As with a lot of things in life, Timing is everything -- one of my favorite sayings. The timing of my shortness of breath and the
letter I received in September 2011 informing me of the Energy Employees
Occupational Illness Compensation Program Act (EEOICPA) was incredible. Development of symptoms, doctor’s visits,
tests that revealed scar tissue in the lungs and swollen lymph nodes and a letter
from the CDC -- timing was everything – simply uncanny.
Figuring out what to do next was necessary. I couldn’t just say that, “Oh yeah, I have
Beryllium Disease because, I’m short of breath and have scar tissue in my lungs.” It had to be proven or disproven to benefit
from the EEOICPA. If I had it, then of
course I should receive benefits. If I
didn’t, then what did I have?
Of course, my wife and I searched the internet for
information about Beryllium Sensitivity and Chronic Beryllium Disease (CBD). We both realized after our search, that it
had the potential to be serious, so finding answers was important. We also found that it was rare and few places
specialized in treating it.
The first step was to apply for benefits by filling out
government forms. The forms basically
explained what work related conditions/symptoms I had. I sent those forms within a couple of weeks
of receiving the original letter. I had “scar
tissue in my lungs and enlarged lymph nodes based on X-rays and a CT scan”.
The Department of Labor received my form and sent me a
letter October 25, 2011 and it told me the medical evidence that was required
to prove that I had beryllium related disease(s) and if I wished to pursue the
claim, I had to respond within thirty days.
As part of the proof, I had to have a test done to determine
if I had Beryllium Sensitivity. This
wasn’t an easy task because I had to find a lab to do this test. During research of CBD, I found that there
were two places in the U.S. that had any expertise in treating CBD. One was Cleveland Clinic in Ohio and the
other was National Jewish Health in Denver, Colorado. I contacted Cleveland Clinic first because I
am a former Clevelander, but never got returned calls. I then called National Jewish Health and they
were most helpful in telling me exactly what I needed to do.
The blood was drawn in Florida by Quest Diagnostics and sent
overnight to the laboratory at National Jewish Health in Denver. The test had to be repeated a second time,
because the Florida lab had little or no experience with the Beryllium
Sensitivity Test and coded things incorrectly.
On February 7, 2012, the results of the Beryllium
Sensitivity were complete and sent to my personal care physician in Florida –
He contacted me and congratulated me with the news that I was “not sensitive to
beryllium”. I was his first potential beryllium
patient.
The next day, I went to his office to get a copy of the
results for my files. I looked at the
report while in my car and realized that he might have interpreted the report
wrong. I was right, he was wrong. I officially had a result of Beryllium
Sensitivity.
According to the EEOICPA documentation, “Beryllium
Sensitivity is an immune system allergic reaction to the presence of beryllium
in the body as the result of inhaling beryllium dust particles or fumes. The medical evidence required to support a
diagnosis of beryllium sensitivity…consists of an abnormal Beryllium Lymphocyte
Proliferation Test (BeLPT) or Beryllium Lympocyte Transformation Test (BeLTT)
that was performed on either blood or lung lavage cells.”
The test I had was the BeLPT and it now entitled me to the
following according to the EEOICPA: “Eligible
employees with beryllium sensitivity receive medical monitoring of their
condition. If monitoring reveals that an
employee’s condition has progressed to CBD, additional medical benefits and
compensation become available…” I could
now seek more answers and it appeared that those answers would be in Denver,
Colorado at National Jewish Health who as it turns out has a “Beryllium
Department”. I’m on my way…
For more information on the Energy Employees Occupational
Illness Compensation Program Act (EEOICPA), here are a couple of United States
Department of Labor links.
http://www.dol.gov/owcp/energy/index.htm
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