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.

By LIZ PINKEY TN Correspondent tneditor@tnonline.com
Wednesday, July 20, 2011

LIZ PINKEY/SPECIAL TO THE TIMES NEWS Daniel Lattanzi, who could be facing a $25,000 bill to connect to the sewer main, called the wildcat sewer situation in Tamaqua a "moral issue" and requested that the borough provide some relief for residents facing large bills as they connect to the sanitary sewer.

Members of Tamaqua’s Borough Council got an earful last night from several citizens who are unhappy about the fact that they are responsible for footing the bill to connect to the sanitary sewer, after years of illegally, and in most cases, unknowingly, discharging waste into the Wabash Creek.

Although the project and its expense have people upset, one of the other issues that came to light at last night’s meeting is the fact that by delaying the investigation of the problem the borough may have caused citizens to miss out on opportunities to seek outside funding or loans to help finance the project.

Anna Brose, of 249 West Broad St., said that the first letter she received regarding the problem and explaining that dye testing would be completed in the future was in 2008.

“It has taken three years to have the dye test done. I have a problem with that,” she said. “There is no financial aid available. Two years ago, three years ago, there was money available. Now there is nothing.”

Brose went on to say that she had received a letter from the borough stating that there was money available through the USDA and through Schuylkill Community Action.

“That money has dried up,” she said. “Schuylkill Community Action said their funding dried up two years ago.”

Brose said she could take a low interest loan through the borough, but still balked at the cost.

“I have paid a lot of money to the borough, as have a lot of people in this room,” she said, referring to the estimated $9,200 she has paid in sewer bills over the last 30 years. “We just can’t absorb this amount of money, when this could have been done how long ago and money would have been available,” she said.

Borough President Micah Gursky agreed that the situation is not a good one. However, he stood by the borough’s process.

“Everyone agrees that it should have been done a long time ago,” he said. “Our initial plan was to dye test the properties, but the cost was much higher than we could afford as a borough. That was the delay. We were trying to figure out options, how to figure out who needed to hook up.”

Gursky also said this is not the first time that the borough has had to deal with properties where the owners believed that they were connected to the public system and were in fact, not.

“It happens from time to time,” he said. “Unfortunately, everyone is required to hook up.”

Councilman Tom Cara said that the borough was willing to “let this thing go on because we didn’t want to put the burden on you.” However, Gursky disagreed.

“You can’t flush your toilet into the creek,” he said.

Resident Kevin Kellner, who lost his home at 5 South Lehigh St. in a fire on July 5, was one of the property owners who was notified that he was not connected. Kellner said that his lawyer had advised him that the residents will be required to pay to connect to the sewer, however, he told him that he should recoup the money that he has paid to the borough over the years in sewer bills.

Gursky said that the borough has “been down that road before” and does not expect that the borough will be required to reimburse residents. Kellner also asked why DEP has not been held accountable for the cleanup of local waterways, including the Wabash and the Panther Creek.

Another unfortunate issue with the timing of the project has to deal with the Streetscape project that was recently completed along sections of Broad Street. Many of the property owners will be required to dig through the new sidewalks and pavers and replace them in order to connect to the sewer main.

“Yeah, we’re kicking ourselves because we’re going to have to cut into new sidewalks,” said Gursky.

One resident could be looking at an even larger project. Daniel Lattanzi, of 403 E. Broad St., is facing an estimated $25,000 in bills as he would need to connect to a main located on the other side of Broad Street, which would necessitate digging all the way across Route 209. Lattanzi has lived at the seven unit apartment complex since 1950 and owned it since 1962. Although he said he could pursue a cheaper alternative and install a grinder pump and avoid crossing 209, he has no control over what is going into that pump and is not willing to risk incurring more expense for the continual upkeep of the pump.

“I can’t get a bit of help. We’ve been hung out to dry,” he said, calling it a “moral issue.”

“I feel the borough should do something,” he added.

Another resident, Maria Burke, of Rowe Street, asked what will happen to residents who cannot comply with the Aug. 31 deadline. Burke expressed the frustration that many residents feel at being told they are breaking the law.

“I don’t want my crap going in the freaking creek. Who does? We want to do the right thing,” she said, but she indicated that with a newborn at home, she may not be able to find the money and additionally, trying to find a plumber to complete the work by Aug. 31 is going to be difficult with more than 40 properties needing to be addressed.

“We’re begging you,” she said to council members, “be an advocate for us.”

Councilman Brian Connelly said that the borough will contact other offices, including U.S. Rep. Tim Holden, to see if there is any aid that can be made available to residents.

However, he and other council members are not optimistic that funding will be forthcoming, especially not by the Aug. 31 deadline.

Borough manager Kevin Steigerwalt said that the borough will definitely need to ask DEP for an extension. The Tamaqua Public Library has already missed its deadline to connect to a lateral on a neighboring property and will need to look at another alternative.

Steigerwalt said that DEP has been advised of that situation and has not approved or denied an extension request, it has just asked that it be corrected as soon as possible.

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

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

Posted: June 18, 2011

Health matters Pa. wants to create registry to track illnesses in fracking communities

HARRISBURG — Gov. Tom Corbett’s top health adviser said Friday that he wants to make Pennsylvania the first state to create a registry to track illnesses in communities near heavy drilling in the Marcellus Shale natural gas formation to determine what kind of impact, if any, the activity has on public health.

Health Secretary Eli Avila told Corbett’s Marcellus Shale Advisory Commission that creating such a registry is the timeliest and most important step the Department of Health could take, and that his agency is not aware of anything like it in other drilling states.

“We’re really at the frontiers of this and we can make a speedy example for all the other states,” Avila told the commission at its fourth meeting.

Collecting information on drilling-related health complaints, investigating them, centralizing the information in one database and then comparing illnesses in drilling communities with non-drilling communities could help refute or verify claims that drilling has an impact on public health, he said. The aggregation of data and information also would allow the Department of Health to make its findings public, in contrast to the privacy that surrounds its investigation into individual health complaints and the findings that may result.

The Marcellus Shale formation, considered the nation’s largest-known natural gas reservoir, lies primarily beneath Pennsylvania, New York, West Virginia and Ohio. Pennsylvania is the center of activity, with more than 3,000 wells drilled in the past three years and thousands more planned in the coming years as thick shale emerges as an affordable, plentiful and profitable source of natural gas.

The rapid growth of deep shale drilling and its involvement of high-volume hydraulic fracturing, chemicals and often-toxic wastewater are spurring concerns in Pennsylvania about poisoned air and water.

“As drilling increases, I anticipate, at least in the short term, a proportionate increase in concerns and complaints which the department must be prepared to address,” he said.

In the past year or so, the Department of Health has received several dozen or so health complaints, he said.

One woman, Crystal Stroud of Granville Summit in northern Pennsylvania, told an anti-drilling rally in the Capitol this month that she is hearing from others in Bradford County about bizarre and sudden health problems that they blame on contaminated water from the area’s heavy drilling.

Stroud herself blames her barium poisoning on well water polluted by drilling near her home, and accused state agencies of turning a blind eye.

“I am extremely confused as to why our Health Department is not interested in these issues and no one from (the) Pennsylvania Health Department has contacted us, and why are they not investigating this?” Stroud, 29, told the crowd on June 7.

“Every week I receive a phone call from someone different in my county that has unexplained rashes, high blood pressure, heart palpitations, high barium levels, a child with blisters all over his face from his mother bathing him in the water, and even a woman whose spleen burst in an unexplained way, all with contaminated water,” she said.

A spokesman for Corbett has said both the departments of Health and Environmental Protection have active investigations into Stroud’s claims, and the company that drilled the well, Dallas-based Chief Oil & Gas LLC, has denied responsibility for Stroud’s health problems.

On Friday, Avila said his agency has found no links between drilling and the illnesses and diseases presented to it so far, but he added that a wider study is necessary to determine whether there are any associations, and a health registry could accomplish that.

Such health registries are common, and in the past have been created to monitor and study data related to cancer and rare diseases, health department officials said. To set up a drilling-related registry and fully investigate drilling-related health complaints would require another $2 million a year for the department and possibly require the help of the state’s schools of public health, Avila said.

Shale drilling requires blending huge volumes of water with chemical additives and injecting it under high pressure into the ground to help shatter the thick rock — a process called hydraulic fracturing. Some of that water returns to the surface, in addition to the gas, as brine potentially tainted with metals like barium and strontium and trace radioactivity by the drilling companies.

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

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.

Published: June 14, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

By Andrew Staub (Staff Writer)
Published: May 25, 2011

PITTSTON – To prove the existence of a cancer cluster near the Butler Mine Tunnel, residents arrived at a city school on Tuesday armed with anecdotal evidence – exhibits like a bald head hidden under a ball cap, scars from medical treatments and stories of friends and family who succumbed to cancer.

To discount the existence of a cancer cluster near the Butler Mine Tunnel, scientists from the state Department of Health and officials from the U.S. Environmental Protection Agency arrived to the school with empirical evidence – 17 year’s worth of data, literature and detailed presentations.

The two sides, meeting in the Martin L. Mattei Middle School’s cafeteria, never quite reached a common ground. Instead, residents lobbed questions – and frustrated grumbles – toward officials from the EPA and Department of Health when told the 60 or more cases of cancer that have accumulated on Mill and Carroll streets do not qualify as a cancer cluster.

Such an assertion, residents said, is hard to believe considering the Butler Mine Tunnel looms beneath portions of the city. The tunnel, designed as a drainage outlet for a maze of abandoned mines, served as an illegal dumping ground for oil waste in the late 1970s and twice spewed its sludge into the Susquehanna River.

“Who shot Kennedy?” said Chuck Meninchini, a Carroll Street resident diagnosed with lymphoma in February.

While allusions to a cover-up at worst and a lack of answers at best filtered through the room, the EPA’s remedial project manager for the Butler Mine Tunnel Superfund Site, Mitch Cron, tried to assure residents the mine tunnel posed no present danger to them.

“The public is not exposed to contamination from the Butler Mine Tunnel Superfund Site,” Cron said, uttering a line he would repeat several times throughout the night.

The EPA has found oil and grease residue near a borehole at the Hi-Way Auto Services Station, the business that allowed the waste to be dumped into the ground from 1977-79, Cron said. And though one hazardous chemical was detected in amounts above drinking water standards, Cron said that the mine water is not used for drinking and that the water running through the tunnel now is “generally very clean.”

Dr. Stephen Ostroff, director of the state’s bureau of epidemiology, presented data that showed Pittston’s cancer rate outpaces the state average by 11 percent, with an excess of lung, colon and thyroid cancer diagnoses from 1992 to 2008.

Still, Ostroff couldn’t confirm the presence of a cancer cluster, defined by the EPA as an “occurrence of a greater than expected number of cases of a particular disease within a group of people, a geographic area or a period of time.”

City residents suffered from a wide range of cancers, while cancer clusters generally involve a large number of one type of cancer or a rare cancer, Ostroff said. The types of cancers found in excess in Pittston, Ostroff said, usually are not caused by exposure to chemicals.

“That’s the bottom line,” he said.

Most residents disagreed with Ostroff.

Some questioned why the Department of Health examined the entire 18640 zip code instead of limiting its examination of Pittston to just Mill and Carroll streets, where most residents say they’ve noticed inflated numbers of cancers. A small sample size, Ostroff said, would not provide sufficient data.

Others discounted the data from the state cancer registry, and one resident even suggested to “delete” it. Another man walked out when Cron said the EPA had no plans to test soil samples from homes on Mill and Carroll streets.

Edward Appel lives on Mill Street and came to the school with his wife, Helen. She sat in a wheelchair beside Edward, who described his wife’s past battle with breast cancer, then brain tumors. He believes the mine tunnel must be connected to Helen’s trip through “hell.”

“It’s easy to say nothing’s happening – by the people that don’t have the cancer,” Edward Appel said.

Another Mill Street resident, George Boone, collected some of the pamphlets at the open house. A heavy white bandage wrapped around his left arm told the story of the kidney dialysis he endures three times a week, while his shirt hid the scar left when surgeons removed his right kidney about 11 years ago at the outset of his battle with kidney cancer.

Boone’s friend, Phyllis Hadley, said cancer claimed in-laws and her husband. Then she rattled off surnames of several city families who have lost someone to cancer.

“You know what,” Hadley said, “if you stopped to think … ” “… You’ll count forever,” Boone said, finishing her thought.

The anecdotal evidence hasn’t changed the mind of the EPA or the Department of Health, both of which stood by past research and observations.

Area elected officials such as state Sen. John Yudichak and U.S. Rep. Lou Barletta, though, left residents with a vow to continue the search for clarity about Pittston’s high rate of cancer. Barletta would like to see additional testing to find out if there’s a root cause, said his spokesman, Shawn Kelly.

“Even if it’s not the Butler Mine Tunnel, we want to make sure it’s not something,” Kelly said. “The people here deserve answers.”

astaub@citizensvoice.com, 570-821-2052

Department of Health Announces Blood Disorder Study in Southwestern Pennsylvania

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

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

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

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

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

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

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

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

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

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

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

Media contact: Holli Senior, 717-787-1783

SOURCE Pennsylvania Department of Health