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Clinic directors across Appalachia have been telling NPR the same thing for months now - something is terribly wrong. They're seeing more and more advanced cases of the deadly coal miners' disease black lung. Nationwide, less than a hundred cases were reported to the government in the last five years. Federal researchers confirmed today a recent spike at one clinic in Kentucky, but clinics around Appalachia contacted by NPR say there have been at least a thousand cases in that time. Here's NPR's Howard Berkes.
HOWARD BERKES, BYLINE: One of those case files carries the name Mackie Branham, and he was one tough coal miner. In 19 years underground, the 39-year-old from Elkhorn Creek, Ky., ran monstrous mining machines. Sometimes he worked double shifts and seven straight days. His gallbladder was removed one day. He says he was back at work the next. But listen to Branham now, struggling to breathe, struggling to talk about a family legacy of black lung.
MACKIE BRANHAM: I'll probably be the first one to be this bad in the family.
BERKES: And what do you mean - this bad?
BRANHAM: For it to actually be this progressive and in this bad of shape. I mean, don't get me wrong. They can't breathe, but they can still get up and walk around and do stuff. More I talk, the more I get out of breath. It's a lot of pressure in my chest all the times.
BERKES: Branham sits in a clinic in Coal Run Village, Ky. A computer screen shows an X-ray of his damaged lungs, with large knots of fibrotic tissue. The image lights up his tired face, reddened eyes and the reflective stripes on his blue miner's pants. He still wears them, he says, even though he stopped working in March.
BRANHAM: I probably will till the day I die. I've always been a coal miner. And if they would give me lungs so I could go back tomorrow, I would. It's just in my blood.
BERKES: He has progressive massive fibrosis, or complicated black lung. It's the worst stage of the disease. It's incurable, and it's fatal. Miners get it from inhaling coal mine dust. And it hit Branham at a much younger age and is getting worse more quickly than what used to be typical. There's nothing typical, says Brandon Crum, the clinic's radiologist, about the disease he's detecting now.
BRANDON CRUM: I think the percentage of black lung that we're seeing now here in Central Appalachia is unprecedented in any recorded data that I can find anywhere. In this clinic, where we're roughly around nine to 10 percent complicated rate, which is around three times higher than even the highest reported numbers.
BERKES: Federal researchers test thousands of minors for the disease, and they've reported 99 cases of complicated black lung across the entire country in the last five years. And yet Crum's little clinic alone, in just the last two years, diagnosed 70 cases. NPR checked other clinics across Appalachia. Eleven responded from Virginia to Pennsylvania. Combined, they told us, they've diagnosed 962 cases so far this decade. That's 10 times the official count.
RON CARSON: Something's going on. Something has happened that has caused these numbers.
BERKES: Ron Carson manages three clinics in Virginia, which report 644 four cases of complicated black lung in just the last three years. He used to see it in miners in their 60s and 70s with decades underground. Now they're as young as 30 with less than 10 years of mining.
CARSON: I'm not an epidemiologist or a scientist or a doctor. I just see the results that comes through the doors, and something is going on. Something major's going on.
BERKES: Brandon Crum in Kentucky was so alarmed he convinced the National Institute for Occupational Safety and Health to investigate. Epidemiologist Scott Laney is publishing findings tomorrow.
SCOTT LANEY: The current numbers are unprecedented by any historical standard. We have not seen cases of this magnitude ever before in history and in Central Appalachia. The numbers of cases that we were seeing - and then with these additional cases - far exceeds anything that we were aware of.
BERKES: So what happened? First of all, the federal researchers tracking the disease have missed hundreds of cases. By law, they're tracking program only X-rays working miners, and the testing is voluntary. Virginia miner Charles Stanley spent 30 years mining coal, but didn't get his first chest X-ray until he was out of work.
CHARLES STANLEY: If you're working, and you go and have that stuff done, and they find - and the company finds out, they'll find a way to get rid of you. As long as you're working and producing, you're a asset. But now when you get something wrong with you, you become a liability, and they'll find a way to get rid of you.
BERKES: That's actually against the law, says Bruce Watzman of the National Mining Association.
BRUCE WATZMAN: Those results are not shared with any employer. It's at the miner's discretion - the way the program operates today - when and if to divulge that information.
BERKES: Still the risk is widely believed and feared. More than 80 percent of Kentucky's coal miners stay away from the government's testing program, According to the program's reports, so most working miners are missing from the federal count, along with those retired or laid off. More than 40,000 lost their jobs since 2010. Six hundred mines closed with little hope of reopening. Miners then go to clinics, hoping they'll qualify for black lung payments and health care. Last year alone, 3,000 showed up at Ron Carson's Virginia clinics.
CARSON: I'm seeing miners now feeling that there is no hope. And now that they are unemployed or the coal mine laid off or shut down, well, I need to go in and see about my black lung benefits. So they come in the door, and we do the chest X-rays, and there it is.
BERKES: So there are more cases now of progressive massive fibrosis - of complicated black lung - because more miners are getting tested.
ROBERT COHEN: But any way that you cut it, this is more disease because we haven't seen numbers of this magnitude.
BERKES: Pulmonologist Robert Cohen of the University of Illinois at Chicago has tracked black lung for 30 years.
COHEN: And I can't say that I've heard really anything worse than this in my career.
BERKES: Cohen is so alarmed by NPR's count that he's planning a thorough study of black lung clinics nationwide to get an accurate number of sick miners like Mackie Branham, who's left gasping for air and grasping for words.
BRANHAM: Me - I've never been scared of death. It don't bother me a bit. It's just not seeing my kids grow up, but if I had it to do over, I would do it again if that's what it took to provide for my family as long as I have.
BERKES: Branham hopes for a lung transplant, which may give him five to 10 more years of life. Howard Berkes, NPR News.
CORNISH: Tomorrow we'll look at the mining conditions that destroy lungs and the strain on the federal benefits program for miners.
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