Greg Kelly’s grandson, Caden, scampers to the tree-shaded creek behind his grandfather’s house to catch crawdads, as Kelly shuffles along, trying to keep up. Kelly’s small day pack holds an oxygen tank with a clear tube clipped to his nose. He has chairs spaced out on the short route so he can stop every few minutes, sit down and catch his breath, until he has enough wind and strength to start out again for the creek.

“I just pray that the Lord give me as much time as I can with him,” Kelly said, his eyes welling with tears. “He just lightens my life. I want to be as fun with him as I can. And do as much as I can with him.”

Caden is 9 years old, and even at his age he knows what happened to his paw-paw at the Harlan County, Ky., coal mines where Kelly labored as a roof bolter for 31 years.

“That coal mine made your lungs dirty, didn’t it?'” Kelly recalled Caden asking. “Yeah it did. … And I can’t breathe and I have to have my backpack to breathe,” Kelly told him.

Former coal miner Danny Smith and his family used to ride their ATVs and go camping on this reclaimed strip mining site in Pike County, Ky. But Smith is no longer able to do such things because of his advanced black lung disease.

It’s a familiar tale across Appalachia. Two hours north and east, beyond twisting mountain roads, Danny Smith revved up a lawn mower. He wore jeans, a T-shirt and a white face mask stretching from eyes to chin, and he pushed only about 15 feet before he suddenly shut off the mower, bent to his knees and started hacking uncontrollably.

“Oh God,” he gasped, as he spit up a crusty black substance with gray streaks, and then stared at the dead lung tissue staining the grass. Still coughing and breathing hard, Smith settled into a chair on his porch and clipped an oxygen tube to his nose.

Since being diagnosed with advanced black lung, Smith is able to mow his lawn only a few minutes at a time before needing to catch his breath.-NPR

After spending just 12 years underground, his lungs are so bad he faces what coal miners decades older and with decades more in mining have endured. His lung tissue is dying so fast, his respiratory therapist says, it just peels away.

“I’m terrified,” Smith said, as he remembered his father’s suffering when he was struggling with the same coal miner’s disease.

“I sure don’t want to go through what he went through. I seen a lot of guys that died of black lung and they all suffered like that.”

Kelly says he used to wrestle with his grandson before he was diagnosed with black lung disease. Fishing is one of the few activities he is still able to do.Rich-Joseph Facun for NPR

A multiyear investigation by NPR and the PBS program Frontline found that Smith and Kelly are part of a tragic and recently discovered outbreak of the advanced stage of black lung disease, known as complicated black lung or progressive massive fibrosis.

A federal monitoring program reported just 99 cases of advanced black lung disease nationwide from 2011-2016. But NPR identified more than 2,000 coal miners suffering from the disease in the same time frame, and in just five Appalachian states.

And now, an NPR/Frontline analysis of federal regulatory data — decades of information recorded by dust-collection monitors placed where coal miners work — has revealed a tragic failure to recognize and respond to clear signs of danger.

For decades, government regulators had evidence of excessive and toxic mine dust exposures, the kind that can cause PMF, as they were happening. They knew that miners like Kelly and Smith were likely to become sick and die. They were urged to take specific and direct action to stop it. But they didn’t.

“We failed,” said Celeste Monforton, a former mine safety regulator in the Clinton administration who reviewed the NPR/Frontline findings.

Kelly and his wife, Lisa, say grace before Sunday dinner.Rich-Joseph Facun for NPR

“Had we taken action at that time, I really believe that we would not be seeing the disease we’re seeing now,” said Monforton, now a workplace safety advocate who teaches at George Washington and Texas State universities.

“Having miners die at such young ages from exposures that happened 20 years ago … I mean this is such a gross and frank example of regulatory failure.”

It’s an “epidemic” and “clearly one of the worst industrial medicine disasters that’s ever been described,” said Scott Laney, an epidemiologist at the National Institute for Occupational Safety and Health.

“We’re counting thousands of cases,” he said. “Thousands and thousands and thousands of black lung cases. Thousands of cases of the most severe form of black lung. And we’re not done counting yet.”

“They’re essentially suffocating while alive”

This advanced stage of black lung leaves lungs crusty and useless, says Dr. Robert Cohen, a pulmonologist at the University of Illinois, Chicago who has spent decades studying black lung and PMF disease.

“You have a much harder time breathing so that you can’t exercise,” Cohen noted. “Then you can’t do some simple activities. Then you can barely breathe just sitting still. And then you require oxygen. And then even the oxygen isn’t enough. And so … they’re essentially suffocating while alive.”

“There’s a lot of memories here, some good, some bad,” says Smith, while reflecting on his years working at the now defunct Solid Energy mine in Pike County.Rich-Joseph Facun for NPR

The toxic mine dust that causes severe disease isn’t coal dust alone. It includes silica, which is generated when miners cut sandstone as they mine coal. Many coal seams in central Appalachia are embedded in sandstone that contains quartz. And when quartz is cut by mining machines, it creates fine and barbed particles of silica dust — fine enough to be easily inhaled and sharp enough to lodge in lungs forever.

In the past 30 years, the biggest coal seams were mined out in Appalachia, leaving thinner seams coursing through sandstone.

Advanced Black Lung Cases Surge In Appalachia

BLACK LUNG RETURNS TO COAL COUNTRY

Advanced Black Lung Cases Surge In Appalachia

Black Lung Study Finds Biggest Cluster Ever Of Fatal Coal Miners' Disease

INVESTIGATIONS

Black Lung Study Finds Biggest Cluster Ever Of Fatal Coal Miners’ Disease

“All the good seams were gone because there were hardly no solid seams of coal left,” the 54-year-old Kelly remembered. “And there [was] more rock in the coal.”

The silica dust that resulted from cutting that rock was far more dangerous than coal dust alone.

Silica is “somewhere around 20 times more toxic and can cause disease much more rapidly,” said Laney.

The NPR/Frontline investigation found thousands of instances in which miners were exposed — not just to coal dust but to dangerous levels of toxic silica dust. The federal Mine Safety and Health Administration’s own data chronicle 21,000 instances of excessive exposure to silica since 1986.

At the same time, NPR identified black lung diagnoses involving miners in their 30s who also experienced rapid progression to the advanced stage of PMF. Smith says he was diagnosed with PMF at 39. NIOSH has confirmed this trend in its studies.

“We’ve got the bodies to prove it”

NPR/Frontline analyzed 30 years of data collected by federal regulators. They measure coal and silica dust where miners are working, and in 85 percent of the samples collected silica was at safe levels. But for that other 15 percent — which amounts to 21,000 dust samples — the data show that miners were exposed to excessive silica levels that violated federal health standards.

“That’s what causes disease, is the excessive exposure,” said Jim Weeks, an industrial hygienist and mine dust specialist at MSHA in the Obama administration and at the United Mine Workers union before that.

Had we taken action at that time, I really believe that we would not be seeing the disease we’re seeing now.

Celeste Monforton, former Clinton administration mine safety regulator

An NPR review of mine dust regulations also found that federal enforcement does not directly address silica dust. If regulators measure too much silica in mine air, they place coal mines on much tougher limits for coal dust. That’s supposed to lower the silica exposure because coal and silica dust are often mixed.

But our investigation found that this indirect approach to controlling silica dust didn’t always work. MSHA’s 30 years’ dust sampling data show dangerous levels of silica or quartz where miners were working close to 9,000 times, even after coal mines were required to meet reduced limits for coal mine dust.

“They didn’t pay sufficient attention,” Weeks concludes. “And …we’ve got the bodies to prove it. I mean these guys wouldn’t be dying if people had been paying attention to quartz. It’s that simple.”

A coal processing plant sits abandoned near Smith’s home in Pike County.Rich-Joseph Facun for NPR

We found another example of overexposure in MSHA’s data. Each time federal mine inspectors issued citations for too much silica, which they did only a fraction of the time, they included an estimate of how many miners were affected. A review of those data shows more than 9,000 workers were exposed to silica levels that the regulations considered dangerous.

This excessive exposure to silica almost certainly happens more often than the data suggest. That’s because the data show only what happens when regulators are checking. The inspectors don’t check most of the time miners are working. Dust sampling takes place during regular mine inspections, which are scheduled four times a year in underground mines and twice a year at surface operations.

And until recently, sampling did not take place every hour miners worked or while mines were at full production.

Another finding of the NPR/Frontline investigation: During some of the heaviest periods of exposure to silica, regulations allow miners to work without any monitoring for it at all.

A white rock dust

Smith drove us past a pair of adjacent coal mines near his home in Canada, Ky., where he and other miners cut nothing but rock for months.

He was reluctant to pull over at the Rockhouse Energy Mine, even though it is closed, because security guards were watching from a parking lot. So he slowly passed by, describing work shifts that lasted 16 hours a day, seven days a week, for months, while cutting through solid rock. They used drills and mining machines to dig from one coal seam to another underground.

“It wasn’t coal dust that you would see,” Smith said. “It was more of a white rock … dust.”

Smith and his coworkers were cutting what’s called a slope mine. It’s not really mining because there’s no coal involved. It’s all about cutting through mountainsides or blocks of rock to reach coal seams.

And because there’s no coal, it is considered development mining or construction. So sampling the air for toxic dust is not required, even though it is the most dangerous dust. Former MSHA officials told us some inspectors did it, but most did not.

Smith spent months cutting at least two slope mines in his career and believes that could explain his severe disease, even though he worked underground only 12 years.

An old photograph of Kelly taken when he was 19 captures him taking a break after working in the mines.Rich-Joseph Facun for NPR

“Very possible,” he said, as we passed the mine’s abandoned conveyor belts that stretch over the road. “Most of my mining career I run a continuous miner. I run a roof bolter also. And it’s very possible from all the hours we worked.”

Roof bolters operate a machine that pins roof supports into underground mines by drilling into solid rock. The machines have customized dust-control systems that suck away dust, but miners complain they get bursts of silica dust when they begin drilling and then later when they empty boxes that collect the dust that was sucked away during drilling.

The machine known as a continuous miner grinds up rock and coal. Dust is supposed to be controlled by massive ventilation fans that pump air through the mine, while heavy curtains channel that air to sweep away dust. Mining machines spray water as they cut, to tamp down dust.

NPR interviewed 34 coal miners, all diagnosed with PMF and with 12 to 40 years in mining in Pennsylvania, West Virginia, Virginia and Kentucky. Sometimes the dust controls worked, most told us, and sometimes they didn’t.

Federal law requires mining companies to offer dust masks or respirators to miners, but their use is not required. The law considers them a secondary and optional means of protection. Mines are required to provide air clear of dangerous dust, first and foremost.

Most of the sick and dying miners we interviewed who used dust masks said they often didn’t work.

“They would clog up with dust, sweat and spit,” said Edward Wayne Brown, who spent 21 years underground in Buchanan County, Va. “And then it feels like somebody just sitting there with their hand over your face.”

In fact, dozens of miners, including Smith, have filed product liability lawsuits against dust mask suppliers. Most cases are still pending but a few have resulted in multimillion-dollar verdicts for the miners.

“This is probably the oldest known occupational hazard,” said retired industrial hygienist Weeks, who has a collection of antique books to prove it — with references to mine dust hazards from Pliny the Elder in the first century and another dating to the 15th century.

“There’s nothing new about this,” Weeks added. “And you’d think by now we’d have figured out how to deal with it.”

Sure thing.

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