Eastern Shore Community Health Partners (ESCHP) was formed in June 2008 in response to a preponderance of rare cancers and neurological diseases on the Eastern Shore of Mobile Bay in Alabama.
The Eastern Shore – which includes the burgeoning Baldwin County communities of Spanish Fort, Daphne, Montrose, Fairhope, Marlow, Fish River, Barnwell and Point Clear – in recent years has experienced high rates of rare cancers, including brain and neurological cancers, leukemias and lymphomas, as well as Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease.
The mission of our nonprofit agency is to protect the health and welfare of Eastern Shore residents by increasing knowledge and awareness of health issues including rare cancers, birth defects and neurological diseases. We aim to assess the scope of these diseases, and seek research into causation and prevention, with an emphasis on how the environment impacts health.
Our organization has worked with public health officials to that end. But to ensureour best chance of success in our quest for answers, we are convinced we must appeal to scientists and researchers from universities to conduct environmental studies.
Formed with the help of Fairhope City Councilwoman Debbie Quinn, ESCHP is comprised of a knowledgeable board of directors that includes scientists, medical doctors, a hospital administrator, an ALS patient advocate, an oncology nurse who survived brain cancer, and other concerned community members.
Lesley Pacey – whose daughter Sarah was part of a confirmed leukemia cluster in the Fairhope area – is founder and director of the organization. Sarah was diagnosed with acute lymphocytic leukemia at age 4 in 2004, has been off treatment and in remission since 2006.
Since Sarah’s diagnosis, Pacey – a Mobile Register reporter – has maintained a word-of-mouth database and maps of rare cancers and neurological diseases on the Eastern Shore dating from 1995 through today. Pacey’s research has garnered the attention of environmental activists, the Alabama Department of Public Health, as well as university researchers from Alabama, Arizona and Nebraska.In June 2008, two researchers from the University of Arizona took tree core samples from about 50 trees across the Eastern Shore to determine environmental exposures to heavy metal, volatile organic compounds and other chemicals. The Eastern Shore is one of eight suspected disease cluster communities in the United States visited by University of Arizona Department of Pediatrics researcher Dr. Mark Witten and tree core expert Dr. Paul Sheppard.
In November 2009, the Sybil H. Smith Charitable Trust awarded ESCHP a $10,000 grant to fund the tree core analysis, which is ongoing.
ESCHP is a member of the National Disease Clusters Alliance (NDCA), which 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. NDCA maintains that there are no government agencies that either track or respond sufficiently to disease clusters in communities.
This is certainly true at the state level, according to a 2007 study by Michigan Public Health Institute and Johns Hopkins University, which found that state health agencies lack the expertise and resources to identify and study potential clusters of cancer, birth defects and chronic diseases.
In 2008, state public health officials dropped their second rare cancer study in four years in Baldwin County while finally confirming what Pacey and the University of Arizona researchers knew all along – that a childhood cancer cluster occurred in the Fairhope area from 2000 through 2004.
ALS rates on the Eastern Shore also appear to be elevated. Our word-of-mouth database shows that ALS rates on the Eastern Shore are at least five times the national average.
ESCHP remains convinced that the number of rare chronic diseases in our area it is neither normal nor acceptable. We also are confident that we can improve public health by appealing to scientists to conduct long overdue environmental testing in our community.
We do not know from where our environmental issues stem. But we do know that our neighboring Mobile County in 2000 ranked eighth in the nation for total toxic releases into the air, especially neurotoxins and developmental toxicants that cause birth defects and cancers, according to EPA’s Toxic Release Inventory (TRI). Also, Mobile County in 2001 was ranked the worst county in the nation in the release of air pollutants linked to birth defects, according to TRI.
Our database and maps remain our most powerful tools. With your help, they will remain our best resource for future studies and funding for that research. By joining our rare disease study, we can continue our mission to gauge the true scope of chronic disease on the Eastern Shore of Mobile Bay and its possible environmental causes.
We all deserve answers and the assurance that the air we breathe and the water we drink are safe. Eastern Shore Community Health Partners is working to find those answers for the health of our Eastern Shore neighbors and for future generations.