Researchers will discuss polycythemia vera progress

Published: June 14, 2011

Researchers on Wednesday will discuss progress on studies begun after they detected a blood-cancer cluster in the region.

The meeting at 6 p.m. in the Tamaqua Community Center, 223 Center St., will bring together researchers from two universities, two state agencies and the federal Agency for Toxic Substances and Disease Registry who are studying polycythemia vera.

Polycythemia vera or PV is an excess of red blood cells that can lead to heart attacks, strokes, headaches and other symptoms and is treated by withdrawing blood periodically.

In 2005, the state Department of Health found a higher incidence of PV cases in Schuylkill and Luzerne counties than in the rest of the state. Next, state officials asked the federal agency to help investigate whether the people actually had PV and to look for other cases in those counties and in Carbon County.

In August 2008, the federal agency made a public report saying 33 cases of PV had been confirmed by detecting a gene mutation in the patients. Some areas studied had higher incidences of PV than the rest of the three-county region, and one of the clusters was statistically significant, the federal agency said.

In May 2010, doctors Kenneth Orloff and Bruce Tierney of the federal agency reported that 1,170 other residents of the three counties had been tested.

Of those, 19 had the gene mutation. Five of them had been diagnosed with PV previously, but the 14 new cases represented an incidence of 1.2 percent out of the total group tested.

Although PV patients frequently have the gene mutation, known as JAK 2, the disease is not hereditary, nor is its cause known.

At Geisinger Health System, researchers are studying how often people with the mutation get the disease and how prevalent the JAK 2 mutation is in Northeastern Pennsylvania.

Researchers at Mt. Sinai School of Medicine in New York City are examining genetic differences between PV patients in Northeastern Pennsylvania and elsewhere. They also are studying the relationship of cells to certain chemicals while looking for links between chemicals and PV.

Employees of Pennsylvania’s Department of Environmental Protection are sampling drinking water, dust and soil at the homes of study participants. Also, the department’s workers are testing water and sediment from the McAdoo Superfund Site and cogeneration plants in the area.

Drexel University’s team is looking for risk factors for PV and related diseases in the region.

At the University of Pittsburgh, researchers are studying the number of PV cases in a four-county area and reviewing reports of PV and related diseases.

National cancer prevention study looking for local volunteers

By Erin L. Nissley, Staff Writer
Published: May 2, 2011

Next month, Northeastern Pennsylvanians will have an opportunity to participate in a groundbreaking national study that will examine how lifestyle, genetics and the environment can cause or prevent cancer.

The American Cancer Society’s Cancer Prevention Study-3 is seeking to enroll up to 500,000 people from across the U.S. and Puerto Rico over the next few years. Enrollments locally will be taken during the Relay for Life event in Hazleton on from 10 a.m. to 2 p.m. June 4, said local cancer study chairwoman Amy Herbener.

Men and women between the ages of 30 and 65 who have never been diagnosed with cancer can enroll in the study. At the Relay for Life event, potential enrollees must complete a brief written survey, provide some physical measurements and give a small blood sample. A more comprehensive survey must be completed at home.

And over the next two or three decades, participants will be asked to fill out follow-up surveys every few years, Herbener said.

“This has the potential to change so much,” from advances in cancer screenings to finding a cure, she said. “It’s about 15 hours of time over the course of someone’s lifetime (to fill out the surveys).”

It is the third such study undertaken by the American Cancer Society. The first began in the 1950s and played a major role in understanding cancer prevention and risk, especially the link between cigarette smoking and lung cancer and the impact of air pollution on heart and lung conditions, according to American Cancer Society officials.

A second study, which began in 1982, is still ongoing.

Samuel Lesko, M.D., a research and medical director at the Northeast Regional Cancer Institute, said comprehensive studies like this can be a powerful tool for understanding the causes of cancer and the differences in how tumors develop. He said the study will likely examine participants’ DNA to see how subtle differences in genetics can impact the risk or acceleration of cancer.

People who want more information or to pre-register should call the American Cancer Society in Hazleton at 570-459-1212 or visit

Tamaqua-area cancer cases to be part of Senate hearing on disease clusters

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

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

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

The report references a cluster of polycythemia vera cases in Schuylkill, Luzerne and Carbon counties. In 2008, the Agency for Toxic Substances and Disease Registry confirmed the diagnoses of polycythemia vera in 33 people and found rates in some areas exceeded the overall county rate by four times. Residents have pointed out that their homes are near McAdoo Associates, where toxic material was recycled and dumped until 1979 and the site made the federal Superfund list of the nation’s most toxic places.

Polycythemia vera is a blood disorder in which the bone marrow produces too many red blood cells, which causes the blood to thicken.

The report also references another cluster of 12 employees of Luzerne Intermediate Unit 18 who were diagnosed with non-Hodgkin’s lymphoma and lupus. According to the report, in 2004, Penn State University found health hazards when trichloroethylene, or TCE, was used to clean two printing presses in the administration building in Kingston, near Wilkes-Barre. The solvent routinely spilled onto the carpet. Researchers found TCE exposures were 10,000 times higher than what the Environmental Protection Agency considers an acceptable cancer risk for someone working in the building for at least 10 years.

“The report is being released at the Senate hearing because of the problems of disease clusters across the country, how they’re being investigated and whether they’re being adequately investigated,” Solomon said. “What I would like to see is better coordination between state and federal agencies and clear guidelines for how to investigate disease clusters and to have more community involvement.”

Others who will testify at the hearing include Trevor Schaefer, a 21-year-old brain cancer survivor from Boise, Idaho, and Erin Brockovich, who became well-known for her fight to document a disease cluster in Hinkley, Calif., which was turned into a movie starring Julia Roberts.

Sens. Barbara Boxer, D-Calif., and Mike Crapo, R-Idaho, proposed the legislation to fund research to determine whether connections exist between disease clusters and environmental contaminants.

By Denise Allabaugh (Staff Writer
Published: March 29, 2011

Rare blood disorder

Rare blood disorder
Study will look at air and water quality

Reported on Friday, October 29, 2010

DONALD R. SERFASS/TIMES NEWS Members of the Tri-County Polycythemia Vera Citizens Advistory Committee pose questions late Thursday to experts who will study the local air and water quality. From left: CAC chairman and Tamaqua Mayor Chris Morrison; Mark Ioos, vice president, Skelly and Loy, Harrisburg; Peter Jaran, engineer, Equity Environmental Engineering, Flanders, NJ; and Joe Murphy, CAC member.

A New Jersey firm will oversee a regional air and water quality study to try and find out why there is a higher then normal incidence of a rare blood disease in the local area.

The study, the first of a multifaceted investigation, comes about after cases of polycythemia vera, a rare blood cancer, have surfaced in clusters at an unusually high rate in Carbon, Schuylkill and Luzerne counties.

Peter Jaran of Equity Environmental Engineering, Flanders, N.J., will serve as project manager and will employ the expertise of a project team to include Skelly & Loy, an environmental consulting firm in Harrisburg; and Princeton Somerset Group, a firm headed by Dr. Dennis M. Stainken, providing expertise in the field of toxicology, health issues, chemical exposures, contamination and other issues.

DONALD R. SERFASS/TIMES NEWS “This is very personal to the community. We need to have open lines of communication,” says Peter Jaran, left, on Thursday at Tamaqua Borough Hall. Jaran, an environmental engineer from New Jersey, will serve as project manager in an air and water quality study as part of an investigation into a rare blood disorder that surfaced two years ago in Carbon, Schuylkill and Luzerne counties. Shown right is Joe Murphy, Hometown, of the Citizens Advisory Committee.

The study will be funded through part of the $8M earmarked by Sen. Arlen Specter.

“We were awarded the contract with the Centers for Disease Control (CDC) at the end of September,” said Jaran.

On Thursday, members of the Tri-County Polycythemia Vera Community Advisory Committee (CAC) took Jaran and Mark B. Ioos, vice president, Skelly and Loy, on a tour of the local area. The session was followed by a meeting at Tamaqua Borough Hall in which Jaran outlined the course of action and answered questions posed by CAC members. Tamaqua Mayor Chris Morrison serves as chairman of the CAC and moderated the session.

The goal of the assessment is to identify possible contributing factors of the PV cases and related myeloproliferative diseases (MPDs) and their possible link to environmental conditions in the area.

The discussion mentioned factors such as the presence of Superfund sites in the area, along with fly ash trucking and storage, and a wide variety of other industries such as co-gen plants, gas plants and manufacturers, and even the existing fluff pile in Hometown.

“We were originally looking at the drinking water,” revealed Jaran, noting that “the first step is that we have to take a look at the (existing) data. How does each one of the environmental aspects impact the human body.”

Hydrogeology has been identified as task one of the project, followed by air pollution exposure assessment. Air assessment will evaluate present and past exposures of cluster-area residents to specific air pollutants, including factors such as topography and air emission. Task three will focus on community interaction, including a working relationship with the CAC.

“This is very personal to the community,” said Jaran. “We need to have open lines of communication.”

That view was echoed by Morrison, who stressed the importance of timely dissemination of information to the public.

CAC members posed a wide variety of questions to Jaran and Ioos. For example, Hometown resident Joe Murphy, longtime advocate for a health and environment, asked Jaran if his firm or any of its clients might be seen as having a conflict of interest regarding aspects of the local study, including its outcome. Jaran said no, explaining that the potential issue already had been explored at Equity Environmental Engineering.

The air and water assessment study and other related studies will extend through 2011 and 2012.

During the business portion of the meeting, CAC members approved a request to the CDC and the Agency for Toxic Substances and Disease Registry for $25,000 in operational funding for both years.

Other studies are forthcoming. For example, Drexel University investigators will use a case control study to try and determine factors that may contribute to the PV cluster in the Tamaqua-Hazleton area by examining environmental and occupational histories of patients with PV and MPD-related disease and comparing them with those free of the diseases.

A University of Pittsburgh team will conduct a study that will compare PV rates in the Tamaqua-Hazleton area to those in four counties in the western Pennsylvania coal region to look for similarities and differences in the two areas that might provide clues to the causes of the disease.

Polycythemia vera advisory group announces contaminant study
Reported on Saturday, October 23, 2010

Polycythemia vera advisory group announces contaminant study

Tamaqua Mayor Chris Morrison, Chairman of the Tri-County Polycythemia Community Advisory Committee (CAC), announced Wednesday that Equity Environmental Engineering (EEE) has been chosen by the Agency for Toxic Substances and Disease Registry (ATSDR) and the Centers for Disease Control (CDC) to conduct a study of possible exposure of area residents to contaminants in air and drinking water.

“We are pleased that ATSDR and CDC have funded this study in response to public concerns about high cancer rates and the many sources of contamination in our area.,” said Morrison.

According to Morrison, EEE investigators will meet with members of the CAC and tour the area on Oct. 28.

“Thanks to the hard work of community members we now have a large number of studies to get to the bottom of the cancer cluster in our area,” Morrison said.

U.S Senator Arlen Specter obtained about $8 million in federal funds for the research programs. On Sept. 22, researchers and government officials were on hand to discuss the major studies now underway; studies include:

Ÿ An epidemiological study by Drexel University designed to determine what factors that PV/MPD patients have in common and what factors separate those with the illnesses and those without.

Ÿ A study by the University of Pittsburgh (School of Public Health) to obtain an accurate and updated account of the number/incidence of PV/MPD cases in the tri-county area.

Ÿ A second study by University of Pittsburg scientists to investigate the incidence of PV/MPD in a four-county area of coal country in southwestern Pennsylvania with similar geography and demographics, coal burning plants and ash disposal sites.

Ÿ Laboratory studies by Dr. Ronald Hoffman (a foremost expert on PV) to determine more on the genetic changes that precipitate the onset of JAK-2 mutations and PV disease. One study will subject blood cells to various contaminants that have been found in the tri-county area.

Ÿ An analysis of thousands of blood samples and data from U.S. residents obtained from the CDC’s NHANES program, one of the largest randomized collections of samples and associated data in existence. The analysis will be used to estimate the frequency of PV, JAK-2 across the country and look for possible correlations with factors such as work history, diet and contaminant levels in blood.

What is Polcythemia vera?

What is Polcythemia vera?

Reported on Thursday, September 23, 2010

Polycythemia vera (PV) is a blood disease in which the bone marrow makes too many red blood cells, causing a thickening of the blood.

PV usually takes years to develop. Most people are diagnosed with PV later in life, most often around age 60 or older. People with PV might experience headaches, tiredness and shortness of breath. They are also at risk for getting blood clots, which can lead to heart attacks and stroke.

At this time, there is no cure for PV. But treatment can control symptoms and avoid heart problems. Some people with PV do not need treatment but should see their doctor regularly to stay as healthy as possible and to catch problems early, according to information provided by the federal Agency for Toxic Substances and Disease Registry (ATSDR).

In 2008, the Pa. Department of Health and the ATSDR confirmed more PV cases than expected in parts of Schuylkill, Carbon and Luzerne counties.

The Department of Health and ATSDR are tracking patterns of PV and working with research partners in looking for trends and risk factors. In addition, the Center for Disease Control is working to improve reporting systems for PV.

2010.09.15 – Board provides info on rare blood cancer
Published: September 15, 2010

2010.09.15 – Board provides info on rare blood cancer

SPECIAL TO THE STANDARD-SPEAKER Joseph Murphy, an advisor to the Tri-County Polycythemia Vera Community Advisory Committee, talks about a public display board at Tamaqua Borough Hall was developed by the federal Agency for Toxic Substances and Disease Registry to provide accurate and easy-to-understand information about polycythemia vera.


The Tri-County Polycythemia Vera Community Advisory Committee is making an effort to educate the public about this rare but treatable form of blood cancer found at elevated levels in Luzerne, Schuylkill and Carbon counties.

The new health outreach board was recently unveiled at a news conference held in Tamaqua, Mayor Christian Morrison said.

“We all believe that we lost people in our area that did not even know they had polycythemia vera,” Morrison said.

A public display board at Tamaqua Borough Hall was developed by the federal Agency for Toxic Substances and Disease Registry at the request of the committee to provide accurate and easy-to-understand information about polycythemia vera, Morrison said.

The display board will be moved to other locations in the future, Morrison said.

The Tri-County Polycythemia Vera Community Advisory Committee will host a public meeting on Sept. 22 at 7 p.m. at the Tamaqua High School Auditorium, 500 Penn St., Tamaqua.

Morrison said area residents will be able to meet with research teams conducting studies to learn more about the many cases of polycythemia vera in the area and their possible causes.

“Data will be available to the public from the Pennsylvania Department of Health, Geisinger and researchers from Drexel University, the University of Pittsburgh, and Mount Sinai Hospital in New York,” Morrison said.

The Tamaqua mayor said they will have handbills available for the public at the Sept. 22 meeting.

The studies were made available through two grants totaling $8 million secured by U.S. Sen. Arlen Specter, Morrison said.

The committee passed a resolution honoring Specter at its June 30 meeting.

“Each of the agencies will have an overview on the studies taking place,” Morrison said.

He said a lot of the data will also point to a five-year review being conducted by the U.S. Environmental Protection Agency at the McAdoo Associates Superfund site in Kline Township and McAdoo.

The site once was linked to abnormally high cases of cancer but EPA officials say that there is no evidence of site-related cancers.


May 7, 2010

The search for answers in a rare cancer cluster will continue. $2.5 million was earmarked to further study the polycythemia vera cancer cluster in Carbon, Schuylkill, and Luzerne Counties. But, sources at the Centers for Disease Control say the agency was considering reprogramming that funding and not using it to study the rare blood cancer. Senator Arlen Specter made sure the important funding will stay where it belongs. Residents feel toxic dump sites are to blame for tainting groundwater and making people sick. Some of the money will be used to test groundwater and air samples for contamination.

PA connections of contractor under fire for covering up Lejeune contamination

By Sue Sturgis
Hometown Hazards
March 10, 2010

My Congressman, Rep. Brad Miller, is the lawmaker who’s been raising hell about shoddy work by ATSDR in general, and particularly about what happened at Camp Lejeune Marine Corps base in North Carolina, where cancer is widespread among former base residents.

Yesterday Miller’s committee requested documents from the Navy and a private contractor out of concerns that they knew about benzene contamination at Camp Lejeune but kept that information under wraps. Here’s a recent news story about that:

The private contractor is Baker Environmental, a subsidiary of the Michael Baker Corp. I decided to check out who exactly this Baker is. As it turns out, Baker Environmental holds the contract to provide general assistance to the PA DEP’s Superfund program. It manages the program, does investigation and remediation, and provides engineering studies and remedial designs:

Because of that, I do believe this ongoing Lejeune investigation will be worth watching for the folks back home in PA, and wanted to give you all a heads up.

Senior CDC Official Reassigned

Senior CDC Official Reassigned

by Joaquin Sapien, ProPublica – January 22, 2010 5:56 pm EST

Dr. Howard Frumkin, the embattled director of a little-known but important division of the Centers for Disease Control and Prevention, has been reassigned to a position with less authority, a smaller staff and a lower budget.

Frumkin had led the CDC’s Agency for Toxic Substances and Disease Registry (ATSDR) and the National Center for Environmental Health since 2005. For the past two years he had endured scathing criticism from Congress and the media for ATSDR’s poor handling of public health problems created by the formaldehyde-contaminated trailers that the government provided to Hurricane Katrina victims. The agency, which assesses public health risks posed by environmental hazards, also was criticized for understating the health risks of several other, less-publicized cases.

An internal CDC e-mail sent by Frumkin on Jan. 15 and obtained by ProPublica said he was leaving his position that day and would become a special assistant to the CDC’s director of Climate Change and Public Health. His old job will be temporarily filled by Henry Falk, who led ATSDR from 2003 to 2005.

In the e-mail, Frumkin praised his staff and described more than 20 ATSDR accomplishments during his tenure. They include strengthening the agency’s tobacco laboratory and creating the Climate Change and Public Health program.

A CDC spokesman said Frumkin’s transfer shouldn’t be considered a demotion but rather a change of function and responsibilities that the CDC’s director, Dr. Thomas Frieden, said would benefit both the agency and Dr. Frumkin, who is a recognized expert on climate change. But Frumkin’s authority has been sharply reduced, even though his salary won’t change. Previously, he oversaw two departments  with a combined budget of about $264 million and 746 full-time employees. Now he will be an assistant to the director of a new program that has a budget of about $7.5 million, five full-time employees and five contractors, two of whom are part time.

Through a CDC spokesman, Frumkin declined a request to be interviewed for this story.

In 2008, ProPublica reported [1] that Frumkin and others failed to take action after learning that ATSDR botched a study [2] on the trailers provided to Katrina victims. The Federal Emergency Management Agency used the study to assure trailer occupants that the formaldehyde levels weren’t high enough to harm them. ATSDR never corrected FEMA, even though Christopher De Rosa, who led ATSDR’s toxicology and environmental medicine division, repeatedly warned Frumkin that the report didn’t take into account the long-term health consequences of exposure to formaldehyde, like cancer risks.

Frumkin eventually reassigned De Rosa to the newly created position of assistant director for toxicology and risk analysis. De Rosa went from leading a staff of about 70 employees to having none. He has since left the agency and is starting a nonprofit that will consult with communities close to environmental hazards.

The involvement of Frumkin and ATSDR in the formaldehyde debacle was the focus of an April 2008 Congressional hearing held by a subcommittee of the House Science and Technology Committee. A report [3] by the subcommittee’s Democratic majority, released that October, concluded that the failure of ATSDR’s leadership “kept Hurricane Katrina and Rita families living in trailers with elevated levels of formaldehyde…for at least one year longer than necessary.”

About six months after the report came out, the same panel, the Subcommittee on Investigations and Oversight, held another hearing [4] that touched on other problems at ATSDR.

Before that hearing, the Democrats on the subcommittee released a report [5] that revealed other cases in which the agency relied on scientifically flawed data, causing other federal agencies to mislead communities about the dangers of their exposure to hazardous substances.

For example, an ATSDR report about water contamination at Camp Lejeune, a Marine Corps base in North Carolina, said the chemically tainted drinking water didn’t pose an increased cancer risk to residents there. The report was used to deny at least one veteran’s medical benefits for ailments that the veteran believed were related to the contamination.

A month after the subcommittee hearing, ATSDR rescinded [6] some of its findings, saying it didn’t adequately consider the presence of benzene, a carcinogen that it found in the water.

Eight months later, the agency said it would modify another report that was criticized at the hearing, about a bomb testing site in Vieques, Puerto Rico. For decades, the U.S. military used the site to test ammunition that contained depleted uranium and other toxins. In a 2003 report, ATSDR said that heavy metals and explosive compounds found on Vieques weren’t harmful to people living there. But Frumkin decided to take a fresh look at those findings because ATSDR hadn’t thoroughly investigated the site.

Subcommittee investigators acknowledged that Frumkin inherited many of the problems in the report from previous ATSDR directors — the original Vieques and Camp Lejeune reports were both done before Frumkin was named director in 2005. But the investigators said he was aware of the agency’s problems and did little to fix them unless he was under political pressure. A CDC spokesman said that Frumkin’s reassignment had nothing to do with the congressional inquiries.

“Americans should know when their government tells them that they have nothing to worry about from environmental exposure that they really have nothing to worry about,” Rep. Brad Miller, D-N.C.,  the subcommittee’s chairman, said in a statement to ProPublica regarding Frumkin’s reassignment. “The nation needs ATSDR to do honest, scientifically rigorous work. There are many capable professionals at ATSDR who are committed to doing just that.”

Write to Joaquin Sapien at [7].