In a hospital in far Eastern Kentucky this week, a stone’s throw from the West Virginia border, a group of former coal miners wore oxygen masks and heart monitors and walked on treadmills about as far as they could.
They are patients of New Beginnings Pulmonary Rehab, a group of clinics in Central Appalachia that focuses on strengthening the lungs of former miners afflicted with black lung disease, a deadly and incurable illness whose prevalence has spiked in recent years.
With the disease surging across the region, New Beginnings is scheduled to double its number of clinics with three new openings — one in Harlan on Sept. 1; one in Tazewell, Va., on Oct. 1; and one in Elkhorn City in Pike County, that will open later this year or in early 2020.
Marcy Tate, who opened the first clinic six years ago in Norton, Va., said the expansion will create space for dozens more patients and provide easier access to care — some former miners drive more than 100 miles each way to access pulmonary care.
The Harlan location already has 46 patients screened and ready to attend when it opens Sept. 1, as well as transfer patients who live in Harlan County but have to drive over winding mountain roads to clinics in Whitesburg or Norton.
“This will literally be a life-changing experience for these men,” Tate said.
Among the former miners in South Williamson was Harold Stiltner, 50, who worked underground in Pike County for 29 years.
Stiltner exercises here twice a week, hoping to build up the parts of his lungs that are still usable. He said it’s helped his breathing and energy levels, and his morale.
“I’d say if you just set around you wouldn’t make it long,” he said.
Another is Danny Smith, 47, a former miner who has been featured on a number of national stories about black lung, including a PBS FRONTLINE documentary.
Smith worked just 12 years underground, and suffers from the most severe form of black lung, called progressive massive fibrosis.
Smith said his disease has worsened in recent months. He hopes the clinic will help allow him to see his children graduate college.
“I was wanting to see grandchildren, but I’m thinking that’s not gonna happen,” Smith said.
Black lung continues to surge across Appalachia
Both Smith and Stiltner exemplify a growing trend of younger miners being afflicted with the disease, and with black lung on the rise, Tate said the demand for pulmonary clinics designed specifically for black lung victims will only increase.
Studies published by the National Institute for Occupational Safety and Health show that black lung was all but eradicated in the 1990s, with just 31 cases of progressive massive fibrosis reported nationwide between 1990 and 1999.
A 2016 NIOSH study, however, showed that a single radiologist identified 60 current and former miners, most of them from Eastern Kentucky, between January and August 2015 who had the most severe form of black lung.
Tate said she had lined up one 38-year-old patient for her clinic, but the miner died before he could begin treatment. He worked just 14 years in the mines.
New Beginnings patients pay for the clinics using workers’ compensation benefits from coal companies and the Black Lung Disability Trust Fund, a federal program that pays black lung victims and widows a monthly stipend and healthcare costs.
The per-ton tax coal companies pay to fund the trust fund, though, was cut in half at the beginning of 2019. Some black lung advocates and healthcare workers said they worry the fund could eventually become insolvent if the tax cut is allowed to continue.
“Anything you take away from these guys right now would be extremely detrimental,” said Brandon Crum, a radiologist in Pikeville who has documented a massive increase in black lung patients in recent years.
Crum said increased dust regulations and the restoration of the tax that funds the Black Lung Disability Trust fund are needed to curb the disease’s growth and treat those who are already afflicted. Both are met with opposition from industry leaders, he said.
“(Black lung) is a huge socioeconomic burden on the family and the community,” Crum said. “Put this on top of the opioid mess, and it’s a double whammy for Appalachia.”
An uncertain future for the Black Lung Disability Trust Fund
Smith, one of the miners from Pike County, is one of about 120 miners that is signed up to go to Washington D.C. later this month and advocate for the trust fund tax restoration, as well as a number of other policy initiatives for former miners.
“I’m dependent on that for my livelihood. Without it, I’ll lose everything,” Smith said. “There’s going to be a lot more sick miners who need help. I can’t afford $1.6 million for a lung transplant.”
The Appalachian Citizens’ Law Center, which helped organize the trip, is accepting donations to help pay for the miners’ travel.
At a meeting of the Black Lung Association of Southeast Kentucky in Whitesburg this week, former miners said they hope to meet with Senate Majority Leader Mitch McConnell during the trip. Some trust fund advocates said the Kentucky senator could play a crucial role in restoring the tax to its former level.
In a statement to the Herald-Leader, a spokesman for McConnell said the senator and his staff “have been working closely with interested parties regarding future funding for the program, and will continue to ensure these important benefits continue.”
“As Senator McConnell has previously stated, the Black Lung Disability Fund benefits continue,” the spokesperson said. “It’s important to note that even though the temporary tax increase expired last year, current benefits for our impacted miners and their families have remained at prior levels.”
According to a report from the U.S. Government Accountability Office, the trust fund owed about $4.3 billion to the U.S. Treasury last year.
Black lung advocates worry the tax cut will force the fund to borrow even more money, leading it deeper into debt and eventually to insolvency.
McConnell’s office declined to provide specific details on how the fund would survive amid the tax cut.
On black lung clinics, McConnell’s spokesperson said the senator, in 2017, helped secure a $658,000 grant for the Owensboro Health Muhlenberg Community Hospital that allowed it to continue providing health screenings for Kentucky miners and purchase new equipment for its Coal Miners Clinic.
‘Get them back to living’
Severe forms of black lung are often debilitating. Multiple former miners at New Beginnings said they are no longer able to walk around a grocery store without stopping. Others said they hope pulmonary rehab will give them the energy and strength to play with their grandchildren again.
The rehab also can detect early signs of pneumonia, and decreases the frequency of hospital visits for its patients, Tate said.
“Our main objective here is get them mobile, get them moving, improve quality of life,” Tate said. “And most importantly, get them back to living, because you can have life in your body and not be living.”
After eight years in the mines, Stiltner said his son quit to avoid contracting black lung like his father.
Stilter and his wife were “tickled to death” when his son decided to quit working underground, he said.
“I’m glad he got out of there,” he said. “It’s tough, now. It really is.”