Appendix A


Issues Raised by the Public and Agendas of Public Meetings Held by the Committee to Review the Health Effects in Vietnam Veterans of Exposure to Herbicides (Ninth Biennial Update) and Other Written Submissions to the Committee

ISSUES RAISED BY THE PUBLIC

Following delivery of the committee’s charge by a VA representative at the first meeting, the open session continued with brief presentations by other members of the public. It has been the practice of VAO committees to conduct open sessions, not only to gather additional information from people who have particular expertise on points that arise during deliberations but also especially to hear from individual Vietnam veterans and others concerned about aspects of their health experience that may be service-related. Open sessions were held during the first four of the committee’s five meetings.

Having solicited input, the committee feels a responsibility to address the concerns raised, even if it is only to the extent of noting that a topic does not fall within the committee’s charge. The issues raised by veterans or their advocates during the current updating period fell into five general categories. The following is a summary of the topics raised at the open sessions or in submitted written statements with the committee’s responses to them.

•  Veterans exposed to Agent Orange in places other than Vietnam: Veterans noted several locations or situations (listed below) where they believe they were exposed to Agent Orange and so are entitled to coverage of those diseases recognized as service-related for veterans who had “boots on the ground” in Vietnam. Evaluating data on the basis of where veterans may have experienced herbicide exposure is not within the scope of this committee’s charge.

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Appendix A Issues Raised by the Public and Agendas of Public Meetings Held by the Committee to Review the Health Effects in Vietnam Veterans of Exposure to Herbicides (Ninth Biennial Update) and Other Written Submissions to the Committee ISSUES RAISED BY THE PUBLIC Following delivery of the committee’s charge by a VA representative at the first meeting, the open session continued with brief presentations by other members of the public. It has been the practice of VAO committees to conduct open sessions, not only to gather additional information from people who have particular expertise on points that arise during deliberations but also especially to hear from individual Vietnam veterans and others concerned about aspects of their health experience that may be service-related. Open sessions were held dur- ing the first four of the committee’s five meetings. Having solicited input, the committee feels a responsibility to address the concerns raised, even if it is only to the extent of noting that a topic does not fall within the committee’s charge. The issues raised by veterans or their advocates during the current updating period fell into five general categories. The follow- ing is a summary of the topics raised at the open sessions or in submitted written statements with the committee’s responses to them. • V  eterans exposed to Agent Orange in places other than Vietnam: Veterans noted several locations or situations (listed below) where they believe they were exposed to Agent Orange and so are entitled to cov- erage of those diseases recognized as service-related for veterans who had “boots on the ground” in Vietnam. Evaluating data on the basis of where veterans may have experienced herbicide exposure is not within the scope of this committee’s charge. Thailand 948

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APPENDIX A 949 Guam  State-side military facilities Blue Water Navy  Post-Vietnam exposure of reservists to residual Agent Orange con- tamination in C123 aircraft • H  ealth problems in children and grandchildren of Vietnam veter- ans: Chapter 10 addresses evidence related to the possibility that the herbicide exposure of Vietnam veterans has had adverse consequences for their progeny. It discusses the current paucity of information on the general phenomenon of the transmission of adverse effects to offspring following paternal exposure to toxic agents. • H  ealth outcomes not currently treated as being related to Vietnam service:  Autoimmune conditions (such as negative rheumatoid-factor ar- thritis and fibromyalgia): The paucity of evidence from human studies on herbicide exposure and immunologic responses, despite the substantial toxicologic evidence of TCDD’s role in such health problems, motivated the committee for Update 2010 to address this issue in considerable depth. The current committee endorses the usefulness of its predecessor’s discussion of factors that may contribute to this apparent discrepancy (see Chapter 7).  Bladder cancer: The relevant available epidemiologic evidence remains inadequate and insufficient to support an association. See Chapter 8 for specific discussion.  Squamous-cell cancer of head and neck: The relevant available epidemiologic evidence remains inadequate and insufficient to sup- port an association, but the committee continues to recommend that VA endeavor to use its own data to determine whether they consti- tute supportive evidence. See Chapter 8 for specific discussion.  Ocular melanoma (particularly choroidal melanoma): A Viet- nam veteran who had choroidal melanoma submitted information received from VA after a Freedom of Information Act (FOIA) re- quest. The data are not adequately explained and labeled, but they suggest that the condition is being treated in VA facilities far more often than expected on the basis of national incidence rates. Without more details on how the statistics were abstracted, it is not possible for the committee to interpret their meaning. The paucity of infor- mation on this specific form of malignancy is discussed in Chapter 8. The committee recommends that VA systematically evaluate the information on the condition that is available in its records.  Myelodysplastic syndrome (MDS): The relevant available epide- miologic evidence remains inadequate and insufficient to support an association of MDS with exposure to the herbicides constituting the

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950 VETERANS AND AGENT ORANGE: UPDATE 2012 committee’s COIs. See Chapter 9 for specific discussion. Exposure to benzene is recognized as being a risk factor for MDS, and it is a component of the petroleum products used as dispersants with the herbicides. Benzene is so highly volatile that it would no longer be part of the sprayed herbicides as they reached ground level, and so it is not covered under the committee’s charge. Several epidemiologic studies addressing risk factors for MDS were identified in the recent update period, but the available evidence remains insufficiently specific with respect to the COIs to provide a basis of a decision concerning association other than the default decision of inadequate or insufficient.  Neurologic problems (delayed-onset peripheral neuropathy, rest- less leg syndrome, Willis-Ekbom disease or periodic limb-move- ment disorder, migraines, and anterior ischemic optic neuropathy): VAO committees continue to consider any relevant information concerning possible associations between the COIs and the delayed- onset form of peripheral neuropathy (see Chapter 11). The other neurologic conditions have not been subjects of epidemiologic re- search identified in VAO literature searches.  blood pressure: Although VA has not regarded this health High outcome as presumptively compensable for Vietnam veterans, the committee continues to endorse the finding of the committee for Update 2008 that there is limited or suggestive evidence of an as- sociation between hypertension and exposure to components of the herbicides used in Vietnam.  Peripheral vascular disease: See Chapter 12.  Endocrine effects: See Chapter 13. • H  ealth effects of chemicals other than Agent Orange: All chemicals in the herbicides used in Vietnam (picloram, cacodylic acid, phenoxy herbicides, TCDD, and dioxin-like compounds) are considered COIs by VAO committees. It should be noted, however, that studies of Vietnam veterans addressing only deployment status, rather than characterizing specific agents of exposure of individual subjects, have always been regarded as contributors to the evidentiary database in keeping with the provision of the Agent Orange Act that veterans serving in Vietnam were presumptively exposed to herbicides.  Petroleum-based dispersants used in spraying Agent Orange: These dispersants are recognized to contain benzene, which is acknowl- edged to be a causal agent of AML and MDS; this volatile chemi- cal would not remain present in sprayed herbicides. There is a vast toxicologic literature on petroleum products and their constituents (for example, see Gulf War and Health: Volume 3—Fuel, Combus- tion Products, and Propellants [IOM, 2005]) and on the various

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APPENDIX A 951 chemical families of insecticides (see also Gulf War and Health: Volume 2—Insecticides and Solvents [IOM, 2003]).  gas: This cyanocarbon was used as the defining component of CS tear gas during military training and in Vietnam.  Vietnam veterans may have experienced multiple potentially harmful exposures in addition to herbicide exposure: Addressing interactions or synergies of other substances (such as benzene- containing petroleum products, the extensively used insecticides, or CS gas) with the several components of the herbicides is beyond the scope of the committee’s charge. People are continually exposed to many chemicals whose possible adverse effects might be exacer- bated by exposure to other agents. The number of pairs that could be addressed is enormous, and it would rise exponentially if triads and larger combinations were considered. • E  xposure modeling for Agent Orange (AgDrift [Ginevan and Ross] vs Exposure Opportunity Model [Stellmans]: The merits of these two exposure models and their potential usefulness for resolving outstanding issues are discussed in Chapter 3. • I  ssues with VA procedures: These topics are not within the scope of the committee’s statement of task. •  iving overseas prevents getting VA medical care. L •  OM’s standard for evaluating health outcomes should not be I changed from association to causality by Congress or any other party. •  A’s claims process takes too long. V •  udgments made in VA’s appeals process for claims of service-­ J related health outcomes are not consistent for a given condition— for example, squamous-cell carcinomas of the head and neck (tonsil cancer), bladder cancer, AML, and MDS. First Public Meeting June 28, 2012 NAS Building, Room 125 2100 C Street, NW Washington, DC 20418 Presentations • Welcome; Goals and Conduct of the Public Meeting; Introduction of Committee Members Mary Walker, Committee Chair

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952 VETERANS AND AGENT ORANGE: UPDATE 2012 • Charge to the Committee Wendi Dick, MD, US Department of Veterans Affairs • Similar Health Conditions of Era Veterans with Agent Orange Exposure on Guam LeRoy Foster Frank Stanton • Agent Orange Exposure at Fort McClellan, Alabama Helena Van Clief, Army Staff Sergeant • Injustice to Vietnam Veterans Placido Salazar • Vietnam–era Veterans Exposed Outside of Vietnam Carlo Albanese • Herbicide Use in Thailand Ken Witkin, President, Airborne Battlefield Command Control Center Association • Advocate of Vietnam Veterans William G. Jeff Davis, Founder and Senior Legislative Advocate, The Veterans Association of Sailors of the Vietnam War, Inc. • Children of American Vietnam Veterans D. Karen Reyes, Co-Founder, Agent Orange Legacy, Children of American Vietnam Veterans • Speaking on Behalf of Vietnam Veterans Rick Weidman, Executive Director for Policy and Government Affairs, Vietnam Veterans of America Additional written statements received from: David A. Aswad Bladder cancer Thomas Jefferson Barr, Jr. Delayed peripheral neuropathy and restless leg syndrome Gary J. Chenett On behalf of the Order of the Silver Rose, recognize health problems in veterans exposed to Agent Orange outside Vietnam; personally, diagnosed with four cancers

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APPENDIX A 953 Michael Eckstein Willis-Ekbom disease/Periodic Limb Movement Disorder Charles W. Griesler Migraines daily from 1967 and other neurological problems Debbie J. Gunn Husband lost nose to squamous cell carcinoma Geraldine Hall-Bast First Vietnam Veteran husband died at 48 of cardiac disease; their daughter has asthma and other respiratory problems; second Vietnam Veteran husband had post-traumatic stress disorder (violent), hepatitis, and died of cancer; third VV husband peripheral numbness due to Parkinson’s and post-traumatic stress disorder Michael P. Hartmaier All chemicals in herbicides used in Vietnam should be covered, not just Agent Orange Damiana Hortas-Dowdy Basic training at Ft. McClellan; now, negative rheumatoid arthritis/ fibromyalgia Floyd McKinney Exposed to Agent Orange at Fort Sill, OK; type 2 diabetes and prostate cancer Mark and Beth Rutz Veterans Administration responded to their Freedom of Information Act request with information indicating choroidal (type of ocular) melanoma is treated more often than expected among veterans Larry Sauger Myelodysplastic syndrome; benzene in petroleum products used to thin Agent Orange Jim Wallace Exposed to Agent Orange at several military locations stateside; he and son have Agent Orange-related conditions Wane Wolcott Anterior ischemic optic neuropathy, numb toes, high blood pressure, borderline diabetes, autoimmune disorder related to connective tissue; lives overseas so not getting VA medical care

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954 VETERANS AND AGENT ORANGE: UPDATE 2012 second Public Meeting August 9, 2012 Courtyard Marriott Meeting Room A 300 West Michigan Street Milwaukee, WI 53203 Presentations • Welcome; Goals and Conduct of the Public Meeting; Introduction of Committee Mary Walker, Committee Chair • Speaking on Behalf of Wisconsin Vietnam Veterans Kim Michalowski, Director of Bureau of Claims, Wisconsin Department of Veterans Affairs • Veteran Concerned about Effects in Offspring John Crespi • Veteran Concerned about Effects in Offspring Mike Demske, Agent Orange Committee of National Vietnam Veterans of America • Concerns about Congress Changing IOM’s Standard from Association to Causality Kent Draper • Veteran with Peripheral Vascular Disease Eugene Pogorzelski • Veteran Speaking on Myelodysplastic Syndromes (MDS) Larry Sauger • Blue Water Navy Veteran with Agent Orange Health Conditions James W. Sobotta Additional written statements received from: Donald Lund Concern about exposure to CS gas James Wachtendonk K-9 handler in Vietnam

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APPENDIX A 955 Zachary James Wachtendonk (deceased at age 30) Son of Vietnam veteran with congenital problems exacerbated by exposure as child to 2,4-D in park Mary S. Wachtendonk (wife of Vietnam veteran) third Public Meeting November 27, 2012 Hotel Monteleone Royal Salon D 214 Royal Street New Orleans, LA 70130 Presentations • Welcome; Goals and Conduct of the Public Meeting; Introduction of Committee Mary Walker, Committee Chair • Metabolic and Vascular Diseases (Invited Speaker) Lisa Cassis, Ph.D., Professor and Chair, University of Kentucky • Speaking on Behalf of Vietnam Veterans Suzanne Moore • Concerns about Endocrine Effects Marc McCabe, Bureau Chief/Regional Director, St. Petersburg Regional Office, Vietnam Veterans of America • Department of Veterans Affairs—Past and Present Research (Invited Speaker) Han Kang, Ph.D., retired Director, Environmental Epidemiology Service, Department of Veterans Affairs Additional written statements received from: James Tomes Exposure of Vietnam-era veterans stateside

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956 VETERANS AND AGENT ORANGE: UPDATE 2012 FOURTH Public Meeting January 16, 2013 Arnold and Mabel Beckman Center National Academies of Sciences & Engineering 100 Academy Irvine, CA 92612-3002 Presentations • Welcome; Goals and Conduct of the Public Meeting; Introduction of Committee Mary Walker, Committee Chair • Health Concerns of Vietnam Veterans Ken Holybee, Director at Large, Vietnam Veterans of America • National Health Committee co-chair, Associates of VVA—paternally mediated birth defects Elayne Mackey • Health Issues and Effects in Children Conrad T. Gomez • Health Problems as Daughter of Vietnam Veteran and Data Collection by Children of Vietnam Veterans Health Alliance (COVVHA) Jenna Van Leer, COVVHA • Widow of Vietnam Veteran Debra Kraus, artist • Contamination of C123 Aircraft Used by Reservists Wes Carter Phone conversation (invited speakers)—Paternal transmission of adverse effects to offspring • Andy Olshan, PhD, Chair of Epidemiology, University of North Carolina • Kim Boekelheide, MD, PhD, Professor of Medical Science, Brown University Additional written statements received from: Dale Hemrick Health issues in veterans and their offspring

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APPENDIX A 957 Nancy McMaa  Oral squamous cell carcinoma of her Vietnam veteran husband Jim Purtell  Song composed concerning damage from Agent Orange Martha Sidwell  (wife of Vietnam veteran, Dale Hemrick) Relationship difficulties of returning deployed veterans Jeanne Stellman, PhD Response to Ginevan and Ross on exposure opportunity model REFERENCES IOM (Institute of Medicine). 2003. Gulf War and Health: Volume 2—Insecticides and Solvents. Washington, DC: The National Academies Press. IOM. 2005. Gulf War and Health: Volume 3—Fuel, Combustion Products, and Propellants. Washing- ton, DC: The National Academies Press.