About Us
The National Disease Clusters Alliance (NDCA) was formed out of the urgent need to identify and respond to emerging disease cluster/anomalies. NDCA is made up of a unique cross-section of representatives ranging from agency, non-profit organizations, community activists, scientists and academia. Currently, there are no government agencies that either track or respond sufficiently to disease clusters in communities
What is a disease cluster and what’s the problem?
Community concerns regarding environmentally related disease clusters*, such as clusters of cancers, childhood leukemia, ALS, MS, lupus, autism, and other rare diseases, continue to be major public health issues. When disease clusters occur or are suspected by members of a community, community members usually lack the resources, knowledge, skills or funding to identify and resolve the disease clusters. Governmental responses to disease clusters in locations as diverse as Fallon, Nevada, Sierra Vista, Arizona and Sacramento, California have been perceived by impacted communities as insufficient,
which often leaves communities frustrated by a perceived lack of responsiveness by governmental entities. Finally, government agencies and communities alike often feel as though they did not achieve the desired results. In the end often experienced in cluster communities are that these horrific health crisis remain unresolved and incomplete with illness and disease continuing on.
* Current cluster definition: A cancer or disease cluster is a greater-than-expected number of cancer cases that occurs within a group of people in a geographic area over a defined period of time.
Need for Action
Trust for America’s Health (TFAH) “Do States make the grade? and Johns Hopkins paper published 2007 in the American Journal of Public Health Adequacy of State Capacity to Address Noncommunicable Disease (NCC) “Clusters” in the Era of Environmental Public Health Tracking. Both reports highlight major insufficiencies with regard to disease cluster response. In the Hopkins study they surveyed 50 state departments of health and their conclusions
- Clusters are of key concern to communities, yet, state-level capacity to address clusters was inconsistent and disjointed.
- Across states, there was no consistent identifiable individual or agency division responsible for addressing disease cluster reports.
- States were hampered by dedicated lack of personnel to address suspected or reported disease clusters, resources, and prescribed protocols, as well as inadequate interagency communication.
- Of the 50 states polled only 15 states have protocols for reporting suspected non-communicable disease clusters to the state health agency, 16 states have protocols for responding to suspected disease clusters and 8 states have protocols for communicating with the public regarding suspected disease clusters.
These reports highlight the fact that there is no consistency from state to state. Further, of the states that do have protocols of responding to disease clusters in communities all use some version of 1990 Centers for Disease Control (CDC) Guidelines for Investigating Clusters of Health Events, which is outdated and insufficient.
