Researchers making new push in cancer cluster search
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Waldkirch By Andrew McGill, Of The Morning Call
11:26 p.m. EDT, April 30, 2012
After a long year, Pennsylvania’s coal country still knows only three things for sure.
People are getting cancer in the region, rare cancer. They’re dying. And no one can say why.
In a Centers for Disease Control investigation that has already stretched seven years and is likely to last several more, researchers are returning to Carbon, Luzerne and Schuylkill counties in force next week, setting up shop in hospitals to interview the sick and collect data.
Their question is the same as last year’s, and the year before that, and the year before that: Exactly how many people have the blood-thickening cancer that, while supposedly rare, seems all too common in the three counties?
“We’re really hoping to get one last wave of interviews and consents here,” said Jeanine Buchanich, a researcher at the University of Pittsburgh working with the CDC. “As it draws to a close it’s growing more and more important that people get back to us.”
Polycythemia vera puts the body’s blood-producing cells into overdrive, clogging arteries with up to five times as many red blood cells as normal. Itching, headaches and fatigue are the milder symptoms — if left untreated, the cancer can form fatal blood clots.
The most popular treatment tends to the medieval: bloodletting, which goes by “phlebotomy” these days and has been shown to reduce congestion in arteries. But a fancier name doesn’t make the process any more pleasant, and patients need treatment as often as once a month.
Nationwide, researchers think only one in 100,000 people have the disease. Scientists say that percentage is much higher in coal country, and the CDC has officially labeled the area a cancer cluster since 2005, a rare designation from a cautious agency.
More than $8 million has been spent to find out what’s making people sick. Two universities — the University of Pittsburgh and Drexel University — are conducting studies. A pair of hospitals are running their own tests.
It hasn’t been easy going.
Of the 340 potential Polycythemia vera patients Pitt scientists have contacted, only 80 have agreed to hand over their medical records. Even the promise of $50 gift cards couldn’t persuade the 30 people who refused to participate, or the hundreds more who haven’t responded.
Buchanich hopes her full-court press for more participants May 8-10 will change a few minds, but it is looking likely the study will end with far fewer subjects than she had hoped.
“We’re hoping to get that number as high as we can before we have to close the study,” Buchanich said. “We’ll be kind of dependent on how this goes.”
Then there’s the local community, which has watched its seat at the table shrink as the investigation continues. Funding for a liaison group linking research scientists and residents ended last year, and volunteers are still months away from securing the nonprofit status that would allow them to raise money.
In the meantime, many residents have doubts about the state Department of Environmental Protection’s investigation into environmental factors. Pennsylvania’s coal country has no lack of those, with toxic dumps from a long industrial history still festering in hills and crannies. Every resident has a theory for which spill or leak made their neighbors sick.
But a 28-point list of concerns to the CDC — why aren’t investigators sampling air inside homes? Will coal dust be considered as a possible cause? — was largely dismissed by the agency, with officials siding with their hired contractor.
Local activists say the lack of funding means they won’t be able to weigh in on study methodology before tests are conducted. As of late, federal officials haven’t even told them what’s going on, they say.
It was the residents who first brought to light the fact that their friends were dying, said Joe Murphy, coordinator of the Community Action Committee, a coal region group.
“And now we’re being told, ‘Thanks, see you later,'” he said. “We’re tossed to the side.”
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