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
Coal region still far from finding cause for mysterious cancer
http://www.mcall.com/news/local/allentown/mc-tamaqua-cancer-cluster-20110618,0,2997474.story
By Andrew McGill, OF THE MORNING CALL
10:35 p.m. EDT, June 18, 2011
Researchers studying a cancer cluster say they’re still mastering the basics in an investigation that’s stretched five years.
Five years have passed since federal researchers first came to Pennsylvania’s coal region seeking the origins of a mysterious disease.
And while numerous government agencies, hospitals, doctors and universities have joined the hunt, a cause remains elusive, those gathered in Tamaqua for an update of the studies found out Wednesday.
“PV” is as well-known as anthracite in the Pennsylvania coal region, where the Centers for Disease Control and Prevention say the rare form of cancer has taken unusually strong root. Estimated to affect one in 100,000 Americans — though researchers aren’t firm on that number — polycythemia vera has been known to hit four families on a single street in Tamaqua.
The victims have little in common, researchers say. They don’t have the same jobs, the same ancestry, the same lifestyle. The only things they share are age — the disease strikes few under 60 — and an attachment to the three-county region of Carbon, Luzerne and Schuylkill counties, home to one of the CDC’s few confirmed cancer clusters.
And to hear scientists speak at a community meeting Wednesday, proving anything further could be slow going.
At the Tamaqua Community Center, researchers said they’re still struggling with the basics of the investigation: finding people with PV, winnowing out the false positives and narrowing down possible environmental causes.
In a University of Pittsburgh study seeking to confirm legitimate cases of the blood cancer, only 27 patients out of the 164 queried agreed to participate. The numbers also are low for a sister study at Drexel University in Philadelphia, which has gotten 26 positive responses out of 117.
To date, researchers have diagnosed 372 cases.
But many of the names provided to researchers by the Pennsylvania Cancer Registry are out of date, either because of death or a change in address. Reporting irregularities mean researchers still aren’t sure how prevalent the cancer is in the general population.
“The primary data collection is very tedious,” said Carol Ann Gross-Davis, a researcher at Drexel. “But things are still progressing. Since Wednesday, we got two more cases. That’s how we have to count them.”
Progress has been similarly slow for state Department of Environmental Protection field workers, who have collected water, soil and sediment samples from homes of PV patients, nearby power plants and area water sources. They’ve found little, with water tests showing scattered elevations of lead and nitrates and a few homes showing moderate spikes in radon.
The one place they haven’t looked? The air. That’ll be left to private contractor Peter Jaran, who’s reproducing some of DEP’s tests and extending the search into the atmosphere, heavy with the grit of several nearby power plants.
But the $8 million in federal funding for the investigation includes a deadline, and several projects are coming due. Gross-Davis said her study, which seeks to find demographic data among PV patients, was supposed to end in September, far too early.
She’ll apply for an extension. But in an investigation that has grown many limbs — funding is split among a dozen separate projects and 10 organizations — coordinating efforts with other researchers has gummed the gears in finding PV’s cause.
At the same time, funding for the Community Action Committee, the investigation’s main public relations link to the coal region community, has nearly run out. Organizer Joe Murphy said the government has denied his request for $50,000 to keep the program going for another year, leaving him scrambling to find donors.
The group runs a PV support organization and distributes information on the progress of the studies.
The need for communication couldn’t have been clearer Wednesday. Residents, who have grown far too familiar with phrases like “allele burden” and “causal factors,” threw out suggestions: Have you looked at heredity? How about coal ash?
Frustration mounted.
Amid their questions, officials began hedging that they may never find the smoking gun that leads to PV.
That keeps Dr. Henry Cole awake at night. A paid adviser to the Community Action Committee, he’s seen the government muddle around and throw its hands up at the end of an investigation before. He doesn’t want the same fate for Tamaqua.
“There’s a distinction between not finding evidence and saying there’s no problem,” he said. “That’s been done all over this country.”
andrew.mcgill@mcall.com
610-820-6533
Experts discuss likely sources of the rare blood illnesses in the three-county area
http://www.tnonline.com/2011/jun/16/it-radon-fly-ash-or-something-else
Thursday, June 16, 2011
By DONALD R. SERFASS dserfass@tnonline.com
Is it radon, fly ash or something else?
DONALD R. SERFASS/TIMES NEWS Dr. Jeanine Buchanich, University of Pittsburgh, stresses the importance of participating in studies aimed at targeting the cause of a rare blood disease. Buchanich was one of several speakers at a public forum held Wednesday at the Tamaqua Community Center. Also shown are Tom Murphy, Hometown, health and environmental advocate, and Dr. Henry Cole, Maryland.
Is radon the culprit in an unusually high number of cases of a rare blood illness in Schuylkill, Carbon and Luzerne counties? Or is it fly ash? Or maybe something else?
Those possibilities are being examined, along with a variety of other scenarios as part of $8.8M in research and investigations.
At Wednesday’s public meeting, sponsored by the federal Agency for Toxic Substances and Disease Registry (ATSDR) and the Tri-County Polycythemia Vera (PV) Community Advisory Committee, an expert said significantly high levels of radon have been seen in studies here.
Robert K. Lewis, manager, hazardous sites cleanup, Pennsylvania Department of Health (DOH), told 50 in attendance at the Tamaqua Community Center that one environmental analysis of air quality has turned up an area of concern.
“We sampled radon in homes. Fifty percent of homes were 4 picocuries or higher,” noted Lewis, who explained that 48 different locations were tested. One area tested was where a high incidence of PV cases has been identified.
“We were requested to sample along Ben Titus Road,” said Lewis.
In terms of water analysis, Lewis said testing was done on “a combination of well water and commercial water supplies such as the Tamaqua Water Authority.”
Lewis said results indicate that Tamaqua residential drinking water appears to have no problem with contaminants. However, “we didn’t (test for) radon in water,” he added. That is one area that would need to be looked at, said Lewis.
Lewis indicated that drinking water testing turned up only two lead results and two nitrate.
“The department doesn’t feel that drinking water is a problem here, but we should go back and look for radon.”
One expert said the entire effort is multipronged.
“You have an interdisciplinary group of scientists working on these studies,” said Dr. Henry Cole of Maryland, who has been working with Tom Murphy, Hometown, a founder of the CAC group.
The meeting featured updates by the Pa. Department of Environmental Protection, the agency sampling drinking water, dust and soil at the homes of study participants.
In addition, workers are testing water and sediment 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, while researchers at the University of Pittsburgh are studying the frequency of PV cases.
Research updates target PV incidence
The session provided a broad range of updates from a variety of sources:
Ÿ Elizabeth Irvin-Barnwell of the ATSDR said a total of 1,150 persons were screened for the JAK2 mutation, found in those who develop PV. In addition, 3,500 DNA samples were analyzed for the mutation.
“We can link each person’s test with demographic factors … it’s a groundbreaking study,” said Irvin-Barnwell.
Ÿ Dr. Lora Siegmann Werner of the ATSDR outlined initiatives in health education, such as developing literature to address “What does it mean if you have PV?” A comprehensive list of physicians has been completed because there is great need to get information to doctors, she said. She also lauded work by the CAC support group and Michelle Greshner.
Ÿ Dr. Jeanine Buchanich, University of Pittsburgh said, “We’re working with the Department of Health to do an expansion of the original study.” She said 372 cases are included in the study, all from the Pennsylvania Cancer Registry. She said as many folks as possible should take part.
“We’re hoping CAC members will convey how important it is to participate in the study. The success of the study depends on getting people to participate.”
Ÿ Dr. Carol Ann Gross-Davis of Drexel University reported on a case control study of 147 people.
“Of the cases, we have 24 consented who have PV. We had 10 percent who declined to participate, which is their right,” she said, adding, “We’re doing it through the Geisinger system, coordinating through the University of Pittsburgh.”
Ÿ Dr. Jim Logue, Pennsylvania DOH principal investigator for the myeloproliferative neoplasm program, said he’s been involved in cancer analyses since 2004. He announced success with a partnership.
“We secured two contracts with the University of Pittsburgh.”
Ÿ David Marchetto, the department’s program manager, said progress is being made.
“The pieces are coming together,” he said. “We’re working with state, federal and local partners.” Marchetto also said, “Misclassification of the disease is a concern to us. There are cases reported to the cancer registry that aren’t PV, not only here but in southwestern and central Pa. as well.”
Similarly, sometimes PV cases do not get reported, he stated.
It was noted that Dr. Peter Jaran, environmental engineer from New Jersey, will look at groundwater and potential sources of contamination.
Local residents had several questions for the experts.
Irene Genther, a Nesquehoning resident and former educator with extensive background in the sciences, asked for clarification as to whether susceptibility to PV can be attributed to heredity. Irvin-Barnwell said heredity itself isn’t seen as a factor. Still, family history and ethnicity are areas being examined.
Genther advised attendees that contaminants such as fly ash dust and radon aren’t found only in the ground, but are airborne.
Some said a solution isn’t coming fast enough.
“It’s been eight years and we still don’t have an answer,” said PV patient Merle Wertman, Tamaqua. Wertman was on hand with wife Linda. The two have been staying on top of developments with the disease. Wertman was diagnosed in 2003. He has no family history of cancer.
Dr. Cole had words of praise for Murphy, a community volunteer who devotes himself to the role of environmental and health activist.
“Joe has put so much into this,” said Cole. “He’s been the guiding light. He put his whole heart and soul into this.”
Those in attendance gave Murphy a round of applause for his role in coordinating activities of the CAC.
What is Polycythemia vera?
http://www.tnonline.com/2011/jun/16/what-polycythemia-vera
Thursday, June 16, 2011
By DONALD R. SERFASS dserfass@tnonline.com
Polycythemia vera (PV) is a blood disease in which the bone marrow makes too many red blood cells, causing the thickening of 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 of getting blood clots, which can lead to heart attacks and strokes.
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 Pennsylvania Department of Health (DOH) and the ATSDR confirmed more PV cases than expected in parts of Schuylkill, Carbon and Luzerne counties.
Much scrutiny is being done to find a potential smoking gun, or factors that would potentially lead to the disease.
The DOH and the ATSDR are tracking patterns of PV and working with research partners in looking for trends and risk factors. In addition, the Centers for Disease Control is working to improve reporting systems for PV.
“This is an environmentally stressed area,” said Dr. Henry Cole of Maryland, noting the prevalence of local power plants, Superfund sites and an abundance of fly ash being dumped in Schuylkill, Carbon and Luzerne counties.
An apparent cancer cluster was first observed along Ben Titus Road, which is situated next to the Big Gorilla coal combustion waste dump of the Northeastern Power Co. The area is also home to the Superfund site McAdoo Associates. Other industrial waste sites are found in the area as well.
While the state agencies are now helping to pinpoint possible causes, critics point out that all of the industrial waste sites were created under the oversight of the former state Department of Environmental Resources, now the Department of Environmental Protection
Experts share information on cancer cluster in Tamaqua area
http://republicanherald.com/news/experts-share-information-on-cancer-cluster-in-tamaqua-area-1.1162746
By MIA LIGHT (Staff Writermlight@standardspeaker.com)
Published: June 16, 2011
TAMAQUA – Research continues into the high incidence of a rare cancer called polycythemia vera in Schuylkill, Carbon and Luzerne counties near Tamaqua and McAdoo.
A panel of public health officials met Wednesday at the Tamaqua Community Center to provide a public update on the ongoing research.
Tamaqua-area resident Joseph Murphy, chairman of the Community Action Committee, which was established to keep residents of the tri-county area connected to the government agencies conducting the research, said the meeting was called by the federal Agency for Toxic Substances and Disease Registry, or ATSDR, to review findings and chart future research.
Robert Lewis of the state Department of Environmental Protection said DEP has been collecting samples of drinking water, soil and air at homes in the Hazleton-McAdoo-Tamaqua area as well as nearby co-generation facilities and mine pools. Among the findings were high radon levels in 20 out of 40 homes tested; high levels of lead in two wells and high nitrates in two wells. Residents of the sampled homes were notified of the findings and the results were also provided to ATSDR, which will use the data in its effort to find the reason for high rates of polycythemia vera in the area.
Researchers are working to combine the environmental information with data resulting from a JAK2 genetic marker blood test conducted in the community last year. The JAK2 marker is found in most people who have been diagnosed with or are at risk for developing polycythemia vera.
Researchers are also working to double-check blood test findings, confirm each diagnosis and ensure the state cancer registry is updated with accurate data.
“All the research projects that were started in 2009 and 2010 are now under way,” Murphy said. “Finally, the researchers are out in the community interacting with the citizens.”
Polycythemia vera 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 polycythemia vera 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 polycythemia vera 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 polycythemia vera had been confirmed by detecting a gene mutation in the patients.
According to environmental consultant Henry S. Cole, who serves as coordinator and adviser to the Community Action Committee, communication between residents and the agencies is the most important issue at this point in the research.
“We’ve got interdisciplinary groups of scientists working on this, so it is very important to have communication between all agencies,” Cole said. “We have to have that back-and-fourth so that every piece of information, every finding is accurate and current and included in the final reports.”
That crucial role of communication played by the Community Action Committee could be in jeopardy, however, if a continuing funding source is not found.
The Community Action Committee was formed and funded with a portion of a $5.5 million research grant secured through then-U.S. Sen. Arlen Specter. The local committee received $99,000 with which to operate for two years. Its responsibilities include organizing a panel of scientific experts to gather data and advise citizens, hold monthly meetings to update the community, and produce and distribute information on polycythemia vera to citizens and local medical officials.
The action committee’s two-year funding allocation ends in September. But, Murphy said, the need to stay organized and keep the public informed on the ongoing research, the findings and new information on the cause of the local cancer risk remains high.
Murphy said he applied to the ATSDR for a $50,000 grant to fund the Community Action Committee for two more years, but the request was denied.
In the absence of federal funding, Murphy said his next step is to create a nonprofit organization to support the local arm of the polycythemia vera investigation.
“We have got to keep the community aspect of this alive,” Murphy said.
Updates on the ongoing investigations are available online at www.atsdr.cdc.gov/sites/polycythemia_vera.
Public health officials taking part in Wednesday’s meeting included Lora Werner and Stephen Derwent of the ATSDR; David Marchetto and James Logue, epidemiological research associates with the state Department of Health; Carol Ann Gross-Davis, research leader with Drexell University; and Jeanine Buchanich of the University of Pittsburgh.
Geisinger Health System and the Mt. Sinai School of Medicine are also participating in the research.