Of oil spills and future studies

It's been several months since my last blog, and it's been a quite a summer.

For a mother already concerned about area pollution and its impact on local children, the oil spill was a nightmare.

I know just enough to be frightened as I have been covering the oil spill for a new progressive local magazine, called Sense. In that capacity, I've learned from experts like marine toxicologist Riki Ott, who wrote two books about the Exxon Valdez oil spill, more than I want to about the toxicity of oil and Corexit chemical dispersants - and their lasting impacts on human health.

We all smelled the oil fumes in the air and witnessed oil-laden water wash up on our shores, wondering all the while how the largest environmental disaster of our age would affect us in the years to come. Still, with the oil looming just offshore this summer, and benzene, toluene and xylene levels registering in our local air, my children continued to swim in Mobile Bay and play outdoors. I tried to reduce their exposure, but it was summer after all - and the bay has been a way of life - and recreation - for my family for generations.

It will be years before we have answers - and it's not comforting to know the entire Gulf Coast has become unwilling participants in a science experiment that no doubt will result in future ill health consequences. We will have to just wait and see.

As for our nonprofit, we are forging ahead, holding our next meeting September 30 at Thomas Hospital in Fairhope, where we will discuss the results of the tree core research conducted by the University of Arizona.

Two Arizona researchers found three trees of interest in our area, including one at Fairhope Municipal Park, one at Bayfront Park in Daphne and another at Volanta Park in Fairhope. Those trees all showed elevated levels of heavy metals that require further sampling of nearby trees before it can be determined whether those toxin spikes are based on environmental causes.

If our board decides to bring the researchers back, those scientists would look for replication of those results in two or more trees near the trees of interest, then look for an environmental explanation or source of those heavy metal increases.

Dr. Paul Sheppard with University of Arizona said the Eastern Shore, Alabama results were similar to results of studies in other disease cluster communities they visited in other U.S. cities. Each of those studies showed a few trees of interest scattered throughout those communities, and scientists were able to zero in on sources of pollution and environmental contaminants through repeated sampling in those flagged areas.

During our upcoming meeting, our group will also hear from a professor from a nearby university whose environmental toxicology program is interested in partnering with us to perform groundwater testing and/or environmental mapping. We have reason to believe that groundwater/drinking water testing is warranted. That is all I can say for now until that partnership is solidified.

Either way, we are going to need to start raising money and finding grants and other sources of funding to subsidize future environmental research. There is important work to be done.

Meanwhile, I continue to hear stories that break my heart, continually renewing my conviction that our local environment must be studied.

Recently, a Gulf Shores boy, Jensen Byrd, who was diagnosed in 2007 with neuroblastoma, lost his battle with cancer. He was 5.

And recently, I learned about a 4-year-old Barnwell boy with leukemia and I met a Summerdale woman named Mary whose husband was diagnosed with childhood leukemia (which is very rare in a 60-year-old plus man) in 2004 - the same year my Sarah was diagnosed with leukemia at age 4. Soon afterward, Mary was diagnosed with another rare form of blood cancer, multiple myeloma, and she is surviving despite the odds. We met to discuss an American Cancer Society study that will soon commence to study people without cancer over the long-term, looking for habits and environmental components that may cause cancer to develop.

Mary is excited about getting people to sign up for the Baldwin County portion of this national study and people who are interested should contact the American Cancer Society for more information. Despite the fact that Mary is undergoing treatment for cancer, she is passionate about making a difference through her participation in Relay for Life and the ACS study. Admitting the low cure rate for her disease, she quipped, "I should be gone by now, but I'm just too mean to die."

I understand her enthusiasm - and her fighting spirit. It is only because cancer came to intimately reside in my family's life, threatening to take from us our precious daughter, that we continue to pursue the environmental causes of the cancer that almost claimed her.

Sandra Steingraber, scientist, cancer survivor and author of Living Downstream, describes cancer as a serial killer that must be stopped. She believes the way to ferret out this killer is to relentlessly investigate our environment. I agree.

The oil spill will give us other concerns to address down the road. But for now, looking at the tree core studies we've started and starting a study on our drinking water is a good place to start.

For more information, please visit our Eastern Shore Community Health Partners website which aims to research chronic disease clusters on the Eastern Shore of Mobile Bay including rare cancers and neurological diseases in our area. We can be found at www.easternshorecommunityhealthpartners.org.

Welcome to our Website!

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.