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
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.
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
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.
Labels: cancer clusters, politics, polycythemia vera
posted by Sue Sturgis at
8:07 PM
4 Comments:
As we still live here and breathe the air, shower in the water and risk whats left of our lives.
ATSDR and POLITICS stand in the way of truth and facts!
Why the HELL don't they buy us out so we can salvage whats left of our lives?
As the word of the PV cluster went national, in the Associated Press I felt I needed to check into it on the internet. I was born in Tamaqua Pa. in 1964 and my wife was born in 1966. At the age of 23 I was diagnosed with testicular carsamoma, treated at miners memorial for 2 years by Dr. Paul Roda one of the Oncologist that participated in the research study, at that time 3 of my friends where diagnosed with the same . Over the 38 years I lived in Tamaqua I watched many friends and family Die Cancer related Deaths. One particulary sticks out in my mind. She told me as a young man of 15 Quote ( It's In The Water ) .. At that time I was not sure what she was saying , Months later she passed from brain cancer. Through the years I began to understand . Mcadoo assc. supper fund sight sets on the otheside of the Mountain of Still Creek Dam, where Tamaqua , Hometown, Get there water from ! I'm not an engineer in water Hydrolics , but with all the mine shafts and run off ,it's not hard see , 7 years ago my wife and I moved to South Carolina . In 2007 she was Diagnosed with Breast Cancer.. She has undergone Major surgeries , radiotion , and chemo . My latest CAT scan shows 8mm nodule on my Liver . I'm sure there are many other stories the same as Ours . I'm just glad we moved .. I hope this breif look into my life will help you make the desicion to Get Out ! While your children are young. They do not need to suffer !
Thanks For Your Time,
dwest64@charter.net
My mother died due to complications of PV in 1997. She lived in Pottsville, PA Scuylkill County. Your article is very interesting..........
I was recently diagnosed with PV and like most people in this day-n-age would do, is research the internet for all things PV.
Being a lifelong resident of Pa., I was concerned about this cluster. It should be noted I reside in the central western region but in 2009 I made multiple trips with several stays in Wilkes Barre. Within 10 months of my last business in W-B, I received conformation of my PV, however, my symptoms (unknown to me in relation to PV - in fact, I never heard of this until diagnosed) came about 4 months after my last trip. I basically was ill for 6 months without explanation.
Anyway, I'm curious as to whatever fact finding will come forth in days to come on PV and the high concentration in the Wyoming Valley.
Explanations may be hard to come by but the statistics are hard to ignore.
I'm sure our state wants to avoid an Erin Brockovich-type setting. After all, if they wait me out, I'm promised a much shorter life anyway. I don't picture a source resolution anytime soon.
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