Feds confirm Hometown-area blood cancer cluster, but no urgent action taken for public health despite obvious risks

The federal Agency for Toxic Substances and Disease Registry (ATSDR) held a public meeting in Hazleton, Pa. last week to deliver the final findings of its study into polycythemia vera (PV) rates in Schuylkill, Carbon and Luzerne counties. I wasn't able to attend because of other work obligations, but I had a chance to talk with people who were there, read the news reports, and review the materials publicly released earlier this week. I wanted to share my initial thoughts about what I've heard and read.

In short, ATSDR confirmed what it first reported last October: The tri-county area of Schuylkill, Luzerne and Carbon counties in eastern Pennsylvania's anthracite coal mining region has a significantly elevated incidence of the rare blood cancer -- about four times the state's rate, according to data from the state cancer registry. The agency also found three PV "hotspots" within the tri-county area where the PV incidence rate was even higher than the tri-county rate.

Unfortunately, it's not possible to directly compare the PV rate in the hotspots to that of the rest of the tri-county area or the state. That's because the researchers calculated the hotspots based only on those cases they actually confirmed as PV via JAK2 genetic testing and a medical records review by an expert panel. There's no such requirement for registry cases.

The confirmation process dramatically reduced the number of PV cases the researchers included in their study. Of the 97 tri-county cases reported to the cancer registry at the survey's start in December 2006, only 38 patients agreed to participate. The remaining 59 people either declined to participate, had died, or could not be found. The researchers also added another 24 people who were not in the registry but were found in other ways. (As it turns out, doctors in some parts of the area were less likely to admit PV patients to the hospital for diagnosis, and the registry relies on hospital reports.)

Of the 62 PV patients who agreed to participate in the study, 33 were confirmed to have PV. Seventeen others were determined not to have the disease, while 12 people did not have enough information in their medical records to determine what illness they're suffering from. It is those 33 confirmed cases of PV that the ATSDR focused on. The first map below shows how the individual confirmed cases are distributed throughout the tri-county area, and the following one shows ATSDR's designated PV hotspots (click on images for a larger version):

The PV hotspot that runs roughly from Tamaqua north to Hazleton encompassing Hometown (Area 2) was the only one with enough cases to be determined statistically significant. The other Schuylkill County hotspot (Area 1) lies north and west of the county seat of Pottsville, from the Frackville area in the north to the area around Minersville in the south. There's also reportedly a hotspot in eastern Carbon County, in the Penn Forest Township area east of Jim Thorpe (Area 3).

How elevated are the rates in these hotspots? Since the researchers couldn't directly compare the confirmed cases to the registry cases because of the differing criteria used for counting, they used two other methods to calculate comparative rates for the cluster area. Here is how ATSDR researcher Dr. Vince Seaman described the process in an e-mail to me:

1. Compare cluster area to the REST of the tri-county area:

Cluster area Rate: 15 cases in cluster area (approx. 86,000 people) over 5 years = 3.5
Outside cluster area = 18 cases (414,000 people) over 5 years = 0.87
Ratio = 3.5/0.87 = 4.0

2. Compare the cluster area to the ENTIRE tri-county area:

Cluster area Rate: 15 cases in cluster area (approx. 86,000 people) over 5 years = 3.5
Entire tri-county area = 33 cases/ 500,000 people over 5 years = 1.3
Ratio = 3.5/1.3 = 2.7

Seaman noted that these are only approximations since they're not adjusted for age or gender, and men and older people are more likely to have PV. He also pointed out that these numbers are conservative, since there are 66 registry patients who were not interviewed -- and six of them are in the identified high-rate area. Nor did the researchers account for historical addresses, which would help shed light on whether something happened during a certain time frame to influence PV rates.

The researchers state that they did not find a link between the PV cases and reported chemical exposures, or any pollution sources common to all of the high-rate areas. At the same time, they also noted that the study "was not designed to look for environmental exposures or other factors that could explain the high rates of PV." However, the researchers did acknowledge that there are serious environmental threats in the area studied, and shared this map at the public meeting:

"Still a lot of questions to be answered," Seaman concluded in the e-mail.

I agree. Some of the questions on my mind:

* Why do the researchers say in the summary of their investigation that the "cause of PV is not known"? Scientists know what environmental contaminants have been linked to an excess risk of PV -- namely, benzene and related hydrocarbons, formaldehyde and other solvents, petroleum refinery pollution, and radiation, as ATSDR acknowledges on its own PV investigation website. They also know of at least one class of chemicals that causes the specific genetic mutation found in PV -- namely, polycyclic aromatic hydrocarbons (PAHs). At the same time, there are likely sources of these pollutants in the communities studied, since PAHs are among the toxins produced by the fluidized bed combustion systems used in seven waste-coal-burning power plants located across the tri-county area.

* Now that we know people living in certain communities have a dramatically elevated rate of a disease that's been associated with environmental contamination, what are the government regulators, public health authorities and elected officials going to do about it? Test the air? The water? Chemical levels in people's bodies? Offer some advice on avoiding toxic exposures? Not so far. The only official response to the study has been U.S. Sen. Arlen Specter's announcement that he is seeking $262,000 for the Drexel University School of Public Health to investigate possible environmental causes -- in a press release that still had not been posted on the senator's newsroom website as of today. Of course, he probably isn't eager to publicize the fact that the continuing failure of Pennsylvania's leaders to protect the environment and public health from pollution has literally sickened residents.

* What exactly does Pennsylvania's senior senator hope to learn by spending $262,000? One government scientist told me that he estimates a study of the scope needed here would cost at least $2 million a year over the course of several years. Other important questions about Specter's role have been raised by local environmental health advocate Dante Picciano, who noted in his recent letter to the Times News that it's a bit disconcerting that the same politician who was so eager to jump to the incorrect conclusion that there was no environmental link to the PV epidemic is now making critical decisions about how the problem will be studied.

* While politicians focus on finding research dollars, what about the people who were actually made sick by a combination of corporate irresponsibility and government negligence? How many of them need assistance with medical bills, or household bills because they're unable to work? Why is there no initiative to allocate public funds to help affected people?

* Why are researchers and public health officials still focusing solely on PV when other health problems are also occurring at unusually high rates in the tri-county area? According to a study by the state health department, Luzerne's thyroid cancer rate is 45 percent higher than the state's, and the county also has significantly elevated rates of stomach, colon/rectum, larynx, bronchus/lung, uterine, prostate, and uterine cancer, as well as leukemia, another cancer of the blood. Schuylkill County has significantly elevated rates of cancer of the buccal cavity/pharynx, colon/rectum, liver, pancreas, cervix, uterus, and prostate, as well as Hodgkin's lymphoma, a cancer of the lymph nodes. There are also anecdotal reports of localized clusters of other illnesses including thyroid disease and autoimmune disorders. Why aren't officials paying attention to the area's broader public health concerns, especially since there's now clear evidence something's amiss?

* Why are public health officials showing no interest in the other counties of Pennsylvania where polycythemia vera has been found to occur at an unusually high rate? A statistical analysis of state cancer registry data that I conducted last year with the help of Dr. Samuel Lesko at the Northeast Regional Cancer Institute found that Blair and Cambria counties in south-central Pennsylvania also have an unusually high rate of polycythemia vera rate -- not to mention three waste-coal-burning power plants along their shared border. Don't the public health authorities think this is significant?

More to come. Please stay tuned.