Archive for November, 2010

Lab animals and pets face obesity epidemic

Terry on Nov 24th 2010

Animals in human care are fatter than they were 20 years ago.

Alla Katsnelson
Nature | doi:10.1038/news.2010.628

Pets and, puzzlingly, lab animals have grown steadily fatter in the last 20 years.Doyle/Corbis

It’s not just people that are getting fatter. A statistical analysis of more than 20,000 animals suggests that the obesity epidemic is spreading to family pets, wild animals living in close proximity to humans, and animals housed in research centres — perhaps indicating that environmental factors beyond diet and exercise are at least partly to blame for expanding waistlines.

David Allison, a biostatistician at the University of Alabama at Birmingham and lead author on a study published online today in the Proceedings of the Royal Society B, stumbled across the trend while looking for a relationship between body weight and longevity in a population of marmosets housed at the Wisconsin National Primate Research Center in Madison. He decided to take a closer look. He and his colleagues examined changes in weight in a total of 24 populations (12 male and 12 female), drawn from 8 different species, including primates and rodents used for research, domestic cats and dogs, and urban feral rats. About half of the data in the analysis comes from rodents that had been used between 1982 and 2005 in the control arms of studies run by the National Toxicology Program, which assesses safe exposure levels for various chemicals.

The researchers tracked the animals’ percentage weight gain per decade, as well as animals’ odds of being obese. Because there were no clear guidelines for what animals should weigh, the authors defined obesity as the weight above the 85th percentile in each group at the earliest time point for which they had data. Both the percentage increase in body weight and the odds of an animal being overweight in a given population showed a strong trend upwards, and although the shift was statistically significant in fewer than half of the groups when they were analysed individually, it was highly significant when all of the groups’ figures were lumped together1.

“Now, we don’t know why these increases occurred, but it invites some very interesting speculation,” Allison says.

“We don’t know why these increases occurred, but it invites some very interesting speculation.”
The surge in human obesity is generally attributed to an increasing consumption of calories and a decrease in physical activity. “But maybe there are other things that are important — because those things can’t be acting on the marmosets, or the rats and mice in the National Toxicology Program,” he says.

In some cases, the explanation might be obvious: the more than 40% jump in body weight in feral rats scavenging on the streets of Baltimore may reflect the increasing richness of their diet as they feed on our more calorie-dense refuse. In other cases, hidden factors might be at play. For example, toxins that disrupt the endocrine system could be leaching into the water supply, or particular pathogens might be having a widespread effect on mammalian metabolism, Allison says.

Fat virus?

Nikhil Dhurandhar, an obesity researcher at the Pennington Biomedical Research Center in Baton Rouge, Louisiana, has shown that a human adenovirus called AD36 raises body-fat levels in animal models such as chickens and rodents. What’s more, he found that obese humans were three times more likely to be infected with the virus than non-obese people — and heavier individuals in both groups tended to be infected. Dhurandhar reported these findings in a 2005 paper on which Allison was a co-author2.

The current study is conceptually important, Dhurandhar says, because “it draws attention to having to look at the environment and how that is changing, instead of only focusing on lifestyle in a person”.

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Radiation Worries for Children in Dentists’ Chairs

Terry on Nov 22nd 2010

By WALT BOGDANICH and JO CRAVEN McGINTY
The New York Times

Because children and adolescents are particularly vulnerable to radiation, doctors three years ago mounted a national campaign to protect them by reducing diagnostic radiation to only those levels seen as absolutely necessary.

It is a message that has resonated in many clinics and hospitals. Yet there is one busy place where it has not: the dental office.

Not only do most dentists continue to use outmoded X-ray film requiring higher amounts of radiation, but orthodontists and other specialists are embracing a new scanning device that emits significantly more radiation than conventional methods, an examination by The New York Times has found.

Designed for dental offices, the device, called a cone-beam CT scanner, provides brilliant 3-D images of teeth, roots, jaw and even skull. This technology, its promoters say, is a safe way for orthodontists and oral surgeons to work with more precision and to identify problems that otherwise might go unnoticed.

But there is little independent research to validate these claims. Instead, the cone beam’s popularity has been fueled in part by misinformation about its safety and efficacy, some of it coming from dentists paid or sponsored by manufacturers to give speeches, seminars and continuing education classes, as well as by industry-sponsored magazines and conferences, according to records and dozens of interviews with dentists and researchers.

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The Radiation Boom: Clarity at a Cost
Articles in this series examine issues arising from the increasing use of medical radiation and the new technologies that deliver it.

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Video: “Childhood Cancer: When is the Best Time to Slay the Dragon?”

Terry on Nov 19th 2010

Terry Nordbrock, MPH, Executive Director of the National Disease Clusters Alliance, discusses childhood cancer causation, prevention strategies, and the role of cancer clusters in learning about carcinogens and disease etiology.Terry is the mother of a child diagnosed with leukemia and she was active in the Sierra Vista AZ childhood leukemia cluster investigation. Presented at the Candlelighters Childhood Cancer Foundation of Southern Arizona conference, 11/13/2010.

The video is 44 minutes long and can be watched here.

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Residents share worries over cancer cluster fears

Terry on Nov 18th 2010

More than 100 residents poured in to the McCullom Lake Village Hall this week after a crushing development in a court case that many had hoped would resolve once and for all whether a nearby chemical plant had polluted the water and air, causing dozens of their friends and neighbors to develop brain tumors.

In all, 32 separate claims were filed against the chemical company. But recently, a judge in a Philadelphia courtroom abruptly halted the first of the cases to go to trial and sent the jury home, reserving harsh words for the expert witness whose report had tried to show the cancers were somehow linked.

Margaret Boyer, a longtime resident of the tiny McHenry County community, voiced the fears of many when she said, “We’ll never find out how this story ends.”

Some who gathered Wednesday night tried to channel their disappointment as they discussed the offer by the Philadelphia-based chemical company, Rohm and Haas, to pay $100,000 to have more than 300 wells tested and evaluated beginning next month. Although wary of the company’s intentions, many admitted they were desperate. If they couldn’t get an answer in court, maybe the independent testing of their wells could provide one.

“The residents are all in fear,” said Terry Counley, the village president. “We have this black cloud over the village. Between the economy and the brain cancer, it’s very hard to sell a house here.”

Even if a buyer comes forward, it doesn’t guarantee a sale. About a month ago, an appraiser attached a newspaper story about the possible cancer cluster with the appraisal report to the bank, and the financing fell though, Counley said. It wasn’t the first time.

The shock waves from the legal setback in Philadelphia continue to ripple through McCullom Lake, where some residents wonder if a forgetful moment or a twitching leg will end with a diagnosis of brain cancer.

Of the claims of those who lived or worked around McCullom Lake, 18 contracted malignant brain tumors, 13 contracted benign brain tumors and one developed liver problems, documents show.

The judge who stopped the trial last month said he will soon either declare a mistrial or rule in favor of Rohm and Haas. The case involved a widow suing on her husband’s behalf after he and his two next-door neighbors were all diagnosed with rare forms of malignant brain cancer within a year of each other.

The suit alleges that the company spilled, leaked and dumped highly toxic chemicals into the soil and groundwater for more than five decades.

But some McCullom Lake residents who remain healthy after years of living in the community say they don’t believe cancer-causing chemicals invaded their village. They are sympathetic but say they just haven’t seen the evidence. Others have resigned themselves to the possibility.

“(I’m) up there in age, and if brain cancer doesn’t get (me), something else will,” said 76-year-old Eireen Rybak, who has lived for more than two decades in the same house overlooking the lake.

“It would be a comfort to know either way,” Rybak acknowledged.

McCullom Lake, population 1,200, has one restaurant (All Sports Bar & Grill) and six main streets. It’s overwhelmingly white and blue collar. Neighbors know each other and let their kids play together on the park’s green plastic alligator and grassy field.

The glistening, 245-acre McCullom Lake is the crown jewel of the town originally meant as a vacation destination for Chicagoans looking for a close getaway.

Dave Post, a retired truck driver, has lived in the village for 22 years. Like others, he worries he can’t sell his house.

Post, 52, followed the trial in hope of finding out if there truly is a higher risk of contracting cancer in the village where he raised his two daughters.

“My neighbor two doors down died of the small brain cancer,” he said.

On a recent afternoon, he stood in his backyard, his eyes squinting in the sun as he struggled to remember the name of a movie.

“Yeah, ‘Erin Brockovich.’ This is kind of like that,” he said triumphantly of the film, based on a true story about a legal secretary who exposed a utility company that contaminated the water of a small California town.

Rohm and Haas officials insist their plant in nearby Ringwood hasn’t tainted the water. An 8.2-acre chemical waste pit was in use on the site from 1959 to 1977, but it has since been closed.

The lawsuit alleges that vinyl chloride seeped into the water supply and caused the tumors. Although the company acknowledges the presence of an underground contamination plume, it asserts it has not reached private or public water supplies. Officials have previously said vinyl chloride has not been detected in the drinking water.

Rohm and Haas, a subsidiary of Dow Chemical Co., has been working with the Illinois Environmental Protection Agency to clean up toxic chemicals on the site since 1991, and a 2009 letter from the state EPA states that “no potable water supply wells are currently at risk from the groundwater contamination.”

In stating there was no connection between cancers and their plant, Rohm and Haas has previously cited reports from the McHenry County Health Department, the Illinois Department of Public Health, and the U.S. Centers for Disease Control and Prevention.

But attorneys for the residents took issue with the findings. The judge in the case had ruled the McHenry County Health Department report — which stated that an environmental analysis didn’t support evidence of a cancer cluster — and statements from a handful of other public agencies were inadmissible because they looked at the larger population instead of the McCullom Lake subset.

Citing a gag order by the judge, a spokeswoman for Rohm and Haas declined comment.

Although the residents’ attorney, Aaron Freiwald, said he couldn’t discuss specifics of the case, he argued that there was “no doubt based on the facts that there is a brain cancer cluster in McCullom Lake.”

During the hearing last month, the judge had called the expert testimony by Richard Neugebauer, the Columbia University scientist hired by the plaintiffs, “tantamount to being fraudulent,” according to court transcripts. Neugebauer had made a number of changes to his report alleging the existence of a cancer cluster.

The modifications were so egregious, the judge said, he couldn’t allow him to continue his testimony. Neugebauer described it as “a misunderstanding” and said the changes didn’t affect the validity of his report.

The trial’s sudden conclusion didn’t shake Sandy Wierschke’s conviction that the water and air caused her glioblastoma, a rare form of brain cancer. She and her husband, Tim, had made the grueling drive to Philadelphia for opening statements.

“They must think we’re idiots, that people are going to believe that it’s a coincidence,” said Tim Wierschke, 61, who owns a bowling pro shop in Crystal Lake. “This many brain cancers in this little community.”

Every few minutes, Sandy Wierschke, 48, adjusts her crooked glasses. The right temple had to be removed when it would no longer fit over the lump that starts in the middle of her head and juts all the way down to her ear. Her

life is reflected in two cardboard boxes in her living room — one filled with old bowling trophies and the other with empty pill bottles. She is eager for her day in court.

“They just have to admit that they did wrong,” she said.

Her daughter, Stephanie, has put off going to college so she can help take care of her mother.

At 22, she has her mother’s blue eyes, the same blond locks. And since her mother’s cancer diagnosis, she can’t bear to imagine a life without her.

Her eyes fill with tears before she gets a single word out.

“I try to have a positive attitude about it, but after four years, it’s kind of hard to stay positive,” she says.

She worries that her mother won’t be around for her wedding or for the birth of her children.

By now, she’s sobbing, gasping for air between words.

“Mostly, I’m scared that she’s not going to be around in the future, to see me grow up,” she said.

Tribune correspondent Terry Ganey contributed to this report.

–Duaa Eldeib

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Cancer Death Raises New Concern Over Fort Detrick

Terry on Nov 18th 2010

Randy White, upper left, with his daughters Kristen, center, and Angie, son Brandon and ex-wife Debra Cross.

Family calls on Congress for help

Thursday, 18 Nov 2010

Roby Chavez
roby.chavez@foxtv.com
By ROBY CHAVEZ/myfoxdc

FREDERICK, Md. – The recent death of another person in the family closely connected to the ongoing cancer cluster investigation near Fort Detrick has turned personal loss into rage.

Debra Cross, the ex-wife of local activist Randy White, died Friday night after battling stage four renal cell carcinoma for months.

Many people in Frederick blame a soaring number of cancer cases on the Army post’s track record of testing dangerous chemicals.

Last month, the Maryland Department of Health declared there was no cancer cluster.

The latest victim’s family is at the center of that fight for Frederick families. On Wednesday, they are sending an emotional message to Congress.

“I collapsed on the floor because it was a replay of what I had just been through two years ago with my daughter in this exact funeral home,” said Randy White, as he grieved at a Frederick Funeral Home.

White’s daughter, Kristen Renee, died of brain cancer two years ago. Now his ex-wife has died too.

“The people in Frederick need to be aware that there is a serial killer in the back yard,” he said.

White has spent $220,000 on his own independent research and testing to investigate contamination. He says it found high levels of chemicals in the ground and water.

With another death in his family, he’s making an urgent plea.

“I’m calling on Senator Barbara Mikulski and Senator [Ben] Cardin to get behind this. They need to get behind this because the people of Frederick need to be aware of what’s happening in their own backyard,” said White.

That backyard, Fort Detrick, used to be the place where White’s children used to play.

Fort Detrick officials have already admitted to testing Agent Orange and nerve gas in the past.

For the two surviving White children, the death of their mother brings sadness and fear about their own young lives. Angie has already had benign stomach cancer.

“Me and my brother live in fear if we’re going to be next. I wish I could say she died a peaceful death. It was horrific,” said Angie Pieper, Cross’ daughter.

“She couldn’t walk. We had to carry her and take care of her physically. She deteriorated. She couldn’t eat. Slowly we watched. The hardest thing I had to face besides my sister’s death,” said Brandon White, as he described his mother’s last days.

White painfully recalled his ex-wife’s dying words just days ago.

“She told me don’t quit. She looked at me and said you fight. Don’t let any other families go through the pain we’ve been through. It’s why I’m doing it,” said White as he wiped away tears.

White says by his count, his wife is the fourth person in 21 days with ties to Fort Detrick to die of cancer in Frederick.

Fort Detrick maintains it is still collecting information and reviewing government records. It is also working with the health department on its ongoing study.

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Kristen Renee Foundation

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Young Cancer Survivor Becomes the Inspiration for Legislation

Terry on Nov 18th 2010

BY JOSIE RAYMOND
Tonic.com

Trevor Schaefer beat cancer as a kid. Some of his peers weren’t as lucky. Today, he advocates for better laws so other teens don’t need chemotherapy.

Charlie Smith tells a story about her son, Trevor Schaefer, who was diagnosed with brain cancer in 2002 while the pair lived in idyllic McCall, Idaho.

He was just 13 years old, in the midst of 14 months of chemotherapy, bald, thin, with sunken eyes, when he sat at the breakfast table thinking of other children from his hometown who had also been diagnosed with cancer. Smith remembers, “He looked up at me and said, ‘Mom, I’m so angry that this happened to me but it happened for a reason. We need to find out why this is happening to so many kids. I want to get some answers.’”

Trevor during treatment

Boxer’s In His Corner

Now a cancer-free 21-year-old business major at Boise State University, Schaefer has been looking for answers, and finding some, for the last eight years. His biggest success came at the end of September, when Senator Barbara Boxer (D-CA), the Chairman of the Senate’s Committee on Environment & Public Works, introduced “Trevor’s Law,” federal legislation three years in the making aimed at improving the investigation of disease clusters. “It’s about preventing future clusters by finding the causes,” Schaefer explains.

“Disease clusters” are geographical pockets with higher-than-average incidences of disease, such as the unofficial cluster of childhood cancers in McCall. Schaefer’s Senator, Mike Crapo (R-ID), joined the bill as a co-sponsor, spurring hopes that the Senate will pass the bipartisan effort sometime next year, despite the recent gridlock.

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Shadow of Sickness: Part 1 of 3

Terry on Nov 16th 2010

Community Wants Answers On Cancer Rate

Spartanburg WSPA TV, South Carolina
By CHRIS CATO
Published: November 16, 2010

Whoever came up with the saying “good fences make good neighbors” clearly never lived on Bennett Dairy Road.

Here in the Cannons Campground community east of Spartanburg, the yards are not separated by fences. But the quality of the character of the person next door is never in question.

Take Benjamin “Frog” Bennett, for example. At 75 years old, Frog would never let a fence impede him from his daily duty of walking to the house next door to check on Karen Murph.

“She needs somebody and I’m the closest one to her, and I’m retired,” says Bennett, “so why shouldn’t I look after her?”

The neighbors share more than a cup of sugar. An unfortunate bond binds them. Both lost their spouses to cancer. Frog’s Martha died of lymphoma in 2008 at age 73. She fought the disease for 14 years. The last two were the worst.

“When she passed away, she weighed 75 pounds,” says Bennett. “If it had been something I could have fought with my hands, it would be different. But I couldn’t. I couldn’t do anything for her.”

Murph knows his feeling of helplessness. Her Tommy lived for only 18 months after developing a brain tumor in 1997 at the age of 44. While he was undergoing treatment, she was also diagnosed with cancer.

“We had always been so healthy,” says Murph. “It was so weird how it just hit us both like that. But we weren’t the first on this road to get sick.”

WELCOME TO THE NEIGHBORHOOD

Karen and Tommy Murph moved to Bennett Dairy Road from Landrum in 1990. In this area where most of the surnames are Bennett or Chapman or Arthur, the Murphs stood out. But after their diagnoses with cancer, they knew they were officially part of the neighborhood. The house across the road from them was home to a mother-daughter pair of Chapmans who had survived uterine and breast cancers, respectively. Next door, Frog Bennett’s wife was battling lymphoma. Next door to the Bennetts, Fred Arthur was in his final struggle with colon cancer. Next door to Fred Arthur, Ralph and Joyce Arthur were still haunted by the loss of their youngest child, Kimberly, who died in 1975 at the age of 15 with leukemia.

“I will never, ever, ever get over it,” says Ralph Arthur, now 80. “I don’t care how long I live, I will never get over losing Kim, so young.”

The sad pattern continues down Bennett Dairy Road, which stretches just over a mile from Old Converse Road to Bud Arthur Bridge Road. In a door-to-door survey of homes in this small area, WSPA documented 25 cases of cancer, 14 of them fatal, dating back to the Kim Arthur case in ’75. The most recent diagnosis was in 2001, a 60-year old man with bone cancer.

“It just makes you wonder why?” asks Frog Bennett. “Why has this particular area had so many deaths?”

That’s the question WSPA set out to answer at the onset of this investigation in August 2010, a journey that would lead to some places this community had forgotten about and, ultimately, to a place everyone knows.

NOT A CANCER CLUSTER…

Your first impulse when hearing of a seemingly high number of cancer cases in a limited area is to label it a “cancer cluster”. Your second impulse is to take the information to South Carolina’s authority on such matters: the Department of Health & Environmental Control. But DHEC spokesperson Adam Myrick quickly informed us the illnesses on Bennett Dairy Road do not constitute a cancer cluster for a number of reasons. The first and foremost being, cancer is common.

“Cancer’ is an umbrella term given to a wide variety of diseases of a cellular nature for which there is no cure,” says Myrick. “Because of that, you are always going to be able to find a certain level of cancer in every community.”

He also points to other factors, such as heredity and lifestyle. Cancer is genetic (many of the families on Bennett Dairy Road and the surrounding area are related). Cancer is more common in people over age 50 (many of the patients in this area are older). And cancer clusters are usually made up of the same type of cancer because of a common environmental factor (such as asbestos causing lung disease).

A true cancer cluster, as defined by DHEC, exists when the number of cancer cases that occur is more than would be expected by chance to occur in a certain location or time period. To determine if this exists, DHEC’s South Carolina Central Cancer Registry (To learn more about cancer clusters, click here) conducts what is called a community cancer assessment by looking at the number of cases and deaths that occurred in the zipcode of the area of concern. In fact, SCCCR conducted an assessment of the Bennett Dairy Road zipcode, 29307, in 2002, using data from 1996 to 2000. (1996 is the earliest year that can be studied by SCCCR because that is the first year legislation required hospitals, labs, and doctors’ offices to report new cancer incidences to DHEC.) The assessment found there were fewer cancer cases and cancer deaths than expected in 29307, concluding there was no evidence of cancer clustering.

To find out cancer rates in your community, click here.

…OR IS IT?

However, many of the cases documented by WSPA in Cannons Campground were diagnosed prior to 1996. Seeking a second opinion, we took our findings to Dr. Jim Burch, an epidemiologist with the University of South Carolina’s Cancer Control Program.

He echoed many of the things DHEC told us regarding cancer clusters. And he told us it’s hard to make an assessment without knowing the community firsthand. But he also said three things about our data caught his eye:

1) While the cases are not all the same type of cancer, there are several hematological forms of the disease, including three cases of leukemia and variations of bone cancer. The three leukemia cases are located almost next door to one another.

2) While many of the patients are older, there are several young victims. In 1976, one year after Kim Arthur died of leukemia at age 15, a 17-year old named David Putman was diagnosed with osteogenic sarcoma in his leg. He died two years later. Also in 1976, 35-year old Loretta Richburg developed a mass in her leg and died four years later. None of these victims were related.

“It does seem unusual to me,” said Dr. Burch, looking at a map pinpointing the homes of those afflicted. “A lot of the cancer clusters that have been investigated — and there have been a lot of them with problems all across America — started in just the same way.”

3) The third thing about our information that struck him as odd was the story of Karen and Tommy Murph — not the fact that they developed cancer at the same time; Burch says that’s not unheard of. But there was a third member of the Murph household affected during the same time period: Petey, the family dog.

“She wasn’t even that old,” says Karen. “She just had these big knots come up on her. (The veterinarian) said she had tumors.”

The dog died of cancer just before Tommy Murph succumbed to the tumor in his brain.

“That’s unusual,” says Dr. Burch. “Pets can serve as sentinels for situations where there might be an environmental contaminant.”

CONTAMINATED?

If there was a contaminant in the environment on Bennett Dairy Road, Karen believes she knows how it entered her household: through the well in her backyard. Most of the homes in this area were on private wells until the mid-to-late 1990s. Karen says her water tasted awful.

“It was just so doggone strong, it just about made me sick to my stomach,” says Karen.

She says she stopped drinking the water and refused to let her son do so. Tommy kept drinking it, and so did Petey the dog. But Karen says she did enjoy taking long baths in the tub.

“I was the kind that would just get in there and soak for hours,” she says.

The disease she was diagnosed with in 1997 was anal cancer.

After undergoing radiation treatment, the cancer went away. But she says it came back in 2005 in another part of her body and is now in her brain. She says her doctor recently gave her six months to live, but she doesn’t accept it.

“I’m fighting it and I’m gonna win it, by doggies,” says Karen. “i’m gonna fight with everything I can.”

Frog Bennett says he never had a problem with the way his well water tasted. But another neighbor, Corinne Dillard, says she did. She says it started tasting strange in the 1970s.

“Everybody in my family just started getting sick,” says Dillard, 79.

She says over the years, they had their water tested three times and each time it was contaminated. She couldn’t remember with what it was contaminated, but she says she remembers what her doctor said when she showed him the test results.

“He told us not to use the water, not to even take a bath in it,” says Dillard.

That was the year before her husband died of heart trouble. Dillard says shortly before his death, doctors found a cancerous tumor in his throat.

RECENT TESTS COME BACK CLEAN…SORT OF

As part of this investigation, WSPA paid a private lab, Rogers & Callcott, to test water samples drawn from six wells in the community, including Karen Murph’s inactive well and two active wells. Three of the samples came back with high levels of acetone, but the lab determined that’s because the bottles used by Clemson University researchers to collect the samples were pre-rinsed in acetone. There were no suspicious levels of any other volatile organic chemicals.

These results were not a surprise. Volatile organics break down rapidly in the environment. And ground water is constantly moving.

“Test performed today don’t tell us what was in those wells 20 or 30 years ago,” says Dr. Burch.

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Rare cancers group in Frisco neighborhood

Terry on Nov 15th 2010

Will Steele was diagnosed earlier this year with a rare form of cancer that has no cure. He has the love and support of his family: (from left) 6-year-old Paige, 3-year-old Liam, 5-year-old Emma and his wife, Kerri.

By Jessica Rush, jrush@acnpapers.com
Published: Monday, November 15, 2010

Will Steele, 34, of Frisco was diagnosed in February this year with desmoplastic small round cell tumor (DSRCT), an aggressive sarcoma (cancer of the soft tissue and/or bone) so rare that the Texas Cancer Registry only reports between three and eight cases a year statewide. And yet, 20-year-old Joffrey Swieczkowski, who lives about a mile away from the Steele family, received a DSRCT cancer diagnosis in September.

The coincidences continue.

Two local girls in high school also have rare forms of cancer, Ewing’s sarcoma. DSRCT is a combination of both Ewing’s sarcoma and Wilms’ tumor. One of the girls lives in the same neighborhood, Plantation Resort, as the Steele family.

Submitted Photo: From left: Joffrey Swieczkowski stands with his older brother, Hudson, and younger brother, Stefan. Joffrey was diagnosed with the same rare form of cancer that Will Steele has, and they live within a mile of each other.

Dr. Jon Trent is an associate professor of medicine at MD Anderson’s Department of Sarcoma Medical Oncology in Houston. He said both DSRCT and Ewing’s are very rare diseases. There are only a few hundred cases in the United States every year.

“Where there are four rare cancers in a small area, you could be concerned about an environmental exposure,” Trent said. “It certainly could be due to really bad luck and chance, but it’s highly unlikely.”

It is very difficult to find out what causes rare cancers, because there are not enough cases to study, he said.

“Presumably, there is some kind of genetic event, whether that is due to something in the environment or a mistake internally in the cell,” Trent said.

The Texas Cancer Registry’s website defines a cancer cluster as the occurrence of a greater-than-expected number of cases within a group of people, a geographic area or a period of time. Christine Mann, assistant press officer for the Texas Department of State Health Services, said it would be difficult for the state to evaluate if the Frisco residents are indeed a part of a cancer cluster.

“There’s no statistical data on that cancer in Collin County,” Mann said.

The records, which go back to 2001, show no cases of DSRCT in the geographic region. Mann said recent diagnoses from this year would not yet be updated in the cancer registry and that there is little known about the possible environmental factors that could cause or precipitate growth for this type of cancer.

Still, Steele and Swieczkowski were both healthy before their sudden health problems. Steele, an athlete since middle school, was a semi-professional runner, often running between eight and 10 miles a day.

“We were really surprised by his diagnosis,” his wife, Kerri, said. “He rode his bike to work every day.”

The father of three found a lump in January of this year that eventually led to the discovery of more tumors.

“His entire abdominal cavity, organs and lymph nodes were all full of tumors,” Kerri said.

Doctors told the Steele family that Will had from a year to 18 months left to live.

Swieczkowski’s diagnosis came as a similar surprise. His mother, Rebecca, noticed her son becoming extremely fatigued throughout the summer. He worked on changing his diet and adding exercise, but then stomach pains surfaced. Joffrey was misdiagnosed several times before DSRCT was confirmed.

“That’s what’s so unusual – he was so completely healthy, living and eating,” Rebecca said. “He never smoked or did drugs or alcohol. You have no hints at all. We don’t really have cancers in our family at all.”

Joffrey was also active outdoors. As a former marching band member at Centennial High School, he practiced in the school’s parking lot, and Rebecca said he spent most of his weekends over at two friends’ houses in Plantation Resort.

The families have not yet been able to get together at the same time to discuss possible commonalities as they focus on chemotherapy treatments and its side effects, but Rebecca is anxious with questions.

“What was in the soil?” she asked. “Last winter we had lots and lots of rain and more snow that broke records. You just don’t know what really triggers it, but they were all outside in this area.”

The families speculated that Exide Technologies, a battery-recyling plant about five miles north and west of Plantation Resort, could have contributed to the environmental catalyst. Historically, wastewater from Exide’s facility used to be discharged to the then-operating Stewart Creek wastewater treatment plant. The wastewater contained certain concentrations of lead and cadmium, known human carcinogens, which Exide officials said could have ended up in the sludge-drying beds of the treatment plant.

However, topographical maps of the city show that water near the plant would flow in the southwest direction, away from Plantation Resort. City officials said the prevailing winds blow northeast of the plant, which does not put Plantation Resort in its direct path.

Last Saturday, more than 250 other runners joined together in the Frisco Trails community to raise money for the Steele family and help out with the onslaught of medical bills. Wim Schalken of The Trails Runners helped organize Will’s Run after neighbor Kathy Dann approached the running group.

“This is so close to home, and we realize that this could happen to any of us,” Schalken said. “It’s like the typical Frisco family, and it just makes you humble. You have to appreciate every day that you have.”

Visit willsrun.com for information.

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EPA Chemical Health Hazards Program Has 55-Year Backlog of Work, Report Says

Terry on Nov 11th 2010

By Chris Hamby | November 9, 2010, 5:14 pm
Public Integrity

Updated: 11/9/2010, 3:30 pm | Eighteen months after the Environmental Protection Agency announced reforms to its controversial process for evaluating health hazards posed by dangerous chemicals, significant problems continue to hamper the program and leave the public at risk, according to a new report by a nonprofit research group.

The agency has fallen years behind in meeting its statutory requirements to profile at least 255 chemicals and assess their potential links to cancer, birth defects, and other health problems. That delay has effectively halted numerous regulatory actions that would protect the public, according to the report by the Center for Progressive Reform, a public health and environmental protection group. “[The Obama administration has] been so busy reacting to the right wing and fighting off crisis after crisis that it’s been difficult for them to see this pattern of regulatory failure,” said Rena Steinzor, president of the center and a University of Maryland law professor.

The Government Accountability Office, Congressional committees, and other experts have criticized the EPA’s Integrated Risk Information System (IRIS) in recent years. Under President George W. Bush’s administration, critics say, the agency’s chemical assessment efforts ground to a near halt because of interference by other federal agencies, unwarranted delays, and a lack of transparency.

The GAO warned in a 2008 report that the IRIS database “is at serious risk of becoming obsolete.” In January 2009, the GAO added the EPA’s method for assessing and managing chemical risks to its list of “high-risk” areas requiring attention.

DATABASE INCOMPLETE, OUTDATED
Created in 1985, the database has become indispensable for regulators, public interest groups, and tort lawyers. But the EPA has fallen far behind in conducting chemical assessments, and, if the current pace continues, it will take 55 years to get through the backlog, the report says.

The net result of years of delay, observers have charged, is that the IRIS database, which lists the risks associated with certain chemicals, is incomplete and largely outdated — a serious problem given that the database underpins much of the regulatory action by not only the EPA, but also state and local governments.

The EPA said it was reviewing the new report. “Under the leadership of EPA Administrator Lisa Jackson, the IRIS program has been reinvigorated with a new streamlined assessment development process,” the EPA said in a statement. “Significant progress has been made toward addressing both new assessments and updating others.”

Democrat Brad Miller, chairman of the investigations panel of the House Science Committee, says IRIS was “badly broken in the Bush administration” and is still too slow and cumbersome. “We can’t wait for clusters of rare cancers or birth defects to tell us the consequences of a chemical exposure,” added Miller, a North Carolina lawmaker who held a hearing on IRIS in June 2009.

Responding to the GAO’s 2008 report, Bush-appointed EPA Assistant Administrator George Gray defended the agency’s handling of the program and said delays occurred in part because “today’s IRIS assessments are much more sophisticated, complex, and of higher scientific quality than at any other time in the program’s history.” The Bush administration sought to streamline the IRIS process, while striking a balance between transparency and “protecting the deliberative process,” Gray said in comments attached to the 2008 report.

Gray did not respond to an inquiry from the Center for Public Integrity.

INPUT FROM OTHER AGENCIES
The new report by the Center for Progressive Reform criticizes a 2004 policy giving other federal agencies advance input on the IRIS chemical assessments while keeping their comments — and any changes made because of them — secret as internal executive branch deliberations. Some federal agencies, such as the Department of Defense, could face steep costs if a chemical assessment led to new regulation or compelled a massive cleanup effort.

EPA Administrator Lisa Jackson instituted reforms in May 2009, giving the EPA — not the White House’s Office of Management and Budget (OMB) — more control over the assessment process, making written comments from other agencies public, and shortening the target timeframes for assessments.

But those changes have produced “only modest progress,” the Center for Progressive Reform says, while the database remains “woefully incomplete.” The report identified the interagency review process as a key concern, saying that the review system had greater transparency but did not eliminate the practice of giving other agencies an early review.

The continued involvement of the Office of Information and Regulatory Affairs (OIRA) – an office within the OMB that reviews federal regulations — provides an avenue for interference and delay, the center’s Steinzor said. “This is pure science, and OIRA doesn’t need to be involved,” she said.

The EPA also continues to focus too heavily on a few complicated, high-profile chemical assessments while neglecting others that would take less time, the report says. Many of the chemicals covered under environmental laws governing air pollutants, drinking water contaminants, and hazardous waste sites are not listed in IRIS. For example, the agency has yet to profile 32 of the 188 hazardous air pollutants specifically named by Congress in the 1990 Clean Air Act amendments.

The nine assessments that the EPA completed in 2009 represent an improvement over the four completed in 2006-07, the report says. But to improve regulation of toxic chemicals, it says, the EPA must allocate more resources to IRIS, eliminate excessive outside reviews, and tackle both quick-hit and high-profile assessments.

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America’s Hidden Diseases

Terry on Nov 6th 2010

Americans living in high poverty bear the burden of more than 20 common diseases that the medical establishment largely does not monitor, diagnose or treat, studies show.

By Melinda Burns

Diseases that are common and chronic among the poor of Africa are showing up in high poverty areas in the U.S.

Millions of poor Americans living in distressed regions of the country are chronically sick, afflicted by a host of hidden diseases that are not being monitored, diagnosed or treated, researchers say.

From Appalachia to the Mississippi Delta to the segregated inner cities of the Great Lakes and Northeast, they say, and from Navajo reservations to Latino communities along the U.S.-Mexico border, more than 20 chronic diseases are promoting the cycle of poverty in conditions of inadequate sanitation, unsafe water supplies and rundown housing.

“These are forgotten diseases among forgotten people,” said Peter Hotez, a microbiologist at George Washington University, president of the Washington, D.C.-based Sabin Vaccine Institute and co-founder of the institute’s Global Network for Neglected Tropical Disease Control. “If these were diseases among middle-class whites in the suburbs, we would not tolerate them. They are among America’s greatest health disparities, and they are largely unknown to the U.S. medical and health communities.”

Now, based on a study published by Hotez for the Public Library of Science in 2008, the U.S. House of Representatives has passed the Neglected Infections of Impoverished Americans Act. The bill would, for the first time, require the Secretary of Health and Human Services to report to Congress within the next 12 months on the country’s neglected diseases of poverty and recommend funding to address them. After passing in the House in September, the bill has not advanced since it was introduced in the U.S. Senate.

“The first step is to raise awareness of these diseases,” Rep. Henry Johnson, the Georgia Democrat who introduced the bill, said after the Sept. 29 vote. “Today is an important step in recognizing the threat and moving toward a solution.”

Over the course of the 20th century, deaths from infectious diseases declined rapidly in the U.S., and polio, tuberculosis, typhoid fever and malaria no longer represent a serious health threat here. But diseases that are common and chronic among the poor of Africa, such as Chagas, a leading cause of heart failure and stroke among Latinos; cysticercosis, which causes convulsions; and ascariasis, which causes abdominal pain and fever, also likely afflict millions of people living in the American South, in Appalachia and along the U.S.-Mexico border, Hotez said. These illnesses are spread, respectively, by parasites in insects, tapeworms in raw pork and roundworms in soil.

Most of the diseases named in the legislation have not been surveyed in the U.S. for decades, if ever. None are tracked by the U.S. Centers for Disease Control and Prevention, though between 4 million and 10 million Americans could be infected, Hotez said. Drugs are available to treat a number of the neglected diseases, he said, but doctors are not trained to diagnose them.
“These are not even rare diseases,” Hotez said. “Yet there’s so little research on them, we don’t know the full extent of their impact, how they are transmitted, or how they contribute to disability. We do not have good diagnostic methods. We can’t even begin to think about controlling these diseases.”

The website of the Centers for Disease Control and Prevention lists six “major neglected infections of poverty” in the U.S., all of them parasitic or viral diseases, and notes that they can cause birth defects, epilepsy, hearing loss, infertility, blindness and heart failure. The site says that improved tracking, testing and treatment is needed to reduce illness and death.

The CDC conducts public health surveillance only at the request of states, and the states have not asked the agency to track of any of the diseases on Hotez’s list, said Susan Montgomery, an epidemiologist with the CDC’s Division of Parasitic Diseases and Malaria. Based in part on blood donor data, she said, the agency estimates that 300,000 Americans are afflicted with Chagas, and that between 60 and 300 babies are born with the disease in the U.S every year. But the agency does not formally collect reports from states about cases of Chagas here.

“There’s an information gap,” Montgomery said. “These are diseases that are disproportionately affecting parts of our population who are living in poverty, but it’s in the context of many other health challenges our country is facing, including obesity, diabetes, HIV and tuberculosis. The states have not determined that those are diseases that they want the CDC to conduct surveillance for. They are not being monitored in the public health system. They may be diseases that physicians are not aware of and don’t think to test for.”

If the Senate passes the new bill, the CDC will conduct a review of existing data on the neglected diseases and try to identify the information gaps, Montgomery said.

According to a report by Families USA, the National Institutes of Health in 2007 accounted for 76 percent of $376 million in U.S. government spending for research on eight globally neglected diseases, including three that afflict hundreds of thousands of Americans — Chagas disease, dengue fever, which can be fatal, and leishmaniasis, a centuries-old disease that produces skin ulcers. Tuberculosis and malaria received nearly three-quarters of the funds. (And the private market sees more opportunity in battling the scourge of baldness.) Overall, the Families USA report said, NIH funding for the eight diseases represented less than 1 percent of the agency’s total research budget of $29 billion.

In 2009, the National Institute of Allergy and Infectious Diseases, which is part of the NIH, spent $367 million of its $4.7 billion budget researching most, but not all, of the 24 neglected U.S. diseases listed by Hotez, not counting stimulus funds, the institute staff said. At the same time, $1.6 billion went to biodefense and emerging infectious diseases.

Still, $367 million is “not a trivial amount of money, by any means,” said Lee Hall, chief of parasitology and international programs for the institute. There is ongoing and substantial government research on most of the diseases on Hotez’s list, and the research helps both the developing world and the U.S., he said. The work itself is difficult because parasites must often be grown in live animals, so the institute helps researchers by providing them with biological material for the lab, Hall said. To date, there are no licensed vaccines for any of the parasitic diseases that afflict humans.

“The NIH has had a long-standing commitment to these diseases, and we have supported research on them for a very long time,” Hall said. “I’ve spent most of my career on parasitic diseases, many of which fall into this category. I don’t think we’ve neglected these diseases at all.”

Yet even as research goes forward, the public health problem persists.
According to a study published by Hotez in 2009, trichomoniasis, or “trich,” one of the most common sexually transmitted diseases in the world, afflicts up to 29 percent of African-American women in the South and impoverished inner cities of North, approaching rates in Nigeria, where 38 percent of women are infected. People with trichomoniasis are more susceptible to HIV. About 880,000 African-American women in the U.S. are infected with the parasite that causes trichomoniasis, Hotez said.

Hotez’s list includes bacterial diseases spread by rats and lice in the poor neighborhoods of Baltimore and Detroit; parasitic diseases from Africa, prevalent among the “Lost Boys and Girls of Sudan” who resettled in the U.S.; parasitic diseases among the Inuit of Alaska who eat infected seal and caribou meat; and CMV, or cytomegalovirus, a congenital virus that infects an estimated 10,000 infants in America yearly. Babies with CMV develop hearing and vision loss, sometimes years later.

Along the U.S.-Mexico borderlands and in the Gulf Coast region, Hotez said, up to 200,000 people living in poverty may be infected with dengue fever, a viral disease that is transmitted by mosquitoes. Dengue can lead to failure of the circulatory system.

In the 1970s and 1980s, Hotez said, 30 percent of rural black children in the South tested positive for toxocariasis, or roundworm, a parasitic disease that is transmitted through the feces of dogs and cats. Toxocariasis causes abdominal pain, swollen glands and vision loss and may be linked to the rise in asthma among inner-city children. Extrapolating from old data, Hotez estimates that between 1.3 million and 2.8 million poor Americans are infected with toxocariasis today.

“These are truly neglected problems,” he said. “People have these diseases for years, and during this time, they promote poverty. They interfere with child growth and development and, in some cases, impair intelligence and cognition. They affect pregnancy outcomes and are co-factors in the AIDS epidemic.”

As reported in Miller-McCune, Hotez has previously challenged both drug makers and policymakers to divert more funding to the neglected diseases of poverty in the developing world.

“They have no advocacy,” he said. “It’s been very frustrating.”

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