After a long career of treating coal miners for black lung disease, Edward Petsonk, MD, can’t forget a particular call from a patient’s wife. “She said, ‘Thanks a lot, Dr Petsonk. Now my husband has no job and we have nothing,’” he recalled.
Currently a professor of medicine at the West Virginia University School of Medicine, Petsonk had encouraged the woman’s husband, a miner, to get a chest x-ray to check for mining-related lung disease. The chance that he might file a worker’s compensation claim if occupational lung disease was diagnosed was enough for the miner to lose his job.
“It was a very, very telling story that I felt terrible about,” Petsonk said during a recent interview. The incident caused him to rethink his approach with miners. If he recommended screening, he also thoroughly discussed “the possibility that just getting an x-ray might be really a devastating change in your life.”
As reports of black lung disease, known more formally as coal workers’ pneumoconiosis, have spiraled upward, physicians in Appalachian regions still struggle with how to counsel miners who may have to choose between keeping their job or protecting their health.
Despite federal job protection, some physicians say miners fear retribution for seeking medical advice that could lead to a disability claim, which mine operators have a responsibility to pay. Even if potential retribution isn’t a concern, jobs outside of mining usually can’t match miners’ pay and insurance benefits.
Compounding those challenges is a changing demographic. Once found primarily in miners in their 60s and 70s, the most severe form—progressive massive fibrosis (PMF)—is now being detected in younger, mid-career miners. “We’re already having to evaluate miners for lung transplants in their 30s and 40s,” said Brandon Crum, MD, a former miner who’s now a radiologist at the United Medical Group in Pikeville, Kentucky.
What’s more, some miners with black lung are misdiagnosed because the disease can be mistaken for similar conditions such as emphysema. “The diagnosis is a little tricky,” Petsonk said.
In 1969 Congress passed the Federal Coal Mine Health and Safety Act to protect miners from on-the-job injury and disease. In terms of reducing black lung disease, the legislation was a success. A recent study in the American Journal of Public Health reported that among US underground miners with 25 or more years of experience, the prevalence dropped from about 35% in the late 1970s to a historic low of 5% in the late 1990s. Now the trend is reversing. By 2017, black lung prevalence had climbed to about 12%.
Particularly troubling, however, is the increase in PMF in the heart of coal country—Kentucky, Virginia, and West Virginia. By the late 1990s, PMF prevalence among the longest-tenured underground miners there had dipped to about 0.33%. By 2015, however, prevalence hit 5%, an all-time high.
At his Pikeville clinic, Crum was seeing miners who represented those statistics. In June 2016 at a black lung conference in West Virginia, he met with David Blackley, DrPH, an epidemiologist at the National Institute for Occupational Safety and Health (NIOSH) and lead author of the studies mentioned above. Crum told Blackley about a cluster of PMF cases at his clinic: 60 diagnoses between January 2015 and August 2016.
Crum, Blackley, and 3 of his NIOSH colleagues reported that on average, the miners were about 60 years old and had been mining for about 29 years. But some were still in their 40s and others had been mining for much less time, about 15 years.
Blackley and several colleagues also documented 416 PMF cases among 11 200 former miners who had chest x-rays at 3 federally funded black lung clinics in rural southwest Virginia between January 2013 and February 2017. Although their average age was 62 years, some were in their 30s and 40s. On average, they had been mining for 28 years but 23% had worked in the mines for 20 years or less, including 5 miners who had been on the job for fewer than 10 years.
“We were surprised by the sheer volume” of miners with advanced disease, Blackley said. “It’s worth keeping in mind that these are mostly former miners but these aren’t old guys; these are miners in their 50s … these were people who should still be able to go in and do their job, but because of exposures that happened at their job they can’t do that anymore.”
Crum and others suspect these trends are a result of the most accessible seams of coal having been depleted. To get at the less accessible seams, they have to cut through solid rock, sometimes for months. That produces silica dust, which inflames and scars the lungs. High levels of exposure to silica dust can accelerate the disease process; in some cases symptoms develop within months, rather than years, of exposure.
Federal law requires mine operators to offer free lung disease screening to miners when they start work and every 5 years thereafter for as long as they work in the mines. The NIOSH Coal Workers’ Health Surveillance Program manages the screening clinics, which offer confidential chest x-rays, spirometry, respiratory health assessments, hypertension screening, and health history tracking. The clinics hope to identify black lung disease early so miners can take steps to prevent progression.
Some miners take advantage of the free screenings, but most do not. “Participation is in the 30% to 40% range,” Blackley said. This is despite NIOSH’s efforts to offer screening at brick-and-mortar clinics and mobile units in summertime to cover mountainous coal country terrain that may be inaccessible during winter weather. “We blast communities with information on social media, radio, and in print,” Blackley said.
If mine operators don’t welcome the mobile units at the mines, “they’ll set up in a Walmart parking lot—somewhere miners can come and get their confidential screening without as much concern for reprisal if that’s something they’re concerned about,” Blackley said.
Reports or fears of reprisal are anecdotal, Blackley noted. The National Mining Association, which represents the US mining industry, points to language in the Federal Mine Safety & Health Act of 1977 that prohibits firing or discrimination if miners undergo a medical evaluation or request a transfer to a job site with lower coal dust exposure. National Mining Association spokesperson Ashley Burke said in an email that the association supports mandatory miner participation in the NIOSH surveillance program.
Occupational pulmonologist Cecile Rose, MD, MPH, was on a National Academies of Sciences, Engineering, and Medicine committee that examined methods used to control miners’ exposure to coal mine dust. She said the committee “struggled with the fact that we can’t get really get true incidence or prevalence rates” from programs like the NIOSH screening clinics because of low miner participation rates.
“But the committee was reluctant to recommend that participation in these programs be mandatory,” she said, because no plan exists to protect miners’ wages or help them find other jobs if they’re diagnosed with black lung disease. Without such a plan, requiring miners to be screened “felt too assertive,” said Rose, a professor of medicine at National Jewish Health in Denver and the University of Colorado School of Medicine.
She noted that the federal Part 90 option guarantees miners with evidence of early black lung disease on a chest x-ray the option to work in less dusty mine conditions without a pay cut. But a 2017 study showed that of 3547 miners who were eligible between 1986 and 2016, 14.4% exercised their option.
Few participate “probably because there’s a perception that if they move into a Part 90 job, they’ll be the first ones to be laid off,” Rose said. Layoffs have become widespread. Coal industry employment in Appalachia declined by 27% while coal production fell by 45% from 2005 to 2015, according to the Appalachian Regional Commission.
Situations like the one Petsonk recalled haven’t necessarily diminished with the passage of legislation or time.
“It’s still a problem,” said Randy Forehand, MD, who sees miners in several clinics in southwestern West Virginia, southern Virginia, and eastern Kentucky—the area where some experts call black lung disease an epidemic. “There’s a lot to discuss—the decision to work or the decision to find other employment.”
Good job opportunities outside of mining are nearly nonexistent. “[A] lot of people who live and work in the coal fields really have no other options,” Petsonk said. “[C]oal mining jobs allow [miners] to put their kids through college, and to have a standard of living that they can’t get in any other industry,” added Bob Cohen, MD, professor of medicine and director of the Occupational Lung Disease Program at Northwestern University’s Feinberg School of Medicine in Chicago.
Forehand said he encourages miners to participate in the NIOSH surveillance program, but some come to him instead. “They just want to know what their current state of health is,” he said. “Usually, if you can create a timeline, you can do a better job of advising miners.”
That timeline usually includes current and previous chest x-rays, results from lung function tests, and an occupational history to try to determine the miner’s level of coal dust exposure. Forehand also considers family history. Because many families in Appalachia have generations of miners, he can look at how black lung may have affected a miner’s parent, grandparent, or beyond and try to estimate an individual’s susceptibility to disease. “[B]lack lung is the result of inflammation, and inflammation is [in part] genetically programmed,” he noted.
At that point, he said, the miner is “at a fork in the road” and has to weigh the pros and cons of leaving the mines. Half or more of the miners he counsels go back to work, he noted. “[I]t seems that economics drives the decision more than anything.”
Some physicians are reluctant to make the diagnosis of mining-related lung disease because of repercussions for the miners and themselves, Petsonk said. Miners face time limits to file for benefits. The Federal Mine Safety and Health Act gives them 3 years from the time they’re diagnosed as disabled to file a federal claim. Making the diagnosis starts the clock ticking.
Physicians also face a hassle factor. “[W]hen it comes to things like compensation and disability, I think there are a lot of physicians who really just don’t feel comfortable in those areas,” Petsonk said. “[T]hey don’t want to get involved in that because there are forms to be filled out and then possibly reports have to be filed and testimony and all that kind of thing.”
“[T]here’s a lot of pressure on physicians to not participate in this process,” Cohen said. Physicians who write a medical opinion in favor of a coal miner face being deposed by attorneys representing insurers and mine operators. “It can be very … difficult,” he said.
Since working with Blackley, Crum has spent time trying to educate miners and physicians about the black lung resurgence. “[M]iners now have no idea that this disease is affecting them in their 30s, their 40s, and their 50s to such a degree of severity that it‘s leading to significant morbidity or even lung transplants,” Crum said. “This is a whole new situation.”
He has joined with Blackley and his NIOSH colleague Scott Laney, PhD, to talk about black lung disease at medical schools in Kentucky and Tennessee. “We’ve lectured probably close to 1000 medical providers and students,” Crum said.
“It’s important to get [information] out to our doctors because a lot of men that I see in their 30s and 40s … are getting treated for other things because the doctors aren’t used to seeing this severe black lung in men of that age.”
Crum and his colleagues also provide information for miners on social media about the importance of being screened. The NIOSH mobile surveillance unit paid a visit to their clinic earlier this year, and miners came out for screening in healthy numbers. Screening, Crum said, “is much more important now than it was 20 years ago.”
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