An ugly legacy of the coal mining industry is making a comeback in Appalachia. Despite regulations meant to protect workers from toxic coal dust, a whole new generation of miners is being diagnosed with the most severe form of black lung disease. It’s the largest cluster of the disease ever reported, and was first exposed by NPR investigative reporter Howard Berkes 14 months ago. Now Berkes has a followup, and Kara Holsopple talked to him about his most recent reporting into what’s causing the increase in cases of the disease. 

Kara Holsopple: Most people have at least heard of black lung disease in our region. You’ve been reporting about complicated black lung in Appalachia. What’s the distinction?

Howard Berkes: Complicated black lung, or progressive massive fibrosis, is the worst stage of the disease. It is severe in the symptoms. It’s incurable, except for a lung transplant. And aside from getting a lung transplant, it’s fatal.

KH: Epidemiologists at the National Institute for Occupational Safety and Health (NIOSH) recently reported a very high number of complicated black lung cases in a concentrated area. How many people are we talking about and why is this significant?

HB: In the study that NIOSH just produced, they looked at three clinics in southwestern Virginia which serves coal miners from Virginia, Kentucky and West Virginia. And they identified and confirmed 416 cases of the disease in the previous few years. The study ended about a year ago. That’s an astonishing number. NIOSH itself in its own accounting of that disease, found less than 100 cases in the same timeframe nationwide. And here in just three clinics in southwestern Virginia, there are four times as many cases. NPR has been surveying black lung clinics across Appalachia, and our count is up close to two thousand cases in the same timeframe that NIOSH had previously identified only 99. NIOSH itself now recognizes that this as the worst cluster of this disease ever documented. NIOSH has referred to it as one of the worst industrial workplace disasters in American history. It also marks what is a sharp increase in the disease from the 1990s, when researchers believed that it might actually become extinct.

LISTEN: “A Surge of Black Lung Disease in Appalachia”

KH: Edward Brown is a former coal miner featured in your story. He has advanced black lung. He’s 55 years old.

HB: Edward Brown is like a lot of the coal miners we’ve been talking to. They describe lives that have been seriously diminished by this disease. Simple things that they used to take for granted, they can no longer do. They can’t run around with their grandkids; they can’t walk three steps without getting completely out of breath; they can’t carry groceries; they can’t mow the lawn; and of course, they can’t work anymore. These are people, generally, who’ve been very active — hunting, horseback riding, you name it. And they were coal miners, which is a very physically tasking job. They find themselves as sort of shadows of what they used to be. It really hits them and their families hard to see this steep decline in their health. 

Silica stays in your lungs, and it stays there forever. The lungs start to react to that silica by building up fibrotic tissue, which eventually becomes complicated black lung.

KH: How do researchers account for men as young as Mr. Brown (55), some in their 40s and even 30s, being diagnosed with this disease?

HB: This has also been quite a shock to them, because it used to be black lung, and especially complicated black lung, was diagnosed in miners much older than that — 60s, 70s, 80s. But what researchers believe is that the spike in progressive massive fibrosis, or complicated black lung — and the fact that it occurs in younger miners who have spent fewer years in mining — is because of changes in the way that coal mining has taken place in Appalachia. It used to be the coal seams were massive and big, and the mining machines were simply cutting coal. But the big coal seams have pretty much played out, especially in southern Appalachia. What you have left are coal seams that are embedded in rock, and the rock in that region tends to be sandstone or quartz. And when you cut rock and coal together, you end up with silica particles in the dust that’s created. Silica is far more toxic than coal dust. With coal dust alone, your lungs can expel some of those particles, if there’s enough time between exposures. Not with silica. Silica stays in your lungs, and it stays there forever. The lungs start to react to that silica by building up fibrotic tissue which eventually becomes progressive massive fibrosis or complicated black lung.

KH: Now the Trump Administration wants to begin what they’re calling a “retrospective study” of newer federal regulations that limit exposure to coal and silica dust. These were finalized under the Obama administration, and I believe that the retrospective study is being called “deregulatory.” What does this move signal and what could it mean for miners?

HB: It’s not clear what the intent of the administration is. By labeling it deregulatory, that raises concern among mine safety advocates, because it implies that what the administration wants to do is cut back on the regulations that were recently enacted — that just fully went into effect in 2016 to cut back on the occurrence of exposure to the mine dust that causes black lung and progressive massive fibrosis. So the concern is: what is their intent? And the word “deregulatory” signals an intent. The head of the agency [Mine Safety and Health Administration], David Zatezalo, who’s a former coal mine executive, insists that there’s no intention to cut back on the regulations. And the retrospective study that they’re undertaking is something that the Obama administration did make part of the new rules. They wanted to go back and check on how things were working, to make sure they were effective. And that’s what the Trump administration’s Mine Safety and Health Administration says it intends to do. But there is concern, because the agency called it a deregulatory action in its official announcement.

KH: What about the miners who are still working and haven’t been diagnosed or checked for black lung. Is there anything being done to protect them?

HB: There are the new regulations that are in effect, which are intended to reduce their exposure. And because it can take 10 years or more for the disease to fully develop, it could be that long before we know whether the new regulations have been effective in reducing the occurrence of the disease. The people who are sick today are people who were continually exposed 10 to 30 years in the past, as recently perhaps as five years in the past. But the other important point is that there’s no requirement that all miners be tested. Under the law, NIOSH tests only working miners. And many of the miners who are now being diagnosed are miners who are no longer working. Thousands of miners have lost their jobs. So these miners are now coming in to get tested because they need to replace the wages that they had in mining, and they’re applying for black lung benefits. So they’re seeing whether or not they have black lung. But to get a true sense of how extensive the disease is, and to catch it early enough so that miners would have the choice of stopping working, and maybe prevent the disease from being so bad, you have to test all of them. That’s not required under the law. So there really is nothing being done to get a handle on this disease in terms of miners who are working now.

KH: Well Howard thank you very much for talking with me.

HB: Thank you for your interest in this story.

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