On July 23, around 150 coal miners with black lung or their widows and loved ones from across Appalachia traveled by bus to Washington, D.C., to tell their stories to Congress and demand that legislators reinstate the tax rate that supports the Black Lung Disability Trust Fund and extend that rate for 10 years. For miners suffering from the severe health effects of black lung disease, making the trip in the July heat was a challenge.

The Black Lung Disability Trust Fund helps support coal miners and their surviving dependents in cases where the miners’ employer has either gone bankrupt or has been found not responsible. Several coal companies have recently declared bankruptcy, highlighting the importance of this fund — but its solvency is in jeopardy.

The trust fund is supported by a small excise tax paid by companies per ton of coal sold domestically, at a rate that was unchanged for more than three decades. But Congress failed to extend the tax rate before the end of 2018, resulting in a cut to the fund by more than half. A May 2018 Government Accountability Office report projects that, at the slashed tax rate, the fund’s revenue will be unable to cover beneficiary payments and administrative costs as soon as 2020.

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In the capitol, the delegation met with 22 congressional offices and held a roundtable discussion that included four U.S. senators, several miners and the president of the United Mine Workers of America. Linda Adams, the widow of a Kentucky coal miner, told attendees of the havoc black lung disease has wreaked on her community.

“He was 53 years old when he passed away,” said Linda, holding up a picture of her late husband, Tony. “Black lung is not a grandpa’s disease, I don’t care who says what. Tomorrow will make a year since I lost a nephew to black lung; he was 52 years old. Up in Pike County where I’m from, we have miners that’re 30, 35 years old that have black lung.”

Linda states that her husband signed up for healthcare in 2008; by the time he passed away in 2013, his case was still working its way through the system. She goes on to describe the ordeal she was put through by insurance companies.

“He had four biopsies,” said Linda. “One biopsy for a coal miners should be enough to get his benefits. Before he passed away, he told me, ‘I know I’m dying from black lung. I want you to have an autopsy done.’”

But even with an autopsy proving that Tony had died from black lung, the insurance company still would not accept it. “They said he did not have black lung,” said Linda.

After talking with the Appalachian Citizens Law Center, the nonprofit law firm successfully sued for Linda to receive her husband’s benefits posthumously — dating back to when Tony first applied for them in 2008.

“Four days [after the judge’s decision], I get a letter saying, ‘We’re not paying, we’re going to appeal it,’” says Linda.

After a review board denied the insurance company’s appeal, the company started sending monthly checks — but the company is still trying to get out of paying Linda. She states that the company is trying to get another judge to review the case.

But Linda’s spirit remains strong.

“You all have got a hard fight ahead of you, but I’ve got news for you,” she said. “As long as there’s breath in my body, I will be fighting for every one of you in this room!”

Sadly, Linda’s case is one oft repeated in Appalachia’s coal communities. Rates of the fatal, incurable condition caused by long-term exposure to coal and silica dust have reached a 25-year high in Appalachian coal mining states.

Robert Long, a 71-year-old retired Pennsylvania coal miner with black lung and cancer, worked in the mines for 40 years. He spoke on the ever-present issue of poor dust control, especially at the mine he worked for in the last eight years of his career. Long was diagnosed with cancer at 58, which cut short his plans of working until he was 62.

“I can’t go back to work, because I won’t live another three years,” said Long, describing his thoughts when he was first diagnosed with cancer. “So my income is drastically reduced.”

“Those years that you invest, you save your money to provide for you framily, your kids, your grandchildren — you better have made some prior provisions to do that or you’ll go broke,” he continued.

Long goes on to describe how living with black lung has affected his day-to-day life.

“I don’t care if you get up from your couch watching TV and go and get a bowl of ice cream, by the time you get back to your chair, that’s just about all you can do,” he said.

“Want to mow your lawn? Good luck with that,” he continued. “I had to buy a tractor this year. I struggled for a year mowing 6/10 of an acre at my house with a push mower. It took me 9 hours, I had a chair with me all the time.”

He went on to talk on what it was like not being able to play with his grandchildren.

“No matter what they want to do, you can’t participate,” said Long. “You have to say, ‘I’m sorry honey, I can’t run.’ I can’t even throw a ball too well.”

“They don’t understand that, they’re young,” he added. “They don’t recognize what you’re going through; but it’s real to all of us. Every one of us.”

The reception in Congress was mixed. Sen. Bob Casey (D-PA) hosted the roundtable discussion and introduced the Black Lung Benefits Improvement Act, S.2205, which would help miners access benefits and reinstate cost-of-living increases. And Rep. Robert Scott (D-VA) introduced H.R. 3876 to restore and extend the excise tax to support the benefits fund.

Senate Majority Leader Mitch McConnell (R-KY) met with miners for a couple minutes and offered assurances that benefits would not be cut, but he did not commit to restoring the tax.

“We rode up here for 10 hours by bus to get some answers from him because he represents our state,” George Massey, a miner from Harlan County, Ky., told Reuters. “For him to come in for just two minutes was a low-down shame.”

While in Washington, D.C., the miners also urged the U.S. Mine Safety and Health Administration to enact a rule to lower the amount of silica miners can be exposed to in an effort to prevent the spread of this incurable, but preventable, disease.

The miners were joined by numerous organizations including chapters of the Black Lung Association, Appalachian Citizens Law Center, BlueGreen Alliance, Kentuckians For The Commonwealth, The Alliance for Appalachia and Appalachian Voices.

CONTACT YOUR REPRESENTATIVE NOW and ask them to sponsor H.R. 3876 to restore black lung benefits! Call 855-980-2358 to hear a brief message about what to say, and then be connected with your Representative.