TREATMENT

Finding 12: Neither the VA nor the DOD has systematically attempted to determine whether sick Gulf War veterans are any better or worse today than when they first reported symptoms.

Scientific analysis requires the ability to draw conclusions based on objective and accurate scientific data, but without a systematic means of comparison, the data is useless. Unfortunately, neither the VA nor the DOD has made any effort to track veterans' progress and treatment on a methodical, uniform basis. As a result, doctors have no way to gauge which is the best treatment for veterans' different symptoms.
While the VA has developed a means of collecting an initial assessment of veterans' conditions, problems have surfaced regarding its implementation. The 65,000 veterans who signed up for a Persian Gulf Registry Exam were provided a review of their medical history, physical examination, and laboratory tests. The results were then entered into a database containing information on all Persian Gulf veterans who received the examination.⁽³³²⁾ However, the objective value of these assessments is weakened by various factors. Stephen Backhus of GAO has noted medical centers have experienced scheduling backlogs of up to 6 months,⁽³³³⁾ which can have two effects. One, a late Registry Exam risks missing the more subtle symptoms common in the early stages of illness, preventing doctors from treating them before they become worse. Two, awareness of long scheduling delays may discourage veterans from registering for the exams, preventing veterans from receiving the diagnosis and treatment they deserve, as well as making the tests less representative of veterans at large and therefore less worthwhile. Finally, veterans have complained of poor feedback and communication with health care personnel following completion of the exam, as well as "a lack of postexamination treatment." ⁽³³⁴⁾
According to Army Reservist Chris Kornkven, even when veterans were given feedback, no effort was made to pursue the VA's own recommendations for further diagnosis and treatment.

Eventually I was told I may have post traumatic stress disorder and I would be tested and possibly be followed with counseling. Several weeks passed with no other medical testing or treatment. I began asking questions in the mental health clinic when any appointment would take place and was told they were too booked up to get me in any time soon.⁽³³⁵⁾

GAO's research and analysis confirms Kornkven's experience is not an isolated case. As Dr. Heivilin concludes:

DOD and VA have made no provisions to follow up on the condition of the Gulf War veterans. We found neither DOD nor VA have any means of knowing whether the Gulf War veterans who are ill are better or worse off than when they were first examined.⁽³³⁶⁾

More importantly, this inability to determine if the conditions of sick veterans are improving prevents the DOD and VA from assessing the value of its diagnoses and treatments.

We found [DOD and VA] had no monitoring mechanisms for determining the quality, the appropriateness or the effectiveness of the care that [veterans] are getting after the initial examinations.⁽³³⁷⁾

Dr. Murphy claims the absence of a particular follow-up protocol is not indicative of a lack of interest in how veterans are doing. Rather, Dr. Murphy says the VA's policy is designed to ensure veterans receive the appropriate amount and quality of care by catering to the needs of each veteran individually.

We do not have a protocol, and the reason we do not have a protocol is that the therapy and the follow up needs to be tailored to the individual veteran. Clearly, there are some people who need to be seen every couple of weeks or every month. Some might be seen every 3 months, some every 6 months, depending on the severity of their illness and how well they are responding to the treatments they are being given.⁽³³⁸⁾

However, this response is problematic for two reasons. As noted in Finding 1, the GAO has pointed out several failings at the VA regarding followup testing, diagnosis and treatment, including: failure to give veterans without a clearly defined diagnosis additional baseline laboratory tests and consultations; failure to evaluate veterans suffering from undiagnosed illnesses at VA's referral centers (only 390 out of 15,000 referrals were evaluated); and failure to provide personal counseling between veterans and their physicians.⁽³³⁹⁾
Second, if doctors are assessing the progress of veterans on an individual basis, researchers will be unable to draw general conclusions about which treatments may have appeal for other sick veterans with similar symptoms. As a result, even if certain treatments are found to work, they will have little impact on medical research as a whole and thus limited significance for future veterans.
VA's argument that its performance of a Registry Exam for any veteran who requests one followed by an appropriate diagnosis, treatment, and follow-up is sufficient to assess veterans' progress over time still fails to address the need for a systemwide and systematic comparison which is crucial for any kind of major advance in medical science and treatment.

Finding 13: Treatment of sick Gulf War veterans by VA and DOD to date has largely focused on stress and PTSD.

Through counseling and other forms of therapy, the medical community has established an accepted treatment for stress and PTSD that has been available for some time. Over a number of years, physicians have been able to determine that counseling can help veterans overcome these syndromes and resume their normal life. VA and DOD doctors, under pressure to come up with a diagnosis and treatment for Gulf War veterans suffering from mysterious illnesses, have prematurely prescribed treatment for stress and PTSD, even when evidence strongly suggests their illnesses are more likely to stem from exposure to toxic agents.
Examples of Gulf veterans who were urged to undergo treatment for stress are plentiful.
Private Stacy testified that he has tried counseling and other forms of treatment for stress, but has found that they do not work.⁽³⁴⁰⁾ Nevertheless:

For the past year I have been pushed and pushed towards mental health.⁽³⁴¹⁾

Veteran Julia Dyckman remembers smelling and hearing evidence of SCUD attacks during the war.⁽³⁴²⁾ Soon afterward, she experienced a rash of unusual health problems,⁽³⁴³⁾ yet according to Dyckman:

Self reporting is ignored and a psychiatric diagnosis is often given.⁽³⁴⁴⁾

As noted in the Background section, Army Reservist Chris Kornkven suffered from a variety of physiological symptoms, including intestinal problems and headaches. However, when he sought treatment from the VA, he was not given anything for his stomach or head.

I was referred to the mental health clinic, although I was not told why ... It was suggested I go to the Vet Center for any counseling. At this point, much of the medical testing or treatment had stopped, with emphasis placed on PTSD and possible treatment in the mental health clinic. ⁽³⁴⁵⁾

Doctors have since discovered a nasal mass after doing an MRI, as well as other symptoms such as skin problems and rectal bleeding, neither of which has been treated to date. ⁽³⁴⁶⁾
In order to justify treatment for stress and PTSD, VA and DOD health care personnel have pushed those diagnoses, often without any support from tests or logic.
Major Michael Donnelly was exposed to a known toxin, malathion, and experienced serious health problems immediately afterward, suggesting his exposure may be the source of his ailments, yet an Air Force physician did not hesitate to diagnose, or at least strongly suggest, stress upon hearing that he had served during war.

I went in to the flight surgeon at Sheppard Air Force Base. When I finished explaining my symptoms to him I mentioned that I had been in the Gulf War. He immediately started to talk to me about the effects of stress and delayed stress.⁽³⁴⁷⁾

Private Green, who was never in the Gulf region let alone the Gulf War theater during combat, was also diagnosed and treated for stress.

The doctor asked what was wrong and asked me to describe the symptoms. I was then sent for a series of blood work and referred to the mental health clinic for stress-related problems. Seems awful funny to me that my illness is stress related and I was not even in the theater. ⁽³⁴⁸⁾

Sgt. Sumpter-Loebig had a similar experience. She spent a large amount of time in and around a "noxious fuming gas that burned" with no protective clothing. She later discovered it was a combination of DS, CS, and super-topical bleach. Soon afterward, she experienced a series of health problems ranging from dry mouth and hair loss to heart palpitations. Despite her exposure to known toxins, the VA says she has PTSD and the problem is in her head.⁽³⁴⁹⁾
If war were not considered a stressful environment, VA and DOD doctors would have been hard-pressed to match veterans' physiological symptoms with physiological treatments. However, because stress is difficult if not impossible to eliminate as a cause of their ailments, VA and DOD doctors can diagnose and treat health problems as symptoms of stress without fear of being glaringly wrong or being perceived as incapable of coming up with any answer at all.

COMPENSATION

Finding 14: Compensation ratings for sick veterans are minimized due to inadequate personal medical records, missing toxic detection logs, and unreleased classified documents which could help veterans establish service-connection of post-war disabilities.

The absence of medical records and detection logs, as well as the classification of certain documents, have increased the burden on veterans who need to establish a causal link between service in the Gulf and their post-war ailments. Unable to prove the war responsible for their pains, many sick veterans are thereby rendered incapable of holding the United States fully accountable for their illnesses, leading their compensation ratings to be unfairly diminished.
Still, some Gulf War veterans seeking compensation face an easier task than veterans of previous wars. In the past, the VA had required compensation to be based on clearly diagnosed diseases. In 1994, Congress enacted unprecedented legislation changing this requirement. The Persian Gulf War Veterans' Benefits Act (Public Law 103-446) allows the VA to pay compensation benefits to Gulf War veterans suffering undiagnosed illnesses.⁽³⁵⁰⁾
However, although this legislation relieves some of the burden on veterans, they still must prove they are disabled and trace their disabilities directly to their service in the Gulf. It is in making the latter argument that the classification, disappearance, or inadequacy of medical and toxic detection records come into play.⁽³⁵¹⁾
Sadly, when veterans try to bring these shortcomings to the attention of the evaluating board, they are summarily dismissed and the evidence, discounted. In the words of Sgt. Sumpter-Loebig:

This so-called board is a sham, disgrace, and basically a sold-out jury of three officers who have found an excellent loophole for the military to escape responsibility to their soldiers. This physical evaluation board says that I am not fit for duty or my civilian job title. But they aren't going to admit that there is a problem caused by our Southwest Asia service, because we are no longer of any use to them. From the moment an ill soldier walks into one of these military facilities and mentions they were in the Gulf, the decision and diagnosis are already decided upon. To cover themselves, they tell us to bring in other evidence to dispute their doctor. And when we do it is dismissed as irrelevant and non-admissible. These boards ... bring down their judgment swiftly and without any thought to our well-being. ⁽³⁵²⁾

Confronted with the impossible task of proving a causal connection between their sickness and service without the documents, data, and scientific explanation that may be necessary to back up their claims, many veterans find themselves at a loss. They know they are sick, and while all signs point to their service in the Gulf as the reason, without some of the key clues to the puzzle - the missing or poorly maintained medical and toxic detection records and classified material - many veterans are unable to successfully make their case to the Veterans' Benefits Administration [VBA].
Julia Dyckman says the burden of proof is made even more difficult by the VA's refusal to bend its time-limit for proving disability. Under regulations issued in 1995, a veteran can only be compensated for undiagnosed illnesses that make themselves apparent during Gulf War service or within 2 years of a veteran's departure from the Gulf.⁽³⁵³⁾ Veterans must also prove chronic illness and be at least 10 percent disabled. For the past 2 years, this constraint has proved especially onerous for undiagnosed Gulf War veterans who do not recognize the significance of symptoms which may appear mild by themselves but together are indicative of more serious health problems.

When later symptoms are present, it's almost impossible to have them recognized by the VA. There's the - you need to change the 2-year limit of at least 10 percent disability. Reporting was difficult, but symptoms are also sometimes very benign at the beginning, and even getting them into any kind of civilian treatment is very difficult. This limit is unrealistic due to the specific nature of Persian Gulf illness.⁽³⁵⁴⁾

President Clinton responded by extending the presumptive period by 8 years, until December 31, 2001. Veterans who were denied compensation between 1995 and 1997 solely on account of the old 2-year presumptive period will have their claims re-evaluated.
However, only 55 percent of the total 93.5 percent of veterans who were denied compensation for undiagnosed illnesses fall into this category. The remaining 38.5 percent were simply denied.
Faced with a dearth of useable data thanks to lost, destroyed or classified medical, toxic detection, and other records, veterans are shouldered with a gargantuan task, proving a causal link between their illnesses and their service with only limited resources at their disposal. What's more, veterans are being asked to prove what science and doctors cannot disprove; an unfair and impossible task for anyone, let alone disabled and suffering veterans who simply want what they are due. The Government has eliminated some of the burden, including the diagnosis and 2-year presumptive period restrictions, but the other requirements still fall like an anvil atop the shoulders' of suffering veterans. Sadly, as VBA records show, those who fail to make what the VBA considers an incontrovertible argument pay the price in smaller compensation benefits.

Finding 15: Compensation ratings are also minimized by over- reliance on somatoform disorder and PTSD as the basis of disability claims.

Veterans suffering from so-called "Gulf War Syndrome" face yet another hurdle in acquiring the benefits they are owed - an over-reliance by VA and DOD on a diagnosis of somatoform disorder and PTSD as a means of calculating and processing their claims.⁽³⁵⁵⁾
For Julia Dyckman, the VA and DOD's unwillingness to accept alternative causes of her sickness prevent her from receiving the full amount she should have coming to her.

After 4 years and the VA's own diagnosis of Persian Gulf Syndrome, which I got at the VA Center in Washington, I received 30 percent disability for PTSD. In 1996, it was finally increased to 80 percent for chronic fatigue. Persian Gulf Syndrome is not a recognized illness. According to VA, I am tired and have a mental problem.⁽³⁵⁶⁾

Staff Sgt. Steven Wood faced the same problem. His solution: stay in Germany and receive free health care. Although the VA has rated him at 100 percent disabled, it owes him more than $20,000 in back benefits.⁽³⁵⁷⁾ A processing problem in Philadelphia is reportedly causing further delays in payment.
The VA's and DOD's reliance on somatoform and PTSD can make for added difficulties such as those faced by Michael Stacy. His experience with VA and DOD is one of disbelief. According to his medical records, his doctor is convinced he is lying or otherwise exaggerating his symptoms in order to get more compensation.

They believe that all of my complaints are due to stress. I have a copy of my medical records, which I do not have on me now. But the doctor does say in my records, "I believe the patient is exaggerating symptoms, I believe the patient has been coached, and I believe he is here to try to get increased disability."⁽³⁵⁸⁾

As a result, many veterans find themselves in the unenviable situation of Sgt. Sumpter-Loebig, who was told in no uncertain terms that she could receive a portion of the benefits she is due, if she accepts a more "established" diagnosis of stress or PTSD. For veterans who are at their wits" end, the pressure is great. As Sgt. Sumpter-Loebig recalls, she was presented with the following choice:

Send in my results to a board now and be awarded 10 to 20 percent of base pay for 1 year as a settlement or go through a 4 week physical training program designed to help me learn to cope with my symptoms - which they are describing as sympathetic and mind-induced - be taught how to be socially active with the rest of the world, how to use P.T. to forget my mind-induced sympathetic symptoms, and be sent back to duty. This is regardless if the symptoms are gone or not. ⁽³⁵⁹⁾

Private Stacy is rated at 30 percent disabled for service-connected PTSD, but has been strongly advised to push for 100 percent. He has refused because he does not believe his sickness stems from stress and does not want to accept a fraction of what he is owed - which is all he would receive with a stress or PTSD diagnosis. What's more, Stacy told the subcommittee he would not have accepted a 30 percent rating if it were not for his family's financial situation. He says they have been starving for 1 year now, and that it is only by the grace of his relatives, friends, and God, they would not have survived.⁽³⁶⁰⁾ According to his testimony, his disability compensation of $467 a month does not leave enough money for his monthly house payment of $500, let alone the cost of gas or food. ⁽³⁶¹⁾
The experiences of these and other veterans support the view that compensation ratings are being reduced based on inaccurate or at least premature diagnoses of somatoform disorder and PTSD. Evidence that VA and DOD doctors have over used diagnoses of somatoform disorder and PTSD have already been laid out.⁽³⁶²⁾ Since these psychologically-based disabilities carry a lower compensation rating other physiological ailments, it seems only logical that veterans see their compensation ratings minimized as a result. The pressure to accept a diagnosis of somatoform disorder or PTSD before other alternatives have been ruled out shows how this reduction can sometimes come to pass, and when it does, it is a tragedy. U.S. troops risked their lives and health for the military. It is a gross understatement to say they deserve the full amount of what they are justly owed upon their return.

RESEARCH

[NOTES]

332. See supra note 227, p. 1.
333. Ibid., p. 2.
334. Ibid.
335. Testimony of Chris Kornkven, Human Resources Subcommittee hearings, No. 1, pp. 269-271.
336. Testimony of Donna Heivilin, Human Resources Subcommittee hearings, No. 3, p. 34.
337. Ibid., p. 37.
338. Testimony of Frances Murphy, Human Resources Subcommittee hearing of June 26, 1997, original transcript, p. 232 (in subcommittee files).
339. See supra note 232, pp. 4-5.
340. See supra note 266, p. 90.
341. Ibid., p. 108.
342. Testimony of Julia Dyckman, Human Resources and Intergovernmental Relations Subcommittee hearings, Nos. 5-6, p. 189.
343. Ibid.
344. Ibid., p. 190.
345. Testimony of Chris Kornkven, Human Resources Subcommittee hearings, No. 1, pp. 269-271.
346. Ibid.
347. Testimony of Michael Donnelly, Human Resources Subcommittee hearings, No. 2, p. 35.
348. See supra note 182.
349. Testimony of Susan Sumpter-Loebig, Human Resources Subcommittee hearings, No. 2, p. 44.
350. Congressional Research Service Report, "Gulf War Veterans' Illnesses," 97-450 SPR, April 11, 1997, p. 5.
351. See finding 9.
352. See supra note 349, p. 62.
353. See supra note 352.
354. Testimony of Julia Dyckman, Human Resources and Intergovernmental Relations Subcommittee hearings, Nos. 5-6, p. 190.
355. See finding 7.
356. See supra note 354.
357. Testimony of Steven Wood, Human Resources Subcommittee hearings, No. 2, p. 46.
358. See supra note 266, p. 93.
359. See supra note 349, p. 59.
360. See supra note 266, p. 108.
361. Ibid., p. 50.
362. See finding 7.