Thursday, October 25, 2007

Feds confirm polycythemia vera epidemic in eastern Pa.

At a contentious four-hour meeting last evening in Hazleton, Pa., the federal Agency for Toxic Substances and Disease Registry (ATSDR) presented to the public select findings of its still-unreleased study into polycythemia vera (PV) in three eastern Pennsylvania counties -- and confirmed the Pennsylvania Department of Health's (PADOH) previous findings that there's an unusually elevated rate of the rare blood malignancy in Schuylkill and Luzerne counties. But to many attendees' frustration, the researchers were reluctant to acknowledge that documented environmental risk factors for PV exist and are present in the area by virtue of its being a center for waste dumping and incineration.

ATSDR researchers looked at the PV cases that had been reported to the state cancer registry from 2005 back to 2001, when PV first became a reported cancer. Out of the 97 registered cases from Schuylkill, Luzerne and Carbon counties, 38 patients took part in the study, with 16 declining to participate, 13 deceased, and 30 not found. The researchers also identified 34 PV cases in the community that had not been captured by the registry, for a total of 72 study participants.

Working collaboratively with Dr. Ronald Hoffman and Dr. Mingjiang Xu, blood cancer experts with the Mount Sinai School of Medicine in New York, and with funding from the Myeloproliferative Disorders Foundation, they administered tests to study participants to determine whether they carried the JAK2 genetic mutation that's present in about 95 percent of PV cases.

"We found that there was an elevated number of PV cases in certain geographic areas scattered throughout Schuylkill and Luzerne county," reported Dr. Steve Dearwent, chief of the ATSDR's health investigations branch. Dearwent presented the study's findings at the meeting in lieu of his colleague Dr. Vince Seaman, the lead researcher who earlier this month moved to Africa.

While the average national incidence of PV is about 1 case per 100,000 people, the incidence in Luzerne and Schuylkill counties is about 4 per 100,000. Other Pa. counties with significantly elevated incidence rates are Montour and Somerset at 4.5/100,000 and Potter at 5.5/100,000, according to Dearwent. The only community with elevated rates in the tri-county area that Dearwent mentioned by name was Tamaqua, a borough two miles south of Hometown village. But a map displayed by the researchers showed at least eight clusters in Schuylkill County, five in Carbon, and 11 in Luzerne. The clusters roughly follow the pattern of an upside-down T, with the horizontal line extending from Tremont in western Schuylkill County east through Jim Thorpe in Carbon County, and the vertical from Tamaqua in eastern Schuylkill County north to Wilkes-Barre in Luzerne County.

Oddly enough, the agency said it was unable to confirm a cluster of PV in the Still Creek community north of Hometown due to "insufficient records." The ATSDR's study came about after Carbon County Groundwater Guardians discovered numerous cases of the disease in that community, which lies directly downhill from the notorious McAdoo Associates Superfund site, an enormous waste-coal combustion waste pit known as the "Big Gorilla," and the Northeastern Power Co. waste-fuel-burning power plant.

Of the 72 patients who participated in the study, 38 carried the JAK2 mutation. Another four without the mutation were still determined to have the disease by a panel of experts: Dr. Paul Roda, an oncologist with Geisinger Health System; Dr. Ruben Mesa, a researcher with the Mayo Clinic; and Dr. Joe Prchal, a professor with the University of Utah's hematology division.

The ATSDR researchers also administered a questionnaire to participants to gather information about demographics, exposure to hazardous waste sites, and residential and occupational histories. Dearwent reported that three of the patients in the study had all worked for the same employer, but he refused to release the company's name, citing privacy concerns. (For the same reason, ATSDR will not release its study data for independent analysis.) Based on the participants' self-reported information, ATSDR said it found no link between environmental factors and PV.

"We don't have the environmental smoking gun," ATSDR researcher Lora Werner told the gathering. "But what we do have is confirmation of what many of you have been telling us -- that something unusual is happening."

* * *

Among the things that caused the meeting to become contentious was the ATSDR's press release announcing the findings. Some attendees complained that it understated the extent of the the area's suffering by neglecting to mention the fact that there were 97 registered PV cases in the tri-county area. The release also failed to mention the crux of the findings -- that ATSDR's study confirmed PADOH's findings that Schuylkill and Luzerne counties had significantly elevated rates of the disease.

"I think the agencies that collaborated on this press release should be ashamed of themselves," said Dr. Pete Baddick, an internist who grew up near Still Creek and has been one of the community leaders pushing for government action. "This is an outrage."

Attendees also objected to the fact that the press release emphasized the finding of no environmental link to PV -- especially given that the researchers acknowledged that more research is needed to draw any firm conclusions. Consider the release's first paragraph:
The Agency for Toxic Substances and Disease Registry (ATSDR) confirmed 38 cases of polycythemia vera (PV) in Schuylkill, Luzerne and Carbon counties. ATSDR found no link between environmental factors and PV in this area.
That certainly makes the idea that there's no link sound quite definitive. And indeed, a letter sent by Sen. Arlen Specter (R-Pa.) to the heads of the ATSDR and PADOH on Oct. 22 following his briefing on the study played up that claim:
I am heartened by the study's findings that there are no environmental or occupational causes for the disease; however, the fact remains that there is a higher than usual number of cases for this community.
Geneticist, attorney and local environmental health advocate Dr. Dante Picciano of Tamaqua blasted those statements by ATSDR and Specter in an e-mail to me after the meeting:
Both statements are bullshit. The cause is either genetic or environmental. There are no other choices. The scientific community acknowledges that polycycthemia vera is not a genetic disorder. Therefore, the disease must be caused by environmental factors.
Picciano further elaborated on his frustration over the meeting in a posting on his Web site titled "Polycythemia Vera: Government Confirms the Obvious."

The researchers' claim that no environmental links to the disease were found seems to be based in part on their repeated statements that there are no known environmental factors for PV. "We don't know the cause of PV," Dearwent said at the pre-meeting press conference. "It could be environmental, genetic or a combination. We don't know, honestly."

While it's true that scientists have not pinpointed any definitive environmental causes of PV, it's not true that they have no idea about what sort of environmental factors put people at higher risk of PV. The following is from the article "Polycythemia Vera: A Comprehensive Review and Clinical Recommendations" [PDF] by Dr. Ayalew Tefferi of the Mayo Clinic, which appeared in the journal Mayo Clinic Proceedings in 2003 (bold emphasis mine):
No strong evidence supports disease association with environmental exposure, although an excess risk has been suggested in embalmers and funeral directors, as well as in persons exposed to benzene, petroleum refineries, and low doses of radiation.
Embalmers and funeral directors are exposed to embalming chemicals, typically a mix of formaldehyde, methanol, ethanol and other solvents. Formaldehyde is also an intermediate in the oxidation of carbon compounds and is found in smog pollution, which is similar to the pollution produced by the waste-fuel burning power plants that are concentrated in Schuylkill County and also present in Luzerne and Carbon. Benzene is a one-ring aromatic chemically related to the polycyclic aromatic hydrocarbons (PAHs) produced by burning petroleum products, as is done in waste-fuel burning power plants. Benzene was also among the industrial wastes dumped at the McAdoo Associates Superfund site near the point where Schuylkill, Luzerne and Carbon counties meet, as well as at other hazardous waste sites throughout the region. The region's waste-fuel-burning power plants produce many of the same key pollutants as petroleum refineries, including PAHs. Burning coal and waste coal also produces low levels of ionizing radiation.

When I asked Dearwent about that article during the press conference, he said he was not familiar with it or its claims.

Not everyone was pessimistic about the meeting, though. Dr. Seaman was briefed about it by his colleagues and sent an e-mail sharing his thoughts to some of us who have been raising concerns about the region's environmental health problems, writing:
I think that this outcome is the best that you could have hoped for -- the door has been opened and the support is there. Dr. Hoffman's presentation at the American Hematol. Society (ASH) Annual Meeting (Dec. 9-12, Atlanta) will also go a long way in firing the interest of the research community.
Let's hope he's right. But let's also hope he and his fellow scientists don't forget that while their research inches forward, people of the area are suffering and dying because something in the environment is poisoning their bodies and mutating their DNA.



Anonymous Concerned Citizen said...

I would encourage the polycythemia vera victims not to participate in any future studies. The scientists appears to be using the victims as guinea pigs for their academic research and for the opportunity to get research money. Are the patients with the JAK2 mutation treated any differently than the patients without the JAK2 mutation? The answer is"No." We need studies that look for the cause of the polycythemia vera and for ways to prevent it. We do not need academic studies that tell the victims nothing and that do nothing to help the patients clinically.

October 26, 2007 at 4:44 AM  

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