"I give up a little bit of my world each day"

NPR is running an extraordinary series on the return of a disease we thought we had beaten:

The Federal Coal Mine Health and Safety Act of 1969 was supposed to sharply cut exposure to coal mine dust. The act set a standard for coal dust exposure (2 milligrams per cubic meter of air), which was as little as 1/4 of the concentrations miners breathed at the time.

The act's passage followed a 23-day unauthorized and rowdy strike in which 40,000 West Virginia coal miners demanded government efforts to prevent the disease and to compensate victims.

By the end of the year, tough dust exposure limits were in place. Miners were offered free diagnostic chest X-rays every five years, and federal compensation became available. The X-rays showed 4 in 10 miners tested had black lung. The disease killed 1,800 miners in a single year. But diagnoses soon plunged more than 90 percent, according to NIOSH data.

"They anticipated that no one would develop progressive massive fibrosis," says 84-year-old Donald Rasmussen, a pulmonologist in Beckley, W.Va., who says he's tested 40,000 coal miners in the last 50 years.

"In 1969, I publicly proclaimed that the disease would go away before we learned all about it," he adds. "And I was dead wrong."

Rasmussen first started charting an increase in serious black lung cases about 15 years ago.

"We began to see the appearance of younger miners who had worked in the mines only since the dust suppression following the '69 act that were showing up with complicated pneumoconiosis or progressive massive fibrosis," he says.

Since 1970, NIOSH epidemiologists documented test results for 43 percent of the nation's coal miners. In 1995, the tests began to indicate more and more black long, rapid disease progression and the unexpected occurrence among relatively young miners.

"From the patterns and from the severity, from the prevalence of the disease, this must be a situation in which the dust in many, many mines is simply not adequately controlled," says Edward Petsonk, a pulmonologist at West Virginia University and a consultant for NIOSH. "There's nothing else that could possibly cause this."

And its human toll:

"Now it feels like I've got a heavy wet sack on each lung," McCowan says, between long, deep breaths. "Breathing has become a conscious effort. ... It seems like I give up a little bit of my world each day, that it gets smaller and smaller." 

Simple tasks become enormous challenges — "a Mount Everest every day," he calls it — including holding his 2-year-old grandson.

"I say, 'Little buddy, I got to put you down for a few minutes,'" McCowan says with a deep sigh. "And he's learned to run a little bit. He'll say, 'Run, paw-paw, run.' He wants me to chase him. And I can't."