What the ATSDR didn't say about its polycythemia vera findings
Dr. Dante Picciano posted the following article to his Web site today (click on the headline to go to the original). Because this is such critical information, I'm re-posting it here in its entirety. Those of us who attended last Wednesday's meeting in Hazleton at which some of the polycythemia vera study findings were selectively presented were subjected to considerable spin -- an apparent effort to downplay the full scope of the PV epidemic in Schuylkill, Luzerne and Carbon counties by emphasizing the counts of those cases of PV confirmed by either the JAK2 genetic mutation test or the expert evaluating panel rather than the total number of reported cases. The crucial point Picciano makes here is that to grasp just how elevated the incidence of the disease is in the tri-county area, we must compare the number of local cases with the number of cases registered statewide and nationally. And of course, the cases reported to cancer registries have not been confirmed by JAK2 mutation testing or evaluated by panels of experts. As Picciano has pointed out to me, we must compare apples to apples -- not apples to oranges.
131 CASES OF POLYCYTHEMIA VERA!
by Dante Picciano
The federal Agency for Toxic Substances and Disease Registry (ATSDR) and the Pennsylvania Department of Health (PADOH) released the results of a polycythemia vera (PV) investigation in this area on October 24, 2007. ATSDR reviewed PV cases that had been reported to the state cancer registry from 2001 to 2005. The public was given a one-page news release that stated that the ATSDR confirmed 38 cases of PV in Schuylkill, Luzerne and Carbon counties during that time period using a recently discovered genetic marker known as JAK2.
What the ATSDR and the PADOH omitted from the news release was that there were 97 PV cases from these counties in the registry. The ATSDR scientists told the audience that out of the 97 patients, 38 took part in the study, 30 could not be found, 16 refused to participate and 13 had died. The ATSDR scientists also identified 34 additional cases of PV in the counties that had not been reported to the state cancer registry.
Now, the state cancer registry had 97 PV cases and the ATSDR scientists found 34 additional PV cases not in the state cancer registry for a total of 131 PV cases in the tri-county area for the years 2001-2005. I did not hear the ATSDR or PADOH officials announce this fact at the meeting.
The ATSDR scientists stated that they estimated the expected incidence of PV to be approximately 1 in 100,000 per year and that the tri-county area had an estimated population of approximately 500,000. Using these estimates, the ATSDR scientists said they expected about 5 cases per year for a total of 25 cases for 2001-2005. Instead, they found 131 PV cases, more than five times what was expected. This finding was not mentioned at the meeting. The numbers used in these calculations were from the ATSDR, not from me.
The same selection criteria used to arrive at the people in the I in 100,000 estimate were used to arrive at the 131 figure. Few, if any, of the people used in the 1 in 100,000 estimate were tested for the JAK2 mutation.
One PADOH representative was asked if he considered the results of the investigation to be a public health concern. He said that the results were not a public health concern but that the PADOH would continue to monitor the situation. If a five-fold increase in the incidence of a rare cancer is not a public health concern, then I don’t know what is!
131 CASES OF POLYCYTHEMIA VERA!
by Dante Picciano
The federal Agency for Toxic Substances and Disease Registry (ATSDR) and the Pennsylvania Department of Health (PADOH) released the results of a polycythemia vera (PV) investigation in this area on October 24, 2007. ATSDR reviewed PV cases that had been reported to the state cancer registry from 2001 to 2005. The public was given a one-page news release that stated that the ATSDR confirmed 38 cases of PV in Schuylkill, Luzerne and Carbon counties during that time period using a recently discovered genetic marker known as JAK2.
What the ATSDR and the PADOH omitted from the news release was that there were 97 PV cases from these counties in the registry. The ATSDR scientists told the audience that out of the 97 patients, 38 took part in the study, 30 could not be found, 16 refused to participate and 13 had died. The ATSDR scientists also identified 34 additional cases of PV in the counties that had not been reported to the state cancer registry.
Now, the state cancer registry had 97 PV cases and the ATSDR scientists found 34 additional PV cases not in the state cancer registry for a total of 131 PV cases in the tri-county area for the years 2001-2005. I did not hear the ATSDR or PADOH officials announce this fact at the meeting.
The ATSDR scientists stated that they estimated the expected incidence of PV to be approximately 1 in 100,000 per year and that the tri-county area had an estimated population of approximately 500,000. Using these estimates, the ATSDR scientists said they expected about 5 cases per year for a total of 25 cases for 2001-2005. Instead, they found 131 PV cases, more than five times what was expected. This finding was not mentioned at the meeting. The numbers used in these calculations were from the ATSDR, not from me.
The same selection criteria used to arrive at the people in the I in 100,000 estimate were used to arrive at the 131 figure. Few, if any, of the people used in the 1 in 100,000 estimate were tested for the JAK2 mutation.
One PADOH representative was asked if he considered the results of the investigation to be a public health concern. He said that the results were not a public health concern but that the PADOH would continue to monitor the situation. If a five-fold increase in the incidence of a rare cancer is not a public health concern, then I don’t know what is!
Labels: polycythemia vera
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