Coal region still far from finding cause for mysterious cancer

http://www.mcall.com/news/local/allentown/mc-tamaqua-cancer-cluster-20110618,0,2997474.story
By Andrew McGill, OF THE MORNING CALL
10:35 p.m. EDT, June 18, 2011

Researchers studying a cancer cluster say they’re still mastering the basics in an investigation that’s stretched five years.

Five years have passed since federal researchers first came to Pennsylvania’s coal region seeking the origins of a mysterious disease.

And while numerous government agencies, hospitals, doctors and universities have joined the hunt, a cause remains elusive, those gathered in Tamaqua for an update of the studies found out Wednesday.

“PV” is as well-known as anthracite in the Pennsylvania coal region, where the Centers for Disease Control and Prevention say the rare form of cancer has taken unusually strong root. Estimated to affect one in 100,000 Americans — though researchers aren’t firm on that number — polycythemia vera has been known to hit four families on a single street in Tamaqua.

The victims have little in common, researchers say. They don’t have the same jobs, the same ancestry, the same lifestyle. The only things they share are age — the disease strikes few under 60 — and an attachment to the three-county region of Carbon, Luzerne and Schuylkill counties, home to one of the CDC’s few confirmed cancer clusters.

And to hear scientists speak at a community meeting Wednesday, proving anything further could be slow going.

At the Tamaqua Community Center, researchers said they’re still struggling with the basics of the investigation: finding people with PV, winnowing out the false positives and narrowing down possible environmental causes.

In a University of Pittsburgh study seeking to confirm legitimate cases of the blood cancer, only 27 patients out of the 164 queried agreed to participate. The numbers also are low for a sister study at Drexel University in Philadelphia, which has gotten 26 positive responses out of 117.

To date, researchers have diagnosed 372 cases.

But many of the names provided to researchers by the Pennsylvania Cancer Registry are out of date, either because of death or a change in address. Reporting irregularities mean researchers still aren’t sure how prevalent the cancer is in the general population.

“The primary data collection is very tedious,” said Carol Ann Gross-Davis, a researcher at Drexel. “But things are still progressing. Since Wednesday, we got two more cases. That’s how we have to count them.”

Progress has been similarly slow for state Department of Environmental Protection field workers, who have collected water, soil and sediment samples from homes of PV patients, nearby power plants and area water sources. They’ve found little, with water tests showing scattered elevations of lead and nitrates and a few homes showing moderate spikes in radon.

The one place they haven’t looked? The air. That’ll be left to private contractor Peter Jaran, who’s reproducing some of DEP’s tests and extending the search into the atmosphere, heavy with the grit of several nearby power plants.

But the $8 million in federal funding for the investigation includes a deadline, and several projects are coming due. Gross-Davis said her study, which seeks to find demographic data among PV patients, was supposed to end in September, far too early.

She’ll apply for an extension. But in an investigation that has grown many limbs — funding is split among a dozen separate projects and 10 organizations — coordinating efforts with other researchers has gummed the gears in finding PV’s cause.

At the same time, funding for the Community Action Committee, the investigation’s main public relations link to the coal region community, has nearly run out. Organizer Joe Murphy said the government has denied his request for $50,000 to keep the program going for another year, leaving him scrambling to find donors.

The group runs a PV support organization and distributes information on the progress of the studies.

The need for communication couldn’t have been clearer Wednesday. Residents, who have grown far too familiar with phrases like “allele burden” and “causal factors,” threw out suggestions: Have you looked at heredity? How about coal ash?

Frustration mounted.

Amid their questions, officials began hedging that they may never find the smoking gun that leads to PV.

That keeps Dr. Henry Cole awake at night. A paid adviser to the Community Action Committee, he’s seen the government muddle around and throw its hands up at the end of an investigation before. He doesn’t want the same fate for Tamaqua.

“There’s a distinction between not finding evidence and saying there’s no problem,” he said. “That’s been done all  over this country.”

andrew.mcgill@mcall.com
610-820-6533