PV update at meeting slated Wed.

http://standardspeaker.com/news/pv-update-at-meeting-slated-wed-1.1019510
Published: September 19, 2010

PV update at meeting slated Wed.

The Tri-County Polycythemia Vera Community Advisory Committee will hold a public meeting at 7 p.m. Wednesday in the auditorium of Tamaqua Area High School, 500 Penn St.

The meeting will provide information on a number of ongoing health-oriented studies aimed at determining the extent of polycythemia vera and related myelo-proliferative diseases and its possible link to environmental conditions in the area.

Dr. Vince Seaman of the U.S. Agency for Toxic Substances and Disease Registry will give a summary of the research and a number of the research leaders will be present to answer questions on each specific study.

Drexel University investigators will attempt to determine factors that may contribute to the polycythemia vera cluster in the Tamaqua-Hazleton area by examining environmental and occupational histories of patients with the rare form of cancer and comparing them with those free of the disease.

A team from the University of Pittsburgh team is comparing polycythemia vera rates in the area to those in four counties in western Pennsylvania coal country to look for similarities and differences.

Tamaqua Mayor Chris Morrison will chair the meeting and explain the role of the advisory committee. He said it is important to get as much information as possible.

“We have a serious health threat in our area and one that may affect future generations,” Morrison said.

Cancer-cluster research data will be explained Polycythemia vera public meeting set for Tamaqua on Sept. 22

http://www.tnonline.com/node/135107
Reported on Saturday, September 18, 2010

Cancer-cluster research data will be explained Polycythemia vera public meeting set for Tamaqua on Sept. 22

By JOE PLASKO jplasko@tnonline.com

The Tri-County Polycythemia Vera Community Advisory Committee (Tri-County PV CAC) will hold a public meeting at 7 p.m. on Sept. 22 at the Tamaqua Area School District Auditorium on Stadium Hill, 500 Penn Street.

The scope of the meeting is to provide the public with information on a number of ongoing health-oriented studies aimed at determining the extent of polycythemia vera and related myeloproliferative diseases (MPDs) and their possible link to environmental conditions in the area.

Polycythemia vera is a rare blood cancer in which the body produced too many red blood cells. A cluster of polycythyemia vera has been detected in the tri-county area of Schuylkill, Carbon and Luzerne, concentrated around Ben Titus Road in Still Creek.

Research has discovered a genetic mutation, known commonly as JAK2, that has been identified in polycythemia vera patients.

At Wednesday’s meeting, Dr. Vince Seaman of the U.S. Agency for Toxic Substances and Disease Registry (ATSDR) will give an overall summary of the research and a number of the research leaders will be present to answer questions on their specific studies.

Drexel University investigators will attempt to determine factors that may contribute to the PV cluster in the Tamaqua-Hazelton area by examining environmental and occupational histories (and other factors) of patients with PV and MPD related disease and comparing them with those free of these diseases.

The University of Pittsburgh team is conducting a study that will compare PV rates in the Tamaqua-Hazelton area to those in four western Pa. counties to look for similarities and differences in the two  coal-producing areas that can provide clues to the causes of the disease.

Tamaqua Mayor Christian Morrison will chair the meeting and explain the role of the CAC community organization.

“Several of these teams will soon be conducting interviews in our area, so it is critical that we get as much information as possible,” said Morrison in a news release. “We have a serious health threat in our area and one that may affect future generations. We need to find out why we have a cancer cluster and eliminate the cause. In the meantime, we need to take good care of the patients and their families.”

2010.09.15 – Board provides info on rare blood cancer

http://standardspeaker.com/news/board-provides-info-on-rare-blood-cancer-1.1012538
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.

By TOM RAGAN

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.

tragan@standardspeaker.com

Polycythemia vera (From Wikipedia, the free encyclopedia)

Polycythemia vera is a blood disorder in which the bone marrow makes too many red blood cells. Polycythemia vera may also result in the overproduction of white blood cells and platelets. Most of the health concerns associated with polycythemia vera are caused by a blood-thickening effect that results from an overproduction of red blood cells.

Contents

1 Epidemiology
2 Symptoms
3 Diagnosis
4 Treatment
5 See also
6 References
7 External links

Can people can be genetically susceptible to P. vera?

Myeloproliferative neoplasms – personal stories | Leukaemia and Lymphoma Research.

People can be genetically susceptible to the series of rare blood cancers

Professor Nick Cross and his team at the University of Southampton have shown that people can be genetically susceptible to the series of rare blood cancers known as myeloproliferative neoplasms (MPNs). His team have identified a particular area of the patient’s DNA which is prone to developing mutations.

Professor Cross discovered that a particular region of chromosome 9 that carries the JAK2 gene is predisposed to acquiring mutations, but only in individuals with a particular genetic makeup. It is likely that this finding will lead to a much better understanding of how the JAK2 gene mutations happen and why they lead to an increased risk of someone developing an MPN.

The team at the laboratory, which is part of the University of Southampton, found that people carrying this mutation-prone region of DNA on chromosome 9, which includes the JAK2 gene, have triple the risk of developing a MPN.

The link is especially strong in polycythaemia vera (PV), one of the main three MPNs. Professor Cross says:  “Our research provides strong evidence that at least half of the cases of PV diagnosed each year are linked to an inherited genetic variant on chromosome 9. Whilst this risk is still very small it nonetheless confirms that individual susceptibility is linked to genetic inheritance. “

PA Department of Health Announces Blood Disorder Study in Southwestern Pennsylvania

http://www.prnewswire.com/news-releases/department-of-health-announces-blood-disorder-study-in-southwestern-pennsylvania-97667524.html

Department of Health Announces Blood Disorder Study in Southwestern Pennsylvania

Residents with Polycythemia Vera in Bedford, Blair, Cambria and Somerset Counties Encouraged to Participate

HARRISBURG, Pa., July 2 /PRNewswire-USNewswire/ — The Pennsylvania Department of Health today announced a new, federally-funded study on the blood disorder Polycythemia vera, or PV, in Bedford, Blair, Cambria and Somerset counties.

Residents of these counties who were diagnosed with PV between 2001 and 2008 are eligible to participate in the study and will be compensated.

PV is a blood disorder that causes bone marrow to produce too many red blood cells, resulting in what is commonly referred to as “thick blood.”  People with PV can sometimes be at increased risk for blood clots, heart attack or stroke. However, there are other disorders that also result in an excess of red blood cells. The other disorders are referred to as secondary polycythemia. It may be difficult to distinguish PV from the other disorders.

The purpose of the new study is to evaluate the information the department receives from the Pennsylvania Cancer Registry on people who have been diagnosed with PV. Persons asked to take part in the study are those with PV reported to the state cancer registry as well as those identified by local physician offices.

A 2008 study of PV in Carbon, Luzerne and Schuylkill counties in northeast Pennsylvania found a greater number of PV cases than would ordinarily be expected in the three-county area. However, the investigation also showed that some of the cases reported to the state cancer registry as PV were inaccurate, and some cases of PV had never been reported at all. This problem made it difficult to accurately determine the prevalence of PV in the area. It is important to know whether similar PV diagnosis problems exist in other parts of the state.

The four-county area in the southwestern part of the state was chosen because it shares many similar features with the tri-county area of northeast Pennsylvania; not because there appears to be an excess of PV. The similarities include population size, geography and environment.

To help diagnose PV, patients who agree to participate will be interviewed about their health, medical history and environmental exposures. They will also have a blood sample collected to look for the presence of a genetic marker known as JAK2 in their blood cells. More than 90 percent of patients confirmed with PV have the JAK2 genetic marker in their blood cells. Results of the JAK2 test will be available to the patient and their doctor, but will otherwise be kept confidential.

The Department of Health is working with the University of Pittsburgh Graduate School of Public Health to carry out the study. All PV patients in the four-county area who are listed in the state cancer registry and those identified through area physicians will be contacted by the University of Pittsburgh and asked to take part in the study. A nurse representative from the University of Pittsburgh will visit the participant’s home to administer the survey and collect a blood sample. Knowing the JAK2 marker is present may help a doctor to more carefully monitor a patient’s blood counts.

For more information on PV or the 2008 study of the northeast Pennsylvania tri-county area, visit http://www.atsdr.cdc.gov/sites/polycythemia_vera/index.html.

To learn about the University of Pittsburgh’s upcoming study on PV or to find out about participating in the study, please contact Dr. Paula A. Balogh, FNP, of the University of Pittsburgh Graduate School of Public Health at 412-623-5901 or e-mail pvstudy@pitt.edu.

Media contact: Holli Senior, 717-787-1783

SOURCE Pennsylvania Department of Health

CANCER CLUSTER MONEY IS SAFE

http://www.brctv13.com/local_news.shtml

CANCER CLUSTER MONEY IS SAFE
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:
http://www.newsobserver.com/2010/03/09/379463/congressional-investigators-seek.html

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:

http://www.mbakercorp.com/index.php?option=com_content&task=view&id=1684&Itemid=278

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

http://www.propublica.org/feature/senior-cdc-official-reassigned-howard-frumkin

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 joaquin.sapien@propublica.org [7].

Federal Agency to Discuss Polycythemia Vera Investigation Findings at Public Meeting on August 25

Agency for Toxic Substances and Disease Registry (ATSDR)
Protecting America’s Health from Toxic Exposure

Media inquiries: 770-488-0700 or atsdrmediainquiries@cdc.gov
ATSDR Web site: www.atsdr.cdc.gov

Note to correspondents: ATSDR staff will be available for a press availability session to discuss the updates of the investigation from 5:30 until 6:00p.m. on Monday, August 25 at Genetti’s Best Western Hotel, located at 1441 N. Church St. in Hazleton. No appointment is needed.
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