ATSDR/CDC Northeast PA Polycythemia Vera (PV) Investigation Projects Update

Background

In 2004, using state cancer registry records, the Pennsylvania Department of Health (PADOH) found a PV cluster in northeast Pennsylvania. PV is part of a disease group called myeloproliferative neoplasms (MPN), which is a group of slow-growing blood cancers where the bone marrow makes too many red blood cells, white blood cells, or platelets.

In 2006, ATSDR was asked to help study PV patterns in the area. From 2007-2008, ATSDR reviewed medical records, conducted genetic testing, and confirmed this PV cluster.

In 2009, Congress funded ATSDR to continue this investigation. ATSDR is overseeing 18 projects with PADOH, the Pennsylvania Department of Environmental Protection, and various universities and private organizations. These projects are based on recommendations from an expert panel. The panel identified four areas for investigation; epidemiology, genetics, toxicology, and environmental studies.

As of October 1, 2013, all of the contracts for the 18 projects have ended.  The last to end was the tissue bank contract, which closed for recruitment of new tissue donations from the PA tri-county study area in May 2014.  At this time, no new samples will be added from the tri-county study area, but the geographically identified (but de-identified in terms of personal information) donations from the tri-county study area will continue to be available for researchers to access via this national tissue bank established at the Myleloproliferative Disease Research Consortium (MPD-RC).  You can continue to follow the work of the overall MPD-Research Consortium on their website at: http://www.mpd-rc.org/home.php.

Status

The graphic with this email provides this summary as of August 2014.  I’ve attached this graphic both as a “snapshot” in the body of this email, as well as a pdf attachment.  Projects highlighted in “green” in the attached graphic have work complete and a final product available (if applicable).  Projects highlighted in “yellow” have final products in progress and undergoing clearance.  Projects highlighted in “red” have final products that are anticipated but not yet started.

As of August 5, 2014, work is complete and a final product is available (if applicable) for projects.  We are happy to announce that one new project (#16/17, PADEP’s environmental testing) moved from yellow to green since my May update; we now have a factsheet and final ATSDR health consultation report evaluating an initial set of radiological environmental sampling results from the study area.  At the request of ATSDR, PADEP collected and analyzed environmental samples within the tri-county area and ATSDR evaluated the possible health effects of exposure to the radiological elements in the samples.  Environmental samples from the cluster area were collected as a component of the overall research investigation into the PV disease cluster:

  • Indoor air was analyzed for radon.
  • Soil, sediment and water samples were analyzed for metals, organic compounds, and radioactive substances.

This ATSDR public health report focuses on an initial set of the radiological environmental sampling information.  Additional reports evaluating other environmental and health information from the PV investigation will be released at a later date.

The ATSDR report found:

  • Some houses in the study area had elevated levels of radon gas in indoor air. Radon gas was also found in the private well water of some homes.
  • Soils from the study area had slightly elevated levels of radium.
  • Without additional information, ATSDR cannot determine if the cluster of cases of PV disease in the tri-county area is related to the radiological exposures observed in the environmental sampling information.

 

In this report, ATSDR recommends:

  • All residents in the study area should have their homes tested for radon gas. Houses with elevated radon levels should be retested. If a home is retested and elevated radon levels continue, residents should contact the state of Pennsylvania radon program hotline at 1-800-237-2366 and request additional information on how to reduce the radon levels in the home.
  • People in homes with high levels of radon in their drinking water should contact the PADEP Radon Program for assistance. Home water supplies can be treated to reduce radon levels.
  • ATSDR recommends that in those areas where radium in soils seems to be elevated, additional sampling may be helpful to further understand this exposure pathway. ATSDR will discuss the potential for a future collaboration with the U.S. Geological Survey to further evaluate levels of radiological contaminants in environmental media in the study area.

 

These documents are available at:

http://www.atsdr.cdc.gov/HAC/pha/PolycythemiaVera/Polycythemia%20Vera%20Investigation%20in%20PA_HC_07-22-2014%20FINAL.pdf

http://www.atsdr.cdc.gov/HAC/pha/PolycythemiaVera/PV%20(Still%20Creek)%20Tri%20County%20-%20FINAL%20Fact%20Sheet%20-%20Review%20of%20Radiological.pdf

Final products for another 9 projects are still in progress and remain coded as yellow.  Final products for 2projects are anticipated but not yet started and remain coded as red.

For more information:

Visit ATSDR’s web page on PV: http://www.atsdr.cdc.gov/sites/polycythemia_vera/index.html

Call ATSDR’s toll-free PV information line: 866-448-0242 or email jcx0@cdc, which will connect you to Dr. Elizabeth Irvin-Barnwell, ATSDR Division of Toxicology and Human Health Sciences.

Contact Lora Siegmann Werner, ATSDR Region 3, by phone at 215-814-3141 or by email at lkw9@cdc.gov.

 

Other Resources

1. Radiological Testing and Screening - http://www.water-research.net/index.php/radiological-contaminants

2. Radiological – Testing Parameters - http://www.water-research.net/watertest/radiologicalwatertesting.pdf

3. Radon in Water

 

Pennsylvania Cancer Clusters – Update

Background

In 2004, using state cancer registry records, the Pennsylvania Department of Health (PADOH) found a PV cluster in northeast Pennsylvania. PV is part of a disease group called myeloproliferative neoplasms (MPN), which is a group of slow-growing blood cancers where the bone marrow makes too many red blood cells, white blood cells, or platelets.

In 2006, ATSDR was asked to help study PV patterns in the area. From 2007-2008, ATSDR reviewed medical records, conducted genetic testing, and confirmed this PV cluster.

In 2009, Congress funded ATSDR to continue this investigation. ATSDR is overseeing 18 projects with PADOH, the Pennsylvania Department of Environmental Protection, and various universities and private organizations. These projects are based on recommendations from an expert panel. The panel identified four areas for investigation; epidemiology, genetics, toxicology, and environmental studies.

Status

As of October 1, 2013, all but one of the contracts for the 18 projects have ended.  The one exception is the tissue bank, which will remain open for recruitment of new tissue donations from the PA tri-county study area through May 2014.  After May 2014, no new samples will be added from the tri-county study area, but the geographically identified (but de-identified in terms of personal information) donations from the tri-county study area will continue to be available for researchers to access via this national tissue bank established at the Myleloproliferative Disease Research Consortium (MPD-RC).  You can continue to follow the work of the overall MPD-Research Consortium on their website at: http://www.mpd-rc.org/home.php.

The graphic with this email provides this summary as of April 2014.  I’ve attached this graphic both as a “snapshot” in the body of this email, as well as a pdf attachment.  Projects highlighted in “green” in the attached graphic have work complete and a final product available (if applicable).  Projects highlighted in “yellow” have final products in progress and undergoing clearance.  Projects highlighted in “red” have final products that are anticipated but not yet started.

As of May 8, 2014, work is complete and a final product is available (if applicable) for projects.  We are happy to announce that one new project (#3) moved from yellow to green since my October update; we now have a factsheet and final publication analyzing the accuracy of PV diagnoses using Geisinger Medical Center’s electronic medical records.  This is an important study that highlights that inconsistencies in PV diagnoses and record keeping remain despite more widespread use of the JAK2 genetic marker.   These documents are available at:

http://www.atsdr.cdc.gov/sites/polycythemia_vera/docs/fact_sheet_for_manuscript_determination_of_accuracy_of_pv_diagnoses_and_JAK2V617F_test_usage.pdf

http://www.atsdr.cdc.gov/sites/polycythemia_vera/docs/manuscript_determination_of_accuracy_of_pv_diagnoses_and_use_of_the_JAK2V617F_test_in_the_diagnostic_scheme.pdf

Note, one of the projects (#1) that was green in my October update moved to yellow since we are now expecting a journal publication for that effort when we were not before.  Final products for another 11 projects are in progress; this is an increase in two projects moving from red to yellow since my October update.  Final products for 2 projects are anticipated but not yet started (this is a decrease from 4 in this red stage in my October update).

I want to take a personal moment to acknowledge the work of our colleague Dr. Paul Roda.  He was the primary author for the work in project #3 that is now available for your review, as well as for projects #1 and #2.  Dr. Roda passed away suddenly in November 2013, and I really miss working with him.  I am so glad to share some of the results of his work with you.  This work remains a testimony to his dedication to this investigation and his profession of hematology.

For more information:

Visit ATSDR’s web page on PV: http://www.atsdr.cdc.gov/sites/polycythemia_vera/index.html

Call ATSDR’s toll-free PV information line: 866-448-0242 or email jcx0@cdc, which will connect you to Dr. Elizabeth Irvin-Barnwell, ATSDR Division of Toxicology and Human Health Sciences.

Contact Lora Siegmann Werner, ATSDR Region 3, by phone at 215-814-3141 or by email at lkw9@cdc.gov.

Volunteer

We seek new people at all skill levels for a variety of programs. One thing that everyone can do is attend meetings to share ideas on improving CCGG, enabling us to better understand and address the concerns of well owners.  We look for people that can forward solid articles, help coordinate local education efforts, and more.  Become part of the Keystone Clean Water Team!.

Everything we do began with an idea.

We realize your time is precious and the world is hectic. CCGG’s volunteers do only what they’re comfortable with. It can be a little or a lot.  Get YOUR WATER Tested – Discounted Screening Tests !

For more information, please go to CCGG’s About Page or contact us.

Carbon County Groundwater Guardians is a 501(c)(3) IRS approved nonprofit, volunteer organization and your donation is tax deductible to the extent allowed by law.  Waiting on Official Name change to the Keystone Clean Water Team by the IRS.  Unsolicited donations are appreciated.

Help the Organization and Get Your Water Tested or Order the Private Well Owner Guide (proceeds benefit This Organization).

 

More:

Professional Education and Training (Continuing  Education)
Career Training and Heatlh Care 
Information on Groundwater Well Water Quality (Iron, Arsenic, Manganese, and More)

Carbon, Luzerne, and Schuylkill Agency for Toxic Substances and Disease Registry (ATSDR)

Updates about the Agency for Toxic Substances and Disease Registry (ATSDR)/Centers for Disease Control and Prevention (CDC) work to study the occurrence of polycythemia vera (PV) in three northeastern Pennsylvania counties (Carbon, Luzerne, and Schuylkill), or you are one of the researchers involved in this work.  When updates are available, my goal is to share this kind of email update with you periodically.  If you are not interested in these updates from me, please just let me know and I will remove you from our contact list.  Thank you!

Background

In 2004, using state cancer registry records, the Pennsylvania Department of Health (PADOH) found a PV cluster in northeast Pennsylvania. PV is part of a disease group called myeloproliferative neoplasms (MPN), which is a group of slow-growing blood cancers where the bone marrow makes too many red blood cells, white blood cells, or platelets.

In 2006, ATSDR was asked to help study PV patterns in the area. From 2007-2008, ATSDR reviewed medical records, conducted genetic testing, and confirmed this PV cluster.

In 2009, Congress funded ATSDR to continue this investigation. ATSDR is overseeing 18 projects with PADOH, the Pennsylvania Department of Environmental Protection, and various universities and private organizations. These projects are based on recommendations from an expert panel. The panel identified four areas for investigation; epidemiology, genetics, toxicology, and environmental studies.

Status

As of October 1, 2013, all but one of the contracts for the 18 projects have ended.  The one exception is the tissue bank, which will remain open through May 2014.

In meetings with community members this summer, ATSDR was asked to share a summary of the status of final products anticipated from the 18 projects of the overall PV investigation in northeast Pennsylvania.  The graphic with this email provides this summary as of October 2013.  I’ve attached this graphic as a  PV Research Projects Status Graphic October 2013 (pdf).  Projects highlighted in “green” in the attached graphic have work complete and a final product available (if applicable).  Projects highlighted in “yellow” have final products in progress and undergoing clearance.  Projects highlighted in “red” have final products that are anticipated but not yet started.

As of October 30, 2013, work is complete and a final product is available (if applicable) for 5 projects.  Final products for another 9 projects are in progress.  Final products for 4 projects are anticipated but not yet started.

For more information:

Visit ATSDR’s web page on PV: http://www.atsdr.cdc.gov/sites/polycythemia_vera/index.html

Call ATSDR’s toll-free PV information line: 866-448-0242 or email jcx0@cdc, which will connect you to Dr. Elizabeth Irvin-Barnwell, ATSDR Division of Toxicology and Human Health Sciences.

Contact Lora Siegmann Werner, ATSDR Region 3, by phone at 215-814-3141 or by email at lkw9@cdc.gov.

Please let me know if you have any questions or would like to discuss this information further, or you have suggestions on how I might improve this update in the future.  I know this is a detailed graphic, if you would like me to mail you a hard copy of a larger version I would be happy to do that, just let me know your mailing address.

Heavy Metal Poisioning Metals in Your Environment

It May NOT Be the Water  (This is not our work, but great information- see credit).

“Heavy metal poisoning is caused by metals that accumulate within the body’s fat cells, central nervous system, bones, brain, glands, and/or hair to produce negative health effects. Such metals are unsafe at any level in the body, and their presence in the body is not normal.

The most common heavy metal poisons are lead, cadmium, mercury, and nickel. Aluminum, while not a heavy metal, can also cause toxicity and poor health. They are by no means the only toxic metals that can cause poor health.

Do You Have a Problem
Symptoms of heavy metal poisoning can vary greatly, and depending on the type of metal toxicity, the age of the affected person (children are more susceptible to heavy metal poisoning), the length of the exposure, and the presence or absence of protective minerals and other nutrients that inhibit the absorption, binding, and effects of the toxic metals. For example, calcium deficiency exacerbates lead toxicity, while normal levels of calcium in the body help to protect against lead toxicity.

One common side effect of these metals is a metallic taste in the mouth. What follows are other common side effects for each of these toxic metals:

Aluminum: Aluminum toxicity may be associated with headaches, cognitive problems, learning disabilities, poor bone density (osteoporosis), ringing in the ears, gastrointestinal disorders, colic, hyperactivity in children, and ataxia (an abnormal walking pattern). Its possible role in poor memory or Alzheimer’s disease is speculative at this time but also worth noting.

Cadmium: Cadmium toxicity can cause fatigue, irritability, headaches, high blood pressure, enlargement of the prostate gland, increased risk for cancer, hair loss, learning disabilities, kidney and liver disorders, skin disorders, painful joints, and decreased immune functioning.

Lead: Lead toxicity can cause poor bone growth and development, learning disabilities, fatigue, poor task performance, irritability, anxiety, high blood pressure, weight loss, increased susceptibility to infection, ringing in the ears, decreased cognitive functioning and concentration and spelling skills, headaches, gastrointestinal problems, constipation, muscle and joint pain, tremors, and overall general decreased immune functioning.

Mercury: Mercury toxicity can cause cognitive and memory problems, irritability, fatigue, insomnia, gastrointestinal disorders, decreased immune response, irrational behavior, numbness, tingling, muscular weakness, impaired vision and hearing, allergic conditions, asthma, and multiple sclerosis.

Nickel: Nickel toxicity may be associated with fatigue, respiratory illnesses, heart conditions, skin rashes, psoriasis, fatigue, and headaches.

Exposure

Exposure to toxic metals is quite common, given the degree of environmental toxins that now affect our planet. What follows are some of the most likely sources of exposure for each of the most common toxic metals:

Aluminum: Aluminum-containing antacids, many over-the-counter drugs and douches that contain aluminum, aluminum cookware and aluminum foil (especially when preparing and storing acidic foods), antiperspirants, most commercial baking powders, and contaminated water.

Cadmium: Possible contamination from cigarette and pipe smoke, instant coffee and tea, nickel-cadmium batteries, contaminated water, some soft drinks, refined grains, fungicides, pesticides, and some plastics.

Lead: Cigarette smoke, eating paint that is lead-based (in children, especially in poor housing or older housing), eating and cooking foods in ceramic glazes that are lead-based, leaded gasoline, eating liver that may be contaminated with lead, living in the inner city that may have elevated lead air levels, contaminated water, canned foods (especially fruit in which the lead-soldered cans may leach into the food), certain bone meal supplements, and insecticides.

Mercury: Possible contamination from mercury-based dental amalgam fillings, laxatives that contain calomel, some hemorrhoid suppositories, inks used by some printers and tattooists, some paints, some cosmetics, and many products that may contain small amounts of mercury such as fabric softeners, wood preservatives, solvents, drugs, and some plastics and contaminated fish.

Nickel: Many pieces of jewelry contain nickel and wearing them next to skin creates some absorption. Some metal cooking utensils have nickel added to them, even stainless steel, which is mostly a problem when cooking acidic foods. Cigarette smoke, hydrogenated fats (as nickel is the catalyst for the reaction to create them), some refined foods, and fertilizers contain nickel.

Note: Vaccinations and common dental amalgam fillings are two primary causes of heavy metal poisoning from mercury, as mercury is contained in many vaccines and well as in silver amalgams.

Caution: Heavy metal poisoning is a serious health problem and should not be ignored. To determine whether you are affected by this problem, consult with a holistic practitioner with experience in screening for these poisons and then work with him or her to effectively detoxify your body.”

It may be your drinking water - So get it tested and you should learn about drinking water quality. You are free to choose any lab you want and any testing options you want. If any result is above the Maximum Contaminate Level (MCL) or you just don’t understand the results, you can receive specific advice and recommendations if you send a copy of the tests to Mr. Oram at 15 Hillcrest Drive, Dallas, PA 18612.   Also, you should order the new booklet for Private Well Owners In PA – proceeds benefit our non-profit organization.

Volunteer
We seek new people at all skill levels for a variety of programs. One thing that everyone can do is attend meetings to share ideas on improving CCGG, enabling us to better understand and address the concerns of well owners.

Everything we do began with an idea.

We realize your time is precious and the world is hectic. CCGG’s volunteers do only what they’re comfortable with. It can be a little or a lot.

For more information, please go to CCGG’s About Page or contact us.

Carbon County Groundwater Guardians is a 501(c)(3) IRS approved nonprofit, volunteer organization and your donation is tax deductible to the extent allowed by law.

Source – http://www.naturalhomecures.com/member/heavymetalpoisoning.html

Blood disease: No answer

www.tnonline.com/2012/sep/21/blood-disease-no-answer
Friday, September 21, 2012
By DONALD R. SERFASS dserfass@tnonline.com

DONALD R. SERFASS/TIMES NEWS A portion of the crowd at the Tamaqua Public Library on Thursday listens to an update on the status of a rare blood disease found in the local area in 2004.

A government agency provided a status update Thursday on research into a rare blood disease found in our area.

But the update left locals frustrated.

Joe Murphy, Hometown, voiced exasperation due to the slow pace of progress. Murphy represents the Citizens Advisory Committee and said he and his group would like to see improved flow of information and a more open approach.

“After six years, all I can say is where’s the beef,” said Murphy at the conclusion of an informal update provided by the Agency for Toxic Substances and Disease Registry (ATSDR).

The session drew over 50 concerned residents to the Tamaqua Public Library, where Lora Siegmann Werner and Dr. Elizabeth Irvin-Barnwell, both of the ATSDR, were on hand to respond to public questions. Also available were officials from the Pennsylvania Department of Health, the Department of Environmental Protection and several project partners.

The update included progress reports on 18 projects funded through $7.9M in government grants aimed at getting to the bottom of the cause of clusters of a disease that makes too many blood cells. The condition, polycythemia vera (PV), has been found at an alarming rate in Schuylkill, Carbon and Luzerne counties.

Among the new information provided by Irvin-Barnwell:

  • 77 participants have been enrolled in an epidemiologic study through the University of Pittsburgh. The study compares the pattern of PV occurrences in the commonwealth.
  • More accurate physician reporting of PV cases. This step is complete and the cases are undergoing internal quality control and data analysis.
  • Physician education has been completed with regard to diagnosis, reporting and treating of PV cases.
  • The Tri-County area case study is under way and 55 people with one of a number of slow-moving blood cancers have been recruited along with 473 people without the condition. Medical records are being examined for accuracy.
  • A genetic study is under way with a review of blood samples from 39 volunteers to see if patients in the cluster area are genetically prone to develop PV. Gene profiling also is under way.
  • Other studies under way include detection of a JAK2 mutation, recruitment for a tissue bank, and toxicology assay to evaluate whether 18 environmental contaminants can cause DNA damage.
  • An air and water sampling plan has been finalized and samples are being collected. Air modeling is complete.
  • Creation of a database for federal, state and other data relating to possible human exposures to contaminants from hazardous waste sites, industries, or businesses that release toxic substances has been completed. The data warehouse contains 100,000 samples and 2.5 million records for 2,700 substances.
  • Environmental testing near the McAdoo Superfund site, three waste coal burning plants, and residential sampling have been collected and analyzed. The ATSDR is evaluating results.
  • Murphy expressed concern that funding for the Citizens Advisory Committee was curtailed in January, 2010, and the ATSDR’s chief investigator, Dr. Vince Seaman, left for Nigeria in 2010 on a separate endeavor and is not due back until next year.

 

“Citizens have had a role in this … but we haven’t had a lot of money,” Joe Murphy, Hometown, addressing the public forum on polycythemia vera held at the Tamaqua Public Library. Funding for the citizens advisory group was cut in 2010.

Those setbacks, among others, have dealt a blow to local initiatives, said Murphy.

He is hoping the Betty Kester Alliance for a Healthy Future can step in to pick up the slack.

“Our goal is to continue to explore,” said Murphy.

“We’ll continue to have more of these updates,” says Dr. Irvin-Barnwell.

Kester and her husband, Lester, were Still Creek residents. Both developed PV. They are now deceased.

There have been 2,099 cases of PV reported in Pennsylvania. Of those, 227, or 10.8 percent, are found in Schuylkill, Carbon and Luzerne counties.

Researchers making new push in cancer cluster search

www.mcall.com/news/local/mc-tamaqua-cancer-cluster-20120430,0,6418002.story

By Andrew McGill, Of The Morning Call
11:26 p.m. EDT, April 30, 2012

After a long year, Pennsylvania’s coal country still knows only three things for sure.

People are getting cancer in the region, rare cancer. They’re dying. And no one can say why.

In a Centers for Disease Control investigation that has already stretched seven years and is likely to last several more, researchers are returning to Carbon, Luzerne and Schuylkill counties in force next week, setting up shop in hospitals to interview the sick and collect data.

Their question is the same as last year’s, and the year before that, and the year before that: Exactly how many people have the blood-thickening cancer that, while supposedly rare, seems all too common in the three counties?

“We’re really hoping to get one last wave of interviews and consents here,” said Jeanine Buchanich, a researcher at the University of Pittsburgh working with the CDC. “As it draws to a close it’s growing more and more important that people get back to us.”

Polycythemia vera puts the body’s blood-producing cells into overdrive, clogging arteries with up to five times as many red blood cells as normal. Itching, headaches and fatigue are the milder symptoms — if left untreated, the cancer can form fatal blood clots.

The most popular treatment tends to the medieval: bloodletting, which goes by “phlebotomy” these days and has been shown to reduce congestion in arteries. But a fancier name doesn’t make the process any more pleasant, and patients need treatment as often as once a month.

Nationwide, researchers think only one in 100,000 people have the disease. Scientists say that percentage is much higher in coal country, and the CDC has officially labeled the area a cancer cluster since 2005, a rare designation from a cautious agency.

More than $8 million has been spent to find out what’s making people sick. Two universities — the University of Pittsburgh and Drexel University — are conducting studies. A pair of hospitals are running their own tests.

It hasn’t been easy going.

Of the 340 potential Polycythemia vera patients Pitt scientists have contacted, only 80 have agreed to hand over their medical records. Even the promise of $50 gift cards couldn’t persuade the 30 people who refused to participate, or the hundreds more who haven’t responded.

Buchanich hopes her full-court press for more participants May 8-10 will change a few minds, but it is looking likely the study will end with far fewer subjects than she had hoped.

“We’re hoping to get that number as high as we can before we have to close the study,” Buchanich said. “We’ll be kind of dependent on how this goes.”

Then there’s the local community, which has watched its seat at the table shrink as the investigation continues. Funding for a liaison group linking research scientists and residents ended last year, and volunteers are still months away from securing the nonprofit status that would allow them to raise money.

In the meantime, many residents have doubts about the state Department of Environmental Protection’s investigation into environmental factors. Pennsylvania’s coal country has no lack of those, with toxic dumps from a long industrial history still festering in hills and crannies. Every resident has a theory for which spill or leak made their neighbors sick.

But a 28-point list of concerns to the CDC — why aren’t investigators sampling air inside homes? Will coal dust be considered as a possible cause? — was largely dismissed by the agency, with officials siding with their hired contractor.

Local activists say the lack of funding means they won’t be able to weigh in on study methodology before tests are conducted. As of late, federal officials haven’t even told them what’s going on, they say.

It was the residents who first brought to light the fact that their friends were dying, said Joe Murphy, coordinator of the Community Action Committee, a coal region group.

“And now we’re being told, ‘Thanks, see you later,’” he said. “We’re tossed to the side.”

andrew.mcgill@mcall.com

610-820-6533

Copyright © 2012, The Morning Call

Rare blood disease mix-up?

http://www.tnonline.com/2011/aug/19/rare-blood-disease-mix

Friday, August 19, 2011
By DONALD R. SERFASS dserfass@tnonline.com

DONALD R. SERFASS/TIMES NEWS "Do the hemochromatosis people really have polycythemia vera," asks Robert Gadinski at Thursday's public forum on a rare blood disease in our area. The session took place at the Carbon County Emergency Management Center, Nesquehoning.

Is it possible that some folks diagnosed with a blood disease involving a build-up of iron might actually be suffering from a rarer blood disease found in unusual clusters in Carbon, Schuylkill and Luzerne counties?

The condition of iron build up in the blood is called hemochromatosis and it can look like polycythemia vera, the disease currently being investigated in the local area.

At a public forum held Thursday at the Carbon County Emergency Management Center, 1264 Emergency Lane, Nesquehoning, a member of the Tri-County Polycythemia Vera Community Action Committee (CAC) pointed out that symptoms of the two blood diseases are very similar. Robert Gadinski, Ashland, a Schuylkill County hydrogeologist and former employee of the state Department of Environmental Protection, said the issue needs to be studied, especially in looking for the prevalence of a JAK2 genetic mutation found in those with polycythemia vera.

“Do the hemochromatosis people really have polycythemia vera,” asked Gadinski. “Should the JAK2 testing be extended to people diagnosed with hemochromatosis? There are similarities in the symptoms and in the illness itself.”

Hemochromatosis is an inherited disease in which too much iron builds up in the body. It is one of the most common genetic diseases in the United States. The rarer polycythemia vera is not inherited, but is acquired, although the cause is not known.

Representatives of the study panel agreed to look into Gadinski’s concerns.

Last night’s forum, led by CAC Chairman Joe Murphy, Hometown, included a presentation by a team from the University of Pittsburgh coordinated by Jeanine Buchanich. The forum came on the heels of several days of local research by the university team. The session was quickly organized and had limited advance publicity or media notification by the university.

The university is working with the Pa. Department of Health to do an expansion of the original PV study, using data from the Pennsylvania Cancer Registry. Buchanich wants to see as many as possible take part.

“We’re looking to identify cases that haven’t been sent to the Cancer Registry,” said Buchanich. Before the wrap-up session in Nesquehoning, her team had spent several days in the Wilkes-Barre, Pottsville and Hazleton areas interviewing residents and meeting with health professionals.

“We talked to people in the area and obtained ‘consents’ from local PV patients,” she said, calling the trip a success. She emphasized, however, that additional cooperation is still needed.

“We need people to consent (to take part in the study) and to sign their medical records information release,” said Buchanich, adding that a target study completion date is September, 2012.

The study is examining incidences of three blood disorders plus a form of leukemia, and represents just one portion of a multipronged effort aimed at investigating reports of cancer clusters in the three-county region.

About $8.8M is being spent in research and investigations coordinated by the federal Agency for Toxic Substances and Disease Registry (ATSDR) and the CAC.

According to Murphy, some 130 cases of PV had been reported to the Registry between 2006-09 including 67 cases in 2007, but the total working number today is actually down to 33 cases.

“Some have died, some couldn’t be located and some chose not to participate,” explained Murphy.

The forum included a conference call with Dr. Henry Cole, Maryland, and Elizabeth Irvin-Barnwell, leader of the PV project at the Centers for Disease Control, Atlanta.

Before the session, one participant noted that reported cancer cases appear to suggest the presence of similar PV clusters in the Shamokin-Mt. Carmel area of Northumberland County and in the Danville area of Montour County.

Research into the cause of the cancers has been under way for several years. Currently, scientists are gathering data and interviewing residents to determine whether there is a continuing cluster of the rare blood disorder, which can lead to blood clots, heart attacks and strokes.

The Pa. Department of Environmental Protection has been sampling drinking water, and taking dust and soil at the homes of study participants.

In addition, workers have tested water and sediment samples at the McAdoo Superfund site and cogeneration plants in the area.

A team from Drexel University is trying to identify risk factors for the disease.

In other PV-related news, Murphy is organizing the Betty Kester Alliance for a Healthy Future, a 501(c) 3 named for the woman who led the early charge in the fight against PV. She and her husband, residents of Ben Titus Road in Still Creek, both passed away from the illness.

The alliance will pick up where the CAC group ends, aided by grants. Funding for the CAC group stopped almost one year ago. Murphy has been personally financing efforts to create the alliance in order to sustain the work of the CAC group and its scientific advisory team.

Offers of assistance, either in manpower or monetary, can be directed to the alliance. More information is available at (570) 668-9099.

Researchers hone cancer studies

http://standardspeaker.com/news/researchers-hone-cancer-studies-1.1190694#axzz1VTpgZtzW

By SAM GALSKI (Staff Writer)
Published: August 19, 2011

Researchers from the University of Pittsburgh Graduate School of Public Health are inviting residents from parts of Luzerne, Schuylkill and Carbon counties who have been diagnosed with polycythemia vera or related blood disorders to participate in confidential interviews that will be conducted today at Hazleton General Hospital.

The team has interviewed about 50 people in Hazleton and at state health centers in Wilkes-Barre and Pottsville on Tuesday and Wednesday. It plans to conduct a final round of interviews today from 9 a.m. to noon at Hazleton General Hospital, according to Jeanine M. Buchanich, a Ph.D and research assistant professor from the university’s Department of Biostatistics.

Information from the interviews will help researchers confirm roughly 300 PV cases identified in the Pennsylvania  Cancer Registry – and possibly bring undocumented cases to light, Buchanich said.

The findings will be included in a study that will determine whether there is a continuing cluster of a rare blood disorder in the tri-county area that leads to blood clots, heart attacks and strokes and has no known cause.

The study will be completed by September 2012 and will serve as an extension to a study that was completed in 2008 and accounted for cases that were diagnosed up to 2005, she said.

“This study will be from 2009 through now,” she said. “The original study stopped in 2005. We’ve also added other conditions related to PV.”

Chronic myelogenous leukemia, chronic idiopathic myelofibrosis and essential thrombocythemia are among blood disorders that researchers hope to document.

Buchanich reported on progress of the study at Thursday’s Community Action Committee (CAC) meeting at the Carbon County Communications Center in Nesquehoning.

She and other university researchers are working with the Pennsylvania Cancer Registry to contact and get permission to have people with documented PV and other blood disorders included in the study.

“There are over 300 cases identified so far and only 30 have sent in consent forms,” she said. “It’s been a struggle.”

A larger number of participants translates to a more accurate study, she said.

CAC organizer Joe Murphy urged residents to take part in the interviews. Information will be kept confidential and interviews will be conducted in a private office area at Hazleton General, Buchanich noted.

Those who participated in this week’s interviews weren’t all diagnosed with PV, but Buchanich said the group was successful in securing information that could be used in the study.

Researchers originally proposed conducting additional interviews next month, but a representative from the Agency for Toxic Substances and Disease Registry who participated in the meeting via speakerphone said they hope to have much of the information-gathering completed by the first quarter of 2012 so officials can review information and have a final report available later in the year.

Dr. Henry Cole, who also took part in the CAC meeting via speaker phone, urged ATSDR officials to be as transparent as possible as they prepare and release final versions of the study.

Cole called on the federal agency to release a preliminary findings report – so the public can digest that information and compare any changes or agency comments to a final version.

CAC members brought Thursday’s meeting to a close discussing ways various state and federal environmental officials can develop a correlation between environmental conditions and PV and cases involving blood disorders. Cole suggested monitoring fly ash sites, installing deep monitoring wells at the McAdoo Superfund site and evaluating sediment and sampling water at the Still Creek Reservoir. CAC member Robert Gadinski said a water sample taken at the reservoir yielded high lead readings at 75 parts per billion and that the water during a recent period of heavy rain turned orange, which could indicate acid mine drainage issues.

Gadinski also noted that a water hole drilled in Kline Township that was originally planned as a source for public consumption had been taken off line because of high arsenic levels.

sgalski@standardspeaker.com

Polycythemia Vera and Social Security Disability

http://www.socialsecurity-disability.org/disabling-conditions/polycythemia-vera-and-social-security-disability

Polycythemia Vera (with erythrocytosis, splenomegaly, and leukocytosis or thrombocytosis) – Condition and Symptoms

Polycythemia vera is a type of blood disorder which causes the bone marrow to overproduce red blood cells. The condition sometimes also causes the body to produce too many platelets and white blood cells. These disorders cause the blood to thicken, which leads to a number of adverse conditions.

Most victims of polycythemia vera are sixty years old and older, though the condition can affect people at any age. Some connection to toxic chemicals is suspected but not adequately proven.

Many people with polycythemia vera fail to show any symptoms, and may never discover they have the condition unless it shows on blood testing. Many of the common symptoms are mild enough that they go unnoticed as well. Common symptoms include:

• Itchiness after being exposed to warm water.
• Gouty arthritis.
• Peptic ulcers.
• Sudden burning and pain in feet and hands.
• Bluish or reddish skin coloration.
• Headaches.
• Trouble concentrating.
• Fatigue.
Because polycythemia causes the blood to thicken, it can cause blood clots. Generally, these clots respond well to aspirin if they are noticed. Unfortunately, many people with polycythemia don’t notice any symptoms until they have a stroke, heart attack, or other serious condition caused by the blood clotting.

The blood thickening caused by polycythemia causes the blood flow to slow down. In some cases, the blood takes twice as long to circulate through the body than it would in a healthy body. People with polycythemia vera are at significant risk for such serious and debilitating health conditions as:

• Myelofibrosis
• Budd-Chiari syndrome
• Deep venous thrombosis
• Heart attack
• Stroke
• Pulmonary embolism
There is no cure known for polycythemia vera and it is a chronic (long term, continual) condition by definition. To date, all treatments for the condition are focused on treating the symptoms and lessening the complications caused by the thickening of the blood. Common treatments include:

• Aspirin therapy. Low dose aspirin has been shown to reduce complications.
• Bloodletting. Removing some of the body’s blood
• Chemotherapy.
• Interferon injections.
• Bone marrow transplant.
Other treatments are being tested, and some show some promise of better addressing the symptoms of polycythemia vera.

Filing for Social Security Disability with a Polycythemia Vera (with erythrocytosis, splenomegaly, and leukocytosis or thrombocytosis) Diagnosis

General information about filing for Social Security disability benefits with blood disorders can be found in Section 7.00 of the Social Security Administration’s Listing of Impairments Manual, more commonly called the Blue Book. Polycythemia Vera (with erythrocytosis, splenomegaly, and leukocytosis or thrombocytosis) is covered in Section  7.09.

Generally speaking, polycythemia vera cases are evaluated based on the body systems which are affected. This is commonly in the sections regarding heart disorders (Section 4.00), though adjudicators may take into account any of several other possible organs and body systems affected.

When applying for Social Security disability benefits, you will want to have as much corroborating medical documentation as possible. You will need the results of all lab tests which were used to confirm that you have polycythemia vera. You will also want to make sure that all blood transfusions are thoroughly documented and that you keep track of how many blood transfusions you have had. Any medical tests or documentation regarding the various organs which are affected by your disabling condition should also be included in your claim.

Your Polycythemia Vera (with erythrocytosis, splenomegaly, and leukocytosis or thrombocytosis) Disability Case

Because they are adjudicated on the standards pertaining to the body organs and systems which are affected by the thickening of your blood rather than on the blood itself, many claims take a number of disabling conditions into account. Often, even if you don’t meet any one listing for disability, the combination of effects on several body systems is enough for you to qualify for disability benefits.

Claiming Social Security disability benefits can be a confusing process. The SSA holds a very narrow definition of what counts as disability. In order to qualify for benefits, you need to show that the sum of your conditions is serious enough that you can’t perform any kind of meaningful work.

One thing many polycythemia vera claimants have going for them is their age. The older you are, the less the SSA expects you to be able to adjust to new and different types of employment opportunities. Older claimants still have to prove that they are incapable of performing work for which they could reasonably be trained, of course, but the SSA sets the bar lower in terms of how much re-training they expect claimants to be able to go through.

Most Social Security disability claimants benefit from the help of a Social Security disability lawyer. Your disability attorney can make all the difference between a denial and an approval. Best of all, it’s free to have an experienced Social Security lawyer evaluate your disability claim and discuss it with you.

Doubt on cancer cluster legislation

http://www.mcall.com/news/nationworld/pennsylvania/mc-pa-cancer-cluster-legislation-20110710,0,6315339.story

By Andrew McGill, Of The Morning Call
9:57 p.m. EDT, July 10, 2011

Some fear measure, which would create ‘first-responder’ task force, may not be genuine effort to protect public health in Carbon, Schuylkill, Luzerne counties.

Merle Wertman has been kept waiting a long time.

Eight years ago, doctors diagnosed him with polycythemia vera, a rare cancer that thickens the blood to a sludge only bloodletting can relieve. His neighbors in Tamaqua had just started to speak up, to declare something was wrong in the coal region, something that made people sick.

Eight years, millions of dollars in grants and countless studies later, investigators still don’t know why Wertman fell ill or why so many of his neighbors in this rural region share the same disease.

So every time the 66-year-old sits at a public meeting, checks his hemoglobin count or makes the twice-monthly trip to Coaldale for treatment, he can’t help but wonder: Are we being ignored?

“This is going on for eight years, and we’re getting no headway with it,” he said. “There’s no answer.”

Concerned by reports of cancer clusters in his own district near Wilkes-Barre, state Sen. John Yudichak, D-Luzerne, proposed a bill last week for a statewide cancer cluster task force that would investigate cases like the coal region’s.

Pitched as a union between the Department of Health and the Department of Environmental Protection, the team would be the state’s first responders, evaluating the situation and calling in the feds if necessary.

His measure drew applause from residents in Pittston, who say runoff from a local mine has sickened dozens. But  those who have been here before — namely weary members of the coal region’s Community Action Committee, the guardians of the area’s only federally-confirmed cancer cluster — have learned to be skeptical.

“My fear is that this is not a genuine effort to protect public health,” said Henry Cole, an environmental scientist from Upper Marlboro, Md. and the committee’s hired expert. “My fear is that it will be used to funnel public discontent into a system that can be controlled without any real protection.”

Yudichak’s bill would require the Department of Health to develop guidelines for investigating cancer clusters. It would bring together a team of experts in epidemiology, toxicology, pollution control and other specialties to look into complaints and write a report.

Anyone could submit a petition to call in the response team. The Department of Health would consider the site’s local pollution sources, significant health threats or the lack of good data.

“Any way that you can make the bureaucracy of state or federal government work more efficiently is a good thing,” Yudichak said. “Particularly when you’re talking about an emotional issue like this.”

The senator wrote the bill amid complaints from residents in Pittston, who said they had to go to local television stations before anyone would look into the high rate of cancer in some neighborhoods. The Environmental Protection Agency hasn’t found evidence of a cluster and said it won’t investigate further, residents say.

He’s lauded by his Luzerne County supporters, who say the bill would set into statute a clear path to addressing their concerns.

The subjects of the coal region’s cancer cluster study aren’t so sure. The Centers for Disease Control and Prevention has been investigating the cluster, which spans Carbon, Schuylkill and Luzerne counties, for nearly five years, making those who live in the area all too aware of the government’s limitations.

Joe Murphy, president of the Community Action Committee remembers 2004, when representatives from the Department of Health told him a cancer problem “didn’t exist.” DEP is hardly more popular. At a meeting in Tamaqua in June, residents heaved a collective sigh of exasperation when a DEP spokesman said tests to determine a cause haven’t found anything conclusive.

Neither state agency has the experts necessary to effectively investigate cancer clusters, Murphy said. For example, he said, much of the groundwork in the Tamaqua investigation has been outsourced to universities and professional contractors.

It’s also unclear how Yudichak’s team would be financed. The current bill doesn’t appropriate funds, and the senator admits both departments may have to use existing equipment and personnel.

That’s what Cole, a veteran and skeptic of government investigations , calls a recipe for neglect. He’s doubtful Gov. Tom Corbett’s administration would push the envelope on environmental issues, particularly when industry could stand to lose.

“They function in accordance with the policy of the executive branch of government, which is to promote energy development — with environmental protection taking the back seat in the bus,” he said. “This bill would do little to change that.”

Despite his distrust, Wertman is willing to give Yudichak’s bill a chance. Anything is better than being ignored, the polycythemia vera patient said. And hope does spring eternal.

“The more people you get involved, the better,” he said. “I’m not in love with DEP, don’t get me wrong, but maybe there’d be someone that could turn things around.”

andrew.mcgill@mcall.com
610-820-6533