STATEMENT OF JOY J. ILEM
ASSOCIATE NATIONAL LEGISLATIVE DIRECTOR
OF THE DISABLED AMERICAN VETERANS
BEFORE THE HOUSE VETERANS' AFFAIRS COMMITTEE
SUBCOMMITTEE ON BENEFITS
OCTOBER 26, 1999
MISTER CHAIRMAN AND MEMBERS OF THE SUBCOMMITTEE:
I am pleased to present the views of the Disabled American Veterans (DAV) regarding the Department of Veterans Affairs (VA) management of Persian Gulf War (PGW) veterans in terms of treatment and claims' processing for undiagnosed illnesses. The plight of PGW veterans suffering from unexplained illnesses related to their service in the Persian Gulf continues to be one of our foremost concerns and is of great importance to the DAV's more than one million members and their families.
During Operations Desert Shield and Desert Storm, the United States deployed 697,000 military personnel to the Persian Gulf. Serious health concerns related to service in the Persian Gulf were reported as Gulf War veterans began to return home in 1991 with complaints of vexing symptomatology and the development of unexplained illnesses. Subsequently, the variety of medical symptoms frequently associated with service in the Persian Gulf were referred to by some as "Gulf War Syndrome." The complexity and controversy surrounding Gulf War Syndrome immediately became apparent as the VA attempted to medically treat and compensate veterans who had become ill following their military service in the Persian Gulf. Heightened controversy over this issue exists today, more than eight years later, as scientists and medical researchers continue to search for answers and contemplate the various health risk factors associated with service in the Persian Gulf theater and reported illnesses affecting many veterans who served there.
Veterans and advocates have recognized that two PGW veterans suffering from similar ill-defined health problems may find themselves treated very differently by the health care and benefits systems of the VA. The DAV believes PGW veterans are significantly disadvantaged in the VA system in terms of medical treatment for and adjudication of claims for undiagnosed illnesses. This results from adherence to standard medical practices which are inappropriate in this context combined with a current narrowly-defined VA regulation for undiagnosed illnesses. Simply put, doctors are trained to assess, diagnose, and treat patients for symptoms they experience. Their medical training teaches them to focus on and determine what "disease process" is responsible for making a patient ill. Generally speaking, it is an atypical situation when a physician is unable to provide a diagnosis or probable assessment for an illness he or she encounters; however, "undiagnosed illnesses" are specifically associated with Gulf War Syndrome. To be entitled to compensation under 38 C.F.R. § 3.317, the illness must remain undiagnosed. Therefore, the standard medical practice of providing a diagnosis for an ill-defined health problem disadvantages PGW veterans seeking compensation under the undiagnosed illness provision.
Physicians are generally able to provide a diagnosis after a single visit with a patient or following the completion of a series of tests. We may see the term "unknown etiology" or "of unknown origin" occasionally associated with the symptom of fever, but very rarely do we see the phrase "undiagnosed illness" reported in the medical chart of a patient. Our veterans' representatives complain that physicians, striving to adhere to standard medical practice, often offer a diagnosis characterized as a "best possible assessment." Because 38 C.F.R. § 3.317 limits compensation to undiagnosed illnesses, these questionable, perhaps speculative, diagnoses defeat veterans' claims for compensation. We also question how informed VA physicians are regarding the impact of their "assessment" or "diagnosis" on the veteran's ability to be properly compensated by the VA under the provisions relating to compensation for certain disabilities due to undiagnosed illnesses.
Perhaps there is a belief that physicians should diagnose and treat veterans with no regard for the claims adjudication process. However, physicians' medical expertise and opinion greatly impact the outcome of veterans' claims for compensation in the VA system. Therefore, we believe it is essential that the health care provider have a basic understanding of the claims process in relationship to PGW claims for disabilities due to undiagnosed illnesses. When physicians are better informed about this process they may be more likely to acknowledge an ill-defined health problem in a case where they are not absolutely certain of a diagnosis.
Veterans often complain that, when they seek VA treatment for symptoms they believe to be associated with Gulf War Syndrome, the examiner refers them to various specialty clinics for further evaluation and treatment without a single case manager being assigned to oversee their health care needs. Others complain that primary care physicians have only a limited amount of time to evaluate a veteran, who often has numerous symptoms and complaints, and for that reason physicians tell the veteran to discuss only the most severe symptoms or his or her top two complaints. There also appears to be bias or prejudice against these veterans by some providers because they doubt the existence of undiagnosed illnesses. Other physicians may provide a "diagnosis" such as fibromyalgia which they believe is a "reasonable probability" given unexplained complaints of musculo-skeletal pain. Finally, some veterans have reported that their doctors are simply unwilling to write "veteran is experiencing an ill-defined health problem with symptoms possibly associated with Persian Gulf Syndrome" because of pressure within the VA health care system as it relates to a medical opinion on the outcome of claims adjudication. These types of scenarios disadvantage the seriously ill veteran suffering with symptoms commonly associated with undiagnosed illness, not only from a medical perspective, but from the claims adjudication perspective as well.
VA health care professionals face a variety of unique challenges when treating a PGW veteran. Physicians often become frustrated when dealing with a chronically ill patient who complains of numerous seemingly unrelated symptoms. These symptom complexes are poorly understood, and patients often do not fit into common modality treatment plans. Health care providers treating PGW veterans face a daunting obstacle because there is currently no known cause or cure for the baffling illnesses their patients are experiencing, and these illnesses are often unresponsive to treatment. A thorough and comprehensive assessment of the PGW veteran is not only crucial to treatment and management of the veteran's illness but also to the veteran's ability to be properly compensated by the VA. This raises the question, has VA tailored its health care and benefits system to meet the unique needs of PGW veterans, or is the VA handling these cases with a "traditional" approach?
To be properly evaluated for Gulf War Syndrome, a veteran needs to have a single case manager who oversees his or her health care needs and fully considers any relationship between their symptoms and service in the Persian Gulf. A physician who evaluates all of the medical evidence relating to a Gulf War veteran complaining of several seemingly unrelated symptoms with initial onset occurring at or about the same time is likely to provide a very different evaluation report from that provided for a veteran who is evaluated by several different physicians with no single case manager to review the evidence. Lack of a holistic medical approach can negatively impact PGW veterans in terms of treatment and claims determination. Also, if a veteran is evaluated by a private physician, there is the possibility the veteran may not relate to the physician that he or she had service in the Persian Gulf, or the physician may think it insignificant because of unawareness of the symptoms typically associated with Gulf War Syndrome and service. Certainly, both of these scenarios could negatively impact the outcome of the medical assessment and entitlement to compensation in the case of a PGW veteran.
The claims adjudication process traditionally is predicated on a medical diagnosis and a relationship or nexus between that disability and military service. Although the VA has issued guidelines for the development and processing of undiagnosed illness claims, we note that the medical assessment is often the determining factor for service connection. In the case of a Persian Gulf veteran's disability claim based on undiagnosed illness, traditional ideology is reversed. The claim now hinges on a lack of a diagnosis with findings of chronic symptomatology documented objectively by the health care provider. If, at any point during adjudication, a diagnosis is reported in the medical records for the symptoms in question, the undiagnosed illness claim is subsequently denied. There may be cases where a physician has provided a "probable diagnosis" based on the veteran's symptoms although the true etiology of the symptomatology is questionable or ill-defined in the mind of the examiner.
A case example: A PGW veteran complains of several chronic symptoms lasting over six months that are commonly associated with Gulf War Syndrome, including headaches and fatigue. The veteran reports that headaches and fatigue are the most severe of his symptoms and is referred to a specialist for evaluation and treatment. Testing does not confirm a disease process; however, a "clinical diagnosis" of chronic severe headaches and chronic fatigue syndrome are provided with no comment from the physician as to the etiology of the symptoms. If this veteran was not diagnosed and treated for chronic fatigue syndrome or a headache condition, with documented onset during active service, service connection on a direct basis will most likely be denied. If a diagnosis is provided for these symptoms but no comment exists in the file as to etiology of the headaches, fatigue or other reported symptoms, service connection for chronic headaches and fatigue, as related to Gulf War Syndrome, may also be denied. If the examiner objectively reports that chronic headaches and fatigue are accompanied by unexplained recurrent gastrointestinal symptoms and muscle pain-i.e., illnesses of an undefined nature-the claim merits service connection under the undiagnosed illness provision in § 3.317.
Only when a physician acknowledges his or her uncertainty regarding an ill-defined health problem does the PGW veteran have a fair chance at being properly compensated for undiagnosed illnesses under the narrowly-defined provision. We believe a fair assessment of the case in point is that there is a fine line between symptom complexes that result in a diagnostic label and those that do not, given the poorly understood nature of ill-defined health problems associated with Gulf War Syndrome.
Additionally, based on these scenarios, one can see that a veteran's reporting of symptoms and subsequent management of the case by a single health care provider is not only important to accurately accessing the veteran's medical condition, but it also clearly impacts the veteran's case in terms of compensation. We believe some PGW veterans face a real dilemma in getting proper medical treatment for Persian Gulf-related illnesses and in the processing of their claims under the undiagnosed illness provision.
Mr. Chairman, we now turn to a June 1998 letter from House Veterans' Affairs Committee Chairman Bob Stump to VA Secretary Togo D. West, Jr., urging the Secretary to re-examine the Congressional intent of Public Law 103-446, which provides for the payment of compensation to PGW veterans suffering from a chronic disability resulting from undiagnosed illness. Chairman Stump indicated that Congress' intent was to service connect PGW veterans who suffer from symptoms of illness which cannot be clearly defined. The Chairman concluded: "Thus, for the regulation which implements P.L. 103-446 to effectively rule out service connection under that law in any case in which a VA physician happens to assign a diagnostic label associated with an ill-defined illness is to frustrate the purposes of this law, and to raise a serious question of deprivation of due process." We enthusiastically agree.
Most VA health care providers would agree that it is their primary goal to meet the health care needs of the veteran. However, some PGW veterans face problems when seeking medical care for symptoms associated with Gulf War Syndrome. VA health care facilities have limited resources, and Persian Gulf veterans can be disadvantaged in the system although they are a chronically ill patient and have symptomatology that needs to be addressed. The system fails if a physician is unable to dedicate the time and resources necessary to properly assess and treat a chronic, complex, and debilitating illness. The DAV recognizes the unique challenges that VA health care providers face, but that does not excuse a lack of understanding and expertise on the part of a VA physician regarding Gulf War Syndrome. Additionally, although it certainly is not expected that physicians tailor their medical judgment based on the claims process, it is in the best interest of veterans that physicians have a basic understanding of the regulations that govern the process when making medical determinations for PGW veterans.
Many Persian Gulf veterans have suffered tremendously for nearly a decade with unknown illnesses that have dramatically altered their lives and the lives of their family members. As testing and research continue, veterans affected by illnesses associated with Gulf War Syndrome hope that answers will be found and that they will be properly recognized as disabled by the VA as a result of their military service in the Persian Gulf. The VA, under the direction of former Secretary of Veterans Affairs Jesse Brown, quickly and decisively acted to treat and compensate Persian Gulf veterans for undiagnosed illnesses thought to be related to their service in the Persian Gulf. However, many veterans' advocates believe the VA has not been entirely successful concerning treatment of these veterans and subsequent handling of their compensation claims. To date, only 2,934 claims for undiagnosed illness have been approved under 38 C.F.R. § 3.317, with 7,749 claims denied. Given these statistics, it is reasonable to question the overall management of PGW veterans in the VA system in terms of medical assessment and claims adjudication.
These dynamics are not new to veterans. Veterans returning from all our Nation's wars and military conflicts have faced similar problems in attempting to establish the foundation for recognizing the onset of certain conditions as service connected; however, PGW veterans, as a group, appear to be sicker and more severely disabled than their predecessors. The fact that there are still so many unanswered questions after countless studies and extensive research only serves to exacerbate the situation. Many similarly situated PGW veterans appear to have been denied or granted service connection for their poorly defined illnesses based soley on whether their illnesses were or were not diagnosed. Two veterans suffering from similar symptoms may find themselves treated very differently by the health care and benefits systems of the VA. Thus, this group of veterans seems to be greatly disadvantaged because of the confusion and controversy surrounding their illness. This situation is made even worse by VA's narrowly-defined regulation for undiagnosed illnesses.
The DAV recognizes the VA has made a genuine effort to address problems associated with management of PGW veterans' claims. A Joint Memorandum issued by the VA Under Secretary for Benefits and Under Secretary for Health in February 1998 addressed the unique nature of PGW veterans' claims and the necessity for thorough and extensive examinations by health care professionals. We believe that a PGW veteran would greatly benefit from a single case manager combined with a multidisciplinary but holistic health care approach. Equally important and essential is providing continued training for VA health care personnel who treat this veteran population. Providing physicians with information about the claims process and updated research reports concerning PGW veterans will make them better able to medically manage their patients and recognize the important role they play in the final determination of veterans' claims for disabilities due to undiagnosed illnesses. Finally, it is imperative that the VA Secretary reexamine the VA's regulations for disabilities due to undiagnosed illnesses, with a focus on the intent of Congress in P.L. 106-446 to ensure PGW veterans are fairly and properly compensated.
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