Black Lung Patient Races Against Clock for Transplant, Company Stalls

Jun 12, 2014

Bailey is carrying a bag with an on oxygen tank on his back. Medical tubes wind from the tank around his ears and over his slender cheeks carrying oxygen through a periodic puff to his nose.
Credit Jessica Lilly

Robert Bailey was a coal miner for 36 years. He began in McDowell County and after it became too hard to breathe, he retired from a mine owned by Patriot Coal in Boone County.

“Mostly because of my health and my breathing," Bailey explained between oxygen puffs. "My black lung condition.  I got where I felt like I couldn’t perform the way that I felt like I needed to."

In 2009 Bailey filed for disability and black lung benefits. After a few years of evaluations, and paperwork, the U.S. Department Of Labor determined that he deserved a monthly payment and medical care, which is a feat in itself. All the while, Bailey was struggling just to breathe.

"It's almost like drowning. You might breath as hard as you can breathe but you can't feel the air."

Bailey describes what it's like to live with Black Lung:

“A person don’t really understand. It’s almost like drowning. You might breath as hard as you can breathe but you can’t feel the air. You’re not getting any quality no use out of it. Even though you are breathing it just don’t help you and you feel your whole system shutting down like you’re going to melt to the floor.”

An investigation into the misconceptions of black lung and maze of benefits by the Center for Public Integrity revealed a system in which coal miners were fighting an unfair battle for benefits. CPI found that the industries’ go to law firms had been withholding evidence that proved miners qualified for benefits because they had the debilitating disease, pneumoconiosis or black lung.  It also found that certain doctors rarely and sometimes never diagnosed patients to have the disease.

Bailey says he had tests done to rule out cancer, similar to Gary Fox’s case which was at the center of the CPI investigation. Like Fox, doctors found that Bailey needs a lung transplant. That exam he says was in February when doctors confirm Bailey is in a race against the clock.

“They told me that as soon as my testing was done that they would put me on the list," he said. "So that tells me that they don’t’ think that my lungs have very much life left in them. Now I’m in a waiting game of waiting on the insurance to verify their approval for me to receive this treatment."

Unfortunately, former miner Gary Fox died while waiting on a transplant.

Doctors made an appointment at a hospital in Virginia about Bailey’s lung transplant. The original date was May 27. But in a letter dated April 23 Patriot Coal’s insurance company, Underwriters Safety and Claims informed Bailey, the company was not approving the next appointment.

The letter gave no timeline indicating when they would make the decision except to say “later”.

Wednesday as Bailey prepared to leave for his appointment, he still didn’t have answers.

So, we called the Underwriters to see what needed to be evaluated since Bailey was already approved for black lung benefits and was receiving them. Bailey’s medical records from Bluefield Regional Medical Center indicated two mostly black biopsies and findings of “severe, complicated pneumoconiosis” or black lung.

But the company would not comment even with Mr. Bailey’s permission.

So we reached out to Patriot Coal. Shortly after we sent that email inquiring about black lung benefits, we heard from Bailey as he traveled to his appointment. He said he was just informed the Underwriters planned to pay for the visit.

Then in an email, Janine Orf, Vice President of Investor Relations with Patriot Coal said:

“As with all healthcare benefits, procedures are in place for medical professionals to review individual cases and determine appropriate treatment.  Patriot continues to provide approved black lung benefits in accordance with our commitments. Patriot cannot comment on individual medical cases.”

Bailey is seeing doctors in Virginia Thursday about a lung transplant. 

Through it all, Bailey says he’s not angry. He’s put the situation in God’s hands and depends on his faith to guide him.

“Transplant I don’t really want," he said. "I'm hoping for greater things. I’m hoping for a healing but I’ll leave that in the hands of God. Whichever direction I have to go whether it’s through healing or transplant or whatever.”