Over a decade into retirement, Danny Johnson still considers himself a coal miner. It was such a part of his identity that when his only daughter got married, he walked her down the aisle wearing his hard hat and mining coveralls.
Whenever Johnson dug into a new part of a mountain, he remembers feeling that he and God were the only ones who had ever seen that part of the earth.
“You’re going where nobody’s ever been,” the 69-year-old said while sitting on his front porch in Mercer County.
But his decades of mining had drawbacks as well. He worked long shifts at various mines in Southern West Virginia and Eastern Kentucky — sometimes going over two weeks in a row without a day off. He missed countless birthdays and graduations of his two children, seven grandchildren and seven great-grandchildren.
And the job took a severe toll on his health. When Johnson was 20, a 20-foot-long rock fell on his face, requiring him to get more than 100 stitches through his face and mouth. Later, he broke each of his feet and watched a nail fly straight into his pupil.
“I can see big stuff, but I can’t read nothing,” Johnson said, pointing to a blue artificial lens in his eye.
While those injuries have scarred over, he’s still battling the consequences of the dust that lives in his lungs. Eleven years ago, at the age of 57, Johnson was diagnosed with progressive massive fibrosis, the most severe stage of black lung disease.
The disease has been a known threat to coal miners for over a century — it’s taken the lives of tens of thousands of Americans since 1968. While black lung became less common through the 1990s, it’s on the rise again. Now, even middle-aged miners have been diagnosed with advanced stages of the disease.
Severe black lung continues to disproportionately affect central Appalachia; from 2019 to mid-2023, nearly 30% of Americans diagnosed with progressive massive fibrosis at federally-funded black lung clinics were West Virginians, according to the Black Lung Data and Resource Center at the University of Illinois Chicago.
That trend is widely attributed to more frequent exposures to silica dust. With the easily-accessible coal already mined, workers often grind through rock embedded with quartz to mine thinner and thinner seams. Grinding that quartz creates silica dust, which is 20 times more toxic than coal dust alone.
“It’s the silica dust that’s killing them,” Johnson’s wife Debbie said. As a black lung nurse at Bluestone Health Center in Kegley, she’s used to seeing patients like Johnson — miners who get winded from walking up their front porch stairs, on a daily basis.
“Now they’ve got black lung. He’s got black lung,” she said, gesturing to her husband. “A whole lot of them have black lung.”
By now, coal workers weren’t supposed to get black lung. Half a century ago, 40,000 West Virginia miners went on strike until Congress passed landmark legislation to “eliminate conditions in mines which cause the disease.” Since then, regulators have also enacted federal rules to further limit workers’ overall dust exposure.
But the lingering and now increasing trend of silica-induced lung disease wasn’t directly addressed until this summer. After decades of delay, the Mine Safety and Health Administration (MSHA) proposed regulations to set and enforce a stricter limit on silica dust exposure.
Health advocates have expressed mixed feelings about the rule: while many are grateful that MSHA is acting, some are worried about whether the rule as written will actually protect miners.
But most of the people who have worked in coal mines or with coal miners agree: something needs to be done, and it has to be done right. Otherwise, Danny Johnson is confident his fate will be shared by the next generation of miners.
“You work hard for this and that, and everybody’s gonna end up like me — dead,” he said, pointing at his exposed chest. “This stuff is killing me more and more.”
‘It’s horrible to hear him sleep’
At the New River Health Clinic in Oak Hill, 69-year-old retired miner Roy Keith sat across from respiratory therapist Lisa Emery. It was Keith’s first health care visit in years; he was there to see if he qualifies for West Virginia’s black lung benefits program.
Like Danny Johnson, Keith spent decades mining coal underground, and his lungs are a constant reminder of the job’s effect on his health.
“I like to play softball, but I can’t run,” Keith said.
“It’s horrible to hear him sleep,” his partner, Peggy Dickens, told Emery.
In her eighth year at New River Health, Emery said she’s been seeing more and more miners in their 30s and 40s with severe black lung. So many have no choice but to keep working the dusty jobs if they want to support their families, she said.
“It just makes me cry every day,” Emery said.
After Emery asked him questions about his breathing, Keith sat in a glass-paneled booth, a machine that tests miners’ lung capacity. In the transparent box, Keith nodded as Emery instructed him to inhale deeply and then exhale as quickly as possible.
In his first few attempts, Keith couldn’t stop coughing, so much so that Emery had to restart the tests. His face vibrated and turned purple as his lungs expelled as much air as they could.
Watching her partner from a seat across the room, Dickens cringed as Keith shook and coughed. Her father was a West Virginia coal miner as well, and he had a silica-caused breathing disease when he died at 49.
“It just reminds me of Daddy,” she said.
Thoughts for a long-overdue problem
On an August morning in Beaver, over 100 people filed into the dimly-lit auditorium of MSHA’s National Mine Health and Safety Academy. The agency was holding a hearing on its proposed silica rule and gathering comments from miners, miner advocates and representatives of mining companies.
It was the best opportunity for coal miners from central Appalachia, people like Terry Lilly, to share their thoughts directly with MSHA officials. The retired miner sat and spoke softly into a microphone.
“I’d like these young [miners] to realize they need to wake up,” Lilly told the panel, pausing between sentences to catch his breath. “One of these days you’ll be like me, and you can’t walk across the parking lot.”
Lilly spent 30 years working underground and now has only 40% of his lung capacity remaining. He knows the way the mines were set up in the 1980s — and the way some are run now — do not make it easy for workers to avoid disease. Lilly remembers how some mine operators would pressure or force miners like him to manipulate dust samples and hide overexposure.
In fact, independent analyses of MSHA’s own coal mine dust samples show its previous silica dust exposure limits failed to adequately protect miners for decades. An investigation by NPR and PBS Frontline in 2018 analyzed MSHA’s data and found 21,000 instances of overexposure to silica dust since 1986.
While the proposed rule, in its current form, does require regular dust sampling, much of its effectiveness will depend on mining companies sampling their own mines and reporting it accurately and honestly. Although some companies may do that, Lilly worries there are still loopholes.
In the back rows of the auditorium, Roosevelt Neal and John Cline sat next to each other. Neal, a 71-year-old former miner from Raleigh County, received his black lung diagnosis when he was in his 50s. Ironically, he first took a job underground so his family would have access to health insurance.
“I know I got a little age on me, but…I’m out of oxygen just walking up steps,” he said.
When the Department of Labor rejected his request for black lung benefits, Neal turned to Cline, a lawyer and longtime West Virginia labor rights advocate who played a key role in reforming the federal black lung benefits system. With Cline’s help, Neal won the money the federal government ultimately said he deserved.
Since the mid-1980s, Cline has worked with hundreds of West Virginia miners disabled by silica dust. While he views this rule-making process as part of a continued effort to keep miners healthy, he doesn’t forget that in the past, it’s been difficult for MSHA to pass and enforce dust regulations that prevent miners from getting this preventable disease.
“I’ve watched so many people decline and pass from this,” Cline said. “Not only the shortness of breath, but the effect it has on mental health and making life such a terrible struggle.”
‘Could be here today and gone tomorrow’
If Cecil Matney Jr. had made it to Beaver, the 49-year-old Logan County coal miner planned to speak, using the half of his lung function he has left, about some of the activities he can no longer do: hunting, going on walks with his family, kicking a soccer ball around with his 12 and 13-year-old sons.
He may have mentioned that he’s still working as a miner: he can’t afford to retire from the mines despite having a disease that’s slowly killing him. Or that multiple pulmonologists have told him he’ll likely need a lung transplant soon.
“It feels like a ton of bricks laying on your chest when you’re trying to catch your breath,” Matney said. “My wife’s woken me up thinking I was dying because I wasn’t breathing.”
He often sees white specks floating in the air underground. The dust continues to cripple many miners like him with progressive massive fibrosis.
Matney recognizes what an effective silica rule could do for the thousands of West Virginia miners like himself. That is, if regulations are strict enough — and if there’s rigorous oversight and enforcement — to keep coal operators in line.
“If you’re not holding the company responsible for something, they’re gonna break that rule,” Matney said. “They could care less. That’s just the facts about it.”
But for him, the damage has literally crystallized in his lungs. Embedded silica particles and fibrotic tissue sap his ability to breathe. His disease, and his struggle for breath and continued life, is the result of the government’s past failure to act on silica dust.
Matney wants to live long enough to see his sons become adults, to teach them how to act and to watch them have children of their own. But he knows his decades of dust have made these aspirations ambitious at best.
“At the rate I’m going, that’s just something you don’t know,” he said. “I mean, I could be here today and be gone tomorrow. It’s just the way it works.”
Howard Berkes of Public Health Watch and Justin Hicks of Louisville Public Media contributed to reporting this story.