The late anthropologist Margaret Mead once wrote: “Never depend upon institutions and governments to solve any problem. All social movements are founded by, guided by, motivated and seen through by the passion of individuals.”
The same could be said for modern-day cancer cluster studies.
On the heels of a 2007 Johns Hopkins study that shows that most state public health agencies lack the tools or expertise to conduct disease cluster studies, it is often the parents of children stricken with cancer who spearhead exhaustive efforts to expose and understand these clusters.
Such is the case with the confirmed brain cancer cluster in the Acreage in Palm Beach County, Fla. and the same could be said for our beautiful Eastern Shore of Mobile Bay. Like the folks in the Acreage, we live in a visual paradise striken with too many rare illnesses. And like our friends in the Acreage, we don’t yet know the environmental source of our disease clusters.
But one thing is for sure: We know it is worth the search.
My name is Lesley Pacey. I am a part-time journalist and full-time mother of three young children. After my middle daughter Sarah was striken with leukemia in 2004 at age 4, I also became an activist.
Today, I am founder/director of Eastern Shore Community Health Partners, Inc., a nonprofit agency aimed at assessing the scope of rare cancers and neurological diseases on the Eastern Shore of Mobile Bay and their possible environmental causes.
Our organization is among a growing number of grassroots groups throughout the United States who have launched their own disease cluster studies – and their own websites – in an effort to raise awareness of and track rare diseases that have become commonplace in their communities.
It is our hope and prayer that our new website will further our nonprofit agency’s difficult mission. The website offers information about our organization, our research partnerships, rare disease maps, Alabama public health study statistics and related news articles. It also encourages victims to join our rare disease database and donate financially to our efforts.
We realize that a presence on the worldwide web is crucial to our mission. And we hope the information on its pages will engage people to get involved while encouraging residents with rare diseases to join our confidential studies.
ESCHP was formed in June 2008 in response to a preponderance of rare cancers and neurological diseases on the Eastern Shore. Our group is comprised of a board of directors that includes a wildlife contaminant specialist, a radiation oncologist, a neurologist, a retired pediatrician, a community organizer, a hospital administrator, and many others whose love and concern for their community spurred their involvement.
However, my personal mission to find answers began six years ago when Sarah was diagnosed with leukemia. Now in remission and off treatment since 2006, my energetic, loving Sarah – and the local children with cancer – remain my inspiration for pushing for answers that haven’t come easy.
Since Sarah’s diagnosis, I suspected something was wrong. Too many of our friends and neighbors also had rare diseases. So I began a word-of-mouth database and maps of rare cancers and neurological diseases on the Eastern Shore dating back to 1995.
I successfully campaigned for the Alabama Department of Public Health (ADPH) and University of Arizona researchers to study our problem. Those Arizona scientists, Drs. Mark Witten and Paul Sheppard, journeyed to our area in June 2008 to collect tree core samples in search of environmental contaminants. We were the eighth suspected disease cluster community in the U.S. to attract these environmental cowboys who had previously found elevated tungsten levels in trees in the Fallon, Nevada leukemia cluster.
But less than a year into their own rare cancer study, the ADPH in November 2008 ended their work here, only after finally admitting that Sarah had indeed been part of a cancer cluster in the Fairhope area. They confirmed that childhood leukemias and lymphomas, as well as bladder, kidney and ovarian cancer in adults were elevated in Baldwin County from 2000 through 2004. However, they said those elevations no longer appeared statistically significant.
“We recognize that any time you have a cancer cluster, it’s logical that folks get worried about it, especially when it involves young children,” Assistant State Health Director Charles Woernle told the Mobile Register. “Now, thank goodness, we have determined that the initial cluster has dissipated and we haven’t had a recurrence.”
We were still worried – and local cases of rare cancers in adults and children continued to pop up on our radar.
And we hadn’t forgotten the state’s own statistics posted on the ADPH website long before Dr. Woernle’s admission. The site, which today only reveals cancer mortality rates, formerly displayed cancer incidence rates for each county in Alabama.
Back in 2005, that site showed a startling rise in new leukemia, lymphoma and brain cancer cases in Baldwin County from 2001 to 2002. New leukemia cases jumped from seven in 2001 to 17 in 2002. Non-Hodgkin’s lymphoma rose from 13 new cases in 2001 to 31 new cases in 2002. Baldwin County saw eight new cases of brain and other nervous system cancers in 2001, compared to 13 new cases in 2002.
Then there was the issue of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, which in 2008 claimed the life of my beloved grandmother-in-law Dot Pacey of Point Clear.
Here on the Eastern Shore, ALS rates are at least five times higher than the national average, according to our database. Families of ALS victims have been pleading with ADPH to study why the Mobile Bay area is a hotspot for ALS long before I started my own database. However, state officials refused to study the neurological disease or provide environmental testing; claiming in 2008 that mortality rates for ALS in Baldwin County were in line with state and national averages.
State public health officials in 2008 also admitted something else: that they were ill-equipped to finish the rare cancer studies they had started upon our request. Case closed.
So our organization is forging ahead with our mission. We believe it is as worthwhile as it is daunting. And we believe, now more than ever, that by working together we can find the answers we seek. We are anxiously awaiting the results of our University of Arizona tree core studies, which are expected to be ready any day now. In the meantime, we hope the website is a powerful tool that will help build our rare disease database while helping us appeal to university researchers for good, honest environmental sampling.
On that, I leave you with another thought from Ms. Mead, “Never doubt that a small group of thoughtful, committed, citizens can change the world, Indeed, it is the only thing that ever has.”
Thank you for your interest. And to those who say our mission is impossible, I say, “Have Faith.” This effort has been a walk of faith from its onset in which I do my best and give God the rest. And as Scripture tells us, “With God, all things are possible.”
Please visit our website at www.easternshorecommunityhealthpartners.org.