"Time running out on wait for lungs" by Paul Sisson, San Diego Union-Tribune 4/8/2019
Denials and delays in getting on transplant list costing former federal worker precious time
The asbestos fibers filling Fred Rorabaugh’s lungs are killing him. A transplant could buy him some extra time. But he can’t get past the bureaucracy to get on the list.
Though UC San Diego Health’s transplant team declared him a good transplant candidate in October, the 67-year-old former federal worker still hasn’t seen his name added to the transplant list because he still has not received formal approval from the U.S. Office of Workers’ Compensation Programs (OWCP).
Despite months of letters, phone calls and out-and-out pleading, the university and the government agency have not completed the array of tests necessary for his case to move forward, and experts say his experience is emblematic of problems that have become all too common for federal workers injured while working for the federal government.
Meanwhile, the Oceanside resident’s condition continues to worsen.
Last week, doctors admitted him to UC San Diego Jacobs Medical Center in La Jolla because his lung condition had deteriorated significantly. Now that he’s in the hospital, tests that were supposed to have been performed in late 2018 are moving forward more quickly, but Rorabaugh knows he has lost valuable time.
He’s quick to make it clear that his frustration has nothing to do with the health care delivery side of the house.
“The medical part of it has been good,” Rorabaugh said. “These people clearly know exactly what they’re doing. But the approval part of it has been crazy, and I know I’m not the only one who has gone through this.”
He and his family say they understand that getting on the transplant list is no guarantee. It can take months for a set of donor lungs to become available. Going month after month without even making the list, he said, drains a man’s family of that first burst of hope that arrives when doctors say that transplant is a possibility.
“Nobody wants to tell their daughter who just had a baby that grandpa’s not going to be around to hug that baby. That part is painful, truly painful,” Rorabaugh said.
A tide of finger-pointing has brought the former heavy equipment operator and workplace safety educator to this point.
In December, UC San Diego’s lung transplant program notified Rorabaugh that it would not be moving forward with the myriad tests necessary to become a transplant candidate due to “insurance issues.” That was particularly surprising because the federal government approved his claim for asbestos-related lung damage years ago. He is also covered by Medicare and supplemental health insurance.
But the university indicated that it never received approval from the federal government for the testing that he required.
A letter written on Feb. 14 that Rorabaugh received from the workers’ compensation program said just the opposite, stating that they “authorized a number of tests requested by UCSD to facilitate the workup needed to assess (Rorabaugh) for a lung transplant.”
That was news to Dr. Kamyar Afshar, director of the UC San Diego Advanced Lung Disease Program.
“I was told we were not able to obtain any of the financial aspects to get authorization for testing,” Afshar said Friday.
He said the work could have been completed “within maybe a few weeks” after his initial workup in October had the back-and-forth approval process not occurred.
The two sides started talking again after repeated questions about the stalled approval process by The San Diego Union-Tribune. UC San Diego met with a workers’ compensation nurse newly assigned to Rorabaugh’s case and re-accepted him into the program on March 7. The plan at the time was to get his remaining tests completed quickly.
But plenty of diagnostic work remains to be done, and Afshar said he was not sure why things hadn’t moved more quickly once there was a fresh meeting of the minds in late February and early March. Now that the patient is hospitalized, he said, the plan is to move forward at high speed.
“Our goal is to try to get everything expedited as quickly as possible for all of our patients,” Afshar said.
Reluctance
The whole process has been particularly confusing for Rorabaugh because, at first, the transplant programs assured him that he would have no problem getting his transplant covered. His overall good health and the ready assistance of his wife, Diane, meant that he had a good chance of approval.
When UC San Diego initially told him he had been declined for insurance reasons in December, he thought UCLA, which he had also been in contact with, would accept him.
“They stopped returning my calls as soon as I mentioned that it was a federal workers’ comp case,” Rorabaugh said.
It was a similar situation with another transplant program in Arizona. They were willing to take his information, but conversations, he said, made it clear that he couldn’t afford to stay in another city for months after the transplant as is required for acceptance. At various centers, he said, some just leveled with him that no one wants to do federal workers’ compensation cases.
That’s not at all surprising to Daniel Goodkin, a Los Angeles employee rights attorney who specializes in federal employee rights cases. He said the paralegals in his firm spend their days trying to find doctors who will see patients with federal workers’ compensation claims, because most won’t go anywhere near them.
“There are entire cities out there where you can’t find a single doctor who will touch a federal workers’ compensation case,” Goodkin said.
Doctors, he said, usually cite two main reasons why they don’t want to get involved. First, he said, many complain that the workers’ compensation program requires much more paperwork and is much more prone to second-guessing than is commonly required for approval from the average health insurance company or Medicare.
“The doctors tell us that the OWCP wants it explained like you’re explaining it to a 10-year-old, and doctors don’t want to do that. They’re busy seeing hundreds of patients, and they’re not in the business of writing endless reports,” Goodkin said.
Speed of payment once treatment is rendered is the other major factor, Goodkin added.
“They say they just don’t have the time to spend to decipher exactly what it is that the Department of Labor wants in order to receive payment, so they just say, ‘I’m not taking any more federal workers’ comp cases,’ ” Goodkin said.
Reached Friday afternoon, a UC San Diego spokeswoman said that the university health system has no prohibition against treating patients with workers’ compensation claims. But a search of one university database handled by the university’s contracting department turned up no such cases performed in the past 10 years.
Federal workers’ compensation representatives were not available Friday afternoon to discuss Goodkin’s claims.
However, a Department of Labor spokesperson said several weeks ago that transplant is a very rare occurrence among workers’ compensation patients, with just “16 claims created within approximately the last 10 years” involving “conditions related to transplants.”
Stolen breath, stolen life
With the clock ticking on his remaining lung capacity, some might wonder: Why not just get the transplant covered under Medicare?
If only it were that easy.
As noted in Who Pays First? (PDF download), a guide published by the U.S. Centers for Medicare and Medicaid Services, Medicare won’t pay for care that is already covered by a valid workers’ compensation claim.
“Once it’s workers’ comp that’s involved, it’s end of story,” Rorabaugh said.
The experience of losing his lungs, he said, has been bad enough without the insurance insurgency.
Four years ago, no activity, from horse camping to late-night dancing with Diane, seemed out of reach for this tall, trim man prone to wearing casual shirts with collars and slightly mischievous smiles.
Today, just taking out the trash is a struggle.
When he was first diagnosed in 2015, he said, an inhaler was enough for him to continue living an active life. But today he never disconnects from his portable oxygen machine, not even to take a shower.
Receiving that denial letter in December, the Rorabaughs said, was particularly devastating because Fred had just signed a formal contract in November to enter the transplant program.
Everything looked so promising, then it just fell apart.
“There was hope and then, just like that, it’s just gone,” Diane said, trying but failing to hold back her tears.
“We have nine grandchildren and six children between the two of us,” Fred Rorabaugh added. “When you have to tell them you can’t go forward with a lung transplant, not only does it take the hope away from me, it takes the hope away from my whole family.”
Rorabaugh has been relentless in his quest to find a solution. His tenacity, he said, is borne of a career working in workplace safety, eventually teaching others how to follow the myriad rules and regulations mandated on federal job sites.
Many simply give up when they’re unable to find a doctor willing to provide the care that their claim entitles them to receive, said Daniel Goodkin, the federal workers’ compensation attorney.
Rorabaugh’s tenacity, he said, is impressive.
“I’m impressed that he was able to do that, and that reflects a lot of ability that the average federal employee just doesn’t have,” Goodkin said.
Don’t worry
Asbestos entered his lungs during an 18-year stint as a heavy-equipment and crane operator at the now-defunct Mare Island naval base in Northern California.
When the decision was made to close the base in the early 1990s, Rorabaugh said, the order came down to join a demolition crew and start collapsing old buildings, many which contained pipe insulation, ceiling and floor tiles and other materials that used asbestos as a fire retardant.
Despite questions about the clouds of dust that started filling the air when those buildings started to fall, Rorabaugh said the orders were clear.
“We were told, ‘Don’t worry about it, everything’s fine, just keep that water hose going to keep that dust down,’ ” Rorabaugh said. “We said, ‘Don’t you think we should have some masks or something?’ and they go, ‘nah, you’re fine, just keep loading this stuff out.’ ”
According to the Organ Procurement Transplant Network, the median wait for a lung transplant was 137 days from 2011 to 2014 for patients with Rorabaugh’s blood type. But the nation’s organ allocation procedures have changed since those numbers were compiled. In late 2017, a new policy started giving donated lungs to the sickest patients living within a 250 nautical mile radius of a donor’s residence. Previously, donations stayed within the “donor specific area” where they were harvested.
The upshot is that, while he would have likely received a donation only from a San Diego County donor in the past, he now qualifies to receive organs from throughout Southern California.
But statistics also make it clear that waiting too long can be deadly.
This year, due to a long-running organ shortage, 17 people nationwide have died on the transplant list; 213 died waiting for lung transplants in 2018.
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