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Shirley Smith, 64, left Harlan County, Kentucky at age 19 to work in an Indiana factory. But she missed the mountains. Homesick, she returned to Cumberland, population 2,000, to work in the coal mines. It was difficult to gain respect because [mining] "was a man thing," but Smith said she "aggravated them to death" until Arch of Kentucky, formerly U.S. Steel, hired her. She worked for coal companies for 23 years, including 16 years underground. 

After a long career, Smith now worries about the onset of pneumoconiosis, or black lung, a work-induced illness that shreds the lungs of coal miners. She doesn't have a diagnosis, but Smith has begun to notice the signs: extreme shortness of breath and a persistent cough, often associated with phlegm. 

"I don't want black lung," Smith told me. Black lung is a death sentence: eventually, it suffocates those who suffer from the disease. "But if I got it, I deserve to be compensated for it."

Smith comes from a family of coal miners, and has seen the effects of the disease firsthand. Her father died of black lung on her ninth birthday. Her brother David mined underground for 19 years before mounting health problems, including thyroid cancer, forced him to retire. Smith said David was turned down three times over three years before he was able to file a federal black lung case; his lawyers have warned it could take an additional three years before he receives benefits. 

Ever since a 2018 workers compensation bill—House Bill 2—limited the type of medical professionals qualified to diagnose black lung from chest X-rays, it's become more difficult for former miners like Smith to be diagnosed.  Prior to 2018, radiologists with "B" reader certifications were qualified to diagnose black lung. But now only pulmonologists, or lung specialists, with "B" reader certifications are legally permitted to diagnose a disease with epidemic proportions. 

"I don't want black lung… But if I got it, I deserve to be compensated for it."

Since House Bill 2 passed, only two doctors in Kentucky are diagnosing black lung patients.  Both have long histories of working for coal companies and their insurance brokers, and both are based at least three hours from the coalfields. No other state has adopted this restriction, and the federal system qualifies both pulmonologists and radiologists with "B" reader certifications to perform diagnoses.  

In support of impacted miners, two legislators from eastern Kentucky—Representative Angie Hatton of Whitesburg and Senator Phillip Wheeler of Pikeville—proposed House Bill 239 and Senate Bill 215 respectively, to reverse this section of House Bill 2. 

Gov. Andy Beshear listens to Jimmy Moore, president of Letcher County's Black Lung Association, speak about his son, a former coal miner with complicated black lung. Photo by the author.

On a rainy Tuesday in February, Smith joined 14 other miners, at least a dozen of whom have black lung, along with spouses, widows, and their supporters, asking legislators to support HB 239 (former miners also spoke with Sen. Wheeler who proposed SB 215 later that evening). 

"We brought the people who were well enough to make the trip," said Wes Addington, executive director of the Appalachian Citizens Law Center. For many people with black lung, Addington said their days usually consist of "their couch and their bed." 

Instead of chasing down legislators, black lung patients walked haltingly down the hallways. Their breathing was labored. Those diagnosed with black lung pulled medicated inhalers and sprays from their pockets. Winding around the capitol building, supporters scoped out elevators and wheelchair lifts. Everyone wore matching black t-shirts with skeletons framed by enormous lungs that read "Black Lung Kills." 

Protestors of House Bill 2, including Addington and Rep. Hatton, claim it was written to eliminate an eastern Kentucky radiologist and fourth-generation coal miner, Brandon Crum, from diagnosing black lung disease. 

Beginning in 2014, Crum worked with NIOSH, the National Institute for Occupational Safety and Health, to identify the epidemic throughout central Appalachia. Their research uncovered the largest cluster of black lung cases since the disease was all but eradicated in the 1990s: one in five Appalachian coal miners has black lung and one in 20 has "progressive massive fibrosis," an even more severe form of the disease, commonly known as complicated black lung.

"This is not hyperbole to say it's a national disgrace," said Addington. "Epidemiologists from NIOSH have said this is the worst occupational health disaster in a quarter century." 

Since House Bill 2 passed, only two doctors in Kentucky are diagnosing black lung patients.

Crum's discovery gained both national media attention and the animosity of the Kentucky Coal Association, prompting coal lobbyists to weave the medical restriction for black lung cases into House Bill 2, and creating what Sen. Wheeler has called the "Brandon Crum Exclusion Bill."

Dr. Bruce Broudy and Dr. Byron Westerfield, both in Lexington, are now the only two doctors diagnosing black lung statewide. Ohio Valley ReSource reported black lung diagnoses have decreased—from 54 percent to 26 percent—since 2018. Only 14 out of 173 black lung claims were awarded benefits by summer 2019, while the rest were dismissed or settled.

Black lung is entirely a work-related injury. It can be prevented by safeguards like limiting a miner's exposure to coal and silica dust through dust masks, by proper testing for dust limits in active mines, and by controlling the amount of time a miner spends underground. But miners report their supervisors have cheated dust tests, and because there are no unionized mines left in Kentucky, fewer regulators monitor the time miners spend underground. Addington said miners have reported working extraordinarily long shifts, some not leaving an underground mine for days. 

At the same time, coal seams are getting thinner, forcing mining companies to mine more rock just to get to the coal. Silica dust, which comes from mined rock, is harder on miners' lungs and can lead to complicated black lung. 

"We brought the people who were well enough to make the trip…"

Rex Fields, 72, was diagnosed with complicated black lung in 2013 after spending five years seeing his black lung claims denied. Fields worked underground for 39 years, and spent the end of his career crawling on his hands and knees through a low-ceilinged mine with four-foot tall walls heavy with silica dust. His federal claim benefits include a medicated inhaler that would otherwise cost about $4,000 a year. They also allow him to attend a respiratory therapy clinic twice a week near his home in Whitesburg, which he called a "godsend."

Although it was difficult for Fields and his wife, Tilda, to make the trip, "all you can do is help the miners coming up behind us," he said. Fields supports re-expanding the small number of doctors available to diagnose black lung. "We need more doctors who can be 'B' readers," said Tilda, a retired nurse.

Shirley Smith, Rex Fields, and Tilda Fields, on the left side of the table furthest from Gov. Andy Beshear, lean back and listen to Beshear speak about his support of HB 239. Photo by the author.

Slack regulations and increasing silica dust means younger and younger miners are getting complicated black lung. In Frankfort, some miners reported their children, in their early 40s and 50s, had been diagnosed.

"My son has complicated black lung, and he's already seen two friends die. He knows what's coming for him," Jimmy Moore, president of Letcher County's Black Lung Association, told Gov. Andy Besehar during a meeting on February 25. "It's a disease that kills." 

Gov. Beshear met with the group and said he supported their cause: "There shouldn't be a system where there's only two doctors in a state you can see," said Beshear, who called HB 239 a rural health care issue. "No one should have to drive three hours to schedule [an appointment] with a single practitioner."

Beshear told the group that the first thing they needed to do was demand a hearing for HB 239, but after the former miners traveled over three hours from eastern Kentucky, the committee chair, Rep. Russell Webber, refused to meet with them, or schedule any hearings on the legislation.

Rep. Angie Hatton, who also introduced the same bill as HB 239 last year, isn't hopeful. In 2019, Webber didn't return her calls. Rep. Adam Koenig, who co-sponsored House Bill 2 and promised to reverse the policy if it negatively impacted coal miners, remains pocketed by the coal lobby. According to Hatton, that bill didn't create the backlog of black lung claims some legislators worried about. Instead, there have been few claims filed and even fewer approved. 

[O]ne in five Appalachian coal miners has black lung and one in twenty has "progressive massive fibrosis," an even more severe form of the disease, commonly known as complicated black lung.

"I don't think fewer miners winning cases will be a problem but rather a goal of the legislation," said Hatton. Neither Webber nor Koenig responded to request for comment. Webber has not scheduled a hearing for HB 239 in the 2020 legislature.

Working miners are far less likely to file claims, because they receive more money from working in coal than they would from federal black lung benefits. And because black lung continues to be diagnosed in younger miners, many have young families they need to support.

"If it was sports, the motto would be play hurt," said Hatton. "But for miners, it's working sick."

According to Hatton, Sen. Wheeler's Senate Bill 215 may have more traction than hers because he is a workers compensation lawyer and a Republican in a legislature with a Republican supermajority. 

Although Kentucky's medical restrictions have so far discouraged Shirley Smith from applying for black lung benefits—especially after seeing her brother David struggle for years to get his own claim approved—attending the lobby day encouraged her to start the process, including regular chest X-rays. But she's worried about the hardship of her about making an eventual trip to Lexington, especially since her breathing problems mean she'll need to rely on a friend to take her. But her biggest worry is David, who couldn't attend the lobby day because of his own respiratory issues and busy schedule of medical appointments.

"It's like they're trying to wait for everyone to die off so they don't have to pay them," said Smith. "But I hope he [David] will live long enough to have a more comfortable life."

Austyn Gaffney

Austyn Gaffney is a freelance writer and editor. Her work has appeared in HuffPost, onEarth, Sierra, Southerly, and Vice. You can find her stories at www.austyngaffney.com, and follow her on Instagram and Twitter at @austyngaffney.