The surge of black lung disease’s most progressive form, Progressive Massive Fibrosis (PMF), is significantly larger than what federal regulators report, two new investigations have found. 

An NPR investigation published last December determined PMF is about 10 times higher than the number identified and reported by NIOSH, who gets its data from voluntary participation rates in free black lung screenings. NPR gathered data from 11 black lung clinics in Virginia, West Virginia, Pennsylvania and Ohio, which found a total of 962 cases from 2000 to 2016. “The true number is probably even higher,” NPR says. “Some clinics had incomplete records and others declined to provide data.”

The same week NPR released its report, NIOSH released a separate report pertaining to a cluster of 60 PMF cases in coal miners that had been identified at a single eastern Kentucky radiology practice from January 2016 to August 2016, all of which had been undetected through the national surveillance program.

These cases were brought to NIOSH’s attention in June 2016, who contacted the agency to report a sharp increase in PMF cases during the past 2 years. About 43% of the miners identified with PMF were roof bolsters for all or most their careers and about 33% were operators of continuous miners, a type of machine that produces a constant flow of coal from the working face of the mine.

Following the two reports, two members of Conrgress wrote a letter to DOL, NIOSH and the U.S. Department of Health and Human Services requesting a collective effort between the  agencies to secure a "reasonable estimate of the number of PMF and other severe cases of pneumoconiosis diagnosed in active and former coal miners over the past 5 years."

Black lung disease is caused by overexposure to respirable coal mine dust and found in coal miners. PMF is incurable and fatal. Death usually occurs within a couple years.

The Black Lung Disability Trust Fund is about $6 billion in debt. The fund receives its funding from an excise tax on each ton of coal sold or used, reimbursements and interest, fines and penalties assessed responsible mine operators, and short-term advances from the Treasury, The number of Black Lung Fund beneficiary claims increased by about 38% from 2012 to 2014, with an average 6,310 claims during that time.

In 1977, the Federal Coal Mine Health and Safety Act of 1977 (Coal Act) established dust limits for U.S. coal mines. NIOSH began to administer the Coal Workers Health Surveillance Program (CWHSP), which aims to reduce the incidence of coal workers’ PMF. PMF fell sharply in the 1990s, with 31 cases across the decade, as identified by CWHSP.

Participation in NIOSH's CWHSP screenings is voluntary, so it is difficult to create a unified dataset that accurately captures the number of PMF cases. Participation rates in CWHSP are at a historical low. During the past 5 years, only 17% of Kentucky coal miners participated in the program. Based on the data from the miners who were scanned, 1 in 20 Appalachian coal miners will have PMF by the end of their life.

The factors that led to the increase in PMF cases in the Kentucky region and whether an undetected surge of PMF cases has also taken place in other mining regions is unknown, NIOSH says. NIOSH suggests the increase might be do to recent industry trends:

Recent industry trends might have led to a higher number of miners seeking radiographs, either to gather information about their health status or to seek benefits through state workers’ compensation or federal black lung programs. A steep decline in coal miner employment and coal production during recent years has occurred (8), with 1,501 jobs lost in Kentucky (17.9% of state coal workforce) during the first quarter of 2016. Miners might feel that future coal-related employment is unlikely and that previous barriers to health-seeking behaviors have been removed. For example, in Kentucky a miner has 3 years to file a state compensation claim “after the last injurious exposure to the occupational hazard or after the employee first experiences a distinct manifestation of an occupational disease in the form of symptoms reasonably sufficient to apprise the employee that he or she has contracted the disease, whichever shall last occur.” Because the earlier stages of coal workers’ pneumoconiosis can be associated with few or no overt symptoms, and because coal mining jobs have historically been among the best-paying in the region, some miners might have chosen to not seek radiographs or other health-related information during the earlier stages of their career to avoid threatening their ability to continue working in the industry.

“The findings in this report serve as a reminder that more than 45 years after the Coal Act’s passage, one of its core objectives has not been achieved,” NIOSH says in its report. NIOSH says it will focus active surveillance measures on miners working in central Appalachia in the coming years.