The press has been very interested in this week’s disease cluster report and hearing. Here is a partial list of coverage:

1) Reuters
Erin Brockovich pushes for disease cluster law

Deborah Zabarenko, Anthony Boadle - Mar 29, 2011
WASHINGTON (Reuters) – Erin Brockovich, a US consumer health advocate whose life story was the basis for an Academy Award-winning film, urged senators Tuesday to pass a law to document disease clusters in …

(same story also ran on CNBC.com, MSNBC.com and HuffingtonPost.com)

2) MedPage Today
Report, Hearing Focus on Disease Clusters

WASHINGTON — A new report highlights 42 locations throughout the U.S. that have alarmingly higher incidences of certain diseases, including cancer and birth defects.
The report, released by the Natural Resources Defense Council (NRDC) and the National Disease Clusters Alliance, surveyed 13 states in which so-called “disease clusters” had been identified by media reports and by local and state health agencies.

3) Greenwire (subscription required)
TOXICS: Uptick in disease clusters spurs calls for TSCA reform

An increase in the number of geographic areas with a spike in cancer and other diseases shows the need for greater regulation of chemicals and other toxics in the environment, according to a report released today by green and health advocacy groups.

The report on so-called disease clusters found high instances of birth defects, cancer and other illnesses in 44 communities across the 13 states it surveyed. It was sponsored by the Natural Resources Defense Council (NRDC) and the National Disease Clusters Alliance (NDCA).

4) E&E Daily (subscription required)
TOXICS: Erin Brockovich warns of 500-plus potential disease clusters in U.S

An increase in the number of geographic areas with a spike in cancer and other diseases shows the need for greater regulation of chemicals and other toxics in the environment, according to a report released today by green and health advocacy groups.

5) Jackson Daily News
Group Calls for More Research into Camp Lejeune Cancer Cluster

At a hearing before the Senate Environment and Public Works committee Tuesday, a representative of an environmental research group urged the completion of a full investigation into a male breast cancer cluster surrounding Camp Lejeune.
A panel including well-known consumer advocate Erin Brockovich and National Research Defense Council senior scientist Gina Solomon said they had identified 42 suspected cancer clusters in 13 different states

6) KMJ-580 / FM KMJ 105.9
Scientist with the NRDC- Dr. Gina Solomon testified on Capitol Hill regarding “Disease Clusters,” including one in Kettleman City.

7) Midland Daily News
Report includes cancer cluster in local region
The Natural Resources Defense Council and the National Disease Clusters Alliance said they identified 42 disease clusters in 13 states by looking at research by federal, state or local officials and peer-reviewed studies from academics. …

8 ) USAToday
Report: 42 disease clusters in 13 U.S. states identified

At least 42 disease clusters have occurred in 13 U.S. states since 1976, according to a report Monday by environmentalists calling for further study of the cause of these health problems.

“Communities all around the country struggle with unexplained epidemics of cancers, birth defects and neurological diseases,” report co-author Gina Solomon, a senior scientist at the Natural Resources Defense Council, said in announcing the findings. “The faster we can identify such clusters, and the sooner we can figure out the causes, the better we can protect residents living in the affected communities.”

9) Arkansas THV (Gannett TV station)
13 states including Ark. have cancer clusters

(KTHV) — A new report was released today by the Natural Resource Defense Council pointing out 13 states where researchers have found disease clusters, including one in Arkansas.
The report was released as legislation is being drawn, calling for further investigation into the causes possibly pollution.

10) WEWS-TV in Cleveland

Ohio Disease Clusters Listed in New National Report

CLEVELAND – No one wants their home in an area where a higher percentage of adults and children get cancer, leukemia, multiple sclerosis and more. These areas are called disease clusters. There are five in Ohio, including one in Lorain County. Now, a senator and an environmental activist are urging new action to help people who live in disease clusters.

Sen. Sherrod Brown (D-OH) is co-sponsoring a new bill, and Erin Brockovich testified at a senate committee hearing Tuesday. They both want more done about quickly identifying disease clusters, and helping people in those clusters find out what made them sick.

Sen. Brown’s proposed bill would get more federal resources to five Ohio areas identified as disease clusters. He said if it passed, the bill would “provide more federal support to communities that have been afflicted by high rates of diseases like cancer and multiple sclerosis

11) WRAL (Raleigh, NC)
Chatham: Bynum cancer problem resolved years ago
Bynum, NC — Testimony presented Tuesday to the US Senate about a cluster of cancer cases in Bynum reflects a problem that was resolved years ago, Chatham County Health Director Holly Coleman said Wednesday. The Natural Resources Defense Council …

12) NBC17 (North Carolina)
‘Cancer clusters’ described in Chatham County, Camp Lejeune

Some researchers said Bynum has a high number of cancer cases. Studies date back to the mid 1980s and point to drinking water from the Haw River as the problem. Two North Carolina communities were part of testimony Tuesday in the Senate about areas around the country with high levels of cancer among residents. The testimony is aimed at passing legislation to help find links between clusters and a possible cause. Camp Lejeune in Onslow County and Bynum in Chatham County are included because they are “confirmed disease clusters,” according to the Natural Resources Defense Council.

13) Times-Picayune (New Orleans)

Disease cluster researchers find four such groupings in Louisiana

Two environmental advocacy groups are releasing a report today that calls for expanded federal efforts to identify “disease clusters,” along with their causes.
The Agency for Toxic Substances & Disease Registry defines disease clusters as “groupings of a particular disorder, or a class of disorders, that appear unusually frequently in a place.” The agency oversees research into disease clusters for the federal government.

The report, which draws from research by federal, state or local officials along with peer-reviewed academic studies, identifies what it says are 42 disease clusters in 13 states, including four in Louisiana. It was prepared by the Natural Resources Defense Council and National Disease Clusters Alliance.

14) Cleveland Plain Dealer

Senators want better investigations of ‘disease clusters,’ but may disagree on methods

The Natural Resources Defense Council cited five cluster sites in Ohio: Clyde, with a high incidence of childhood cancer; Wellington, with an unusually high rate of MS; Marysville, where eight boys or young men were diagnosed with leukemia between 1992 and 2001; Marion, where a high school on the site of a former Army depot and munitions factory was blamed for leukemia and esophageal cancer, and Middletown, where a number of people were diagnosed with a type of brain cancer since 2004.

15) Toledo Blade

Sen. Brown co-sponsors disease cluster bill

Federal legislation seeks Ohio, Mich. aid

Drawing from U.S. Centers for Disease Control and Prevention data, the National Resources Defense Council and the National Disease Clusters Alliance issued a report outlining known pockets, or “clusters” of cancer and multiple sclerosis in 13 states.

16) Chronicle Telegram (Ohio)

Report identifies Wellington as MS disease cluster area

Wellington has been designated as a disease cluster area for multiple sclerosis, according to a report released yesterday by the National Resources Defense Council.
A 1998 study by state and local health departments found residents of Wellington were three times more likely to develop multiple sclerosis than the rest of the country, the report said. The Agency for Toxic Substances and Disease Registry found that there had been a release of chemical contaminants in the environment surrounding a former foundry, the LESCO facility, and the still operating Forest City Technologies plant.

17) Southern California Public Radio:
Erin Brockovich Testifies on Capitol Hill

A Senate panel looking at a bill on pollution and cancer heard today from environmental law activist Erin Brockovich. Erin Brockovich’s work on a cancer cluster in the California desert town of Hinkley led to a lawsuit, and later a Hollywood movie

18) News&Observer (North Carolina)

Testimony to Congress will cite cancer clusters in N.C.

WASHINGTON — Two North Carolina communities will be among the so-called “cancer clusters” highlighted today in Senate testimony on the environment.
The Natural Resources Defense Council, an advocacy group in Washington, has included suspected cancer clusters in the small Chatham County town of Bynum and at Camp Lejeune in its research on the potential impact of toxic chemicals on human health.

19) ENCToday (Eastern North Carolina’s Newspapers)
Group calls for more research into Camp Lejeune cancer cluster

At a hearing before the Senate Environment and Public Works committee Tuesday, a representative of an environmental research group urged the completion of a full investigation into a male breast cancer cluster surrounding Camp Lejeune.
A panel including well-known consumer advocate Erin Brockovich and National Research Defense Council senior scientist Gina Solomon said they had identified 42 suspected cancer clusters in 13 different states.

20) California Watch

Disease clusters found in some Calif. communities

Environmental groups say disease clusters are on the rise and the government needs to do more about it.

In a report released Monday, the Natural Resources Defense Council and the National Disease Cluster Alliance highlighted 44 communities in 13 states with higher than ordinary numbers of birth defects, cancer and other illnesses.

21) Detroit News

Passage of disease cluster bill urged

2 Mich. areas identified; legislation forces officials to coordinate their data

Washington— The U.S. Senate was urged Tuesday to make it easier for federal researchers and regulators to identify disease clusters in states like Michigan.
Advocates from the Natural Resources Defense Council and other organizations rolled out information on 42 clusters in 13 states, including the Great Lakes State, places where high incidences of cancer and other diseases were linked via decades worth of research to the presence of toxins in water, soil and air

22) Daily Mail (UK)
‘Tip of the iceberg’: 42 clusters of different diseases identified in 13 U.S. states, but researchers say this is just the beginning

A worrying report claims there are 42 disease clusters across 13 states in the U.S. which include numerous types of cancer, birth defects and other chronic illnesses.
The study by the Natural Resources Defense Council and the National Disease Clusters Alliance drew on research by federal, state and local officials and peer reviewed academic studies.

They have warned that this is just the tip of the iceberg and that there are likely more in other states which will be revealed through further study.

23) Physorg.com
Disease clusters showing up all over the United States

(PhysOrg.com) — When most people think of the term ‘disease clusters’, the cancer cluster in Hinkley, California made famous by the movie Erin Brockovich usually comes to mind. However, the Natural Resources Defense Council reported on Monday, March 28, 2011 that there are 42 disease clusters that have been found in 13 U.S. states. These clusters are showing different types of cancers, birth defects, and various chronic illnesses.

24) Courier Journal (Delaware)
Groups ask federal help on disease clusters

A coalition of environmental and health care groups cited Delaware’s recent cancer-cluster investigations Monday among dozens of cases nationwide that they say prove a need for more federal help in solving local disease mysteries.

The Natural Resources Defense Council and the National Disease Clusters Alliance included Delaware among 13 states that they said have clusters of cancers, birth defects or other illnesses that need more study.

25) Republican & Herald (PA)
Tamaqua Area Cancer Cases to be Part of Senate Hearing on Disease Clusters

Disease clusters that have sickened a large number of people in the area and other states will be the topic of a Senate hearing today in Washington.

The Senate Environment and Public Works Committee will hear testimony on the proposed U.S. Senate Bill 76, the “Disease Cluster Act,” aimed at confirming disease clusters and finding their causes.

Gina Solomon, senior scientist with the National Resources Defense Council, a nonprofit environmental action group, will present a report that has confirmed 42 disease clusters in 13 states across the country since 1976, including two locally.

26) St. Louis Today
Herculaneum smelter is among 42 disease clusters, group says

An environmental group will tell a Senate panel today that it has identified 42 suspected clusters of cancer, birth defects and other illnesses in 13 states.
The Natural Resources Defense Council, working with the National Disease Clusters Alliance, wants to step up the federal response to investigating suspected clusters. The 42 clusters — either confirmed or under active investigation — are in Missouri, Texas, California, Michigan, North Carolina, Pennsylvania, Florida, Ohio, Delaware, Louisiana, Montana, Tennessee and Arkansas

27) Arkansas News (Democrat Gazette)
Senate hearing on cancer clusters Tuesday

WASHINGTON — Congress should consider expanding the federal government’s role in identifying the source of “disease clusters” like the one found in Prairie Grove, Ark., according to the Natural Resources Defense Council.

“Communities all around the country struggle with unexplained epidemics of cancers, birth defects and neurological diseases,” said NRDC senior scientist Gina Solomon. “The faster we can identify such clusters, and the sooner we can figure out the causes, the better we can protect residents living in the affected communities.”

28) Sacremento Bee (McClatchy)
Congress urged to set up system to track cancer cases

WASHINGTON – Activists urged the government Tuesday to let people post and track cancer cases across communities, a public health effort that they say could lead to discoveries of new chemical-related cancer clusters throughout the United States as well as insights into disease management.

29) Fresno Bee
Three Valley sites in disease cluster report

Kettleman City and two other Valley communities are among dozens of places nationally where people have died in mysterious disease clusters, environmentalists say in a report being released today.
Nine California locations are discussed in a report being released today by the Natural Resources Defense Council and the National Disease Clusters Alliance.

30) Cal Coast News
Disease clusters on the rise
Areas with higher numbers of cancers, birth defects and illnesses are increasing nationwide along with demands the government needs to take action, according to a report released Monday by Natural Resources Defense Council and the National Disease Cluster Alliance.

31) Miami Herald (McClatchy Newspapers)
Congress urged to track cancer clusters better

WASHINGTON — Activists urged the government Tuesday to let people post and track cancer cases across communities, a public health effort that they say could lead to discoveries of new chemical-related cancer clusters throughout the United States as well as insights into disease management.

32) Idaho Statesman
Idaho cancer survivor Trevor Schaefer gets his say before Congress

Advocates of a bill that would allow clusters of cases to be tracked say it could help determine some causes

33) Fort Worth Star Telegram
Texas Listed Among 13 States With Disease Clusters
WASHINGTON — An environmental group will tell a Senate panel today that it has identified 42 suspected clusters of cancer, birth defects and other illnesses in 13 states, including Texas.

The Natural Resources Defense Council, working with the National Disease Clusters Alliance, wants to step up the federal response to investigating suspected clusters. The 42 clusters — either confirmed or under active investigation — are in Texas, California, Michigan, North Carolina, Pennsylvania, Florida, Ohio, Delaware, Louisiana, Montana, Tennessee, Missouri and Arkansas. The groups plan to look at all 50 states.

34) Kansas City Star (also McClatchy)
Group To Tell Senate Panel About Disease Clusters
The Natural Resources Defense Council, working with the National Disease Clusters Alliance, wants to step up the federal response to investigating suspected clusters. The 42 clusters – either confirmed or under active investigation – are in Texas, …

35) Bradenton Herald ((McClatchy Newspapers)
Tallevast included in study presented to Senate panel

Three Florida cases were highlighted in a report to the Senate panel by the Natural Resources Defense Council. Though Tallevast, the tiny Manatee County community where residents have complained of unusual cancer rates near a former beryllium plant, wasn’t mentioned at the hearing by name, the fact that it is included in the study came as encouraging news to Wanda Washington, vice president of FOCUS, a community advocacy group.

36) The Bakersfield Californian
Cancer clusters in McFarland, Rosamond in report to go before Senate panel

Childhood cancer clusters discovered in the rural Kern County towns of McFarland and Rosamond some 25 years ago are among dozens of disease clusters in several states cited by environmentalists in a report released Monday.

While there’s little new information in the report produced by the Natural Resources Defense Council and the National Disease Clusters Alliance, one of the aims of the effort was to compile wide-ranging data from 42 disease clusters in 13 states into a single document, said Dr. Sarah Janssen, a physician and senior scientist with the NRDC and a co-author of the report.

37) Medical News Today
Erin Brockovich To Testify Regarding Ongoing Disease Clusters

Erin Brockovich continues the fight against disease clusters that tend to “mysteriously” pop up across the country and plague groups of residents with ailments that are complicated and many times unexplainable. At least 42 disease clusters have occurred in 13 U.S. states since 1976, according to a report Monday by environmentalists calling for further study of the cause of these health problems

38) ThirdAge.com
Erin Brockovich Urges U.S. Senators to Pass Disease Cluster Law

According to the National Cancer Institute, a disease cluster is an unusually high occurrence of cases of a particular disease within a group of people, geographic location or period of time. Data compiled by health advocates and environmentalists from the National Disease Clusters Alliance and the Natural Resources Defense Council showed an occurrence of 42 disease clusters in 13 states since 1976.

39) Allgov.com
42 Disease Clusters Identified in 13 States

Proposing a connection between pollution and outbreaks of serious disease in certain regions, environmentalists and health advocates have compiled data showing the existence of more than 40 disease clusters in 13 U.S. states since 1976.
Communities all around the country struggle with unexplained epidemics of cancers, birth defects and neurological diseases,” said report co-author Gina Solomon, senior scientist at the Natural Resources Defense Council, who teamed with others from her organization and the National Disease Clusters Alliance. “The faster we can identify such clusters, and the sooner we can figure out the causes, the better we can protect residents living in the affected communities.”

40) Gather.com
Disease Clusters Discovered in 13 States! 8 States Belong to Diabetes Belt!

Forty-two disease clusters have been discovered in 13 states across the U.S. More shocking than this discovery is the fact that 8 out of those 13 states belong to the newly discovered “Diabetes Belt” of America, which is comprised of 15 states. Is this a mere coincidence or an indication of something far more dire?

41) Fairwarning.org
Researchers Point to 42 Disease Clusters in 13 States

Two environmental groups have identified 42 “disease cluster” communities in 13 states where an unusually large number of residents have suffered cancer, birth defects and other chronic illnesses.

The groups’ report lists clusters that have occurred since 1976, when Congress passed the Toxic Substance Control Act, or TSCA, to regulate the use of toxic chemicals in industrial, commercial and consumer products. “The faster we can identify such clusters, and the sooner we can figure out the causes, the better we can protect residents living in the affected communities,” a study co-author,

The Senate Environment and Public Works Committee held an oversight hearing on disease clusters and environmental health. This hearing assessed the potential environmental health effects related to disease clusters. Erin Brockovich, President of Brockovich Research and Consulting was among the witnesses testifying.
Senator Barbara Boxer (D-CA) chairs the committee.

watch the C-SPAN videorecording of the hearing 89 minutes.

U.S. Senate Environment and Public Works Full Committee Hearing

Watch the video (110 minutes)

Title: “Oversight Hearing on Disease Clusters and Environmental Health”
Date: Tuesday, March 29, 2011
Time: 10:00 AM
Location: Washington, DC, Dirksen Senate Office Building

Witnesses:

Meet Trevor Schaefer

Daniel Rosenberg of NRDC wrote an excellent blog post about Trevor’s testimony.

NDCA teamed with the Natural Resources Defense Council (NRDC) to report on 42 disease clusters in 13 states. We intend to complete this pilot project and cover all 50 states and U.S. territories.

Read the report.

Health Alert: Disease Clusters Spotlight the Need to Protect People from Toxic Chemicals [pdf 1.5MB]

Families want answers on MS, cancer cases

By: Ellen McGregor
Cristin Severance from the Ohio News Network contributed to this report

CLEVELAND – No one wants their home in an area where a higher percentage of adults and children get cancer, leukemia, multiple sclerosis and more. These areas are called disease clusters. There are five in Ohio, including one in Lorain County. Now, a senator and an environmental activist are urging new action to help people who live in disease clusters.

en. Sherrod Brown (D-OH) is co-sponsoring a new bill, and Erin Brockovich testified at a senate committee hearing Tuesday. They both want more done about quickly identifying disease clusters, and helping people in those clusters find out what made them sick.

Sen. Brown’s proposed bill would get more federal resources to five Ohio areas identified as disease clusters. He said if it passed, the bill would “provide more federal support to communities that have been afflicted by high rates of diseases like cancer and multiple sclerosis.”

read full article

Letter to the Editor
Hartford Courant

Elizabeth Brown’s March 21 letter ["Nuclear Disaster Shouldn't Surprise"] makes an excellent point regarding our reactive response to Japan’s nuclear crisis. However, her statement that “we have known for a long time that our plants in the U.S. have the potential of leaking” deserves clarification. Nuclear power plants in the U.S. have been and are already “leaking.”

Routine operations at nuclear power plants require intentional releases of radioactive substances into the environment at levels that must meet Nuclear Regulatory Commission and Environmental Protection Agency requirements for public safety. But how can we be sure the NRC is doing its job?

According to a 2010 Union of Concerned Scientists document, authored by nuclear safety expert David Lochbaum ["Regulatory Roulette: The NRC's Inconsistant Oversight of Radioactive Releases from Nuclear Power Plants"], there have been more than 400 accidental leaks involving millions of gallons of contaminated water into the ground and waterways. Some of those listed include 27 accidental releases occuring in the years of 2006 to 2010, for which there were no NRC sanctions. Although the UCS paper also reports case studies in which the NRC did enforce its regulations, the risk of such regulatory failure carries serious implications for the public’s health.

“Clean, safe, nuclear power”? I think I have a bridge for sale!

Agnes Reynolds, Wethersfield

Specific language to be incorporated into your estate planning document(s) could be as follows:

“I give and bequeath ____% of my residuary estate to the National Disease Clusters Alliance, a California 501c(3) non-profit corporation, to be used by it for its general and campaign purposes.”

OR

“I give and bequeath ____% of my residuary estate to the National Disease Clusters Alliance, a California 501c(3) non-profit corporation, to be used by it for its general and campaign purposes. Specifically, the bequest shall be used to support the _________ Campaign.”

OR

“I give and bequeath $____ to the National Disease Clusters Alliance, a California 501c(3) non-profit corporation, to be used by it for its general and campaign purposes.”

OR

“I give and bequeath to National Disease Clusters Alliance, a California 501c(3) non-profit corporation all of my interest in the following described property ____________________. ”

If the National Disease Clusters Alliance is a designated charity in a will, trust or other estate planning document, please forward a copy of the document, or the relevant pages of the document, to the National Disease Clusters Alliance offices. This will allow the Foundation the opportunity to make sure that your wishes are carried out to the fullest extent.

National Disease Clusters Alliance

12555 High Bluff Drive, Suite 380

San Diego, CA 92130

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.

Edmonton, Alberta

Honestly, we are still in treatment and I have not spent much time thinking about causation. Just survival. I’m sure the time will come when I can concentrate more on the cause not just the cure.

Acute Lymphoblastic Leukemia High Risk. Doing well in interim maintenance.

We spend an inordinate amount of time and money trying to ‘cure’ our children but little to no time and/or money trying to figure out what is causing the disease. Not once in our three year battle did anyone ever ask us questions pertaining to causation. It is my understanding that becasue she died from a side effect of treatment (congestive heart failure) and after three years of treatment at the ‘adult’ age of 18, that her death is not even recognized as a statistic of childhood cancer. becasue of this, tho her life was truly a gift, I can’t help but feel that my daughters battle and eventual death was meaningless.

Wisconsin

I fully support Trevor’s Law because through research of clusters, not only can a cure be closer, but preventive efforts can be achieved so that childhood cancer is diminished. Amina has Down Syndrome, and because children with Down Syndrome have a higher risk for Leukemia, this cluster should be thoroughly examined for causation. I am also suspicious about Radon as being a causal factor in my daughter’s Leukemia Diagnosis because our home had Radon in both the air and water – we have since installed mitigation systems. We are so grateful that she is in remission and we pray she remains so, but it was an extremely difficult 2 years of chemotherapy when she was 4 and 5 years old – a time when she should have been swinging on swings and going to school instead of sitting on hospital beds and feeling miserable from the toxic effects of chemotherapy. Today, we are grateful for each cherished day she goes off to school with a big smile. She is in Kindergarten, is taking gymnastics, tap and ballet, and hip hop class – she is reclaiming her childhood! Thank you for your support.

Levi was diagnosed with ALL on May 27, 2009, at the tender young age of 2 1/2 years old. It was a day that changed our life forever. Levi also has Down Syndrome, and we do not know if his cancer could be connected to a cluster in the area, of if his chances were greater due to his Down Syndrome. What we do know, however, is that childhood cancer is devastating, and anything that can be done to help with tracking, and causes and cures, needs to be done, and done now! Please help to do everything possible.

Thank you, Levi’s Family and Friends

by Nishi Gupta

KTVB.COM

BOISE — Next Tuesday, a young cancer survivor from Idaho will testify at the nation’s capitol in support of a proposed law.

And alongside 21-year-old Trevor Schaefer will be Erin Brockovich, a legal assistant who helped successfully sue a California company that was polluting a community’s water supply.

Her work in the early 1990s was the subject of a movie and propelled her to stardom. Now she works an activist and fights to keep toxins out of the environment.

One of her latest projects will be to support Trevor Schaefer and the legislation named after him, called Trevor’s Law.

Trevor Schaefer and Erin Brockovich — his experience inspired legislation, her experience inspired a box office hit.

Both share a common goal to provide relief to communities that have abnormally high cases of disease.

March 29th, they’ll both testify in front of the Senate Environment and Public Works committee.

read full article and watch 3-minute video online