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Update coming on rare blood disease Informal session set for Tamaqua on Thursday

  • TN FILE PHOTO/DONALD R. SERFASS  Lora Werner of the Agency for Toxic Substances and Disease Registry returns to Tamaqua Thursday to update the progress on finding the cause of a rare blood disease found in Schuylkill, Carbon and Luzerne counties.
    TN FILE PHOTO/DONALD R. SERFASS Lora Werner of the Agency for Toxic Substances and Disease Registry returns to Tamaqua Thursday to update the progress on finding the cause of a rare blood disease found in Schuylkill, Carbon and Luzerne counties.
Published September 18. 2012 05:01PM

Local residents will be updated Thursday on the government's progress to get to the bottom of a rare blood disease in a tri-county region.

The Agency for Toxic Substances and Disease Registry (ATSDR) will conduct an informational session on polycythemia vera (PV) research projects in the area of Schuylkill, Luzerne, and Carbon counties on Sept. 20 at the Tamaqua Public Library.

The availability session, set up as two presentations an hour apart, will be held from 6-8 p.m. at the library's 30 South Railroad St. location.

Representatives from the ATSDR and other researchers will be available between the update at 6 p.m. and a repeat update at 7 p.m. to speak with area residents about the ongoing projects, up until 8 p.m.

According to the ATSDR, Lora Werner, Philadelphia regional director, and Elizabeth Irvin-Barnwell, epidemiologist will address the session.

PV is a rare illness that causes the body to make too many red blood cells. In 2008, an ATSDR investigation identified a cluster of PV cases in eastern Pennsylvania. In 2009, ATSDR received funds to pursue the PV investigation.

ATSDR is conducting 14 research projects and four non-research projects. The Pennsylvania Department of Health (PADOH), the Pennsylvania Department of Environmental Protection and various universities and private organizations are working with ATSDR on these PV-related projects.

The projects are based on recommendations of an expert panel that identified four areas for investigation: epidemiology, genetics, toxicology and environmental analysis. Some of the research projects are evaluating risk factors associated with the development of PV, essential thrombocytosis, and primary myelofibrosis in the tri-county area. Fieldwork for the projects is expected to be completed this fall. Research findings and reports will be presented at future public meetings as data review and analysis are completed.

In 2009, $5.5 million in federal funds was earmarked for studies in an attempt to find answers to a problem experts believe is unique in the country.

Statistics have suggested that area residents are developing the blood disease and other cancers at an abnormal rate and PV is being found with alarming frequency. It is characterized by a thickening of the blood and related complications. Statistically, it is found in one or two people per 100,000 population.

But in one local neighborhood, multiple cases were found along one single street, including two cases in the same household. So far, the issue has stumped experts. Does the problem stem from environmental contamination at the nearby McAdoo Associates Superfund site? Or is it from radiation in the water or maybe from human contact with formaldehyde used in foam insulation in homes? Or could radon possibly the culprit?

Alarming rate

On July 9, 2009, an information gathering session was conducted by ATSDR and included members of the PADOH and researchers from Drexel University.

At that point, federal officials acknowledged that a tri-county area is host to a significant number of cases of the rare blood disorder, specifically portions of Schuylkill, Carbon and Luzerne counties.

"We did find a statistically significant number of cases of PV in this particular area," affirmed Vince Seaman, ATSDR toxicologist, when he addressed 100 area residents attending the forum.

Seaman said cases of PV can be found all across the country and even worldwide. But the higher number of cases in the three local counties appear in what Seamen called a general, or "fuzzy," geographic pattern. Ken Orloff, another ATSDR toxicologist, confirmed that a cluster of the illness appears "between Tamaqua and Hazleton."

At that time, experts announced a multipronged program to address the situation, including a $449,000 study by Drexel University to investigate the cluster and work with the DOH to help identify risk factors.

The study intended to look at environmental exposures, hereditary factors such as the acquired JAK2 blood marker which is found in most PV patients, and other factors and biomarkers.

Other study initiatives were to include: environmental exposure assessments, seasonal water outflow patterns at the McAdoo site, and testing target residences for air, water and soil contamination and radiation exposure.

"At this time there is no recognized cause for PV," said Dr. Arthur Frank, Drexel University professor of public health, during the forum. However, Frank said exposure to benzene and radiation are known related factors.

Frank said a case control study would begin with people who have PV, with results compared to those who don't have it. Geisinger Health System will be a partner in the study, he noted.

A local Citizens Action Committee group headed by Joe Murphy, Hometown, was formed to represent the community as the above-mentioned activities unfold and to discuss issues with the ATSDR and PADOH on behalf of local residents.

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