The polycythemia vera deception

I've hesitated to share my reaction to the Agency for Toxic Substances and Disease Registry's and the Pennsylvania Department of Health's recent disavowal of the study that suggested a link between environmental factors and the area's high rate of polycythemia vera. I try not to write when angry, and recent events have me riled.

It seems clear what happened: A team of scientists found an apparent link between environmental factors and the area's high rate of polycythemia vera and released the findings without first getting the approval of the bureaucracies' bosses. Since it's politically unacceptable to draw any connection between the anthracite region's environmental degradation and the local health crisis, the bosses did the bidding of their political paymasters (and their financial benefactors) and declared the findings invalid.

But study author Dr. Ronald Hoffman, a professor at the Mount Sinai School of Medicine and a noted blood cancer expert, maintains that the data point to an environmental problem. Another study author told me the same thing -- but as an employee of one of the public agencies asked to remain unnamed out of fear of further upsetting the higher ups, who reportedly are already quite upset that the findings were made public.

We're witnessing what happens when politicians attempt to control science, as Dante Picciano elucidates in the latest posting from his Web site.

THE CONTINUING SAGA OF THE POLYCYTHEMIA VERA COVER UP
By Dante Picciano
www.dante7.com
December 26, 2007

Oh what a tangled web we weave,
When first we practise to deceive!

Sir Walter Scott

I have waited for the dust to settle before commenting on the latest episode in the cover up of our polycythemia vera cancer epidemic by the federal Agency for Toxic Substances and Disease Registry (ATSDR) and the Pennsylvania Department of Health (PA DOH).

On October 24, 2007 in Hazleton, PA, the ATSDR and the PA DOH reported the results of a study showing 38 cases of the rare polycythemia vera cancer in Carbon, Luzerne and Schuylkill counties. The agencies noted that the 38 cases were 52% higher than the 25 expected over the last five years.

The ATSDR circulated a news release that stated, "ATSDR found no link between environmental factors and PV in this area." Also, Senator Arlen Specter stated in a letter to the Director of the ATSDR and to the Secretary of the PADOH, "I am heartened by the study's findings that there are no environmental or occupational causes for the disease..."

At the meeting, Dr. Steve Dearwent of the ATSDR stated, "There's no conspiracy to hide any information." With reference to determining how elevated the 38 cases of polycythemia was, Dearwent said, "Quite honestly, the benchmark is fuzzy."

Oh what a tangled web we weave, when first we practise to deceive!

It was fuzzy all right. The ATSDR actually found 131 suspected cases of polycythemia vera in the study, more than five times what was expected (Polycythemia vera cancer epidemic, www.dante7.com, November 9, 2007).

In the November 16, 2007 issue of Blood, researchers from the ATSDR and Mount Sinai School of Medicine reported in an abstract that there were actually 131 possible cases of polycythemia vera found in the study, that residents living within 13 miles of the McAdoo Superfund site had a 4.5 times greater risk of developing polycythemia vera and that the data strongly suggested that an environmental influence led to the development of the polycythemia vera.

This latest report was not in agreement with the results presented at the October 24, 2007 meeting in Hazleton. The abstract indicated a much larger problem and it pointed to an environmental cause. What could the agencies do? They had to save face, they had to make Arlen Specter look good and they had to get the polluting industries off the hook.

"We essentially jumped the gun in releasing something we ultimately don't think is true," said Steve Dearwent. The research is a "stew" of expertise, he said, and "the ingredient we added was not good."

Oh what a tangled web we weave, when first we practise to deceive!

Dr. Dearwent explained that the findings were biased by failure to consider that many of the cases of polycythemia vera were diagnosed in people who had lived in multiple places during the "clean up" of the Superfund site.

In other words, there was a polycythemia vera cluster but only because people with this rare cancer moved to the same place, which just happened to be near the Superfund site http://blog.wired.com. Dr. Dearwent wants us to believe that people who suffer from polycythemia vera tend to flock together and roam the country side looking for a place near a toxic waste site to settle.

Oh what a tangled web we weave, when first we practise to deceive!

However, there was another major problem for Dr. Dearwent, the ATSDR and the PA DOH. Dr. Ronald Hoffman, the lead investigator of the study, is not a federal or state employee. He is a professor at Mount Sinai School of Medicine in New York and not subject to influence by the government agencies. Dr. Hoffman refused to go along with the ATSDR's back pedaling and insisted that the data does in fact point to something in the environment as the cause of the polycythemia vera in this area.

Dr. Hoffman stated, "Based upon the data, there's significant concern that there is something in the environment leading to the development of polycythemia vera in that area."

Oh my, what was Senator Specter to do? The lead investigator refused to back pedal and play along with the senator's absurdity that he was "heartened by the study's findings that there are no environmental or occupational causes for the disease."

Senator Specter then announced that he, U.S. Senator Bob Casey and U.S. Representative Tim Holden had sent a letter expressing concern over the release of the abstract and urging officials to make clarifications.

Then in a bit of understatement, Rep. Holden admitted some confusion over contradictory results between the October meeting and the latest report.

Oh what a tangled web we weave, when first we practise to deceive!

Holden then stated, "Don't ask me to answer any questions because I don't know any more than you." Oh really! I thought that it was our representative's job to know what was going on in his district.

There is no doubt in my mind that our elected officials are working frantically to protect the polluting industries that are causing the polycythemia vera in this area. There is no other rational explanation for the deceptive practices detailed above.

I have also noticed an almost complete absence of State Senator Jim Rhoades and State Representative Dave Argall from any involvement with this study in their respective districts. They seem too busy having their pictures taken giving away our money with cardboard checks.

I hope that you remember the actions of Specter, Holden, Rhoades and Argall the next time that they are up for re-election.

How about Cancer Victims' Day, Rep. Argall?

'BENEFICIAL USE' DAY
By Dante Picciano
www.dante7.com

Did you know that August 29, 2007 in Pennsylvania was "Environmentally Beneficial Use of Waste Coal as an Alternative Energy Source Day?" This date was designated as such on July 7, 2007 by Resolution No. 363 of the Pennsylvania House of Representatives. July 7th was also the second anniversary of the notorious illegal pay raise that our representatives gave themselves in the early morning hours of July 7, 2005.

The Resolution informs us that the waste coal energy industry has beneficially utilized more than 73 million tons of by-products for abandoned mine land reclamation. Translation: This industry has burned millions of tons of waste coal mixed with waste solvents, has generated millions of tons of fly ash and has dumped the fly ash waste into unlined abandoned mines.

A recent report by the Clean Air Task Force and EarthJustice showed that disposing fly ash in mines is contaminating water supplies throughout Pennsylvania. In 10 of 15 mines examined across the state, groundwater and streams near areas where fly ash, or coal combustion waste, was placed had levels of arsenic, lead, cadmium and selenium and other pollutants above safe levels.

The Resolution passed the House by a vote of 190 to 7 and our own representative, David Argall, voted for it. You should note that Mr. Argall received at least $12,500 in campaign contributions from corporate polluters and $35,770 from law firms and lobbyists in 2006 (Source: www.followthemoney.org).

Mr. Argall should introduce a resolution in the House of Representatives designating a day in 2008 as "Polycythemia Vera Victims' Day" for the people afflicted with the cancer in this area. In fact, Mr. Argall should introduce a resolution designating the entire year of 2008 as "Victims' Year" in honor of the thousands of people afflicted with cancer, asthma and other diseases caused by the polluting industries in Pennsylvania. However, I doubt that this will happen because not enough victims have contributed to Mr. Argall's re-election campaign.

I also find it interesting that our representatives have time to pass resolutions honoring corporate polluters but don't have time for property tax reform or bridge and highway repair.

FEDS DISAVOW SUPERFUND-CANCER LINK FINDINGS

Yesterday I reported that the abstract of the tri-county polycythemia vera study that will be presented Monday at the American Society of Hematology's annual meeting asserted a connection between a local cluster of the rare blood malignancy and the McAdoo Associates Superfund site. Well, today the Agency for Toxic Substances and Disease Registry is saying those findings are wrong. From an Associated Press story by Mike Stobbe and Michael Rubinkam, filed this afternoon:

Officials abruptly backpedaled Friday on a federally funded health study that suggests an environmental link to a cluster of rare blood cancer cases in northeastern Pennsylvania, saying an abstract that made the claim was mistakenly released to the public. ...

... Steve Dearwent, a government epidemiologist, said Friday that the abstract was written early in the summer and that subsequent analysis of the data did not support the conclusion of an environmental link — although he added that still is a possibility. He said the abstract should have been revised before it was submitted.

"We're going to have to retract the abstract to correct the record because it is erroneous information," said Dearwent, chief of health investigations for the Agency for Toxic Substances and Disease Registry, the federal agency that oversaw the study. "It was preliminary and hadn't been vetted, and unfortunately it got submitted unbeknownst to most people here."

Dearwent said additional research might prove an environmental link. And the study's lead researcher, Dr. Ronald Hoffman of the Mount Sinai School of Medicine in New York, said Friday that the data does in fact point to something in the environment.

"Based upon the data, there's significant concern that there is something in the environment leading to the development of polycythemia vera in that area. The nature of what's causing it is unknown at the moment and is going to require further study," he said.

MEDICAL RESEARCHERS DRAW LINK BETWEEN LOCAL POLYCYTHEMIA VERA EPIDEMIC, SUPERFUND SITE

The American Society of Hematology's annual meeting and expo will open in Atlanta on Saturday, and the abstract for Monday's session on the local three-county polycythemia vera study has been posted online. Apparently the researchers believe they have found a connection between the high local occurrence of the rare blood malignancy and the McAdoo Associates Superfund site, as evidenced by this excerpt (bold emphasis mine):

Of the 37 cases who met both clinical and molecular criteria (JAK2V617F+) for a diagnosis of PV, 18 (49%) had resided within a 13 mile radius of the McAdoo Associates Superfund Site (MASS) for >5 years during the period 1970-95. The MASS was the home of a hazardous waste recycling business from 1975-79 where large quantities of toxic chemicals were dumped directly into old mine shafts.The Environmental Protection Agency completed surface remediation in the early 90s, but was unable to determine the extent and fate of the chemicals poured into the mine. A spatial scan statistical analysis identified this area as a significant cluster and individuals living within this area had a 4.5 times greater risk of developing PV compared to individuals residing in the remainder of the 3 counties (p<0.001).

That seems to contradict what the federal Agency for Toxic Substances and Disease Registry stated in its press release about the study's findings: "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." It also contradicts what U.S. Sen. Arlen Specter (R-Pa.) wrote in his Oct. 22 letter to ATSDR and the Pa. Department of Health following his briefing on the findings: "I am heartened by the study's findings that there are no environmental or occupational causes for the disease ... ."

Why didn't the ATSDR and PADOH give us this information at the Oct. 24 public meeting in Hazleton, or since then? Are they trying to keep those of us whose health may have been damaged by the site from knowing the truth? And now that the truth is out, what will our elected leaders such as Specter and our public health agencies do to help us?