PLEASE SUPPORT TREVOR'S LAW

Hi Everyone,

Just wanted to let you know about some proposed legislation that you should care deeply about. It is titled Trevor's Law. It was introduced by Sen. Barbara Boxer in the fall and has not yet been introduced in the House of Representatives. If passed, the bill would vastly improve tracking and response to disease clusters. You can sign a petition backing the legislation at www.trevorstrek.org. I am working with Fairhope Councilwoman Debbie Quinn to campaign for its passage. We recently met with an aide to U.S. Rep. Jo Bonner, R- Ala. and hope to get our Alabama senators to support and maybe cosponsor the bill as well.

The letter I wrote to Bonner explains why I think the bill is important.

April 18, 2011

Dear Honorable U.S. Rep. Jo Bonner,

My name is Lesley Pacey and I am the mother of Sarah Pacey, a leukemia survivor who was part of a childhood cancer cluster on the Eastern Shore of Mobile Bay, Ala.

I am writing to you to plead for your support for Trevor’s Law – Senate Bill S.76, which would vastly improve the government’s ability to detect and respond to disease clusters.

The bill – titled “Strengthening Protection for Children and Communities From Disease Clusters Act – was introduced in the fall of 2010 by Sen. Barbara Boxer, D-California. Currently, the bill _which is being co-sponsored by Sen. Mike Crapo, R-Idaho – also has several Democratic co-sponsors. But we need your support as well. The bill must have more Republican co-sponsors to ensure its success when it is introduced in the House of Representatives.

I hope and pray you will consider supporting for this important legislation.

State public health agencies around the U.S. receive about 1,000 requests every year for cancer cluster investigations, but those agencies are largely ill equipped to handle such investigations, according to a 2007 John’s Hopkins study and the National Disease Cluster Alliance.

Our great state of Alabama is no exception.

My daughter, Sarah, was part of a confirmed childhood cancer cluster on the Eastern Shore of Mobile Bay that occurred between 2000 and 2005. That cluster included six children, two of whom died.

In 2008, four years after Sarah was diagnosed with leukemia, I founded a nonprofit agency aimed at researching the scope and possible environmental causes of a spate of rare cancers – in children and adults - as well as neurological diseases on the Eastern Shore.

A nonprofit seemed the only chance our community had to find answers that we never got from our government health agencies.

Upon my request, the Alabama Department of Public Health began two rare cancer studies. They would be the first cancer cluster studies ever performed by the ADPH.

The first study, performed in 2005, ended abruptly a few months later with no explanation. The other study began in 2007. After admitting elevated levels of certain cancers in Baldwin County, and interviewing more than 50 people with rare cancers on a list of more than 90 people, that study ended for lack of money, lack of staff, lack of protocols, questionnaires that were “too open ended,” and because most cancer elevations in our area by this time appeared within normal ranges, according to state public health officials.

State public health director Charles Wornle in 2008 admitted that a childhood cancer cluster had occurred in our area. The astounding thing was that he also was telling us that his office could not and would not investigate it any further – mostly because of deficiencies within his department.

Environmental testing was never conducted and – with rare cancers still popping up on my radar at an alarming rate - I have tried to pick up where they left off, gathering the names of the chronically ill on my own and campaigning for partnerships with university researchers for environmental testing.

While I have a passion to protect my children and champion for my community, taking on what our government should have has amounted to a tremendous personal sacrifice for me and so many other parents and grandparents like me who are searching for answers when they would rather be spending precious time with their families.

So many communities throughout the U.S. have initiated, funded and organized their own studies because public health agencies simply aren't doing their jobs and protecting our children.

Trevor’s Law provides the best chance we’ve ever had to overhaul our nation’s current practices in disease cluster response. Our public health system needs a new model for detection and response – and this legislation would provide it.

If passed, the law would appoint the Environmental Protection Agency as the central agency for disease cluster tracking and response; provide support to state and local health departments for disease cluster investigations; create response teams with expertise from a variety of fields, including community outreach; advance research to improve methods, guidelines, and tools used in disease cluster response; and increase community involvement in disease cluster response.

I support S.76- Trevor's Law- because it is time that the local, state and federal governments finally acknowledge that when 46 children a day are being diagnosed with cancer, many of them in the same neighborhoods, that toxins in their environment may have played a part in causing the illness, and the innocent children deserve to have their government entities care enough to seek out the causes in as transparent a fashion as possible. S.76 will do this.

Please co-sponsor this legislation and encourage other lawmakers to vote for its passage.

Sincerely,

Lesley Pacey

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.