published in the American Journal of Public Health, surveyed state health departments to assess their ability to address disease cluster concerns. Survey data found state capacity to be “disjointed and inconsistent. ” In survey responses, state personnel identified several specific barriers affecting their ability to effectively respond to disease cluster concerns—a lack of resources, inadequate protocols for response, and poor interagency communications. Unfortunately, the inability of health officials to adequately respond to concerns about elevated rates of disease leads to fear and distrust by community members and frustration on the part of the health officials. It also leads to missed opportunities to discover critical links between chronic disease and environmental exposures.

Nadia Juzych and colleagues (2007) identified three main recommendations for improving cluster investigation capacity:

1. Establish a model approach to cluster investigations that would include standardized protocols and guidance for using these protocols, a federal advisory group to assist with challenging investigations, and national policy statements to better inform the public and decision makers about disease and the environment.
2. Strengthen cluster investigation programs through better collaboration, greater technical assistance and training, more staff, and increased budgets.
3. Build the science behind cluster investigations with improved tracking systems, creation of a national cluster investigation database, and better tools and statistical methods for addressing clusters.

Implementing the above recommendations will greatly enhance our public health system’s ability to identify, investigate, and respond to disease clusters. However, it is unlikely that health officials will be able to progress towards these goals unless they are given the necessary funding to make improvements. This conference will leverage support from the diverse groups participating in the conference and will provide a unified voice to plan for a better detection and response to disease clusters. NDCA has a strong background in leveraging the advocacy efforts of community groups. As the President’s Cancer Panel says, “… individuals have the power to affect public policy by letting policymakers know that they strongly support environmental cancer research and measures that will reduce or remove from the environment toxics that are known or suspected carcinogens .”

References

Agency for Toxic Substances & Disease Registry Website. “Disease Clusters: An Overview of Definition of Disease Clusters.” Accessed Thursday, August 5, 2010. Available at http://www.atsdr.cdc.gov/csem/cluster/definition.html.
Thun MJ, Sinks T. Understanding cancer clusters. CA: A Cancer Journal for Clinicians. 2004; 54:273–280
Centers for Disease Control and Prevention. “Chronic Disease and Health Promotion.” Accessed Friday, November 12, 2010 at http://www.cdc.gov/chronicdisease/overview/index.htm
Reuben, Suzanne. President’s Cancer Panel Report, 2008-2009 Annual Report: Reducing Environmental Cancer Risk.” National Cancer Institute, April 2010.
Ibid
NDCA Proposal Boiler Plate. Internal Document.
Kingsley, B., et al. An Update on Cancer Cluster Activities at the Centers for Disease Control and Prevention. Environmental Health Perspectives. 2006. 115(1)
Ibid.
Ibid.
Reuben, Suzanne. President’s Cancer Panel Report, 2008-2009 Annual Report: Reducing Environmental Cancer Risk.” National Cancer Institute, April 2010.
Shalauta Juzych et al. Adequacy of State Capacity to Address Noncommunicable Disease (NCC) Clusters in the Era of Environmental Public Health Tracking. Am J Pub Health. 2007;97:S1:S163-9.
Ibid.
Ibid.
Reuben, Suzanne. President’s Cancer Panel Report, 2008-2009 Annual Report: Reducing Environmental Cancer Risk.” National Cancer Institute, April 2010.

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