PRESTONSBURG, Ky. -- Ray Marcum bears the marks of a bygone era of coal mining. At 83, his voice is raspy, his eastern Kentucky accent thick and his forearms leathery. A black pouch of Stoker's 24C chewing tobacco pokes out of the back pocket of his jeans. "I started chewing in the mines to keep the coal dust out of my mouth," he says.
Plenty of that dust still found its way to his lungs. For the past 30 years, he's gotten a monthly check to compensate him for the disease that steals his breath -- the old bane of miners known as black lung.
In mid-century, when Marcum worked, dust filled the mines, largely uncontrolled. Almost half of miners who worked at least 25 years contracted the disease. Amid strikes throughout the West Virginia coalfields, Congress made a promise in 1969: Mining companies would have to keep dust levels down, and black lung would be virtually eradicated.
Marcum doesn't have to look far to see that hasn't happened. There's his middle son, Donald, who skipped his senior year of high school to enter the mines here near the West Virginia border. At 51, he's had eight pieces of his lungs removed, and he sometimes has trouble making it through a prayer when he's filling in as a preacher at Solid Rock Baptist Church.
There's James, the youngest, who passed on college to enter the mines. At 50, his ability to breathe is rapidly declining, and his doctor has already discussed hooking him up to an oxygen tank part-time.
Both began working in the late 1970s -- years after dust rules took effect -- and both began having symptoms in their 30s. Donald now has the most severe, fastest-progressing form of the disease, known as complicated coal workers' pneumoconiosis. James and the oldest Marcum son, Thomas, 59, have a simpler form, but James has reached the worst stage and is deteriorating.
Men with lungs like the Marcums' are not supposed to exist. In the hard-won 1969 law, Congress demanded that dust be controlled and new cases of disease be prevented. The idea was that, even if black lung didn't disappear, there would be a small number of mild cases and virtually no one like Donald and James Marcum, said Dr. Donald Rasmussen, a pioneer in recognizing and diagnosing black lung.
"In 1969, I publicly proclaimed that the disease would go away before we learned more about it," Rasmussen, now 84 and still diagnosing miners, said in a recent interview at his office in Beckley, W.Va. "I was dead wrong."
Throughout the coalfields of Appalachia, in small community clinics and in government labs, it has become clear: Black lung is back.
The disease's resurgence represents a failure to deliver on a 40-year-old pledge to miners in which few are blameless, an investigation by the Center for Public Integrity and NPR has found. The system for monitoring dust levels is tailor-made for cheating, and mining companies haven't been shy about doing so. Meanwhile, regulators often have neglected to enforce even these porous rules. Again and again, attempts at reform have failed.
A Center analysis of databases maintained by the federal Mine Safety and Health Administration found that miners have been breathing too much dust for years, but MSHA has issued relatively few violations and routinely allowed companies extra time to fix problems.
MSHA chief Joe Main issued a statement in response to the findings: "The current rules have been in effect for decades, do not adequately protect miners from disease and are in need of reform. That is why MSHA has proposed several changes to overhaul the current standards and reduce miners' exposure to unhealthy dust." Similar attempts at reform have died twice before.
From 1968 through 2007, black lung caused or contributed to roughly 75,000 deaths in the United States, according to government data. In the decades following passage of the 1969 law, rates of the disease dropped significantly. Then, in the late 1990s, this trend reversed.
Many of the newer cases have taken a particularly ugly form. While rates of black lung overall have increased, incidence of the most severe, fast-progressing type has jumped significantly. These cases, moreover, are occurring in younger and younger miners. Of particular concern are "hot spots" identified in central Appalachia by the National Institute for Occupational Safety and Health, NIOSH, a government research agency. Though levels of disease are still below what they were before 1970, medical experts and miners' advocates are alarmed.
"I think any reasonable epidemiologist would have to consider this an epidemic," said Scott Laney, a NIOSH epidemiologist. "All cases of [black lung] are preventable in this day and age, but these cases of [the most severe form] are just astounding ... This is a rare disease that should not be occurring."
The National Mining Association, the main trade group representing mining companies, disputes some of NIOSH's data but agrees that black lung's resurgence is a problem in need of attention. To the association, however, it is primarily a regional phenomenon of central Appalachia -- one that doesn't justify new national rules. What's needed, the group says, is further study and better enforcement of current standards.
Researchers are struggling to explain what, after years of progress, has caused the backsliding and why black lung, traditionally viewed as an old man's disease, is striking younger and younger miners and robbing them of their breath faster and faster. They are trying to figure out why men like the Marcums are the new face of black lung.
'A diabolical torture'
"They call me Lucky," retired miner James Foster says as he takes off his shirt and presses his chest against an X-ray machine in the back of an RV in Wharton, W.Va. "Worked 37 years in all kinds of mines. Been covered up twice. Been electrocuted."
His brushes with death aside, he's here because he fears there may be one hazard he can't dodge. "I come in here to file for my black lung," he says. During a recent heart surgery, he says, doctors said they saw what appeared to be signs of the disease.
He's one of a handful of miners on an April afternoon to move through the RV parked at the fire department in Wharton, in the heart of coal country. Inside, a team of NIOSH workers shepherds them from station to station: medical history, questionnaire, breathing test, chest X-ray. Foster hopes the tests will provide evidence he can use to submit a claim for benefits. Other miners are still working and want to make sure their lungs are clear.
It is from this rolling medical unit, in part, that NIOSH has documented the return of black lung. For decades, miners have been entitled to free X-rays every five years, and this has helped track the drop in the disease's prevalence. After the data started showing a reversal, NIOSH sent its RV out to gather more data in 2005.
What these researchers found, combined with data from routine medical monitoring, was worrisome: From the 1970s through the 1990s, the proportion of miners with signs of black lung among those who submitted X-rays dropped from 6.5 percent to 2.1 percent. During the most recent decade, however, it jumped to 3.2 percent.
Even more disturbing: Prevalence of the most severe form of the disease tripled between the 1980s and the 2000s and has almost reached the levels of the 1970s.
In a triangle of Appalachia -- southern West Virginia, eastern Kentucky and western Virginia -- the numbers were even higher. The rolling unit found a disease prevalence of 9 percent in Kentucky from 2005 to 2009, for example.
A wake-up call for some came after the Upper Big Branch explosion in southern West Virginia in April 2010, which killed 29 miners. Of the 24 who had enough lung tissue for an autopsy, 17 had signs of black lung. Some had fewer than 10 years of experience in mines; they ranged in age from 25 to 61.
The disease leaves miners' lungs scarred, shriveled and black. They struggle to do routine tasks and are eventually forced to choose between eating and breathing.
"No human being should have to go through the misery that dying of [black lung] entails," said Dr. Edward Petsonk, who treats patients with black lung and works with NIOSH. "It is like a screw being slowly tightened across your throat. Day and night towards the end, the miner struggles to get enough oxygen. It is really almost a diabolical torture."