Archive Dive Day 36, 2006: Kari Lydersen talks with Bob Cohen, a leading US doctor in the fight for the treatment of black lung, in this cover story of the March 31, 2006 issue.

Eli Wallace, a 77-year-old retired coal miner from West Virginia, spent over half his life working for Peabody Energy, one of the country’s largest coal companies. Sometimes he crawled three miles a day on his knees through 27-inch-high tunnels or walked seven miles through bigger ones. As a shooter he drilled holes in mine walls and packed them with explosives, yelled “fire in the hole,” and ran for it. As a fire boss he went into the mine before the rest of the workers to test the levels of carbon monoxide, oxygen, and methane. He often worked 16 hours a day seven days in a row, with only one day off between stretches. Most of the time he was inhaling coal dust.

Wallace has been short of breath for 32 years, and it’s gotten significantly worse in the past few. He wheezes and can no longer climb stairs. He coughs up 12 ounces of dark brown sputum a day. In 1971 he was told that he had black lung, or pneumoconiosis, a disease caused by long-term exposure to coal-mine dust. The dust scars the lungs, leading to chronic bronchitis and emphysema, but there can be decades between when miners are first exposed to coal dust and when they start showing symptoms. The disease can get progressively worse even after exposure to the dust stops, and in severe cases patients need an oxygen tank to breathe. Black lung isn’t easy to diagnose, and it can be difficult to prove that coal dust caused a given miner’s symptoms.

Wallace, whose father, also a miner, died of black lung at age 75, now lives on social security and a small pension. He has Medicare and supplemental insurance, but they don’t cover all of his health care expenses. His daughter Traletta says he gets by partly because she and her siblings help him out. “It’s so hard with so little income,” she says, “and the way these companies are trying to stop pension payments to retired people you can’t even always depend on that continuing.”

For ten years Wallace has been trying to get federal black lung benefits, which would provide him with free care for the disease and a modest stipend for the rest of his life, but his claim has been rejected. “The process is very frustrating for him and me,” says Debbie Wills, director of the West Virginia black lung clinic where he’s been a patient since 1988. “We know he has black lung disease. We know he can’t do his job from that lung disease. But his breathing results don’t fit into a little box the [Department of Labor] made up to say this is total disability.”

When Wallace decided to file another claim again last March the clinic staff told him he should see a pulmonologist. They didn’t have one on staff, but they knew there was one in Chicago who worked with black lung patients. So in late January two of Wallace’s daughters drove him here to see Bob Cohen.

Cohen is the 47-year-old medical director of the black lung clinic at Stroger Hospital, one of the country’s best clinics for the diagnosis and treatment of the disease. The only occupational pulmonologist at the clinic, he’s been seeing miners for nearly two decades. He’s also on the federal Mine Safety and Health Research Advisory Committee and the panel investigating the recent Sago mine disaster in West Virginia. He’s worked with the federal government evaluating black lung clinics and developing professional standards for them, and he’s spent time on Capitol Hill asking congressmen not to cut the $6 million line item in the Department of Health and Human Services budget that funds black lung clinics, including his and one downstate. “Dr. Cohen is the best,” says John Stewart, who retired after years in the mines in southern Illinois and is now president of the National Black Lung Association. “He could be making big bucks working somewhere else, but he does this because he loves it and because he cares about miners.”

Cohen sees around five miners a week in Chicago, a third of them from outside Illinois. He also frequently gives depositions defending his conclusions and explaining the information in the miners’ stacks of files. Coal-company attorneys have accused him of being an advocate for miners, so he warns all his patients, including Wallace, that he won’t support them unconditionally, that he’ll report only what he finds. “I never lie,” he says. “I never make anything out to be what it’s not. Everything I say has to stand up to intense scrutiny. But if there is black lung disease I will find it, and I will spare no effort to back up my opinions. I won’t back away from a fight, and I will always advocate for our coal miners if they are in the right.”

Most of the 25 federally funded black lung clinics in the country are in big coal-mining states–West Virginia, Kentucky, Alabama, Wyoming–so it may seem odd that an urban hospital has one. But Illinois was once a big coal state too: in the late 70s it still had 45 mines.

In the 60s and 70s many retired and laid-off miners from around the state as well as Appalachia settled in Uptown, and in 1976 they founded the Chicago Area Black Lung Association to fight for benefits for miners and their dependents. The former miners often went for treatment at what was then Cook County Hospital, but Paul Siegel, a paralegal who helped organize CABLA, says many of them were new to the big city and had trouble navigating the crowded, sprawling facility. “We were bringing people from Uptown to this big, impersonal place where they’d have to make three or four trips and their X-rays would get lost and they’d have to wait so long every time,” he says. “We realized we needed a black lung clinic.” Congress had passed the Coal Mine Health and Safety Act in 1969, authorizing funding for a network of black lung clinics around the country, and CABLA lobbied hard to get one. In 1981 the clinic at Cook County opened.

Cohen, who grew up in Philadelphia, came to Chicago the following year to study in a combined undergraduate-medical school program at Northwestern University. “Northwestern med school was full of wealthy kids who wanted to make a lot of money, and I didn’t want to be like that,” he says. “I didn’t want to be a businessman doctor. I actually wanted to take care of people.” He was drawn to Cook County Hospital because of its racial and ethnic diversity and its mission of treating the poor, but he says his advisers told him to “spend a year getting the goodness out of my system and then work on the Gold Coast. They said Cook County would ruin my career.” He spent the last six months of medical school doing an internship at the hospital, then did his residency there. In 1988 he was hired as an attending physician in the pulmonary clinic that encompasses the black lung clinic, and he’s been there ever since. “I’m a lifer,” he says.

Former miners were among Cohen’s first patients, and in 1991 an attorney asked if he would write a report for a black lung claimant. “I was naive at the time and thought it would just be one report and I’d be done with it,” he says. “Then I realized I was going into a huge storm of a battle.”

In the 60s, miners’ unions, which represented the majority of the industry’s workers, were often led by officials with close ties to coal-company managers, and as a consequence regulation of the industry was poor. Injuries and deaths from accidents were common. According to the Mine Safety and Health Administration, between 163 and 295 miners were killed in accidents every year that decade, though that was better than in the 30s, when more than 1,000 died annually. (Last year 22 died.) No one did much to control the level of airborne coal dust in the mines, and black lung was also common. The National Institute for Occupational Safety and Health (NIOSH) reports that in 1970 a third of miners surveyed showed evidence of black lung on X-rays, and according to the U.S. Bureau of Mines, black lung was listed as the cause of death for 55,467 miners between 1968 and 1990.

In February 1969 a wildcat strike near Beckley, West Virginia, quickly spread across the state until work in its mines virtually stopped. Among the strikers’ demands was federal legislation forcing mine owners to control coal dust and provide benefits to black lung victims. At the end of the year President Nixon signed the Coal Mine Health and Safety Act, which, in addition to authorizing funds for clinics, placed limits on dust in mines and set up a program making miners with black lung eligible for free treatment and a monthly stipend (currently $844 a month for a miner with one dependent).

At the time miners with black lung could already get some benefits through state workers’ compensation programs, the amount determined by the degree of disability. The benefits usually came in a lump sum that didn’t go far. When Eli Wallace was diagnosed in 1971 he got several thousand dollars from West Virginia’s program. But he was only 42 and had a large family to support. Other jobs were scarce, so he kept mining for 19 more years. “The problem with men in Appalachia is they don’t want to be sick and they don’t want to not work, because that makes them feel like less of a man for not taking care of their family,” says Debbie Wills. “So he continued to work short of breath and made it through.”

Wallace retired in 1990, at 62. His disease had gotten worse, so he again applied for workers’ comp and received several thousand more dollars. His insurance covered most of his medical bills, but as his health continued to deteriorate, he worried that the bills would keep growing and his portion of them would be harder to pay. In 1996 he applied for the federal benefits.

By then those benefits had become harder to get, because in 1973 responsibility for paying for the treatment and stipends had shifted from the feds to the mining companies, though the program was still administered by the Department of Labor. Ever since, according to miners’ advocates and lawyers, mining companies and their insurers have fought tooth and nail against almost every black lung claim filed at the federal level, as well as workers’ comp claims filed with the states. Bob Cohen says, “There’s an idea among miners that coal companies fight every case–even if it’s a very strong case–to have a chilling effect.”

To qualify for the federal benefits, miners have to be diagnosed with the disease, provide evidence that coal-mine dust contributed significantly to it, and prove that they’re totally disabled, meaning they can no longer work in the mines or do comparable work. Miners past retirement age have to prove they couldn’t do their mining job or comparable work when they retired. Dependents of miners who’ve died of black lung are also eligible for benefits; they must prove the miners died of black lung.

When a claim is filed, a doctor whose fee is paid by the Labor Department examines the miner, and an administrative officer in the department decides whether the miner will receive any benefits. The miner can appeal if the benefits are denied, and coal companies can appeal if they’re granted. If someone appeals, the case goes to an administrative law judge in the Labor Department. An appeal of the judge’s ruling goes to the department’s Benefits Review Board, and then, in Cohen’s words, the case can “bounce like a basketball” between those two agencies for years. If the board ultimately rules in the miner’s favor, the company can appeal to the U.S. Circuit Court of Appeals, as can the miner if he loses.

In the meantime the company can send the miner to doctors of its choosing to be examined. Before regulations that took effect in 2001 limited each side to the opinions of two doctors, companies regularly hired half a dozen or more to testify on their behalf–pulmonologists to evaluate lung-function tests, radiologists to read X-rays, pathologists to evaluate biopsies or autopsies. To make their case, miners can get their own tests done, paying for them out of pocket if they don’t have insurance or their insurance doesn’t cover them, and they can hire expert witnesses, paying for them too if they can’t find someone to help them pro bono. Debbie Wills says Eli Wallace’s case has been evaluated by at least nine doctors: two for the state of West Virginia, two for the Labor Department, four for Peabody Energy (whose officials didn’t return calls for this story), and the doctor he chose himself, Cohen.

“The companies and their insurers use their superior resources to try to overwhelm the claimants with expert evidence,” says Tom Johnson, a Chicago attorney who’s represented many miners in black lung cases. “They spend thousands and thousands of dollars on experts trying to out-opinion and discourage coal miners’ claims. They have a large number of doctors who routinely do work on these claims and routinely write opinions that favor the company.”

By Cohen’s count, some 30 pulmonologists, 20 pathologists, and 30 radiologists from around the country regularly consult for coal companies. By contrast, only around 5 pulmonologists (including himself), 3 pathologists, and 10 radiologists regularly do the same for miners. Staff at black lung clinics say it’s hard to find doctors willing to go through the long, often unpaid process of testifying in black lung cases. As a consequence staffers who have no formal medical or legal training often wind up advocating for miners in court, squaring off against coal-company attorneys and the doctors they’ve hired. Wallace has never been represented by a lawyer in his case; he’s relied on Wills and other staff at the West Virginia clinic.

Cohen, whose clinic bills patients based on their ability to pay if their insurance won’t cover the tests and physical exams, has gone up against coal-company attorneys and doctors in hundreds of cases. “They’ll attack everything about you,” he says. “I’ve been accused of twisting and manipulating the facts. They’ve said I’m completely ignorant of the literature, that I have no idea what I’m talking about.”

The process of settling a single claim can take up to ten years. A federal trust fund, financed by the coal companies, sometimes pays miners benefits while their case is being heard, but if they ultimately lose they’re supposed to pay the money back. In reality they rarely do, because by that point they usually don’t have much money left. Cohen says the process sometimes takes so long the miners die before receiving a final ruling.

Few miners win their cases. According to the Labor Department, only 595 of the 4,659 miners and dependents whose claims were decided in 2005–13 percent–were awarded benefits. In 1980, when more liberal criteria were in place, the figure was 40,067 of 134,603 people, or 30 percent.

Wallace’s 1996 claim was rejected a couple years later on the grounds that he wasn’t totally disabled by the disease, even though he and his advocates say there was no way he could have kept working in the mines at the time he retired. He filed for benefits again in 2000, then withdrew the claim, believing the doctors who’d lined up against him were so hostile he couldn’t win. He filed again in March 2005, which is when the staff at his clinic sent him to see Cohen.

When the Coal Mine Health and Safety Act passed, many experts thought black lung would disappear as an issue by the end of the 20th century. But in 2000 the Mine Safety and Health Administration counted 40,000 miners disabled by the disease, and NIOSH said some 1,000 people were still dying of it every year. Most of these miners were first exposed many years ago, and conditions in the mines have clearly improved: according to NIOSH, the percentage of miners who show evidence of the disease on X-rays has dropped dramatically since the 70s, to 3.2 percent. But miners and their doctors and lawyers worry that the number of black lung cases may start rising again because a renewed interest in coal is drawing more people back into the mines.

Coal already provides over half the nation’s energy, and while our oil reserves are limited, our coal reserves are huge–we have a third of the world’s deposits, enough to last 250 years. According to various reports, at least 114 new coal-burning power plants are planned or already being built across the nation, and according to the Illinois Sierra Club, 12 have been proposed for Illinois.

Illinois coal is high in sulfur, which contributes to pollution, and the passage of stricter controls caused demand for it to drop sharply in the 1990s. By 2004 only 19 mines were still open–most in the southern part of the state–and they employed only 3,500 people. But the new cleaner-burning power plants can use this coal, and three new mines are scheduled to open in the state this year. Officials expect the rising demand will create hundreds of new jobs.

Most of the country’s new mines are strip mines–Illinois has a smaller percentage than other states because it has deeper coal seams–but people who work in them aren’t necessarily safer. They don’t get black lung as often as workers underground, but in 1992 NIOSH researchers found that because they breathe rock dust, many of them get silicosis, which causes similar symptoms.

Black lung is highly preventable if companies take measures to reduce miners’ exposure to coal-mine dust–by using a heavy rock dust to settle and keep it down, spraying water while drilling, providing good ventilation, and supplying proper masks and respirators as well as personal dust monitors, which allow miners to know when dust has reached harmful levels. Cohen says that the use of dust monitors alone could drastically reduce the incidence of black lung but that companies have fought union and legislative efforts to make their use mandatory. The monitors aren’t cheap, and if they were used all the time work would have to stop repeatedly while crews damped down the dust.

Federal regulations require mine owners to test dust levels, but monitoring of compliance is limited. For example, mining companies have to take bimonthly air samples in the mines and send them to the Mine Safety and Health Administration, but union leaders and miners say companies sometimes send in samples taken when no one’s been blasting or even samples from office spaces. Attorney Tom Johnson testified before Congress in 1997 that in the previous seven years 160 coal companies had pleaded guilty to or been convicted of tampering with coal-dust samples. Mines do get inspected–Illinois inspectors show up once a month, federal ones two to four times a year–but dust levels are only one of many concerns.

Union leaders say miners are reluctant to demand better conditions because so many of them are in nonunion mines and fear losing their jobs if they speak up. Less than a third of U.S. mines are now unionized–in Illinois it’s a little less than half–and the number is shrinking. John Stewart of the National Black Lung Association says workers in nonunion mines are reluctant even to come to his organization’s meetings, because it’s seen as prounion. “It used to be when we had a meeting we’d have 50 or 100 people,” he says. “Not anymore. It’s mostly retirees and widows. We don’t get many new miners, because they’re all working in nonunion mines. If the company finds out they’re going to a black lung meeting they’ll be in trouble.”

A 2005 NIOSH study showed that miners in small mines, which tend to be nonunion, were significantly more likely to have black lung that progressed rapidly than workers in large mines, which tend to be unionized. In the small mines, says Grant Crandall, lead counsel for the United Mine Workers of America, there’s “poorer enforcement of efforts to keep dust down. If there’s equipment cutting at the face, you spray water on it, and in tunnels and entryways you spread rock dust to keep the coal dust from getting into the air. Those things are done far more frequently in large mines, because they know they’ll have inspections. The smaller mines just try to scoot by without doing it.”

The day after his visit with Cohen, Wallace’s daughters drove him back to West Virginia. Cohen is still reviewing Wallace’s test results. If he concludes that Wallace does indeed have black lung, Wallace will be able to introduce the report as evidence in his claim.

Cohen won’t discuss his findings as long as Wallace’s case is pending, but he too is worried about where the industry is going. “Black lung disease should not exist–it is a completely preventable disease that we should only be reading about in history books,” he says. “Instead the scary thing is that we’re likely to see more cases as more mines open, new miners are hired, and health and safety regulations are weakened or go unenforced. Unlike the Sago mine explosion, this will be the hidden disaster. These deaths won’t hit the headlines and will take place quietly decades from now.”

Art accompanying story in printed newspaper (not available in this archive): photos/Jon Randolph.