Sec. Robert McDonald at the RAC on Gulf War Illness
By William Wisner (william@sgtsullivancenter.org)
The Research Advisory Committee (RAC) on Gulf War Illness met on September 22, and 23rd in Washington DC. The Sergeant Sullivan Center attended and offered remarks during the public comment portion of the meeting. The full text of the SSC statement is included at the end of this article.
The VA website describes the RAC as, “The Research Advisory Committee on Gulf War Veterans’ Illnesses was created by Congress in 1998, and first appointed by Secretary of Veterans Affairs Anthony J. Principi in January, 2002. The mission of the Committee is to make recommendations to the Secretary of Veterans Affairs on government research relating to the health consequences of military service in the Southwest Asia theater of operations during the Persian Gulf War.
“According to its charter, the guiding principle for the work of the Committee shall be the premise that the fundamental goal of Gulf War-related government research is to improve the health of ill Gulf War veterans. Research priorities will be judged against this standard.”
The Monday meeting of the Committee was largely research and update presentations to the committee. The Tuesday meeting was a series of how to discussions and public comments. The full meeting agenda with contributing researchers can be found at http://www.va.gov/RAC-GWVI/RACagendaSeptember2014.pdf.
The new Secretary of the VA, the Honorable Robert McDonald, joined the committee meeting during the Monday afternoon session. Sec. McDonald thanked the committee and asked them to provide two suggestions or comments that each individual member felt were of the most importance.
Among the comments and suggestions offered by the committee were:
- Education of Physicians regarding proper diagnosis of conditions acknowledged by the VA.
- Definitively define Gulf War Illness and declare that it exists.
- Focus on neuroprotective agents to guard against deteriorating conditions like Alzheimer’s.
- Develop organizational infrastructure to facilitate research and clinical testing. Creation of a center of excellence to explore findings of research.
- Establish an effective train the trainer program at the local VA level.
- Education goes beyond the VA. The general public needs to be made aware of the problem.
- Acknowledge there is a physical problem. GWI is not a psychological illness.
- Acknowledge progress made and move forward on it.
- Provide Gulf War Illness treatment at more VA locations.
- Senior members of the RAC stay on the committee as members.
- Explore allied countries progress with GWI research.
The VA’s Research Advisory Committee on Gulf War Veterans’ Illnesses web page can be found at http://www.va.gov/RAC-GWVI/index.asp
Information regarding the committee, research information, recently-published GWI research articles, and means to contact the RAC are all available on the VA’s website linked above.
STATEMENT OF DANIEL F. SULLIVAN TO
THE RESEARCH ADVISORY COMMITTEE ON GULF WAR VETERAN’S ILLNESSES
September 23, 2014
My name is Daniel Sullivan. I am President/CEO and co-founder of The Sergeant Thomas Joseph Sullivan Center. The Center is a 501(c)(3) nonprofit organization that provides medical research challenge grants to independent facilities identifying biomarkers for deployment related diseases and engages in public awareness and advocacy efforts on behalf of the families and service members impacted by the toxic wounds of war.
The Center is named for my brother, Tom Sullivan, a Marine Corps veteran of the post-9/11 wars, who returned from Iraq with Gulf War Illness like symptoms, was diagnosed with a somatoform disorder, and died shortly thereafter of multiple physiological problems, including lung and heart damage, that were not detected by DoD physicians because they chose not to pursue rigorous diagnostic work and tests. Instead he was sent to a specialty care clinic for service members with somatoform disorders, and died shortly thereafter.
The manner of my brother’s diagnosis and treatment came from the in-practice application of clinical guidelines that were developed by DoD and VA in response to the emergence of Gulf War Illnesses in the 1990s. Although the guidelines clearly indicate physiologic etiology should be ruled out before settling on a somatic etiology, physicians may and do draw an inference from the Guidelines that a somatic explanation likely underlies numerous physiologic complaints.
There is no credible epidemiologic or scientific data that I have found that supports the idea that the horrific and disabling symptoms that my brother and others experience after deployment could possibly be somatic. The notion that a psychosomatic illness could manifest as widespread clinically observable inflammation, right ventricular degeneration, organ failure, or persistent gastrointestinal bleeding is, as far as I can see it, tragically absurd. It is analogous to emphasizing the role of stress in the development of AIDS over the roll of HIV infection.
There was a decision made in the late 1990s and early 2000s to describe Gulf War Illnesses as undiagnosed or unexplained symptoms. This had the unfortunate impact of depriving thousands of patients of any actionable language to explain their diseases while depriving researchers and healthcare providers of a way to proactively define the symptoms of interest, identify biomarkers, and develop treatments based on the most likely theory of causation, military occupational exposure.
By placing the word “unexplained” or “undiagnosed” in front of the words pain, for example, the reality of the symptom was de-emphasized and efforts to identify the cause were deactivated. If the pain has been deemed unexplained by the Department of Defense and the Department of Veterans Affairs, why would anyone work harder to understand the explanation? To me, as a lay person, this choice of nomenclature appears to be a rhetorical strategy to undermine the scientific process. In any event, it has had tragic consequence for health care and research.
Searching for the exposures most likely to have caused the symptoms and then finding ways to address them would have been an ethical and rational medical and scientific approach. In light of former VA epidemiologist Steven S. Coughlin’s testimony last year that the VA has manipulated and withheld data on military occupational exposures, what happened instead looks like an organized effort to deprive patients of the diagnosis and delay research that would help them get well in order to reduce possible exposure to disability claims.
Without knowing how disabled he was, my brother worked hard, eight to ten hours a day, right up until he died. This was time he could have spent with his family, time he could have spent taking care of himself, resting, had his doctors only revealed to him the most likely explanation for his illnesses, and thereby given him the keys to understanding and addressing his illness. Instead, the keys were kept from him, as they are being kept from so many others.
The practical outcome of willfully deferred diagnosis and intentionally delayed research findings is preventable suffering and death. Ongoing research on the long-term health impacts of multiple deployment exposures, including, but not limited to, theater airborne hazards, especially dust and smoke inhalation, may yield explanations for respiratory, cardiovascular, immunological, neurological, and other exposure associated diseases, including cancers, that have plagued Veterans after the 1991 Persian Gulf War and, before that, the Veterans of the Vietnam War. Unless effective reform is undertaken, the generation of Veterans of our post-9/11 wars who are now presenting of pattern of complex illnesses will be condemned to repeat the now familiar cycle of denial, delay, and obfuscation.
Research into the role that exposures play in causing such health problems is essential, as is rapid distribution of findings, even those which are as of yet inconclusive, to educate Service Members, Veterans and private and public sector healthcare providers. The work of this committee, including especially the effort to identify biomarkers for Gulf War Illnesses, is a step in the right direction; for when we can better define the disease, we can better treat it. As we treat it, we will be able to better understand it; and, soon, that which was unexplained will be explained. And though the fog of politics may at times cloud it, the process of scientific inquiry and the true practice of medicine and science will at last prevail.
The alternative, to suppress data, to call psychological that which is physiological, to deprive patients of information about the exposures they endured and the health risks associated with these, to emphasize what we do not know about exposures at the expense of what we do know—I believe that alternative breaches the standard of care for treating Veterans and Service Members who have been exposed to multiple hazards and are now sick.