$150,000 awards to Bannister workers as rare sarcoidosis cases linked to bomb part metal beryllium

KANSAS CITY, Missouri - An NBC Action News investigation into a mysterious illness linked to a classified Kansas City nuclear weapons parts program has led to a government payout to sick workers and overturned a 10-year-old denial.

Ed Bell, a former worker at the Bannister Federal Complex, takes so many medications to battle the disease sarcoidosis, it's a struggle not only to keep healthy but just to make ends meet.

“Close to $3,000 for medication,” Bell said describing his pharmacy costs as he sorted through a counter top full of pill bottles in his kitchen.

With a diagnosis of sarcoidosis, in 2001, Bell filed a claim with the Department of Labor that his failing health was caused by the metal beryllium which is used at the Bannister Federal Complex to make nuclear bomb parts.

The Department of Labor, which denied the claim, administers a program established by Congress to compensate workers in the nuclear arsenal program who were made sick by exposure to radiation or toxins.

Bell worked at the Kansas City Plant which makes non-nuclear parts for nuclear bombs.

An NBC Action News Investigation has identified hundreds of illnesses at the facility and at least 785 known toxins at the Bannister Federal Complex including beryllium, the radioactive material promethium and depleted uranium.

As a result of our investigation the Centers for Disease Control is currently investigating hundreds of illnesses identified in our investigation and the EPA is considering placing the entire complex on the list of National Priorities List of Superfund sites.

The buliding is shared one one side by the Kansas City Plant, where contractors including Honeywell, Bendix, and Allied-Signal have manufactured non-nuclear parts for nuclear bombs for decades, and other the other side where the General Services Administration rents out office space to multiple government agencies.

The NBC Action News Investigation has identified 25 former workers from the complex with sarcoidosis diagnoses.

Recent blood tests by the Centers for Disease control on workers from the GSA controlled side did not identify beryllium sensitivity in workers there, but doctors say not all patients with Chronic Beryllium Disease will test positive.

Like the GSA employees, Bell also tested negative in government blood tests which are supposed to detect beryllium.

Click here to see our entire investigation.

The disease Bell was diagnosed with, sarcoidosis, has the same symptoms as Chronic Beryllium Disease which is caused by exposure to the metal beryllium.

According to the Department of Energy , Chronic Beryllium Disease symptoms include shortness of breath, chest pains, cough, fatigue, weight loss, and loss of appetite.

“I kept having pains in my lower back,” said former Bannister worker Kelly Turners at a group meeting for sarcoidosis victims.

Doctors know so little about the disease many patients seek sarcoidosis group meetings like the one Turner attended at North Kansas City Hospital.

Patients say the common treatment, heavy doses of steroids, can create side effects, including physical and mental issues, nearly as bad as the disease.

“Does your neck sweat?” asked Jo Kledis in the group meeting. “Oh yes,” Turner responded. “I feel like a sow or something, you know.”

“Yeah," Kledis said. “I do.”

Like Chronic Beryllium Disease, doctors say sarcoidosis can be deadly. Untreated, it can turn a healthy lung into a leathered mass capable of processing increasingly smaller amounts of oxygen.

A Department of Labor spokesman reports the agency has awarded compensation to over 170 beryllium sensitive or beryllium diseased workers from the Kansas City Plant.

Although new safety measures are in place, government reports indicate monitoring levels can not explain the number of Kansas City workers diagnosed with Chronic Beryllium Disease.

A 2009 Department of Energy report raises beryllium contamination concerns that an "unidentified source of exposure is continuing" to sicken Kansas City Plant workers and workers at other plants.

“Cases occurring at the Kansas City Plant, Pantex Plant, Savannah River Site, and Hanford Site are inconsistent with the low exposure levels being reported and the perceived history of limited beryllium use,” the 2009 Worker Associate Beryllium Registry Summary stated.

According to Department of Labor data, in Kansas City alone, the government has paid workers more than $28 million in compensation for illnesses related to beryllium or other toxins used in the making of non-nuclear parts for nuclear bombs at the Bannister Federal Complex.

Click here if you're a former worker and wish to report health concerns to NBC Action News.

Sick workers say the condition creates overwhelming pain while sucking their energy for life.

“Every day, it was harder and harder, just to get out of bed,” Turner said about his worsening condition.

Turner hasn't gotten a response to his claim.

Bell assumed the denial to his 2001 claim was final until he asked us for help.

“It's

very rough,” Bell said about his condition when we first met. “I can hardly move half the time.”

His sarcoidosis spread to his eyes, created pain throughout his body, loss of energy and forced him into disability for four years.

The immobilizing condition was a stark contrast to his robust youth.

“I was a paratrooper,” Bell said. “I was a Green Beret.”

After leaving the military Bell got a job as a food service worker at the Kansas City Plant.

He says he never worked directly with beryllium but was responsible for setting up catering events in all areas of the plant.

“Even sitting down and getting up is difficult,” Bell said of the pain since his life was overtaken by what doctors believed was sarcoidosis.

He suspected his condition was caused by his exposure to toxins at the nuclear bomb part facility, but the government denied Bell's claim stating "sarcoidosis is not a covered medical condition."

But, our investigation uncovered a 2008 change to Department of Labor policy requiring claims agents to presume "the diagnosis of sarcoidosis to be a diagnosis of Chronic Beryllium Disease."

The ruling applies only to workers on the bomb part making side of the Bannister Federal Complex, and has many exclusions, but when we asked a doctor to evaluate Bell’s claim, it became clear he had a strong case.

Experts agreed not only did he meet Chronic Beryllium Disease standards, he was entitled to $150,000 or more in government compensation and lifetime medical benefits.

“Oh, very good....and bad,” Bell said laughing about the irony that, ten years later, a diagnosis of the potentially fatal disease could drastically his improve his standard of living and access to medical care.

Although the policy clearly says Chronic Beryllium Disease should be presumed in all cases, regulations make it easier for claimants like Bell who were diagnosed with sarcoidosis before 1993.

Department of Labor regulations require workers with diagnoses on or after January 1, 1993 to show beryllium in their blood or to have a diagnosis of Chronic Beryllium Disease by a “qualified physician.”

Experts say even with the official presumption, not every sarcoidosis case would qualify.

First workers must have been exposed to beryllium while working in a covered facility like the Kansas City Plant.

Even employees who worked inches away on the other side of a wall in the same building at Bannister at other agencies like the GSA, IRS, FAA, Defense Finance and Accounting Services, and Marine Corps are not not eligible.

But for claimants like Bell, who do qualify, there is concern no one ever told him or any of the other workers with sarcoidosis identified in our investigation about the 2008 ruling presuming Chronic Beryllium Disease.

They were also not informed they could re-apply for compensation under the new ruling that presumes the bomb making metal beryllium is the actual cause of their diagnosed sarcoidosis.

“I would have never known about this even starting up again if I hadn't heard about it from you,” Bell said.

We took Bell’s case to experts and to the Department of Labor Ombudsman , who acts as an intermediary between sick workers and the government compensation program for sick nuclear workers.

When we showed Nelson the eight year old denial on Bell’s compensation case that specifically disqualified sarcoidosis, he acknowledged it wasn’t an accurate denial based upon current DOL guidelines.

“Yes, it is no longer necessarily true,” Nelson said. “The Department of Labor, on claims like this, would review those cases.”

“My understanding is that many of these cases were reviewed,” Nelson said. “Whatever happened in Mr. Bell's case, it was not reviewed to the extent that it changed the policy.”

We also took Bell's case to Chronic Beryllium Disease Expert Dr Lawrence Fuortes at the University of Iowa.

Fuortes said a quick review made it clear Bell qualified.

“Well, as soon as we had all the medical evidence,” Dr. Fuortes said. “Just reviewing the medical chart, I think it was a one day turn around."

Fuortes sent his opinion on to the Department of Labor which reversed Bell's denial and ten years later approved his claim, awarding him $150,000 in compensation for suffering Chronic Beryllium Disease.

“I got my letter yes,’ Bell said. “And medical care for the rest of my life.”

‘It's a blessing,” said Bell’s wife Donna. “I'm truly thankful.”

“And we thank God for you and for your to help everyone else,” Bell said.

Bell’s troubles aren’t over. He says he is on a kidney transplant list because of disease caused by so many medications as doctors stumbled over a diagnosis his condition.

The only luxury Bell has afforded himself is a medical bed to make it easier to sleep.

Shortly after Bell’s case was approved a second former Bannister Federal Complex with sarcoidosis, who had also tested negative in blood tests for beryllium, was also approved.

He too said he had no idea sarcoidosis could be related to nuclear bomb part manufacturing until our report.

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