October 12, 2001

NIOSH Docket Office

Robert A. Taft Laboratories M/S C34
4676 Columbia Parkway

Cincinnati, OH 45226

Re: Public Comments, 42 CFR Part 82

Thank you for allowing public input into the interim final rule of the EEOICPA. As one
who has been involved with the Act since before its present inception, I have a strong
interest in seeing a meaningful and adequate program for the injured workers of the
Cold War and their families. There are a number of shortcomings to the Act, but it is the
one we have to work with. Hopefully, I can use my experience to point to some of these
shortcomings, and emerge with a better Bill.

Let me first preface my comments with a few facts involving my own situation. I was
diagnosed with Chronic Beryllium Disease in 1993, and have symptoms ranging from
mild to quite severe. I have educated myself in the peculiarities of this disease for the
last eight years, and feel competent to comment on how knowledge of this illness might
show avenues of approaching the issues of dose reconstruction in the claimed cancer
cases. CBD has been called an "orphan disease", although its presence has been
documented since the 1940's. Presently, we have a number of tools at our disposal to
detect and confirm the disease. However, these diagnostic tools are not without fault.
Beryllium sensitivity can be detected by a blood test called a Lymphocyte Proliferation
Test, or LPT. However, the test has its limits, and a positive predicted value of 44-50% 1.
"False negative" tests are common, while the chance of a false positive is much smaller,
on the order of approximately one in ten thousand1. I have seen testing results of at least
a half dozen individuals who have had repeat tests that did little more than confuse.
One would receive a positive, then a negative, followed by a ‘borderline’ or
‘uninterpretable' test result, Knowing the limits of the test, I understand the range of
results, but this information is often not conveyed to the participant. In my own case, I
have had three "normal" sets of test results, despite being confirmed with CBD, and
being symptomatic for a number of years. This is most likely due to medicines and a
depleted immune system, which masked an accurate test. It is common knowledge that
some medicines mask these results 2,3. A close friend of mine underwent the second step
of testing, the invasive Bronchoalveolar Lavage, or BAL, which produced negative
results, following an unconfirmed abnormal BeLPT. She had been on steroid treatment
recently prior to the procedure, so results are in question. She is symptomatic and the
single abnormal LPT shows, in my opinion, exposure, and reaction.

' DOE-SPEC-11142-2001, April, 2001
? ORISE LPT Results, 02/27/97
> Immune System Test Results, AML Laboratories, September, 2000

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I take the time to examine the shortcomings of the Beryllium testing to make a point of
why I feel the dose reconstruction process being considered will be grossly flawed. CBD
is supposed to be the "most provable" of the covered illnesses, and the above examples
are but a few of the inconsistencies in testing. In considering the dose reconstruction of
the covered cancers, "sound science" will never overcome the inconsistencies that have
been public knowledge since the beginning of the investigation into the formation of the
EEOICPA. In many cases, records were incomplete, inaccurate, or in the shredder.
Dosimetry records were also unreliable, and as noted in the 2000 DOE Public Hearings 4,
- badges sometimes did not even have film in them. The best of scientific information will
be inconclusive if based on flawed data. Presumption of causation should not be the
burden of the worker or survivor. Records were simply too haphazard, for whatever
reason. Let me say, I am adamantly opposed to giving a blank check to anyone who ever
drove by one of these sites, but benefit of the doubt must go to the claimant, or justice,
such as it is, will not be served. Those of us who devoted our careers to the winning of
the Cold War deserve truly adequate compensation. There is more than enough
supporting evidence:

NEC Report of 2000 5, the 2000 report from the testimony of the Ohio Bureau of Workers'
Compensation $, testimonies from the March 2000 Senate Hearings, chaired by Senator
Fred Thompson of Tennessee ’, comments from members of the Oak Ridge Citizens
Advisory Committee on Public Health Service Activities 8, Worker Advocacy Advisory
Committee meeting, July 2001 °, comments from the PACE and AFL-CIO unions,
individual letters to local newspapers, comments on the www.beryllium.org,
www.downwinders.org, www.che-or.org, www.state.nv.us/nucwaste/ index.htm, the
list could go on forever, and I apologize both for leaving out some of the key players,
and the length of the comments. However, this is perhaps a start to the most important
legislation for American workers in years. We do not want to see the mistakes-of the
past repeated, hospitals will not accept IOU's for a lung transplant. Presumption of
causation must be the key to assuring at least a limited justice to those who gave so
much- some enduring ridicule and an agonizing death- in winning the Cold War. Last
week Secretary Chao pledged support for those devastated by the WTC and Pentagon
disasters, and deservedly so. Those who gave so much, be it less spectacular, deserve no
less.

* http:/ /tis.eh.doe.gov/advocacy

5 National Economic Council Report, March 2000

Part 1: The Link Between Exposure to Occupational Hazards and Illnesses In the
Department of Energy Contractor Workforce

Part 2: Benefits Available to Department of Energy Contractor Personnel from State
Workers' Compensation Programs

6 May 2000 Testimony of the Ohio Bureau of Workers' Compensation, Columbus, Ohio
7 Committee on Government Affairs, U.S. Senate, March 2000

® ATSDR Meeting, Oak Ridge, TN, May 25, 2001

° Worker Advocacy Advisory Committee, USDOE, Public Meeting Transcript, July 20,
2001



>

. . Y-12 Machinist, & CBD Victim
Beryllium Victims Alliance
Y-12 Beryllium Support Group
Coalition for a Healthy Environment
DOE Chronic Beryllium Disease Protection Program Member
DOE Risk Analysis Committee, Worker Representative

Glenn Bell

Contacts and Resources:

http:/ / www. beryllium.org

http:/ / www.che-or.org

http:/ / www.downwinders.org

http:/ / www.state.nv.us/nucwaste/ index.htm ("What's News")
http:/ / www.oakridge.doe.gov/foia/doe_public_reading_room.htm
http:/ /tis.eh.doe.gov/ advocacy /index.html

http:/ / www.eh.doe.gov/be