Twelve-year-old Tanner is among nearly 40 children from Ohio’s Sandusky County who have been diagnosed with cancer. The community has fought for answers to explain the series of cancer cases that began a decade ago. Now a bill introduced in the Senate will go a long way toward helping investigate disease clusters. It would direct and fund federal agencies to assist state health officials in investigating potential clusters. However, the U.S. toxics law needs reform, too, to help protect children and communities from environmental chemicals.

By Rebecca Fuoco
Environmental Health News

July 28, 2011

Tanner, a 12-year-old from Clyde, Ohio, had a difficult school year. He was only able to attend a few weeks of school. Summer activities are also limited for Tanner, who cannot swim in public pools because his leukemia has left him with a diminished immune system.

Tanner and his older sister are among nearly 40 children from Sandusky County who have been diagnosed with cancer. The community of 62,000 has fought for answers to explain the series of child cancers that began a decade ago.

While cancer clusters are a nightmare for families and communities, they also are frustrating for state and local health officials. Cancer cluster investigations are notoriously difficult because of small budgets, the variety of factors involved in cancer development and the multitude of possible sources and exposures. They are almost always inconclusive.

Earlier this year, Senators Barbara Boxer (D-CA) and Mike Crapo (R-ID) introduced a bill known as “Trevor’s Law,” named after Trevor Schaefer, a brain cancer survivor who was diagnosed at the age of 13 and has worked to raise awareness of disease clusters and possible links to the environment.

This legislation would direct and fund federal agencies to assist state health officials in investigating potential clusters. It also would create science-based guidelines for cluster identification. The bill was sparked by rising rates of childhood cancer and the President’s Cancer Panel’s 2010 statement that the burden of environmentally-induced cancer is grossly underestimated.

While cancer clusters are a nightmare for families and communities, they also are frustrating for state and local health officials. Cancer cluster investigations are notoriously difficult due to various factors. They are almost always inconclusive.Cancer clusters should indeed be a public policy concern. Forty-two cancer and other disease clusters in 13 states were recently identified by the Natural Resources Defense Council. All of them are suspected of being caused by toxic exposures in the community.

However, Trevor’s Law will yield little benefit unless there also is a significant change in the way chemicals are regulated in the United States.

The Toxic Substances Control Act is the federal law responsible for ensuring safety of industrial chemicals. Among its weaknesses is that it does not require chemical producers to provide data on a chemical’s environmental fate or toxicity before it is introduced into the market. Under the 1976 law, the Environmental Protection Agency may require the manufacturer to provide this information only if a chemical poses certain health or environmental risks. Even then, the procedures EPA must follow to obtain test data from companies can take years.

The EPA does not have the resources to routinely assess the hazards of 700 some chemicals introduced into commerce each year and companies very rarely voluntarily perform such testing. Accordingly, the vast majority of chemicals on the market today have not been tested for toxicity. Without access to scientific information on potential exposure routes, toxic mechanisms and health effects of at least 85,000 chemicals on the market today, it will remain exceedingly difficult for agencies to investigate clusters and their possible environmental causes.

Senator Frank Lautenberg (D-NJ) has introduced the Safe Chemicals Act of 2011, which will begin to close the data gap by requiring chemical manufacturers to develop and make publicly available toxicity and exposure information for all chemicals. It also gives the EPA authority to request additional testing to determine the safety of a chemical.

Not only will this testing aid the analysis of existing cancer clusters, but it might also prevent development of future cancer clusters. Chemicals proving carcinogenic in testing can more likely be restricted from use — and will therefore not end up in landfills, drinking water systems and other possible sources of community exposure in the first place.
2011-0728fuoco

Rebecca Fuoco is a Center for Health Leadership Fellow at the University of California, Berkeley School of Public Health

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Michelle Bliss, WHQR 91.3 FM
(Roderick McClain contributed audio for this report) (2011-07-27)

WILMINGTON, NC (WHQR) -The Agency for Toxic Substances and Disease Registry is mailing out 300,000 surveys between now and December to study the effects of water contamination at Camp Lejeune.

At the same time, an act that would allow Lejeune veterans and family members to receive health care through the VA sits in a U.S. House committee.

Between 1957 and 1987, carcinogens like benzene were leaked into the wells on base. WHQR’s

Michelle Bliss attended a public forum in Wilmington last week where researchers spoke to a group of active Marines and sailors, veterans, civilians, and their families about the study.

“I spent a quarter of a century in the United States Marine Corps. No has been more disillusioned and more disappointed by the conduct of the leadership of our organization than I have been about this situation with this water.”

Jerry Ensminger offered opening remarks to an audience scattered among mostly empty chairs. He’s a veteran who lost his 9-year-old daughter Janey in 1985 to childhood leukemia, one of the many illnesses linked to the contamination caused by underground fuel tanks on base and a small dry cleaning business.

Less than a hundred people attended the event, a disappointing turnout for advocates like Ensminger, who don’t want others to find out like he did, nearly 14 years ago.

“I had fixed a plate of spaghetti and I was walking into the living room to watch the evening news. And the reporter said that ATSDR wanted to take a look at the children who had been born at Camp Lejeune during the years of the contamination, primarily for childhood leukemia. Well, that’s what my daughter died from. I dropped my plate of food right there on the floor.”

Mike Partain, who drove up from Florida for the forum, shares a similar experience from 2007: a month after enduring a mastectomy to remove the 2-and-a-half centimeter tumor from his chest, Partain’s phone rang. It was his father, a Vietnam vet.

“I went home and I flipped on the TV and went to CNN like he told me. And lo and behold, there was a report. It was actually Jerry testifying in front of Congress, and he was talking about the children born on the base between January, 1968 and December of 1985 and how they were exposed to human carcinogens. My birthday is January 30, 1968. You could have knocked me over with a feather.”

Mary Blakely, who just happened to have her television on in the fall of 2009, now believes the tainted water is to blame for her learning disabilities and her mother’s death from lung cancer.

“I was watching CNN and Mike Partain was on there with some other of the male breast cancer cluster, and I heard them mention Holcomb Boulevard on the base. I recognized that from when my family lived there in Berkely Manor because it’s really close.”

Ensminger, Partain, and Blakely all attended the forum and have lived aboard Camp Lejeune at some point during the thirty-year span of contamination. But figuring out the length and potency of their individual exposures is complicated.

ATSDR Director, Chris Portier, says the government agency is using a method called water modeling to create an historical reconstruction of the wells.

“Once you turn on the pumps, it changes, so you get mixing and all sorts of different things that all have to be taken into account. And then, to get it to the people sometimes this pump’s turned on, sometimes that pump’s turned on, it’s mixed in a tank. You’ve got to figure out all of that to figure out what comes out the tap in the tail end.”

Researchers are also sending comparison surveys to people who lived and worked at Camp Pendleton. The data will determine if a presumptive link can be made between 26 different cancers and diseases that researchers say are related to heavy benzene, tetrachloroethylene, and trichloroethylene exposure.

Even though their ailments vary, many forum attendees echo the same sense of fear and loss regarding their failing health or that of a loved one:

“I always ended up on sick call. I always managed to throw up and cough up and spew up blood and be sickly and have stomach problems and esophagus problems. In 1973, they diagnosed me with osteochondroma.”

“In 1985 she had a stroke, after that, congestive heart failure, liver, and different things set in. I ended up basically with bowel disorders and nerve conditions. In 1986, my wife died.”

“One day my wife gives me a hug; she finds a bump in my chest. Two weeks later, I go to the doctor and I’m sitting on my wedding anniversary being told that I have male breast cancer. Three weeks later, they cut half my chest off. I had no idea what happened to me.”

That was Anthony Taylor, Ronald McKoy, and Mike Partain, once again. Along with the forum, they also attended a community assistance panel or CAP meeting.

Marine Corps spokesperson Captain Kendra Hardesty says that despite active participation in the past, the Corps only sent an observer this time.

“For many years, we actually did send a representative to the CAP meetings; however, in the recent past, it’s become clear that our presence at the CAP meetings was distracting for their intended purpose.”

Mary Blakely remembers one of those meetings. She jumped at the opportunity to speak up.

“I just couldn’t accept that they didn’t try to tell us about it, that they would actually lie about it being there. And the more that I talked, the angrier I got, and I started saying things like, You don’t deserve to wear the uniform of a Marine. You’re not a Marine. A real Marine is a person of honor, and what is being done is not honorable.’”

During Q/A, people asked if they had been exposed, some learning the truth for the first time. People asked how many generations could be affected researchers don’t know. But most people asked if the Marine Corps would be held accountable and step up compensation if the presumptive link is proven.

Right now, the V-A doesn’t have the authority to fund dependents, but it has recently consolidated the review process for all Lejeune claims to a single office. That means one staff can be trained to handle those cases properly.

ATSDR Senior Epidemiologist Frank Bove:

“Our goal right now is to do the best science we can so that these studies have credibility, so the science community takes it seriously and regulators take it seriously, for which to judge whatever actions they’re going to take in terms of maybe additional regulations or whatever they plan to do.”

Bove’s team is also studying mortality rates, birth defects, and childhood cancers. He says that some ATSDR studies in the late 90s are inaccurate and he hopes the new research will provide a definitive say on the risks posed by the tainted water.

Marine Corps spokesperson Hardesty maintains that until researchers prove that connection, the Marine Corps has no comment.

“We’re waiting for the studies to be completed before we can comment on that.”

When the ATSDR releases its results, some next summer and the remainder in early 2014, participants will receive a summary and the findings will be published in a peer-reviewed scientific journal. After that, the issue moves to regulators, legislators, and the Marine Corps to decide what happens next.

Learn more about the Agency for Toxic Substances and Disease Registry’s Camp Lejeune study.

Register to receive Marine Corps updates on Camp Lejeune water contamination.

online and audio report

From The Gothamist

Cancer-stricken emergency workers who responded to the 9/11 attacks on the World Trade Center and cancer victims who resided in the area do not qualify for federal aid, according to a review by the National Institute for Occupational Safety and Health. NIOSH concluded that “insufficient evidence exists at this time to propose a rule to add cancer, or a certain type of cancer,” to the list of diseases that qualify for aid under the James Zadroga 9/11 Health and Compensation Act.

Noting that only one peer-review study has looked at the link between the cloud of toxins that spilled out of the collapsed towers and cancer, NIOSH decided that “these limitations in the exposure assessment literature make scientific analysis of a causal association between exposure and health effects, such as cancer, quite challenging.”

The result is that 9/11 survivors, first responders, and residents near the towers who have been diagnosed with cancer will not receive any aid until at least late 2012, when the government will release another review. Senator Kirsten Gillibrand yesterday called on NIOSH to accelerate the review process, while Senator Chuck Schumer dismissed the findings as “premature,” telling the AP, “So many people have gotten such rare cancers — and at young ages — that it seems obvious there must be a link.”

Firefighter Kenneth Specht, who is battling thyroid cancer, tells the Daily News, “Every time we bury a New York City firefighter: Cancer. Cancer. Cancer. How can that not be included? It’s absolutely unacceptable.” And Jennifer McNamara, whose firefighter husband died two years ago, says, “I had a husband who responded to the Trade Center in his 30s in perfect, perfect health. At the age of 41 he was diagnosed with stage 1 colon cancer. They did the DNA test and he had no genetic predisposition for colon cancer, which leaves environmental factors. What is the one big environmental disaster lurking in my husband’s past? 9/11.”

U.S. Reps. Carolyn Maloney, Jerrold Nadler, and Peter King, authors of the James Zadroga 9/11 Health and Compensation Act, released a statement yesterday saying:

As the sponsors of the Zadroga Act, we are disappointed that Health Program Administrator Dr. John Howard has not yet found sufficient evidence to support covering cancers. This is disappointing news for 9/11 responders and survivors who tragically have been diagnosed with cancer since the attacks and are suffering day-to-day and awaiting help. We are confident that studies on the effects of the toxins at ground zero -research that, under the Zadroga Act, can be funded and fully supported for the first time- will ultimately provide the scientific evidence that Dr. Howard needs to make this determination. Thankfully, we know that today’s announcement is not the last word on the inclusion of cancers in the program.

Indeed, in a press release accompanying yesterday’s report, NIOSH said, “The current absence of published scientific and medical findings… does not indicate evidence of the absence of a causal association”

The Gothamist

23 News Investigation:
Cancer Concerns Parts I and II

An unusual amount of Stateline teens have been diagnosed with cancer and now a Madison doctor is trying to find out why.

Posted: 10:54 PM Jul 27, 2011

Reporter: Tina Stein
WIFR 23 News

PART 1
STATELINE, Wisc. (WIFR) — “That was furthest from my mind.”

It’s something these recent Hononegah grads wish they didn’t have in common.

“I was always tired. I actually always had a pain in my rib,” says Matt Rader.

“I was feeling really tired. I would come home everyday and just pass out on the couch,” says Amanda Babyar.

Both have Acute Lymphoma Leukemia or A.L.L.. Matt Rader was diagnosed in November 2009. Amanda Babyar just this May.

“It’s scary. It’s scary because it’s a bad disease and kids are dying from it,” says Matt’s dad Tom Rader.

A third Hononegah student, Miguel Barrera died from leukemia in March. This heartache of a journey has exposed these families to just how widespread pediatric cancer is in the Rockford region. There’s some belief the Roscoe-Rockton area has a cancer cluster.

“I have to emphasize that random chance could cause a so-called cancer cluster,” says Dr. Tiefu Shen, Division Chief of Epidemiology Studies at the Illinois Department of Public Health.

The Illinois Department of Public Health says the numbers are too low to qualify as an official cluster. However, their most recent figures are from 2007, before Miguel’s, Matt’s and Amanda’s diagnoses. During that five-year time period, 36 new leukemia cases were reported in their zip codes. 189 in all of Winnebago County. But the State doesn’t reveal age groups due to privacy reasons. (Click here for a link to cancer cases in your county and zip code. http://www.idph.state.il.us/cancer/statistics.htm)

“The tracking alone is not difficult. The difficult part is to understand them. Is to find a cause of them. The entire scientific community still hasn’t solved the puzzle of what causes cancer,” says Dr. Shen.

Many young Stateline cancer patients visit the University of Wisconsin American Family Children’s Hospital in Madison. And lately, more than usual.

“We’ve observed over the last few months there are more than there seems to be from the last five years coming from the southern part of the state (Wisconsin) and the Rockford area,” says Dr. Carol Diamond, Pediatric Hematologist-Oncologist at the UW Children’s Hospital.

Dr. Diamond is now tracking leukemia and hopes to work with other hospitals and state and federal agencies to pinpoint a cause. She’s most concerned about Acute Myeloid Leukemia. Dr. Diamond sees about four A.M.L. cases a year, but diagnosed ten patients within the last six months, half are from the Stateline. This strain is typically seen in infants, yet it’s now striking local teens like Neal Rylatt and Mitchell Riley.

“We know with myeloid leukemia, environmental exposure has played a role particularly adults. Whether it’s pesticides or herbicides or ionizing radiation, so it’s something we have to attend to in our environment certainly,” says Dr. Diamond.

The Agency for Toxic Substances and Disease says at least two-thirds of cancers are caused by environmental factors. But finding that exact cause remains unknown.

“If it turns out it’s something in the environment or something that’s happening, it’s something that needs to be uncovered and found so we could help other families so it doesn’t happen to any more children,” says Amanda Babyar’s mother, Penny Cure.

The American Family Children’s Hospital in Madison has treated 82 patients for Acute Lymphoma Leukemia, which is the most common form of leukemia. That is what Matt and Amanda have. Dr. Diamond says ten of those patients are from the Stateline. The other pediatric hospitals in Milwaukee and Chicago frequented by Stateline families could not provide cancer data. Rockford’s hospitals do not specialize in pediatric cancer.

Family friends of Neal Rylatt, mentioned above, wanted to let our viewers know a fund has been set up in Neal’s name at Harris bank to help with medical costs.

PART II
STATELINE (WIFR) — When our health goes south, it’s often the water questioned first.

“I’m freaked out to have my little sisters drink the water. I’m like don’t drink that,” says Amanda Babyar.

Eighteen-year-old Amanda Babyar was diagnosed with Acute Lymphoma Leukemia in May. A year-and-half after her Hononegah classmate Matt Rader. And two months after fellow “Indian” Miguel Barrera died from cancer.

“I just think it’s odd. I just wonder maybe something is happening and if we could find out what it is, it could be prevented,” says Amanda’s mom Penny Cure.

Some question whether the now shuttered Warner Electric has something to do with this. The EPA reports the manufacturing plant did contaminate the water, but those contaminants don’t cause cancer.

“The groundwater plume from that site has moved on and is at such a low level that it’s not impacting human health or the environment,” says Matt Warneke.

Matt Warneke is President of Loves Park-based Trans Environmental, an environmental and hazmat clean-up company. Warneke tested several local families’ water wells in early 2009 when health officials found the water at Ledgewood Elementary School contaminated. Warneke didn’t find anything wrong.

“You try to figure out where it could be coming from whether it could be diet, whether it could be water, to me people put so many chemicals on their lawns,” he says.

A clean report far from eases the minds of these families. Especially since the network of Stateline teens with leukemia is growing larger and more complicated.

“It’s the Myeloid Leukemia that’s less common that we’re seeing more of which is very very concerning to us because we typically don’t see that many of these patients. They have a worse prognosis they have a very tough course of chemotherapy. There’s more suggestion there may be an environmental exposure with the Myeloid Leukemia than the lymphoid, so we don’t know,” says Dr. Carol Diamond, Hematologist-Oncologist at the University of Wisconsin American Family Children’s Hospital in Madison.

Dr. Diamond typically sees four Acute Myeloid Leukemia patients a year at the UW Children’s Hospital in Madison. However diagnosed ten in the last six months, half from the Stateline, including Neal Rylatt and Mitchell Riley.

“This is not a contagious illness. I think it’s something until we can sort it out we shouldn’t get hysterical by any means but it certainly is hard to ignore,” she says.

Hard to ignore, but hard to get answers. The most recent figures from the Illinois Department of Public Health are from 2007, before these teens’ diagnoses. Yet endocrinologists use those statistics to determine whether there’s a problem.

“I just don’t think we have evidence to show there’s something seriously wrong at this point,” says Dr. Tiefu Shen, Division Chief of Epidemiology Studies at the Illinois Department of Public Health.

The Illinois Environmental Protection Agency doesn’t investigate unless there’s a known pollutant. And the U.S. EPA doesn’t respond until they’re called. That leaves the Winnebago County Health Department, which until now was unaware of these cancer cases. Spokespeople say they’ll start gathering data from the Centers for Disease Control and the IDPH. However both are long outdated. They remind us the incidence rate is simply high. That one-in-three will get cancer at sometime in their lifetime and it’s the second leading cause of death.

“Everyone has cancer cells in them. It’s just whether they get activated or not. Something is activating these things to happen,” says Tom Rader, whose son Matt has leukemia.

There are known risk factors for leukemia. Such as genetics, high exposure to radiation and the chemical benzene. The EPA says benzene wasn’t used at Warner Electric and it hasn’t shown in local water samples. Leaving no clues as to why this is happening to so many local families.

“It really is a mystery, but until we find out for sure, we’re just going to have to battle it,” says Rader.

Dr. Diamond says she hopes to work with other hospitals and government agencies to better pinpoint a potential cause. And we’ll be following up with her by the end of the year.

The Illinois Department of Public Health is looking to improve how it classifies cancer cases, but that information won’t be made public. Statistics from 2008 will be released in the next few weeks, however even those are from before these local teens were diagnosed.

online article

No evidence is found that the Pittston-area locale was ever a dump, officials say.

MATT HUGHES mhughes@timesleader.com

The state Department of Environmental Protection is analyzing water samples collected at an alleged dump some have linked to a purported cancer cluster in Pittston, but it will not test environmental conditions at the Butler Mine Tunnel.

Mitch Cron of the U.S. Environmental Protection Agency Region III Office in Philadelphia reviews the history and past and present environmental impacts of the Butler Mine Tunnel.

DEP Secretary Michael Krancer on Tuesday responded to state Sen. John Yudichak’s request that DEP conduct its own soil, water and air sampling at the Butler Mine Tunnel, a federal Environmental Protection Agency Superfund cleanup site that passes below Pittston and drains into the Susquehanna River.

Krancer said DEP reviewed 20 years of data from the Butler Mine Tunnel and reached the same conclusion as the EPA, that the tunnel does not pose a public health threat.

Millions of gallons of oil and chemicals illegally dumped into a borehole that indirectly drains into the tunnel in the 1970s twice spewed into the river in 1979 and again after heavy rains in 1985, prompting the EPA to monitor the site and install measures to capture potential future spills.

Earlier this year, Carroll Street resident Chuck Menichini and his family began investigating the prevalence of cancer in their neighborhood. They believe there is a cancer cluster around Carroll and Mill streets and want the EPA, DEP or other agencies to investigate.

DEP also investigated allegations that Stauffer Point, a former park at the end of Carroll Street, was once a dump and could be linked to disease in the surrounding area. Some residents of the area, the Menichinis among them, claim the area was either a municipal landfill or a site of illegal dumping in the 1960s and that water pours from the site down Carroll Street when it rains.

Krancer said DEP’s records do not indicate that there was ever a municipal landfill at Stauffer Point and that aerial photographs taken of the area in the 1930s, ’50s, late ’60s, early ’70s and within the last decade show no signs the area was used as a dump.

DEP inspected the site June 7 but could not collect surface water samples because no water was flowing that day, Krancer said. Yudichak said DEP returned to the site July 5 to collect new water samples and that the department is awaiting test results.

Any future action by DEP rests on the results of those tests.

“Unless additional information becomes available indicating a historic use of the property that may have environmental concerns, no analytical testing, beyond the surface water sampling described above, appears necessary at this time,” Krancer said in his letter.

Yudichak, D-Plymouth Township, said he was pleased with DEP’s efforts and the results of its investigation so far, even if they didn’t yield the smoking gun some may have hoped for.

“Hearing that there are no contaminants at the site, at the Butler Mine Tunnel and that other site, may not be good news for some who were looking for a definitive answer to why there are elevated rates of cancer there,” Yudichak said Friday, “but I’m pleased to find out that indeed there was not contamination there.”

It wasn’t good news for the Menichini family.

“This is a sad day for the people of this area who are still sick, suffering and dying a slow death. Or the people who are family members of the sick that can’t afford to keep their homes because they depend on the person who is sick to provide a living for them,” said Chris Menichini, Chuck’s son.

Chris Menichini said he cannot understand why no government agency has agreed to perform additional testing of the Butler Mine Tunnel, and feels he may need to pay a third party to perform the testing he feels is warranted by the data he has collected about cancer in his neighborhood.

“I don’t understand how they can say that five cases of brain cancer within one block is normal, or ‘to be expected,’” he said.

Yudichak said the investigation into Stauffer Point began with suggestions from Pittston residents, and he said the department will continue to respond to community concerns and better coordinate with other state and federal agencies in the future.

Krancer said in his letter DEP is drafting a memorandum of understanding that will provide a framework for DEP and the state Department of Health to better coordinate their response to suspected disease clusters in Pennsylvania.

Yudichak has also introduced a bill, now under consideration by the Senate Public Health and Welfare Committee, that is targeted at better coordinating the state’s response to alleged disease clusters. Among other measures, the bill would create a disease and cancer cluster response team to respond to investigate and report about suspected disease clusters submitted by state residents.

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