This story is based on the reporting of Caroline Boras, Jordan Cohen, Emma Deihle, Kinsey Grant, Logan Hendrix, Camille Hunt, Alex Kinzer, Armani Smith and Kelly Swanson. It was written by Swanson.

BECKLEY, W.Va.—Terry Lilly had dreams of making it big in baseball, but at 18 he knew he had to stop daydreaming. Like many young men growing up in Appalachia, Lilly knew coal mining guaranteed a good wage.

“I played baseball a couple of summers trying to be a big leaguer, but it never worked out. I had a brother in the coal mines and followed him in,” he said.

Lilly, 57, a West Virginia native, has what is considered a complicated form of coal workers’ pneumoconiosis, better known as black lung disease, which he blames on nearly 30 years of sucking in the toxic dust that is stirred up during the mining of coal.

“[I] can’t run to first base. People look at you and laugh at you,” he said. “I actually can’t run to first base.”

Black lung disease was nearly eradicated in the mid 1990s. But it has roared back to levels comparable to the 1970s, when coal dust levels were first regulated. It is unclear why the disease is deadlier and more aggressive than ever.

Lilly considers himself to be one of the lucky ones because he fought a little less than two years to receive monthly federal black lung benefits.

More than a quarter of miners spend three years or more trudging through a bureaucratic maze administered by the U.S. Department of Labor, according to the U.S. Government Accountability Office (GAO). In 2015, a disabled miner received $638 a month. Miners with three or more dependents received a maximum of $1,276.

Coal companies usually fight the claims because they are responsible for paying the benefits, if it is proven that a miner is totally disabled from black lung disease caused by employment in the mines. Some miners die from the progressive, incurable disease while waiting for decisions in their cases.

In September, two bills were introduced in Congress that House and Senate sponsors say would streamline the cumbersome claims process and would ensure that medical evidence of black lung disease cannot be hidden or ignored.

“It’s like they’re almost waiting for you to die before they give you any benefits,” said Dewey Keiper, 57, of Summersville, W.Va., who fought for three years to receive monthly benefits.

A dirty job

Gary Hairston, 61, of Beckley, spent 27 years working underground and remembers dust so thick, “sometimes you couldn’t even see.”

Black lung disease is caused when a miner inhales the carbon dust stirred up in the coal mining process, says Maryanne Simurda, a biology professor at Washington and Lee University.

“Over time the cells of your lungs start engulfing those [carbon] particles,” she said. “As those cells become incapacitated because of the presence of the coal dust, it becomes more and more difficult for you to breathe.”

Several theories have arisen as to why black lung disease, especially its complicated form, has increased among miners. Scientists and government officials blame a combination of non-compliance with coal dust regulations, longer work hours and the use of faster, more powerful machinery. Some coal miners also believe that the increase is due to the decline in the power of the United Mine Workers of America (UMWA), once one of the most influential labor unions in the country, in resisting the push by companies to increase production at any cost.

Black lung related deaths are more concentrated in Appalachia because its coal has a higher than normal level of carbon content, according to the GAO.

Lilly said he remembers how dust pumps, devices worn by miners to measure air quality, were manipulated to justify the push to keep production levels high.

“We hid them in lunchboxes. We hid them in fresh air, so the dust samples would come back correct,” he said.

Miners also used to shake the pumps to void dust that had accumulated in the devices’ filters, said Randy Wriston, 61, of Oak Hill, W.Va., who fought for his black lung benefits for four years. His former employer lost its appeal this year.

Larry Ramsey, 60, of Danese, W.Va., who is fighting for benefits, said another corner that miners cut, in the name of speed and production, was in the use of ventilation curtains. The large sheets separate portions of the mine from blasting sites to filter out coal dust and dilute methane gas, which can cause an explosion if it builds up.

“The only time we hung curtain was when the mine inspector come,” Ramsey said. “As soon as they went out of sight, all the curtain was rolled up, put back in place. We didn’t have no ventilation.”

Hairston says coal companies care only about making a profit.

“They ain’t worrying if you’re going to be all right,” he said. “They’re worried about how they’re going to make money, any way they can make it without spending more money to do what they do.”

Pictured left to right, former miners Dewey Keiper, Terry Lilly, Arvin Hanshaw, Larry Ramsey, Randy Wriston, Gary Hairston, and Joe Massie, and attorney John Cline.

A dangerous job

Coal mining isn’t just a dirty job. It’s also dangerous.

Lilly said he “got covered up,” when part of the mine collapsed. “I had a rock on me 12-foot-long, four-foot-wide, 11-inches thick.”

He said he spent 18 days in intensive care in 2006.

“I didn’t get blowed up,” he said. “The Lord works in mysterious ways.”

Explosions are a significant concern in underground mining because of the buildup of methane gas.

Sue Howard, a lawyer who has represented several miners in their claims for black lung benefits, recalled a story her father told her about a mine explosion.

“He was playing out in the yard, and felt the mine draw air, and everyone knew what that meant. And I believe there were about 128 workers who died,” she said.

Howard, who represented her father in winning black lung benefits, was talking about the Benwood mine disaster of 1924. Her grandfather worked there but wasn’t underground that day.

The worst coal mine explosion in U.S. history was the Monongah mining disaster, which killed 362 miners in 1907.

But it wasn’t until 78 miners died in the Farmington mining disaster of 1968 that Congress passed the Coal Mine Health and Safety Act. The 1969 law created the black lung benefits claims process.

Struggling with the simple things

It takes about 10 to 15 years of exposure to coal mine dust to develop black lung disease, according to the National Institute for Occupational Safety and Health (NIOSH). Once a miner has it, the disease gets worse.

“You have some of the new coal miners who literally are, they’re out of high school. And somewhere along that career curve, these healthy young mean, will, statistically at least, acquire a disease of the lungs that may or may not totally disable them at some point,” Howard said.

Hairston recalled the first time he noticed that something was wrong. He was running up the steps at work to escape the rain, and he found himself gasping for air.

“The guys [were] saying there’s oxygen upstairs, but I can’t even make it up the steps to get to it,” he said. “I’m sitting there thinking, you getting ready to die.”

Simurda says such symptoms are how it starts.

“Initially, the stages are probably more along the lines of they get out of breath when they do some strenuous exercise. But then as time goes by, even regular things, like washing the dishes or mopping the floor become too much of an exertion,” she said.

Arvin Hanshaw, 59, a coal miner from Summersville, W.Va., says he struggles to do everyday chores.

“I’ve got a trash bin down at the road,” he said. “By time I get halfway back to the house, I’ve got to stand there awhile to get my breath to go on,” he said.

Sleeping is another struggle.

“I’ve got to open the window at the head of my bed for air to blow in cause if I don’t, hey, I’m just smothered to death,” he said.

A maze of a process

Brian Murchison, a law professor at Washington and Lee University, says miners are proud people.

“These are not people who are trying to get a handout at age 24,” he said. “These are usually coal miners who have spent decades underground, going to work everyday, exposed to coal dust.

Ramsey, who worked underground for 23 years, said he wonders if he’ll ever win his case.

“I know I won’t be able to enjoy it if I ever do get it. But I would like to get it before I die,” he said.

He applied for black lung benefits in 2011, but was denied by a Department of Labor district director. He appealed, and a hearing was held before an administrative law judge in 2013. He is still waiting for a ruling.

“It’s pitiful. You work all your life and you just draw up for a short, you know, period of time. You don’t enjoy it,” Ramsey said.

In a 2009 report, the GAO said 87 percent of all black lung benefits claims were initially denied in the previous year.

Three U.S. Department of Labor agencies share responsibility in deciding black lung claims: the Office of Workers Compensation Programs (OWCP), the Office of Administrative Law Judges (OALJ), and the Benefits Review Board (BRB).

“Civilizations rise and fall while we’re waiting for a black lung decision to come out,” Murchison said.

Miners must prove that they have black lung disease, that they’re totally disabled because of it, and the disease was caused by their employment in the mines, he said.

“Those things are hard to show, so it takes a while to corroborate your claim,” Murchison said.

Mary Natkin, a law professor at Washington and Lee University, said the coal companies almost always appeal if a miner wins.

The companies often blame other causes for the miners’ respiratory problems, such as smoking, tuberculosis and rock dust, according to Labor Department records.

Luke Popovich, a spokesperson for the National Mining Association, a lobbying group for coal companies, says that rock dust poses the biggest threat to coal miners.

“This supports our contention that in such regions it is rock dust, from mining deeper and smaller coal seams, and not coal dust, that is responsible,” he said.

Dueling doctors

John Cline, a West Virginia lawyer who represents several of the miners interviewed for this story, said one of the biggest obstacles for miners seeking benefits is medical evidence.

When a miner files a claim, he must go to a doctor to be tested, at the expense of the company. Often, the fights between the miner and the company come down to dueling opinions of doctors as to whether the miner has black lung or another respiratory disease, and what caused it.

“Fortunately the law does not require that black lung be the only cause, but a significant cause [of disability],” Cline said.

The Center for Public Integrity revealed in 2013 that coal companies relied heavily on Dr. Paul Wheeler, who ran a black lung clinic at Johns Hopkins University for many years.

In its Pulitzer Prize-winning series of stories, the Center reported that Wheeler never found the severe form of the disease in reviewing 1,500 cases since 2000. Other doctors looking at the same X-rays found the most advanced stage of black lung disease in 390 of these patients.

Hanshaw said three doctors determined that he had complicated black lung, but Wheeler’s opinion trumped the rest.

Wriston, the coal miner from Oak Hill, laughed when he recalled that doctors blamed his lung impairment on spending time in bat caves.

“I’ve never been in a bat cave so I really don’t know,” he said.

Keiper’s breathing is so labored that he says he feels like he’s breathing through a straw. He said he has been evaluated for a possible lung transplant by doctors at the University of Pittsburgh.

“They said it wasn’t bad enough yet. But I’m supposed to go back if I get worse,” he said.

Fighting back

Joe Massie, 78, president of the National Black Lung Association, remembered when his lawyer warned him that the coal company would fight hard to keep him from getting his benefits.

“They’ll spend a million dollars fighting you on your black lung,’” he recalled the lawyer as saying. “Which I guess they did. It took me 10 years to get it. I said, ‘Well I’m retired. That’s all I’ve got time to do. I’m gonna pursue it, you know.’”

Many coal miners aren’t as fortunate as Massie, and they don’t have lawyers to represent them. In black lung benefits cases, lawyers cannot charge a fee unless benefits are awarded. Then, and only then, can lawyers ask to get paid.

Cline said that’s why lawyers aren’t flocking to do this kind of work. “I’ve had cases I worked on for 10 years,” he said. “If you lose a case, you don’t get paid at all.”

In 2013, only 25 percent of miners were represented by attorneys when they filed their benefits claims, according to the Black Lung Benefits Improvement Act of 2014.

Many miners spend the last part of their lives fighting coal companies.

“We spent our [life]time for the companies,” Hanshaw said. “They just want to discard you and it’s like you’re no good.”

“No voice”

Ramsey said he remembers going to work, never knowing when his shift would be over. If another miner did not show up, the miners already on the job were expected to stay and work overtime.

“If a miner operator didn’t show up, they didn’t ask you, ‘Do you want to stay over?’ They asked you, ‘What do you want to eat?'” he said.

Lilly said he worked eight-hour shifts when he first started in the mines, but was working 10-hour shifts by the end of his career.

“You stay in that coal mine until the next guy comes in to relieve you,” he said.

Lilly blames the longer workday and lack of compliance with air safety regulations on the union’s loss of power in the last several years.

“I think coal miners lost their voice,” he said. “And I think their voice is in the UMWA.”

The UMWA’s membership dropped to less than 74,000 in 2013, compared to 500,000 in the late 1940s.

Joe Carter, the District 17 vice president of the UMWA, agrees that while the union advocates for health and safety in the mines, its power has diminished as membership numbers continue to decline.

“We do not represent a greater majority of the people that work in the industry now as we did,” he said.

Lilly said that when he worked in non-union mines the miners didn’t challenge the bosses’ orders.

“It was all, pretty much, this is what we’re gonna do,” he said.

“A band of brothers”

Lilly says he misses the camaraderie that he felt while working in the mines.

“That’s what I miss the most about my coal mining career is my friends and the bath house humor that goes on,” he said.

Each miner had a different nickname.

Hanshaw was nicknamed “Preacher” because he was a minister.

He said he knew miners by their nicknames better than their real names.

Miners also spent more time with each other than with their families, Hanshaw said.

Lilly said the long hours that he worked took a toll on family relationships.

“You had to make the living and you had to make that sacrifice,” he said. “I tried to go to everything my son had, but you just couldn’t do it. You had to miss it.”

Lilly, Hanshaw and other miners say they realize they sacrificed their health for their work.

“I guess looking back I could have done something else,” Keiper said. “But not really, I don’t really regret it.”

Lilly said coal miners need to insist on the benefits that they deserve.

“Just keep fighting,” he said. “Don’t give up on it.”

Published December 22, 2015