Federal officials are examining potential barriers, such as a fear of retaliation from employers, that may explain why only about one-third of coal miners participate in a program to screen for black lung disease even as the number of workers suffering from the deadly condition is rising.

The lack of participation concerns lawmakers and the federal agency that administers the program, the National Institute for Occupational Safety and Health. The institute, part of the Centers for Disease Control and Prevention, plans to issue a congressionally-mandated report on the issue by the end of March.

The consensus among health advocates is that miners are afraid that participating in the screenings will hurt their careers because employers don’t want to have to deal with a sick employee.

“It’s a known fact that there have been people who were either dismissed or discriminated against because they went for black lung screening or benefits,” said Brenda Marion, project director for the New River Health Black Lung Clinic in Scarbro, West Virginia.

She said that the perception among some miners is that if they are screened and a problem is found, the employer might fire them because of a reluctance to pay for their health care or other benefits, or because the company doesn’t want to move the employee into a job with less exposure to dust.

The Coal Workers’ Health Surveillance Program has offered coal miners free chest X-rays and other screening services since 1970. In addition to helping miners find out if they’re affected by black lung, the program also collects national data about the disease’s prevalence, and last year found that it had reached its highest level in 25 years. The institute that runs the program called the situation an epidemic.

Ten percent of coal miners who worked in mines for at least 25 years have black lung, up from 7 percent in 2012, the last time an estimate was made. Miners in the central Appalachian region, including Kentucky, Tennessee, Virginia and West Virginia, are even more at risk, with a black lung prevalence of 25 percent.

It’s particularly important that younger workers get screenings, Marion said, because in recent years she’s seen black lung in miners who haven’t spent as much time underground as in earlier eras. She said this might be due to new drilling techniques that result in higher exposure levels or longer hours for workers.

The federal program is not the only option for the nation’s 50,000 miners to get a black lung diagnosis. Coal mines are also supposed to arrange for employees to have access to screenings, but mistrust is still an issue when the employer is involved. Seeking a doctor independently is also an option, but that can require jumping through insurance hoops or an out-of-pocket payment.

The goal behind the federal program was to boost early detection, so that a miner with the early stages of the disease could be transferred to a job with less dust exposure to slow progression, according to Cara Halladin, a researcher in NIOSH’s respiratory health division.

“It had good intentions, but a lot of people aren’t participating,” she said in an interview. “When they are participating, they’re participating later in their careers.”

That means by the time it is detected, the disease is already in a more advanced stage that can’t be slowed.

NIOSH wants to boost participation above the current 35 percent of miners who take advantage of the screenings, and recently sought public comments about the barrier to access.

Just eight comments were submitted in response to the CDC’s request for public input, but almost all agreed that the perception of confidentiality and discrimination against employees who sought the screenings was a major barrier.

Halladin said that confidentiality was a real concern that the CDC often hears. And while it would be illegal for an employer to fire an employee explicitly for their health status, “that doesn’t prevent them from being fired for other reasons or being discriminated against in other ways,” she said.

Phil Smith, director of communications and government affairs for the labor union United Mine Workers of America, said that while union workers don’t have to worry about discrimination based on health status, at-will employees at non-union mines don’t have the same protections.

“The last thing that a company wants is somebody working at their mine who can later prove that they contracted black lung at their mine,” he said.

Workers’ concerns

While NIOSH says the screenings are confidential, the coal mining companies have to pay for the screenings themselves and know who has received one. The issue arises once miners know their status and choose whether to exercise their so-called “Part 90” rights, which require employers to transfer employees with black lung to a different job at the same pay rate. The mine would also be on the hook for paying the miners’ disability benefits.

Miners fear that invoking their rights “will result in their eventual demotion or termination from work, and thus make it difficult to find future work,” according to the comments from the Appalachian Citizens’ Law Center Inc.

The coal mining industry disputes that access is an issue. A representative for Murray Energy, the fourth-largest coal-mining company in the U.S., said that its mines post information about where X-rays are available and grant access to NIOSH’s mobile screening van.

Jason D. Witt, Murray’s assistant general counsel, also said that the mines only know about the diagnosis if a miner exercises Part 90 rights.

“Murray Energy Corporation does not retaliate against miners who participate in the CWHSP or who has received a positive diagnosis, or for any other reason,” he said in an email. He said that Murray has only two miners who have ever chosen to invoke the Part 90 rights — one who is still employed, and another who recently retired.

A spokeswoman for the National Mining Association, which represents coal and other mining companies, echoed that sentiment and cited federal law that bans discrimination based on a medical evaluation.

“NMA is not aware of any case where an operator has terminated a miner, or retaliated in any way, when testing showed evidence of” black lung, Ashley Burke, the association’s senior vice president for communications, said in an email.

Other issues raised included the lack of clinics certified to conduct the screenings in Western states, meaning that it’s more costly for miners to travel for the screenings or requires them to take time off.

All of the commenters agreed that barriers existed — except for one. NMA, the industry’s trade group, argued that there were no impediments at all to access, and that the best way to boost participation would be to make screening mandatory.

Another commenter, Aysha A. Bodenhamer, an assistant professor of sociology at Virginia’s Radford University who specializes in rural health issues, also said the screenings should be mandatory. That, she said, would “dissolve the power dynamic of bullying those who decide to be proactive and get screened.”

But the miners’ union and others, like the American Public Health Association, don’t think workers should be compelled to have health screenings. They maintain that the burden should be on the employers to support the screenings and naturally eliminate the perception that being screened is bad for your career.

Smith of the miners’ union said one way to address the concern about confidentiality would be for the mining companies to pay into a pool of money that would pay for screenings nationwide, rather than separate invoices for each company.

But given how hard mining companies fought last year against a tax to help fund black lung disability benefits, Smith was doubtful they would agree to pay more for the screenings.

“They’re not going to want to pay any more money into something that identifies people with black lung,” he sad.

Asked about that idea, Witt from Murray Energy replied: “We currently pay for our employees’ screenings and believe the current program to be satisfactory.”