Alabama State Health Department was ‘slow, apathetic’ on Eastern Shore

Op Ed Piece printed 12-21-08 in Mobile Register, Mobile, Alabama
Written by Lesley Farrey Pacey, mother of leukemia survivor Sarah Pacey and
Founder/Director of Eastern Shore Community Health Partners, Inc., a Mobile Bay initiative to research chronic disease clusters

By LESLEY FARREY PACEY

Special to the Press-Register

For nearly four years, I have been gathering the names of the Eastern Shore residents with rare cancers and neurological diseases.

Ever since January 2005, I have pleaded with the Alabama Department of Public Health to take note of that list and investigate what I believed was a childhood cancer cluster involving my daughter and five other children — two of whom died.

Four years and two failed investigations later, the health department is no closer to finding answers.

I have been continually disappointed with the state public health agency’s slow, apathetic and inadequate response to a very real health problem in our community. After flip-flopping for four years on whether our cancernumbers were elevated, the ADPH this month finally admitted in a recent news article in the Press-Register that the Eastern Shore did experience a pediatric cancer cluster from 2000 through 2004.

But here’s the kicker: Now they are telling us not to worry about it.

“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,” Dr. Charles Woernle, assistant state health director, told the Press-Register in a Dec. 13 article. “Now, thank goodness, we have determined that the initial cluster has dissipated and we haven’t had a recurrence.”

I’m still worried. I know about more sick people than anyone should ever know about. And recently I learned about two new cases of childhood leukemia in teenagers who live just a few miles from my Point Clear home.

I found Woernle’s admission of a childhood cancer cluster astonishing. I knew it all along. Scientists from the University of Arizona doing cancer cluster studies here knew it. But it wasn’t so clear at the Alabama Department of Public Health.

Sometimes they admitted elevations. Usually, they flat-out denied it.

But long before Woernle’s admission, the ADPH’s own Web site spoke up.

The site showed a drastic jump in new leukemia, lymphoma and brain cancer cases in Baldwin County from 2001-02. 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 of brain and nervous system cancers in 2002.

Different numbers were revealed in November when the state dropped its second investigation.

Woernle pointed to statistics from the Alabama Cancer Registry, a division of the ADPH, which showed incidences of some cancers rose 18 percent from 2001 through 2005. These statistics, which are based on Baldwin County as a whole, cannot accurately reflect Eastern Shore clusters.

Actually, University of Arizona scientists contend that the Fairhope/Point Clear area experienced double the number of expected childhood leukemia cases from 2000 through 2004.

Today, my lists have grown to include the names of more than 60 children and adults on the Eastern Shore with rare cancers over a dozen years, and 30 people over six years with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease.

The rare neurological disorder crippled and ultimately claimed, among others, my grandmother-in-law, DorothyPacey.

Our data show ALS rates on the Eastern Shore are five times the national average, at best. But the ADPH has washed its hands of the ALS issue as well.

A national registry for ALS is currently in the works. In the meantime, the ADPH has no plans to investigate the preponderance of ALS on the Eastern Shore. Staff members point to mortality rates, which they contend show no elevations in ALS deaths compared to elsewhere.

My personal experience with childhood cancer and other rare diseases began four years ago. Almost immediately after my daughter Sarah’s leukemia diagnosis in 2004, I began to notice how many of my friends and neighbors had been stricken with seemingly “rare” diseases.

My concern grew into activism. I wanted to know how cancer came to strike my little girl and so many others.

When all this began, I innocently trusted public health officials to address my concerns. Upon my urging, the ADPH launched its first-ever public health assessment in 2005.

Using names of rare cancer patients provided by me, the ADPH interviewed seven of 25 people before stopping the study without explanation.

Then, in January of this year, after Fairhope native Anna Calhoun of Nebraska wrote officials with the same request, the ADPH reopened the investigation. Alabama toxicologist Dr. Neil Sass promised to expand the study to include a rash of Eastern Shore ALS cases.

Starting with my database, the ADPH began a “Pilot Cancer Study” in Baldwin County. But after interviewing 56 of 90 contacts, Woernle halted the study, asking the University of Alabama-Birmingham’s School of Public Health for a review.

UAB in November recommended the investigation be dropped, citing statistics as well as the ADPH’s inability to do the job. Woernle said the study ended because of a lack of funding, lack of staff, lack of protocols and because the ADPH was using “unscientific open-ended” questionnaires.

The ADPH also noted that while childhood leukemias and lymphomas, as well as bladder, kidney and ovariancancer in adults, were slightly elevated in Baldwin County from 2000 through 2004, those elevations no longer appeared statistically significant.

Regardless of what the ADPH says about the statistics, I remain convinced that the Eastern Shore is experiencing too many rare cancers and neurological diseases. Many others agree.

With the help of Fairhope City Council President Debbie Quinn, I recently formed Eastern Shore Community Health Partners, a nonprofit organization. Our 12-member board of directors — which includes doctors, scientists, a hospital administrator and others — aims to assess the scope of certain chronic diseases on the Eastern Shore and form partnerships with universities to research possible environmental causes.

Already, we have formed partnerships with the University of Arizona and the University of Nebraska. The results of tree core samples collected in June on the Eastern Shore by the Arizona researchers will be revealed in January. The University of Nebraska will begin its own studies after the first of the year.

By its own admission, the ADPH is ill-prepared and understaffed and doesn’t have the resources to conduct a public health assessment. A recent Johns Hopkins study revealed Alabama isn’t alone. The study showed that state health agencies in general lack the protocols, funding and staff to conduct successful chronic disease investigations.

Also, if we really took disease clusters seriously, we would have to own up to other sins.

We might have to talk about our shoddy environmental record and the fact that in 2000 our Mobile County neighbors ranked eighth in the nation for total toxic releases to the air, especially for neurotoxins and developmental toxicants that cause birth defects and cancers, according to EPA’s Toxics Release Inventory.

Mobile County ranked first in the nation in the release of air pollutants linked to birth defects in 2001, according to the EPA.

In all my life, I have never known so many neighbors with rare cancers and neurological diseases. This is not normal or acceptable, and we should demand more as taxpayers from the agency established to protect our health.

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 — because, unlike the officials at the Alabama Department of Public Health, we have everything to lose.

Lesley Farrey Pacey is founder and director of Eastern Shore Community Health Partners. Readers may write to her at ESCHP, P.O. Box 62, Point Clear 36564 or send e-mail to baldwinclusters@yahoo.com.

A worthy investigation

Sunday, March 30, 2008

A TEAM of researchers’ attention to the possibly unusual cluster of cancers and other neurological diseases on the Eastern Shore adds to the disquieting concern that man-caused environmental pollution may have contributed to the health problems.

But as scientists, the researchers appropriately note that their interest in an anomaly doesn’t equal proof that anything unusual is going on.

What’s suspicious is what may be an extraordinary number of adults and children with multiple sclerosis (which usually only attacks in cooler climates), cancers of the brain, blood, bone and certain organs, and other neurological diseases. Medical researchers suspect that such maladies may be caused by a combination of genetic makeup and environmental factors.

Michael Shambaugh-Miller, a medical geographer at the University of Nebraska, pointedly stated during an interview with the Press-Register that the “numbers are jumping out. You shouldn’t have that number of MS cases in that area.”

The data showing the cluster of the diseases were collected by Lesley Pacey and Anna Calhoun over 12 years. Mrs. Pacey’s daughter contracted leukemia at age 4, and her grandmother suffers from a neurological disease.

Indeed, there have been at least six cases of rare childhood leukemia in Fairhope, Point Clear and Daphne since 2001. Two children have died.?he Alabama Department of Public Health has already announced it will be interviewing people in the area to determine whether the data compiled by the Fairhope mothers hold up.

In addition, researchers from the University of Arizona will be coring trees in Fairhope to see if there are unusually high levels of toxic pollutants. They have already tested some leaves from trees in the town and found higher-than-expected levels of chromium, zinc and mercury.

Commendably, Mrs. Pacey and Fairhope Councilwoman Debbie Quinn are setting up a nonprofit group to fund the research.

It’s worth noting that the Centers for Disease Control in Atlanta stresses that identifying clusters of disease caused by local environmental hazards remains elusive. The federal agency has studied 100 clusters and found none that clearly were danger zones.

Still, it’s understandable that the Eastern Shore families want to know why their children and other relatives have rare diseases. Here’s hoping the studies by the researchers and the health department can give them some answers.