Retired coal miner John Robinson displays his mining helmet at his home in Coeburn, Va., on Jan. 24, 2019. Robinson was 47 when he was diagnosed with black lung disease, part of a new generation of black lung sufferers who are contracting the deadly disease at younger ages. (Dylan Lovan/AP)

Like the miners who work underground in dark and dangerous conditions, black lung disease is, for many, largely out of sight, out of mind.

But for folks such as Gary Hairston, who spent more than 27 years in the mines around his Beckley, W.Va., home, the ailment is ever-present. He lives with it. Many have died of it.

Now, the number of black lung cases is growing. At the same time, funding for a federal program to care for those with the disease has fallen sharply.

While the Black Lung Disability Trust Fund has been in debt regularly since 1979, its financial situation is increasingly bleak. Even with the debt, the fund provides medical and financial assistance to certain miners who are totally disabled by the disease. About 25,600 people, including dependents, received black lung benefits in fiscal 2018. The average annual cost for medical treatment was $9,667.

A Government Accountability Office report says the trust fund’s penury is exacerbated by this year’s 55 percent decrease in the coal tax rate, declining coal production and coal company bankruptcies. The tax is levied on coal produced and sold domestically. When coal companies go broke, their responsibility to fund the black lung program is transferred to taxpayers.

The GAO predicts that the fund’s debt could grow from less than $5 billion last year to more than $15 billion by 2050.

What matters more than money is the coal miners’ misery.

Hairston’s doctor initially thought the mass on his lung was cancer. A biopsy showed the Fayette County Black Lung Association vice president had a complicated form of black lung.

“I was 48 years old when I had to quit work. I can’t play with my grandkids,” Hairston told a hearing of the House Education and Labor subcommittee on workforce protections. With his large gray goatee and broad shoulders, Hairston is a distinguished-looking man, but he nearly broke down while delivering passionate testimony.

I never did think at a young age that I wouldn’t be able to take care of my family,” he said. He wiped away tears before subcommittee Chairwoman Alma Adams (D-N.C.) allowed Hairston, almost overcome with emotion, to cut his testimony short.

Recent research indicates “an unprecedented increase” in the most severe form of black lung disease, according to a July 2018 update from the Centers for Disease Control and Prevention’s National Institute for Occupational Safety and Health. The update does not provide a reason for the increase.

A 2016 CDC document said the factors leading to an increase of black lung in Kentucky are unknown, but it did offer some suggestions. Among the possibilities are new or modified mining practices, including slope mining and continuous use of mining machines. More miners seeking X-rays to determine whether they are eligible for state or federal programs also could be a factor.

Hairston is among the 10 percent of coal miners who worked more than 25 years underground and now show signs of black lung. That’s an increase of three percentage points since 2012. The percentage is much higher in Appalachia, where he lives and where about 20 percent of the miners have the disease, “the highest level recorded in 25 years,” the CDC’s update said.

“There is extensive evidence that there is a resurgence of black lung in the United States, especially in its most severe forms,” said Robert Cohen, a physician whose multiple posts include being director of the Mining Education and Research Center at the University of Illinois in Chicago.

“Outbreaks of hundreds of cases of the most severe form of the disease, with miners exhibiting large debilitating scars, known as progressive massive fibrosis, have been reported from clinics in Kentucky and southwestern Virginia,” he said. “There is also significant evidence that … the most severe disabling forms of this preventable disease are occurring in younger miners.”

Although there were earlier indications of the black lung increase, until last year, the organization representing mining companies claimed the disease was declining. A 2018 National Mining Association fact sheet referred to “a decline in medical black lung disease” and said the incidence of black lung “continues to decline.” When contacted Wednesday, the association spokesperson said the fact sheet was prepared before more recent studies.

A current association representative did not testify at the hearing, but Bruce Watzman, who was head of regulatory affairs for the association last year, did. He took sharp questioning from Rep. Susan Wild (D-Pa.) about his statement in a 2018 Reuters article that suggested smoking can cause black lung.

Although Watzman did not back away from his statement, the mining association said the article took his comment out of context and that the association never claimed smoking causes the disease.

The CDC update makes clear that smoking is not the cause of black lung.

“Breathing coal mine dust is the sole cause of black lung, and it is entirely preventable,” David Blackley, a CDC epidemiologist, said in the article. “This study provides further evidence that effective dust control methods and protections to reduce coal mine dust exposure along with early detection of the disease are essential to protect miners’ health.”

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