Do not seek and ye shall not find: the story of Florida and cancer clusters ... by gimleteye

There is nothing worse-- nothing-- than the unwanted appearance of cancer in one's family, then learning that others in your neighborhood have similar or the same cancer, and finding no one in government who will take your side in arguing for an investigation whether these cancers are linked to pollution of the environment. Watching anyone, but especially an innocent child, die of cancer is life-changing experience. I had this experience with Nathan Cobb who died of leukemia at seven after years of suffering. It was just bad, bad luck I thought at the time-- now thirty years ago-- but the reasonable after-effects were indelibly stamped: if any man or industry could be found responsible for inflicting this kind of pain on a child, they should be flayed open and left to die on a rock.

There are no provisions in any law for this kind of punishment, of course. I would learn, much later, how federal laws calibrated tolerable levels of toxics in the environment, using "risk-based analyses" for a handful of prevalent chemicals, ignoring the thousands of man-made chemicals or the effect of their combination, and using the health response of fully-developed adults and not children to establish standards for pollution.

A decade ago, at the urging of independent scientists and environmentalists concerned about toxics in Florida's drinking water supplies, I began to learn about the massive state-supported effort to use aquifers to store water of questionable quality. Big campaign contributors from Florida's engineering, well drillers, rock miners, and the Growth Machine had persuaded Gov. Jeb Bush that the state's program to manipulate aquifers to store water, as well as transfer water from "surplus" areas to "thirsty" areas of the state was good policy "based on the best available science."

I was unpersuaded; having spent years learning the significant lengths that government agencies chose to obscure and obfuscate the causes and effects of pollution in the Everglades. A Massachusetts-based journalist, Donald Sutherland, tried everything in his power to elevate the issue of toxics in drinking water, initiating a massive email stream about the pervasive presence of carcinogens in drinking water, like perchlorates and other volatile organic compounds.

It seemed obvious to me, and to others with scientific credentials uncontaminated by industry alliances, that the reliance on federal clean water laws by the state was literally slamming the door on common sense: that Florida porous aquifers could be convection routes for any kind of pollutant, including cancer-causing chemicals, and that the first place to look for cancer clusters would be water supply.

To test this hypothesis, I began to explore how the State of Florida responds to cancer clusters. What I learned was deeply, deeply disturbing. There was, at the time, no pro-active effort to do science, evaluate and monitor water quality and toxics beyond federal standards that were widely perceived to be inadequate and not protective of public health. Local county health agencies had only the most tenuous, febrile connections to the state health agency charged with researching cancer clusters: there was little manpower or money directed to the complex tasks of investigation.

Sutherland alerted me to families in Port St. Lucie, Florida-- the political home of Senator Ken Pruitt, a former well driller-- who suspected a cancer cluster in their midst. Here is one letter to the editor of the local newspaper at the time:

"It was Thursday, September 19, 1996 when my mother-in-law called me at work to tell me that something was wrong with my son Jimmy - his left side was drooping, and she thought he might have had a stroke. What I remember about that day was my son's face through the car window. He gave me this great big smile and at that very moment, my motherly intuition told me that my child had a brain tumor.

Within two hours, we were informed that our three and a half year old had a brain tumor, and that he needed to be treated immediately. Before the afternoon was out, Jimmy and I were on a private jet to Shands Hospital in Gainesville, Florida. We would spend the next two months of our lives there.

Jimmy was treated with radiation and anesthesia twice daily, at 8:00am and 2:00pm. At 9:30, after the first treatment, we would go back to our rented apartment. Jimmy would cry for food, but he was not allowed to eat or drink anything before his second round of treatment.

In addition to daily treatments, Jimmy suffered from a horrible staph infection in his hip. He was rushed into surgery and for the next three weeks, we lived at the hospital. Not only that, his veins were burning and collapsing from repeated doses of anesthesia. Our three year old then had to have an Infusa Port inserted into his chest. He was on an unbelievable amount of medication for the staph infection, for thrush, and for so many things, I can't even remember. He had to take steroids four times a day because of the swelling in his brain. Not only did they make him hungry, they caused his weight to double.

During the course of his treatment, we were told that Jimmy was going to die, that the treatment was just to buy us some time. We were told it would be a miracle if he survived. Jimmy was discharged the first week of November, and we returned to Port St. Lucie, but his ordeal was not over. He had to wear a brace on his hand and leg. He had to go to Occupational and Physical Therapy three times a week. We were still praying for a miracle.

By Thanksgiving, my husband and I noticed a decline. We made an appointment at Shands on December 5, 1996. On the way to Gainesville, we took Jimmy to the Magic Kingdom and Sea World for the first and last time. The MRI showed that his tumor was smaller, but we knew that it was growing back. We returned home. At Christmas time, he was barely able to walk. After Christmas, Jimmy lost the ability to walk and talk. We would pull him in his wagon and he would point at things, but his steady decline continued.

On January 17, 1997, following another MRI at Shands, we received the awful news. The tumor had grown back larger than ever. Jimmy had a month to live. Three and a half weeks later, my husband and I were lying on the bed with Jimmy when he took his last breath. Jimmy's long ordeal and short life were over.

I resolved not to let our son die in vain. His life meant something, and so would his passing. With the help of a reporter from the Stuart News, I and some of the other mothers were able to tell our stories. I received calls from other parents in similar situations. I was astounded at the number of children in our hometown who had brain and neural system cancer.

As parents, we formed a foundation called Suffer the Children to find out what is affecting our children. It is the mission of Suffer the Children to conduct environmental testing, work as a clearinghouse for information from the State of Florida to the citizens, and from the citizens to state officials. As a result of our efforts, we were able to get the state to launch a full-scale, epidemiological study. We know of at least 42 children who have been diagnosed with brain and neural system cancer.

I have devoted my life to the Suffer the Children Foundation. Our organization has filed for nonprofit status, and is in the process of helping families of afflicted children financially, emotionally and spiritually.

- Written by Juliann Freitas"

Fast forward thirteen years later: the Palm Beach Post began printing a series of stories on a reported cancer cluster at the Acreage in West Palm Beach. Cancer clusters are notoriously difficult to trace back to a single incidence of pollution. In the case of the Port St. Lucie event, no cause of the area's cancer cluster was identified.

The Palm Beach Post published a follow up story on the weekend: "Causes of cancer clusters are hard to find". Here is one note that jumped out: "Meanwhile, state environmental officials are beginning to sample wells, while county leaders analyze soil at two schools." The fact is that county and state agencies in Florida do scarcely no testing of drinking well water; and certainly, no routine screening for carcinogens beyond the inadequate few chemical standards in federal laws.

The Post notes in what seems to me an extraordinary admission for the mainstream media: "Sometimes they find a cause. Often they don't. Frequently, politics trumps science."

That is the truth: in Florida, in the quest to protect the public and public health, politics does trump science. Leaders of the Florida legislature, like former Senate president Ken Pruitt, and governors like Jeb Bush quickly and rapidly buried any talk, discussion, or investigation about the standards of inquiry or science and resources dedicated to proactively dealing with chemicals and toxics in the environment, or, cancer clusters. The Miami Dade County Commission has never fully accounted for and never fully disclosed the threat to public health from deep underground injection wells; a state authorized program that cumulatively puts billions of gallons of scarcely treated municipal wastewater into "safe" zones deep underground, instead of dealing with the real costs of pollution where pollution is generated.

US Senator Bill Nelson has become involved in the West Palm Beach controversy. His Washington DC office released the following statement recently: "Feds asked to investigate reports of cancer cluster in Florida community

June 25, 2009

WASHINGTON, D.C. - Reports of children turning up with brain tumors in a small part of South Florida spurred U.S. Sen. Bill Nelson today to call for an immediate federal investigation.

Nelson sent a letter this morning to the Obama administration requesting an investigation of reports about a cancer cluster in a small community in Palm Beach County. In his letter to the heads of the Centers for Disease Control (CDC) and the Environmental Protection Agency (EPA), Nelson requested they coordinate with Florida’s health agency to look into any possible causes.

“The residents there are calling for an aggressive investigation,” Nelson wrote. “If one of us was living through the agony of seeing our child suffer from a brain tumor, we’d be doing likewise. That’s why I implore your agencies to investigate.”

Do not ask for whom the bell tolls, it tolls for thee.



Causes of cancer clusters are hard to find

By STACEY SINGER

Palm Beach Post Staff Writer

Saturday, August 01, 2009

It has taken health investigators two years of research to designate Clyde, Ohio, a cancer cluster. Their inquiry started soon after Donna and Dave Hisey's 13-year-old daughter was diagnosed with acute myelogenous leukemia.

While the Hiseys awaited the study results, disaster struck again. Their middle child, Tanner, developed lumps on his neck, and in August, he was diagnosed with a totally different form of leukemia, acute lymphoblastic T-cell leukemia. The cluster confirmation came in May, as Tanner underwent chemotherapy.

Now, says Donna Hisey, she checks her youngest child, Siera, every day for signs of illness. The sense of fear is ever-present. The need to know what caused the cancer is overwhelming. It has taken over their lives.

"Any time anybody gets sick, people freak out. Is it minor?" said Hisey, a line worker at the nearby Whirlpool plant. "We just want to know what caused this so nobody else gets sick."

It is not yet known whether The Acreage is a cancer cluster. The state is studying the possibility.

But as families anxiously await results of the state's study here, they're convinced the cluster exists and are deeply hungry to find out what is behind the illnesses in their community.

Could it have been something that leached into the groundwater from the nearby Pratt & Whitney plant decades ago? Something toxic or radioactive in the soil brought in to raise their houses above the marsh? Some solvent illegally dumped and buried? Or the pesticides used in the nearby orange groves and sugar cane fields?

A look at cancer cluster investigations elsewhere in the United States suggests that definitive answers will be difficult - but not impossible - to come by. In the process of searching though, communities like Clyde, Ohio, and The Acreage are learning truths about themselves and their surroundings that can be deeply unsettling.

According to one Acreage resident's unscientific tally, there have been at least eight cases of a brain tumor called glioblastoma multiforme between 2004 and 2009; five cases of a sometimes benign brain tumor called meningioma since 2003; and 17 other assorted brain and nervous system tumors since 1998 - all within the patch of 50,000 rural homes.

The exact case count is hard to say. State health officials are analyzing data from the national cancer registry over 12 years, data that's compiled whenever there is a cancer diagnosis. They will calculate the rate of the cancers they find in the local population, then compare it to national cancer rates. Results may take several weeks.

Meanwhile, state environmental officials are beginning to sample wells, while county leaders analyze soil at two schools.

"It's in the water. I know it's in the water. I really believe it," said Mack Purifoy, 58, who retired to his dream home in The Acreage four years ago with his wife and nephew. The home he paid $400,000 for has a Jacuzzi, an attractive new façade, and well water. And it's sitting empty. He refuses to live there. The former owner, he was told, died of cancer.

A year after moving in, his nephew developed lymphoma. A few months ago, doctors discovered a growth in his brain. They don't know yet if it's a cyst or a tumor, Purifoy said, only that it's growing. He's losing his sense of balance, and having trouble with his vision.

"I drank that water," he says, his voice tinged with anger.

Purifoy is dubious that investigators will ever really identify the source of the illnesses.

Once a cancer cluster is identified, under protocols from the U.S. Centers for Disease Control and Prevention, environmental investigators begin considering possible causes: sources of radiation, pesticides, fungicides, solvents, other chemicals.

Sometimes they find a cause. Often they don't. Frequently, politics trumps science.

In Cameron, Mo., last fall Missouri state officials told residents that the 70 brain cancer cases they identified in a four-county area over 12 years did not represent a cancer cluster.

Several months later, a lawsuit alleged that a leather tannery had been dumping highly dangerous chromium 6, the subject of the film Erin Brockovich, into waste sludge that was spread on farm fields in the region since the 1980s, The Kansas City Star reported. Subsequent sampling of farm fields did find low levels of the hazardous chromium 6, a proven carcinogen.

In eastern Pennsylvania, a single type of rare blood cancer, polycythemia vera, was found in dozens of people. A $5.5 million study is under way, and is considering seven waste coal power plants in the area and seven Superfund sites. At a congressional hearing in March, Democratic lawmakers blasted the Agency for Toxic Substances and Disease Registry, a sister agency to the CDC, for its shoddy review of the cancer cluster.

A report by the congressional committee's staff called the agency's handling of such cases a "clear and present danger" to public health.

"Time and time again ATSDR appears to avoid clearly and directly confronting the most obvious toxic culprits that harm the health of local communities throughout the nation," said the report by the Majority Staff of the Subcommittee on Investigations and Oversight of the Committee on Science and Technology. "Instead, they deny, delay, minimize, trivialize or ignore legitimate concerns and health considerations of local communities and well respected scientists and medical professionals."

In Clyde, Ohio, the investigation is being handled by the state, with input from federal officials, said Robert Indian, chief of comprehensive cancer control for the Ohio Department of Health.

They are broadening their research to study birth defects and miscarriages, he said. There have been 20 children with brain tumors in the area. The nature of the cancers, leukemias and brain tumors, suggests ionizing radiation, Indian said, although everything is being considered.

Not far from Clyde, Waste Management, Inc. operates a deep-well-injection site that has been collecting liquid pesticides and other hazardous chemical waste from throughout the nation. Called Vickery Environmental, the firm injects the waste 3,000 feet into a rock formation deep below farm fields, the company says.

Donna Hisey can't help but wonder if that's the source of the cancers. But she's been told the chemicals have not migrated. She wonders if it's true.

Her best advice to people in The Acreage is to stay involved, ask questions, and keep digging.

Purifoy is asking those questions, but he despairs that he will get an answer in his lifetime.

"We're all going to be dead by the time you all figure out what's going on," he told state environmental leaders at an emotionally charged community meeting on Thursday. "They are going to sweep it under the rug, and a lot of people are going to die, and that's just the way it is."

Hisey said she wants to trust the people who are investigating the Clyde, Ohio, cluster. She needs to be able to trust them. She prays about it often. Ultimately, she said, it's in God's hands.

"I don't know if they are ever going to find out what caused it or not. I would love for them to tell us an answer," Hisey said. "But if they put their best effort into it and they can't find it, then we will have to accept it. But at least we will know they tried."

Staff Writer Mitra Malek contributed to this story.


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http://www.palmbeachpost.com/localnews/content/local_news/epaper/2009/08/01/clusterusa0802.html