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House of Representatives,
Subcommittee on Health,
Committee on Veterans' Affairs,
Washington, DC.

    The subcommittee met, pursuant to call, at 9:32 a.m., in room 334, Cannon House Office Building, Hon. Cliff Stearns (chairman of the subcommittee) presiding.
    Present: Representatives Stearns, Smith, Bilirakis, Moran, Cooksey, Hutchinson, Gutierrez, Kennedy, Brown, Doyle, Peterson, and Carson.
    Also present: Representatives Evans and Mascara.


    Mr. STEARNS. Good morning, everybody. The Subcommittee on Health of Veterans' Affairs will open. I want to welcome you all to what I believe is a very important hearing.
    In testifying before the Veterans' Affairs Committee in February, VA stated that the Department has a, quote, well designed and comprehensive, end quote, health care program for Persian Gulf veterans. We questioned that statement then, and we question it now. We ask again today whether the existence of a well designed, comprehensive VA health care program for Persian Gulf veterans is a matter of rhetoric or reality.
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    Certainly, most veterans medical centers are able to respond effectively to routine medical conditions presented by Persian Gulf veterans, but our focus is on how VA cares for the thousands of undiagnosed or ill-defined conditions.
    We will hear today from scientists, Government auditors, clinic personnel who treat Persian Gulf veterans, and veterans. The veterans themselves, perhaps, tell it best. By way of example, let me quote from the testimony of the American Legion:
    ''There is little evidence that VA's overall approach provides effective medical treatment to Gulf War veterans with difficult-to-diagnose and ill-defined conditions. The structure of VA's medical system, a lack of treatment protocol to guide VA physicians in the treatment of these illnesses, the nature of these illnesses, and site visits suggests that, on the whole, VA does not effectively treat these illnesses. VA's policies convey a different picture. With respect to its diagnostic examinations, VA policy calls for counseling the veterans regarding their registry exam findings, and it calls for providing a continuum of care to those with multiple symptoms.''
    We will hear today, however, that veterans seldom receive any counseling to explain their health problems and that the continuum of care often breaks down.
    Is the treatment of Persian Gulf veterans a VA priority? Much work has certainly been put into establishing a mechanism to establish veterans and attempt to diagnose their illnesses, but the question is, what happens when lab studies and examinations don't present a clear cut diagnosis? There seems no sure answer to that question and no system to monitor the effectiveness of the treatment these veterans receive.
    After our February hearing, we asked the VA whether the Department had any specific treatment programs for these patients. VA said no unique treatments have been proven effective for Persian Gulf veterans' illnesses and therefore no specialized treatment programs have been established. Yet several witnesses this morning will testify that there are treatments which can help these veterans even where there is no clear diagnosis.
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    I am pleased that the VA's testimony acknowledges that there is much room for improvement and that it offers some specific proposals. I also appreciate the insights and many suggestions our witnesses have offered on this important subject. We hope to learn more about what additional steps the VA can take to make the treatment of Persian Gulf veterans the priority it should be.
    With that, I call on the ranking member, Mr. Gutierrez, for his statement.


    Mr. GUTIERREZ. Thank you very much, Chairman Stearns, for calling this important hearing to discuss the provision of health care to Persian Gulf War veterans.
    Once again, recent news stories, based on a recently disclosed GAO report, have called into question our Government's efforts to discover the causes of various ailments afflicting Gulf War veterans.
    I recognize that the Pentagon has redoubled its efforts. I know that $27 million has been allocated by the Defense Department this year to investigate the risk factors possibly associated with Gulf War illness. Nevertheless, despite better-late-than-never initiatives, I still believe that our Government is failing, failing those who served in the Gulf War, failing their families, and failing the American people who expect our Government to work honestly and diligently on their behalf.
    The Pentagon has not been entirely honest about the Persian Gulf War. They have admitted this, and have pledged to change their ways. But what we have now is a situation that feeds the already growing uncertainty and mistrust surrounding our Government's mishandling of this sensitive issue.
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    The danger is this: The perception that this mishandling creates in the minds of the American people, and the perception that our Government is not disclosing all the pertinent facts regarding the situation. I feel strongly that it is our Government's duty to ease the minds of the brave men and women who served in the Gulf. It is our Government's duty to be forthright with any and all useful information, and to provide adequate care and just compensation to the veterans who triumphed over tyranny more than 6 years ago. In this regard, we have failed.
    Many veterans don't believe that the answers will be provided, and many veterans don't believe that they will get the health care compensation they need and deserve. In the absence of hard facts, we must try harder, and we must offer the veterans of Desert Storm the benefit of the doubt by ensuring they receive the benefits they require.
    I believe the subcommittee should conduct hearings later this year to specifically address the issues raised by the GAO report. These hearings would offer the Pentagon and the Presidential Advisory Commission a chance to explain their positions and clear the air.
    Today we discuss the provisions of health care to Persian Gulf veterans at VA facilities. I believe that this is truly one of the most critical matters we will examine on this subcommittee. While many uncertainties remain, we know that more than 70,000 veterans of the Gulf conflict have reported a variety of debilitating or recurrent illnesses, and they need health care and benefits to get their lives back on track.
    We do know that 26 percent of the veterans who participate in the Gulf War Registry have undiagnosed conditions. We also know that our Government has the responsibility to do a better job of counseling, diagnosing, and following up on Persian Gulf veterans. Allow me to express my strong support for now departing Secretary Brown's expansion of the presumptive period of Gulf War illness from 2 years to 10 years. This is a positive first step towards assisting Gulf veterans.
    I would like to thank once again Chairman Stearns, and I look forward to questioning our witnesses as time permits.
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    Mr. STEARNS. I thank my colleague.
    Mr. Bilirakis, my colleague from Florida.


    Mr. BILIRAKIS. Thank you very much, Mr. Chairman.
    First let me take a moment to commend you for scheduling the hearing. The illnesses experienced by Persian Gulf veterans continue to be a major concern to this committee, and it is something our VA has got to realize.
    Almost 1 million United States soldiers served in the Persian Gulf region from August of 1990 through 1995. Approximately 700,000 of them served during Operation Desert Shield/Desert Storm. Many of these veterans, Mr. Chairman, as you know, are now experiencing unexplained illnesses. There have also been reports of similar unexplained illnesses among spouses of the Persian Gulf veterans. In addition, concerns have been raised regarding health problems and birth defects among the children of some of these veterans.
    Despite a broad range of research projects into Persian Gulf War illnesses, researchers have been unable, apparently, to identify a single illness, syndrome, or cause of the health problems experienced by many of these veterans, and this is a continuing source of frustration, as we might expect, for our veterans and their families.
    Since the end of the war, our committee has initiated a number of laws to assist our Persian Gulf War veterans. Under these laws, the VA provides Gulf exams and counseling to them. The VA also provides priority health care services for any health problems which may have been due to exposure to toxic substances or environmental hazards in the Gulf.
    The VA has testified that it has a well designed and comprehensive health care program for Persian Gulf veterans who suffer from undiagnosed illnesses, and Mr. Gutierrez referred to this. However, questions have been raised as to whether or not VA has made veterans' treatment truly a real priority.
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    I have reviewed the written testimony of today's witnesses, and they raise many disturbing issues. For example, GAO makes the following observations regarding the care provided to Persian Gulf veterans, and I quote them. There is an inconsistency in the conduct of registry examinations. Personal counseling seldom occurs. There is a lack of continuity between the registry exam and any treatment. There is a lack of post-examination treatment, there is a lack of empathy from health care providers, and there is a lack of a mechanism to monitor treatment outcomes.
    In light of these observations, certainly, Mr. Chairman, it is easy to understand why veterans are so frustrated with the care that they are receiving through the VA, and I personally have always felt much of the problems we have had with our veterans health care centers because, in general, I consider them pretty darn good in terms of being well equipped, the quality, the medical personnel in general and what-not, but I think it is an attitude problem. We have heard an awful lot of stories on poor attitudes of a lot of the employees, and maybe that attitude problem stems not only at the lower levels but also at the top levels.
    I know Dr. Kizer is in the audience. He is a veteran. He can certainly empathize better than many people in the administration or in Government in general with these problems. Certainly Secretary Brown is a disabled veteran. It seems to me we could certainly do something about this attitude problem, because practically everything always stems from people, what is inside, and maybe what is inside is not good enough.
    Obviously, it is incumbent upon us to do all we can to find a solution to the health problems now being experienced by some of the veterans and some of the active-duty personnel who are still on active duty and their families. However, in the meantime, we must make certain our veterans are receiving the highest quality of care.
    I am anxious to hear the testimony of our witnesses, Mr. Chairman, and, like you, I have another hearing on energy and power and deregulation of electricity, which is really very important, so I will be shuffling back and forth. But I look forward to working with you and other members of the committee to see if we can do anything at all to improve the situation.
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    Thank you, Mr. Chairman.
    Mr. STEARNS. I thank my colleague. Mr. Moran.
    Mr. MORAN. Mr. Chairman, thank you for scheduling this hearing. This is a very important topic, and I am anxious to hear what the witnesses have to say. I have no opening statement.
    Mr. STEARNS. Mr. Hutchinson.
    Mr. HUTCHINSON. Mr. Chairman, I look forward to the testimony of the witnesses. I think the issue is whether there is a difference in the policy that is being implemented and the actual practice that happens at the hospitals in rendering the service. So I look forward to the testimony of the witnesses and yield any further comments.
    Mr. STEARNS. Mr. Kennedy.


    Mr. KENNEDY. Thank you, Mr. Chairman.
    Mr. Chairman, first of all, I want to thank you for having this hearing, and I appreciate the renewed interest that this committee is showing in this issue under your leadership.
    In addition to hearing the testimony which I think will be important in terms of the kinds of treatments that the VA and others are proposing, I think that it is important for us to deal with the real health effects that our veterans are facing. It is important for this committee to deal with, and to speak out on the whole issue of what appears now to be an additional almost cover-up of what has actually occurred in the Persian Gulf.
    This committee held the first hearings going back over 5 years ago in terms of listening to veterans who came forward, claiming they had illnesses that were a direct result of their service in the Persian Gulf. They were told—and it is an old story, it has been heard over and over again—that they were malingerers; they were complainers, and there was nothing wrong with them, that they were, in fact, never exposed to any chemical or biological weapons that could have created these kinds of illnesses. It was all put on the soldiers themselves, and I have met with them individually.
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    It was very hard to get this committee to even take testimony directly from soldiers. We heard from so-called experts who were doing studies, that there was no direct linkage. And now, after a Presidential Commission and numerous studies by the Pentagon, and so many different people coming before us claiming that there was no linkage, we finally have a GAO study that comes back indicating there is linkage. We don't even get a copy of this study, but it appears to have been leaked to the newspapers.

    I think it would be very helpful if we had this document, and I am glad that Mr. Backhus from the GAO is here today.
    Maybe you can shed some light on this issue.
    I don't know, Mr. Chairman, if that is going to be one of the issues we are going to be able to get into, or if Mr. Backhus has the authority to comment on the GAO report. Can I ask that question, briefly, Mr. Chairman?
    Mr. STEARNS. Mr. Kennedy, you will certainly have an opportunity to ask him any question you like.
    Mr. KENNEDY. And this is an issue that he is familiar with, is it, Mr. Chairman?
    Mr. STEARNS. Well, I think at this point, let's just get to the opening statements and we will come back. But he has been apprised that we will be asking a broad range of questions.
    Mr. KENNEDY. I appreciate that, Mr. Chairman.
    I also want to, at some point, deal with the fact that several years ago, we did hear from a Dr. Hyman who was down from Louisiana. Dr. Hyman, I believe, claimed that this was as a result of some kind of chemical exposure and that created, as I recall, some type of infection in the soldiers. Everybody sort of ran the guy down, and said he was some kind of faker and he was trying to rip off the VA and the like.
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    I know those of you on the committee at the time remember that he was roundly debunked by everyone. Nevertheless, it seems that some of the issues he brought up may, in fact, have more validity than was given to him at the time.
    So I would like to come back, and at least get your sense of what he was talking about, and whether or not, given this new information that the GAO has provided, he was onto something that nobody else would listen to.
    In any event, I do want to thank the chairman again for holding the hearing. I very much appreciate the fact that the GAO has come forward with this report in the hopes that this will be a major step forward in terms of giving the soldiers, who served our country, who have never asked for anything but acknowledgment that there was direct linkage between their service and the illnesses that they have encountered. I think if all we say to them is, there doesn't seem to be any link and you never were exposed to the chemicals it leaves them with the feeling that nobody is telling them the truth, and there has been some kind of cover-up.
    I think it is important, if there is information to suggest linkage, that we have a complete, open-air discussion pertaining to that direct linkage, if nothing else, to just satisfy and honor the soldiers who served this country.
    Thank you very much, Mr. Chairman.
    Mr. STEARNS. I thank my colleague. Mr. Peterson.


    Mr. PETERSON. Thank you, Mr. Chairman. I want to thank you for holding this hearing, and I look forward to getting into this issue.
    I somewhat want to associate myself with the comments of Mr. Kennedy. I heard from a lot of Persian Gulf veterans in my State who are concerned about the way this has been handled, are frustrated with the response to their problems, and from what I have seen, have real problems that have been caused by something. I think we are starting to get some information that will allow us to get to the bottom of this, and I hope we continue to work on this until we get to the bottom of it.
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    Mr. STEARNS. I thank my colleague.
    Ms. Brown, my colleague from Florida.


    Ms. BROWN. Thank you, Mr. Chairman, and thank you for holding this hearing.
    We all know that the Gulf War illness has been a complex problem to solve. We wonder about chemicals and oil. We worry about how to treat the veterans who seem to get no relief from the medical community. All of us have heard from the veterans who are suffering.
    The research into this illness takes time, and we may not ever get the answers as to why they are sick, but we owe it to them to make sure they get the best possible care. To me, what is most important is that veterans can go to the VA and get good care. We have heard some praises, and we have heard complaints. As a Member of Congress having oversight of VA, I want to know that VA is doing its best in delivering health care services to the veterans with these problems.
    Mr. STEARNS. I thank my colleague.
    Ms. Carson, do you have an opening statement?
    Ms. CARSON. No.
    Mr. STEARNS. Mr. Mascara is visiting.
    Would you like to have an opportunity to have an opening statement?
    Mr. MASCARA. I do not, Mr. Chairman.
    I thank you for holding this meeting. My interest, of course, is I serve on two other Subcommittees, one of which is Oversight, and I thought I would partake this morning in this meeting because I was directly affected, in my District, by two young ladies, both of whom have received 100 percent disability—I am sorry, one in my District and one in Karen Thurman's District in Florida. I did agree to go before the President's Commission on Persian Gulf Illnesses to introduce them. The young lady in my District took a direct hit from a SCUD on the barracks, and she survived and other members from her unit back in my District were killed. So my interest is sincere, and I am here just to listen.
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    Thank you.
    Mr. STEARNS. We appreciate you listening and coming by.

    Ms. CARSON. Mr. Chairman, I am sorry, though I don't know where the hearing is going, I want to mention the concern I have among veterans in Indianapolis, from which I was elected, is that with the wave of cost-effective medical treatment, veterans are getting the brunt of that in terms of not being able to access quality medical care.
    Those who were affected by the Persian Gulf, as well as all the way back to the Vietnam era, are having a difficult time in accessing medical benefits through the Department of Veterans Affairs. I am hoping that this subcommittee will ultimately be able to resolve those concerns, notwithstanding the cost of it.
    Mr. STEARNS. Well, I appreciate your comments.

    At this point, we will have our first panel, which is Mr. Backhus, Dr. Kipen, Dr. Clauw, and Major Engel.
    You are recognized for your opening statements, and it is customary to have a 5-minute opening. We will start with Mr. Backhus.

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    Mr. BACKHUS. Thank you, Mr. Chairman.
    Mr. Chairman and members of the subcommittee, I am very pleased to be here today to discuss our ongoing evaluation of medical care that VA provides to Persian Gulf veterans. As you requested, my comments this morning will focus on three topics: First, Persian Gulf veteran satisfaction with VA care; second, the extent to which VA follows its own guidelines for evaluation and treatment; and, third, a model of care at one medical center that Persian Gulf veterans seem to find more responsive to their needs.
    Our information is based on observations and opinions from officials at VA headquarters, three medical centers, veterans service organizations, and dozens of Persian Gulf veterans themselves. We have thus far reviewed the medical records of 20 veterans who have been examined and treated for their symptoms.
    While the scope of our work at this early stage is not broad enough to generalize to the conditions throughout the entire VA, we believe that along with other previous studies on these issues, our work does serve as an indicator of the medical care that these veterans are receiving.
    Regarding their satisfaction with the VA care, Persian Gulf veterans appear to be confused by, frustrated with, and mistrustful of VA and the care they receive for their illnesses. While they appreciate the efforts of individual staff, they cite delays of up to 6 months in receiving services, unsympathetic attitudes of some health care providers, some cursory initial exams, poor feedback from and communication with health care personnel, and a lack of post-examination treatment.
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    Regarding our evaluation of care VA provides to these veterans, VA's guidance regarding the evaluation and treatment does not appear to be consistently implemented in the field. For example, some physicians do not perform all of the symptom-specific tests recommended by VA's uniform case assessment protocol, which could result in some veterans not receiving a clearly defined diagnosis for their symptoms.
    In some cases, physicians appear to stop following the protocol even though a clearly defined diagnosis has not been reached, and several of the records we reviewed indicated physicians' diagnosis was simply a restatement of the veteran's symptoms.
    Furthermore, while VA has a quality assurance mechanism for evaluating the care it provides, the mechanism neither ensures continuity of care for these veterans nor does it provide for follow-up with veterans who need continued care. Moreover, personal counseling of veterans, which is required by VA guidance seldom occurs.
    Registry medical staff and veterans we talked with stated that feedback on the examination results is typically provided through a form letter. The letters, however, do not always explain the test results nor the diagnosis, which leaves veterans obviously frustrated and angry.
    Physicians' views are mixed regarding the appropriateness of VA guidance in the origin of symptoms experienced by the veterans. For example, some physicians indicated they believed the veterans' problems are all in their heads. However, other physicians do display open attitudes about treating physical symptoms in determining the origin of their illness.
    Several of the physicians we interviewed believed they should have the flexibility to use their own clinical judgment in determining which tests are necessary to establish a diagnosis and treatment plan. One physician stated that in most cases veterans' symptoms can be diagnosed without using some of the complex tests mandated by the protocol.
    Turning now to the third topic, in response to veterans' concerns, VA is trying to improve service. For example, at one medical center, veterans now have the option of receiving treatment in a Persian Gulf special program clinic. The clinic allows veterans to receive primary care from medical staff experienced in Gulf War veterans and their concerns.
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    The coordination of the patient's overall medical treatment is assigned to a case manager and, in this case, a registered nurse who serves as their advocate and facilitates communication among patients, their families, and the medical staff.
    Veterans we spoke with were pleased with the clinic and supported its operation. They believe it reflects a VA commitment to take seriously the health complaints of Gulf War veterans and that the clinic gives them access to physicians who are sympathetic and understand their special needs. Additionally, VA has recently established a system-wide program to obtain feedback and track complaints of Persian Gulf veterans.
    Mr. Chairman, this concludes my summary statement. We will continue to assess these issues over the next several months, which will include holding many more discussions with veterans and VA health care providers. We will report our findings and conclusions when this more detailed evaluation is completed. I will be happy to answer any questions you or any other members of the subcommittee may have.

    [The prepared statement of Mr. Backhus appears at p. 44.]

    Mr. STEARNS. Thank you. Dr. Howard Kipen, welcome.


    Dr. KIPEN. Thank you. Mr. Chairman and members of the committee, I appreciate the opportunity to appear before this subcommittee to describe the work in progress at the Institute of Medicine regarding the adequacy of clinical programs designed by the Department of Defense and Department of Veterans Affairs to diagnose and treat Persian Gulf veterans.
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    The IOM has two Committees examining this area. The Committee of which I am a member is charged with assessing the adequacy of the Department of Defense Comprehensive Clinical Evaluation Program regarding three aspects of its operation.
    The first is the assessment of health problems of those individuals who may have been exposed to low levels of nerve agents, and we have completed a report on that. The remaining two aspects are the diagnosis and treatment of stress, psychiatric disorders, and the relationship between stress, psychiatric disorders, and physical symptoms; and then finally, approaches to dealing with difficult-to-diagnose and ill-defined conditions, such as chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity.
    We held three workshops, one on each major area of our charge, in order to gather the latest information from researchers and clinicians in the areas. The Committee, as I said, has produced a report about exposures to low levels of nerve agent as it relates to health problems, but we haven't yet produced reports on the stress issue and the ill-defined conditions issue.
    In the report on nerve agents, the Committee stated that no evidence available to the Committee clearly indicated the existence of long-term health effects of low-level exposure to nerve agent. However, information reviewed about the types of health effects that might possibly exist as the result of such exposure, include neurological problems, such as peripheral sensory neuropathies, and psychiatric problems, such as alterations in mood, thinking, or behavior.
    The conclusions that we came to take into account reports suggesting possible toxic synergistic or combined effects after exposures to multiple agents known to influence nerve transmission or cholinesterase activity. The Committee concluded in its first report that the CCEP, the Defense Department's examination registry, continues to provide an appropriate screening approach to the diagnosis of disease in veterans.
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    However, in view of the potential exposure to low levels of nerve agents, which has been raised over the last year, we did recommend certain refinements of the CCEP to increase its value. Many of these refinements related to improved documentation to ensure consistency across facilities.
    In addition, the Committee recommended that primary care physicians doing the phase one exams have access to a referral neurologist and a referral psychiatrist during this phase one screening. We have submitted a copy of the report entitled, ''Adequacy of the Comprehensive Clinical Evaluation Program: Nerve Agents,'' to the subcommittee to provide more detailed information. The Committee report on the remaining two areas of its charge is now in the process of being developed.
    Thus, I can't appear before you with specific recommendations from the Committee. I can, however, summarize for you some of the information that we were given in the first workshop on difficult-to-diagnose and ill-defined conditions. The major focus of this workshop was on three conditions, as I mentioned before, and their possible overlap. The conditions are chronic fatigue syndrome, or CFS, fibromyalgia, and multiple chemical sensitivity, or MCS, my particular area of academic concentration. The information presented to the Committee was not based on studies conducted on veterans but, rather, on the research that has been conducted over the years in members of the general population with the same conditions.
    First, chronic fatigue syndrome. In 1994, CDC convened an international study group to develop criteria for defining CFS. The major feature of CFS is the symptom of fatigue that is not due to exertion, is not relieved by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities—a fairly devastating symptom. In addition, the person must have four or more of the following additional symptoms, all of which have to have lasted for at least 6 months: Impaired memory or concentration, sore throat, tender lymph nodes in the neck or under the arms, muscle pain, pain in multiple joints without swelling or redness that would indicate arthritis, and headaches of a new type or increased severity, unrefreshing sleep, or malaise after exertion lasting more than 24 hours.
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    The second specific undefined condition is fibromyalgia, a disorder of widespread pain, tenderness, fatigue, sleep disturbance, and psychological distress. Other clinical features of fibromyalgia, as I think the next speaker will talk about, include irritable bowel syndrome, numbness and tingling of the extremities, frequency of urination, and social interaction problems.
    Problems with classification and diagnosis of fibromyalgia led to the development of some criteria by the American College of Rheumatology on joint diseases. In a 1990 study of criteria for fibromyalgia classification, the American College of Rheumatology found 81 percent of fibromyalgia patients complained of fatigue and three-quarters complained of sleep disturbance. In addition, 60 percent of fibromyalgia patients had problems with depression.
    I am trying to highlight the overlap between these putatively separate things. MCS, my particular area of expertise, is a diagnosis which is given to patients who show a variety of symptoms that they attribute to exposures to chemicals but for which no apparent organic cause or underlying physiological abnormality can be found. There is little agreement on what these symptoms represent, and no definition has been endorsed for use by a clinical body, in contrast to the previous two conditions. The most widely accepted definition is summarized for you in the testimony, and I think for time purposes I will just skip over that now.
    Patients with CFS, fibromyalgia, and MCS, in the view of the Committee and in my own view, seem to have a lot of symptoms in common; the things they complain about have great overlap. According to some, the conditions may actually overlap and may not be completely distinct. Dedra Buchwald in Seattle did a study of patients with the three diagnoses and found that 70 percent of the patients with fibromyalgia and 30 percent of those with MCS met CFS criteria, and other studies have shown similar things as well.
    There are other disorders which overlap with CFS and MCS probably. For patients with temporal mandibular joint disorder, CFS symptoms of fatigue for more than 6 months were very common and 30 percent have some kind of reduced activity characteristic of CFS.
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    An adequate work-up in diagnosis for patients who exhibit the signs and symptoms common to this spectrum of illness is very important. It is also important to acknowledge the reality of the patients suffering. Without doing that, even with a complete evaluation and work-up, even limited approaches to treatment aren't going to be successful, because the patient will frequently feel alienated. In fact, it has been shown patients with these overlapping syndromes often consult many physicians and practitioners including people such as acupuncturists, naturopaths, homeopaths, clinical ecologists, perhaps, in our view and the view of the Committee, in frustration with the medical system and what they feel is inadequate work up and diagnosis.
    Dr. Buchwald showed in her study that the average number of visits to a provider in 1 year for patients with CFS, fibromyalgia, and MCS were 22, 39, and 33 respectively, a huge number of physician visits. Our Committee at the Institute of Medicine is now taking this information and trying to develop a final report.
    I mentioned at the beginning of my testimony that IOM has one other Committee concerned with evaluating the protocols for care provided to Persian Gulf veterans. The second Committee is evaluating the adequacy.
    Mr. STEARNS. We have a vote on the House floor. Could the gentleman conclude, and we are going to go and come back.
    Is the gentleman almost finished?
    Dr. KIPEN. I have one more page. I am almost finished.
    There is another Committee looking at the adequacy of the VA registry, and that Committee, of which I am not a member, has not concluded—has just barely begun its evaluations and has made some visits to date but has no conclusions.
    At this point, I think I can conclude my remarks, and I would be happy to answer any questions when the time is proper.

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    [The prepared statement of Dr. Kipen, with attachment, appears at p. 49.]

    Mr. STEARNS. Thank you, Doctor.
    With all respect to the remaining panelists, we have a vote. This subcommittee will recess, and I urge all members to come back. It is very timely to have this panel, including the GAO here, so I urge members to come back.
    The subcommittee is recessed.


    Mr. STEARNS. The subcommittee will reconvene.
    The third panelist, Dr. Daniel J. Clauw.


    Dr. CLAUW. Thank you, Mr. Chairman.
    I have been involved in both research and the clinical care of persons afflicted with a number of ill defined and poorly understood medical conditions, which include fibromyalgia and chronic fatigue syndrome. I have both an Army grant and an NIH grant to study these conditions.
    My opinion, which is shared by many others in these fields, is that these illnesses, which have affected Persian Gulf veterans, are not unique to persons deployed to the Persian Gulf but instead are the same as those which occur commonly in the population. Likewise, the problems which Persian Gulf veterans suffer in receiving treatment for their illnesses are very similar to the problems encountered by patients with these ill-defined illnesses in the general population. I will review the reasons for these opinions as well as suggestions for better dealing with patients who suffer from these disorders.
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    Fibromyalgia, as Dr. Kipen noted earlier, is a disorder defined by the presence of diffuse musculoskeletal pain and the finding of widespread tenderness on physical examination. As he noted, in addition to diffuse pain, individuals with fibromyalgia typically also suffer from a number of other symptoms, including fatigue, weakness, and memory problems.
    Although fibromyalgia is the most common rheumatic disease affecting individuals below the age of 60, involving at least 2 percent of the population in the United States, I suspect that many of you have not even heard about this disorder. Yet I am certain that all of you know individuals who suffer from fibromyalgia, although many of these persons have not yet been appropriately diagnosed or treated.
    Chronic fatigue syndrome is a syndrome characterized by the presence of severe, persistent fatigue as well as a number of other symptoms, including joint aches, memory problems, poor sleep, et cetera. Again, this illness probably affects about 1 percent of the population, but, again, you may be unfamiliar with this condition.
    Although fibromyalgia and chronic fatigue syndrome are defined quite differently, most people who meet criteria for one of these illnesses will also meet criteria for the other, suggesting they represent different ends of the same spectrum rather than discrete illnesses.
    ''Somatoform disorder'' is yet another term used to describe persons who display this constellation of symptoms. Although I dislike this label, it is a psychiatric term used to describe individuals who display multiple types of different symptoms but no ''physical cause'' can be found for these complaints, and, once again, many individuals who meet criteria for fibromyalgia or chronic fatigue syndrome will also meet criteria for somatoform disorders.
    Thus, although the symptom complexes go by a variety of semantic terms, most involved in the study of these conditions feel these illnesses represent one large spectrum of illness.
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    The symptoms and findings in individuals with the Persian Gulf syndrome are generally the same as those of persons labeled with these other conditions, except the Persian Gulf syndrome is defined by these illnesses occurring in conjunction with being deployed to the Gulf War.
    Why are these illnesses not recognized and difficult to diagnose? One of the reason for incomplete recognition is that this symptom complex is given many different names and many different attributions. Another reason is, there are no blood tests or other diagnostic tests which are predictably abnormal in persons with this illness. Because of this, these conditions are diagnosed on the basis of symptoms and by excluding other medical problems which can cause the same types of symptoms.
    Another significant problem with the recognition and acceptance of fibromyalgia and related conditions is that these illnesses in general have been termed psychosomatic conditions. All of these conditions can either be triggered by or exacerbated by a variety of physical, immune, or emotional stressers, and there likely is a common underlying cause or causes for this entire spectrum of illness. Unfortunately, however, the root cause for this spectrum of illness is not presently known.
    The link in some cases to emotional stress, and the fact that at present we have no blood test or any other objective test to verify the presence of these conditions, has led some to contend the conditions are ''all in the head.'' Well, in fact, the most recent research into these conditions suggests they probably do begin in the head but that instead of these being primarily psychiatric conditions, these entities are all characterized by dysfunction of various components of the central nervous system.
    Although our incomplete understanding of the precise mechanisms which lead to these symptoms should not lead to treating this group of patients differently than those of illnesses we understand better, this is commonly done. Furthermore, the fact that these conditions can be either initiated or exacerbated by stress should not be viewed by either patients or physicians as a negative factor, since we now know that nearly all illnesses, including cancer and coronary artery disease, can likewise be profoundly affected by stress.
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    Finally, the relationship between these disorders and psychiatric conditions needs to be clarified. Many individuals with fibromyalgia and related conditions will have concurrent psychiatric diagnoses. However, in most cases, the psychiatric diagnosis is not the primary problem. In most cases, the individual has developed a mood disorder, such as depression or anxiety, as a result of the physical symptoms that they experience and the problems with function that they experience.
    In clinical practice, telling an individual with this type of illness that it is, ''all in their head'' or there is no ''organic basis'' for their symptoms will always lead to frustration and the sense of abandonment by that individual. It is not difficult to see why many of the veterans with these illnesses, as well as their families and advocates, have become so frustrated with the vicious cycle of no diagnosis, no effective treatment, and the psychiatric attribution of their symptoms.
    It may be of little consolation to the Gulf War veterans, but millions of Americans are struggling with the same issues on a daily basis when they are seen with these same symptoms in the private sector. Thus, we should be careful not to place the blame regarding the inadequate treatment of these individuals solely on the VA or the DOD. This is actually a much larger problem with our entire medical system.
    Once an individual develops fibromyalgia or a related disorder, it does not appear to matter what triggered the illness, the treatment remains the same. In fact, this focus on causation is not only unlikely to be a benefit but may actually be harmful. Instead, it is more important that patients, health care providers, and policymakers begin to focus on better understanding the entire spectrum of illness and to use our existing knowledge regarding these entities to develop multidisciplinary treatment programs for individuals who are afflicted.
    Types of therapies which have been demonstrated to be effective include low doses of tricyclic drugs, graduated low-impact aerobic exercise programs, and cognitive behavioral therapy. Cognitive behavioral therapy is an educational program that focuses on changing the individual's life-style and behavior so that they can better adapt to this type of illness. Other types of therapy may be very effective in treating the conditions but have not proven so in blinded placebo-controlled trials.
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    My personal experience is that the VA medical centers in some cases are not well versed in the treatment of these conditions, perhaps in part because the illnesses occur much more frequently in females and so few women are seen within the VA system, and perhaps because in the past there has been a cultural bias in the VA to refer the patients quickly to a psychiatrist. If a physician or health care provider does not believe that the patient is suffering from a ''real disease,'' they will likely be ineffective in treating this group of patients.
    I will end by giving some recommendations. Much more funding is needed for research into these conditions. Most of the research that has been done to date has been on what caused the Gulf War syndrome. Although this is needed, there needs to be a much greater focus on understanding the physiology of the illnesses, and developing more effective treatments.
    Number two, most of the experts on these types of illnesses in this country are not in the VA or military systems. The VA and DOD have reached out to the private sector to ask the advice of individuals who have expertise in the disorders, and this needs to continue.
    Number three, and finally, continue to take the veterans seriously. The physical and emotional toll of this type of illness is tremendous, and these individuals developed these problems while serving our country. View with skepticism anyone who might assert that because there are no abnormalities in blood tests, X-rays, or other diagnostic studies, that there is nothing wrong or the individual is suffering from a psychiatric problem. It is arrogant of us, as scientists, to feel that because we cannot precisely define a problem, that it does not exist.
    Thank you.

    [The prepared statement of Dr. Clauw appears at p. 113.]

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    Mr. STEARNS. I thank you.
    Our next witness is Major Charles Engel, Junior, who is also an M.D. Welcome.


    Major ENGEL. Mr. Chairman and members of the committee, I would like to thank you, as a Gulf War veteran, a member of the Armed Forces, and as a physician, for the opportunity to tell you about the treatment program that we run for Gulf War veterans at Walter Reed, the Army Medical Center here in Washington, DC.
    I would also like to thank Lieutenant General Ron Blanck, the Surgeon General of the Army; Major General Leslie Burger, the North Atlantic Regional Medical Commander; and regular General Michael Cusman, the hospital commander at Walter Reed, all people who have been instrumental in supporting our program as it has developed over the last couple of years. Mostly I would like to thank the veterans of the Gulf War for teaching us about their illnesses, about their sacrifices, and about their wartime experiences.
    I would like for a minute, if you could indulge me, to have you think about what happens when you see the doctor. Typically, the first thing that happens is, the doctor asks you questions. Secondly, they may lay on hands, they do an examination. In some instances, perhaps the majority of instances, they do medical testing of various sorts. This whole exercise—history, exam and testing—is aimed at coming up with a diagnosis, and the reason that we, in the medical system, care, and the traditional medical model care, about a diagnosis is because we use it to derive treatment.
    The most classic example of this is infections of various sorts. You have a sore throat; you see the doctor; they do a throat culture. If you have strep throat, you are given penicillin, and hopefully you get better.
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    There is a practical problem involving all of health care, not just DOD or the military, but definitely involving a subset of Gulf War veterans, in which, if you go through this motion several times in a row of examining and doing diagnostic tests and you don't come up with answers, within the business-as-usual, traditional medical model, there is nowhere left to go.
    What we have attempted to do in the specialized care program, at Walter Reed, is to come up with, to some degree, or put into motion, an alternative approach for veterans with persistent physical symptoms after their service in the Gulf War.
    I would underline that this represents a subset of Gulf War veterans with persistent symptoms and not all of them. The subset we are seeing specifically seems to be high utilizers of the health care system, which probably isn't surprising, given that they are not hearing occurring a diagnosis that can derive treatment, and they return for increasing evaluations. They have many physical symptoms. On average, we find patients report to us 10 bothersome symptoms in the last month, and they are distressed about their symptoms.
    The goal of our treatment program, rather than to focus on a narrow symptom like a headache, in which maybe the neurologist might apply a treatment, or belly pain, for which, perhaps, an internist might apply treatment, is to focus on the overall quality of life of the veteran and their functional status, and we do that using an evidence based model of care, which has been implemented for many years in chronic pain clinics around the U.S. and in Europe.
    Our treatment model is an intensive outpatient treatment. It is 3 weeks long. We have treated 84 patients using this model to date in cycles, about four to eight patients per cycle. The treatment consists of a medical, physical, and psychosocial component. The medical component involves a careful reassessment on the part of an internist and subsequent explanation of previous medical testing that has been done.
    We found that, on average, the veterans who have gone through our program have undergone 60 or more different diagnostic tests in the process of being evaluated for their Gulf War-related health concerns. So many explanations are in those tests.
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    The physical component involves musculoskeletal evaluation for unique limitations and then gradual implementation of an activation strategy, a physical activation strategy. And the psychosocial component involves education, involvement of family members, and really an attempt to shift the person from a passive thinking that the system is going to come in and make a diagnosis that is going to lead to a quick treatment to a more active way of thinking, that these are things that I can do for myself over the longer haul to get better.
    So far, we found patients improve in their level of functioning in certain domains, there is diminished illness concern at the time they leave the program, diminished levels of distress, as well as an improved sense of psychosocial support. We are following them up at 1 month and 6 months, clinically, and then up to 2 years, using a computer-assisted telephone interview, in order to evaluate the effectiveness of our methods.
    Our facility represents about one-third of a ward over at Walter Reed, although we also utilize occupational and physical therapies at Walter Reed and consultative services as needed. Our staffing involves about 15 to 17 different clinical and administrative staff, some shared and others full-time with us.
    Our current challenges at this point really are identifying folks for early participation in the program prior to their involvement in retirement, medical retirement proceedings, so that, ideally, we have optimal opportunity to improve their work functioning in the future and to open the possibility of opening the program to others, from other deployments; and maybe, most of all, education for providers, as well as patients, about persistent symptoms and perhaps the maladaptive impact in many cases of business-as-usual medicine, the tendency for us to seek diagnosis and causes in the sense that those will lead to specific treatments, which does not seem to be the case for many patients.
    Thank you.

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    [The prepared statement of Major Engel appears at p. 131.]

    Mr. STEARNS. I thank you, Major.
    Let me open up with questions, and of course I would like to start with Mr. Backhus.
    We received a draft of the GAO report, I guess on the 17th, and looking through the results in the brief summary, there are pretty dramatic conclusions GAO has indicated here: One, that neither DOD nor the VA has systematically attempted to determine whether ill Gulf War veterans are better or worse today than they were when they first examined.
    You say that the research is not precise and accurate. Then you go on to say evidence to support several conclusions under the Presidential Commission is questionable. These three are pretty dramatic conclusions by the GAO.
    My question is, since the Presidential Commission was 18 months and the GAO was 6 months, are you standing by these conclusions? And if you are, aren't you, in a sense, saying that there is negligence on the part of DOD and the VA? I mean, that is the bottom line. You are saying there is negligence here. Is it negligence, incompetence, malfeasance, nonfeasance, here by the DOD and VA is what you are saying in these rather dramatic conclusions?
    Mr. BACKHUS. Mr. Chairman, with your permission, may I call in reinforcements here?
    Mr. STEARNS. Yes.
    And would you state your name.
    Mr. HINTON. Mr. Stearns, my name is Henry Hinton. I am the assistant comptroller general for GAO's national security and international affairs work that we do.
    Right now, what I would like to do in response to that is tell you where we stand on that report. You did accurately comment on the conclusions.
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    Mr. STEARNS. You are standing by those three recommendations, or three conclusions?
    Mr. HINTON. At this point, they are accurate, and let me tell you where we are in the process, because we have not finalized our report, and I think that is very important. I owe it to—GAO owes it to this committee, the Congress as a whole, and particularly the constituencies out there to seek DOD, VA, the Presidential Commission's comments on this report. That is a part of the process that GAO goes through on every one of its reports.
    Unfortunately, it got leaked. We have not concluded that. We have those comments right now. We were still getting comments from VA as of last night. We have not finalized that. I expect this report to be through and completed in the early part of next week, at which time we would be happy to come up and brief the members of this committee.
    Mr. STEARNS. Are you saying at this point you don't want to talk about the report?
    Mr. HINTON. Yes, sir.
    Mr. STEARNS. Okay. Let me ask you this. We have seen some of the criticism from the DOD and the VA. Without talking about the report, would you like to comment on some of their criticisms, particularly what the Presidential Advisory Committee has said?
    Mr. HINTON. We have those comments, Mr. Chairman. I take those comments very seriously, as we do on every report that we get and send over to the Department, whether it is DOD, VA, NASA, or others. That is a part of our process that we are required to go through, to factor that in. It is a very important part, and let me tell you why.
    One, it gives the agencies an important opportunity to critique our work. It gives the agencies an important opportunity to bring new information to the table. It gives the agencies an important opportunity to say, GAO, you need to clarify some points. That is what we are going through right now. There were some criticisms in there. We have to work through those. When our final report comes out, it will address each and every one of those with our evaluation.
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    Mr. STEARNS. So if I understand what you are saying, you are not prepared to talk about the report, you are not prepared at this point to answer the criticisms from the DOD or the VA or the Presidential Advisory Commission, but you are standing by the conclusions, and when the report comes out, at the latter part of this week—we thought it was going to come out Monday.
    Mr. HINTON. It will be out the early part of next week, hopefully Monday.
    Mr. STEARNS. But you are saying that these results that I have here, and that the New York Times had in their articles, you are standing by those three major conclusions.
    Mr. HINTON. At this point, I think that is a fair characterization. I have to complete the process I just explained to you as we finalize that product.
    Mr. STEARNS. Well, I know other members will want to ask you some questions, too, on that.
    Let me move to the panel—I have some time left—to perhaps one of the physicians.
    The VA, states, quote, there is no evidence of a single unifying illness to explain the health problems of Persian Gulf veterans. Do you agree, and does that make a difference in terms of trying to improve the care VA provides?
    And maybe Dr. Clauw can answer.
    Dr. CLAUW. Yes, I do agree, and, no, it doesn't make a difference in the care that the VA provides. As we explained, this group of illnesses probably has a number of different triggers or different things that can lead to this group of illnesses, and once someone has this spectrum of illness, it doesn't really matter what caused it, the treatment is the same. The kind of things I mentioned and the other things people have mentioned are the effective treatments for this group of disorders.
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    Mr. STEARNS. Dr. Kipen, would you want to add anything?
    Dr. KIPEN. I would now speak for myself, and not for the IOM Committee. I would add, in general, I agree with what Dr. Clauw said, except for the caveat that I think the evidence showing that there are effective treatments for the variety of medically unexplained syndromes that we have discussed today is not of great weight, if it does exist. Designing realistic treatment programs for VA and DOD should probably be done in the context of research, not just giving protocols to physicians at various facilities and saying this is what we know works, go do it.
    I think there is an opportunity here to really advance the science and care for medically unexplained symptoms and syndromes but that we probably have to be very careful before we go ahead and say it is treatment doctrine, just like penicillin for strep throat is.
    Mr. STEARNS. Major Engel, is there anything you would like to add?
    Major ENGEL. I would agree with what Dr. Kipen just said, that the strength in the evidence of applying this model of care is sort of mild to moderate in terms of its validity and it needs to be developed. It is an evidence-based model for the treatment of chronic pain.
    Certainly, there is a body of evidence that suggests that chronic pain patients respond with diminished pain, improved return-to-work rates, and improved levels of morale in response to multidisciplinary treatments similar to the one we are offering symptomatic patients at the Gulf War Health Center. However, its utility specifically for symptomatic patients needs to be demonstrated.
    Mr. STEARNS. Thank you. My time has expired.
    The Ranking Member, Mr. Gutierrez.
    Mr. GUTIERREZ. Thank you very much, Chairman Stearns.
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    Well, since Mr. Hinton is not going to discuss the GAO report here today, I will certainly respect that as he wants to go back and get all of the pertinent information. But, we have the report, and obviously we have Mr. Backhus's report, and just a cursory review of either one of those two reports, the one we are supposed to be talking about or the one we are not supposed to be talking about today because it is not finalized, there are some very serious implications of what is going on at DOD and VA.
    I was listening attentively to Dr. Engel. The major described to us the procedure after somebody shows up at the hospital. He also described how Walter Reed hospital is treating people.
    Given the panel's explanation of what they are doing, and given the GAO report about what is happening within the VA system, it is clear VA is not engaging in these types of treatment. What you are doing sounds like you should send a memo to everybody else, call them all together, and tell them, at least I have a method to the madness; we don't know what Persian Gulf Syndrome is, but I have a method, and here is how the method is working, and here is the success rate, and let's have this, so that everybody is doing the same thing and gathering the same information so that we can finally get to the bottom of what is causing this, because treatment is kind of haphazard.
    I mean, I look at this, and this thing about stress. Any human being, whether you are in the Armed Forces or you are civilian, if you repeatedly go to a doctor, and you have such trust and confidence in these people, and the doctor can't tell you specifically what is wrong with you, what is causing your illness you are going to have stress. People are used to getting strep throat and being given penicillin, we all know that—we start with our children with Amoxicillin—we all know, you get something, you get something to treat it.
    So not getting treatment causes a lot of stress. But the stress, it isn't that they served in the Gulf War and came back with stress, I don't believe, as much as that they came back from the Gulf War, they were ill, and then you have the stress because nobody is listening, especially when people treat you, as we hear in the GAO reports, with sometimes a callousness—as if it is all in your head.
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    Who wants to hear that? That treatment will cause stress too, because now you have to go home and say, well, am I all here? I have these medical experts either directly or indirectly associating my illness with mental incapacity. I think it all helps to create one system. I would like to ask Dr. Engel: Do you think that the veterans whom you have seen, are they suffering from PTSD?
    Major ENGEL. I think that there is a subset who have posttraumatic stress disorder.
    You know, if one looks at the comprehensive clinical evaluation report, or the report on the comprehensive clinical evaluation, about 1 in 20 patients participating in the program receives a diagnosis of PTSD, so it is a relatively small subset.
    However, I would also make the point that posttraumatic stress disorder is a disorder that pertains to catastrophic trauma, like combat or abuse in childhood or motor vehicle accidents. And trauma comes in all shapes and sizes, and response to trauma comes in all shapes and sizes, so to say that the extent necessarily, of stress, is represented in that 5 percent figure, it is difficult to narrow it to that, but certainly, as it pertains to PTSD, it does seem to be, in our population, only about 1 in 20 patients receives that diagnosis.
    Mr. GUTIERREZ. Mr. Backhus, what can we do, given the GAO—what can we do so that everybody is on the same page, so that we can get an answer, and at least get on the road to finding a solution?
    Mr. BACKHUS. I think we observed one particular model in Birmingham that seems to have significant potential for improving the care that is provided, and certainly the views of the veterans. It essentially means assigning a case manager to each and every veteran who presents themselves as ill and needs treatment. Somebody needs to follow them through the system, somebody to arrange their care, somebody to coordinate it, somebody to tell them what it means, somebody who is available to them, a person to manage a multidisciplinary approach to treating someone's illness. It is not just a headache and it is not just fatigue, it is several things that are a bothering a lot of the people. So you need a team effort and somebody to manage that effort.
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    If that particular program in Birmingham turns out to be as good as the preliminary indications seem to be, then I think there is a lot of potential for expanding that around the system and we may get much better results.
    Mr. GUTIERREZ. Are veterans feeling better in Birmingham? Are they getting better?
    Mr. BACKHUS. This only started in February, so it is impossible to say at this point. They are certainly more positive about it, and their frame of mind is better, and that is an accomplishment in and of itself.
    Mr. GUTIERREZ. Mr. Chairman, I want to ask unanimous consent so that members of the committee can hand written statements over to be included in the record.
    Mr. STEARNS. So ordered.
    Mr. GUTIERREZ. You know, we have been here. I looked forward to this. I have a markup in the Banking Committee. I am going to get to that and try to get back here as quickly as I can.
    Mr. STEARNS. Fine.
    Mr. GUTIERREZ. Thank you, gentlemen.
    Mr. STEARNS. Mr. Bilirakis.
    Mr. BILIRAKIS. Thank you, Mr. Chairman.
    This is the beginning of my 15th year in the House, and all of that time I have served on the veterans committee, and of course we have had so many hours, so many hearings on Agent Orange, not that that problem is ever going away, nor should it go away, but now we have another, quote, Agent Orange type problem. I guess as long as we are going to have wars, we are going to continue to have these things.
    Dr. Engel, are you an internist?
    Major ENGEL. I am a psychiatrist and an epidemiologist.
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    Mr. BILIRAKIS. I see. Well, do you go along with the statement made by I think it was Dr. Clauw.
    Is it Clauw?
    Dr. CLAUW. Clauw.
    Mr. BILIRAKIS. I believe Dr. Clauw made the statement that there has been a cultural bias in the VA to refer the patients quickly to a psychiatrist.
    Major ENGEL. Well, I can't speak to the VA. I certainly can speak to health care in general. I think that this subset of patients with persistent, unexplained symptoms tend to be in ''No Persons Land,'' that psychiatrists historically find them somewhat frustrating in that the patients don't want to talk about the emotional aspects of their difficulty, and internists find them difficult because they are trained to look at what is the right diagnostic test and what is the result, and they don't get satisfying results from the diagnostic test, and that is part of the problem.
    I think sometimes physicians, out of frustration, as they attempt to define cause or diagnosis, will say things to patients that maybe even they don't really think, but they feel stymied in this attempt, just as the patient does, to come up with a cause or diagnosis.
    Mr. BILIRAKIS. Dr. Clauw, you are at Georgetown. Have you had occasion to see many Gulf War veterans?
    Dr. CLAUW. I have only seen about 15, and the ones I have seen have the same types of symptoms and problems as I see all the time with people with fibromyalgia and chronic fatigue syndrome.
    Mr. BILIRAKIS. They tend to have the same kind of problem that non-Gulf War veterans have that you can see?
    Dr. CLAUW. Yes.
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    Mr. BILIRAKIS. Mr. Backhus, I realize that the sensitivity here that both of you gentlemen brought up in the process of your report—and, by the way, I might add that in my 14-plus years, I have, frankly, been very, very impressed with the work of GAO, and I really want to compliment you on that and the tremendous knowledge you have and share with us.
    Mr. BACKHUS. Thank you.
    Mr. BILIRAKIS. But in the process of developing your report, hadn't you coordinated with and worked with the DOD and VA and what-not? I mean, they weren't completely out of the picture in the process, were they?
    Mr. BACKHUS. Are you making reference to the report that has to do with the research?
    Mr. BILIRAKIS. I am making reference to the report. I mean, you submitted your written testimony to this subcommittee in preparation for this hearing, but you also had this report, which apparently has been leaked, in which you say—and I am sure rightly so—that it is incomplete. But in the process of developing that report, you didn't do it unilaterally—right?—you coordinated with all these other groups.
    Mr. HINTON. Yes, sir, we have done work at the agencies.
    The real issue we are working with, Congressman, right now is, we go through comments and assessing. The comments we got from VA, DOD, and the Presidential Commission basically center on the level of support for the emphasis behind some of the research that has been done, that has been done, has not been done, and we are having that debate.
    Through that process, we looked at all the studies that have been out there, our teams are going through the comments right now as we finalize our report, and that is what we are doing.
    Mr. BILIRAKIS. But your report will still ultimately be an independent report.
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    Mr. HINTON. Yes, sir. Yes, sir, and we stand behind it. We will be behind that report, and we will stand on its merits, and when we conclude that, that is a part of every GAO report that is done.
    Mr. BILIRAKIS. Let me ask this question. In my opening statement, and I am not sure I did it as adequately as I could have, but I talked about attitude, and I used the word ''attitude'' and ''attitude problems'' and all that. And I have been on the veterans committee, and I have visited veteran centers around the country, and much of the concern always has been the fact that veterans are, to use quotes, treated like welfare and things of that attitude—people problems. There have been reports of deaths in veterans facilities and things of that nature. And I attribute much of that to just an attitude kind of thing, just people not treating veterans the way they deserve to be treated.
    Would you say that much of what you have uncovered is consistent with that?
    Mr. BACKHUS. Well, in this particular case, the issue of treatment, we have really only made what I will call initial inquiries. We have been to three medical centers. I can't speak to the entire VA on this matter. However, that is what we hear and have heard from everyone we have spoken to, or nearly everyone we have spoken to, up to this point.
    Mr. BILIRAKIS. So it is consistent then with what—and if it is a people problem, and I realize you can't legislate people's minds and what-not, but it seems to me we ought to be able to solve that. I know there is civil service there and protection for employees and things of that nature, but somehow, you know, if we don't solve that problem, I don't care what else we do, we are never going to be able to take care of things like this.
    Mr. BACKHUS. I agree.
    Mr. BILIRAKIS. Okay.
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    Thank you, Mr. Chairman.
    Mr. STEARNS. I thank my colleague. Mr. Doyle.
    Mr. DOYLE. Thank you, Mr. Chairman.
    Mr. Backhus, I was sorry I got here late and didn't hear your testimony, but I have been reading through your report, and I think we share some of the concerns of Mr. Gutierrez and Mr. Bilirakis about the perception of Persian Gulf veterans that somehow we are not taking their problems seriously. And I take it, in the part of your report here you talk about the Persian Gulf Special Program Clinic, this is the Birmingham clinic you are referring to.
    Mr. BACKHUS. Yes, sir.
    Mr. DOYLE. It just seems to me—just a comment—that this seems like a VA center that is on the right track in terms of making sure that our Persian Gulf veterans feel like this problem is being taken seriously, and that they are seeing people who are trained and geared towards working on the problems the Persian Gulf veterans have.
    I just wonder, what do you see as the role of a VA primary care physician in providing treatment to these Persian Gulf veterans who have the hard-to-diagnose cases? What do you think their role should be?
    Mr. BACKHUS. They play a key role, in my opinion. These are the physicians who will coordinate, or potentially coordinate, anyway—all of the care the veterans will receive. That means any referrals to any specialty care, consulting with those specialists, receiving the results of the tests and other exams and work-ups that are done on the patient from wherever they come, and being the principal form of communication between the veteran and the medical staff. It is a key role to play, and it determines a lot about the success of the treatment and how the patient feels about it.
    Mr. DOYLE. I agree with that. Thank you very much, Mr. Backhus.
    Thank you, Mr. Chairman.
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    Mr. STEARNS. We want to thank the panelists for attending and their patience because of the vote on the floor, and we would now like to call up the next panel.
    Any member who would like to ask additional questions, as Mr. Gutierrez indicated, may ask those questions for the record.
    Mr. STEARNS. And now we will have Dr. Kenneth Kizer, Under Secretary for Health, Department of Veterans Affairs.
    Dr. Kizer, thank you for waiting, and we welcome the opportunity to hear from you. And perhaps it might be appropriate for you to introduce the people that are with you.


    Dr. KIZER. Certainly. Good morning.
    Accompanying me this morning is Dr. Frances Murphy, Director of our Environmental Agents Program; and Dr. John Feussner, Chief Research and Development Officer.
    In the interest of time and not to be duplicative of the written testimony, I am going to make some very brief comments.
    We have talked at a number of other forums about the overall approach the VA has taken to addressing the illnesses and the concerns of our Persian Gulf War veterans, and I am not going to repeat what has been said before. I would just note that the majority of our Persian Gulf veterans have a wide spectrum of medical conditions. Most of these patients have had their conditions diagnosed and have been treated according to the best contemporary medical knowledge.
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    The overall frequency of the unexplained symptoms among Gulf War veterans appears to be about the same as in a general medical practice, although the testimony of the other witnesses this morning would suggest that the frequency of these types of conditions is actually higher in the general population than among Persian Gulf veterans. Having said this, though, I would stress that this in no way diminishes the importance which we place on these symptoms and conditions.
    The questions that you have posed as a precursor and during the hearing raise a number of questions on how these difficult-to-diagnose and ill-defined conditions are being managed.
    The difficulty in managing these conditions been a source of frustration to many VA health care providers, as well as to me personally. We have heard testimony at hearings like this, we have listened to statements that have been made in veterans forums, we have talked to veterans one on one—I personally have attended numerous forums with Gulf War veterans—about the care they have received at VA, and while most Persian Gulf veterans have expressed satisfaction with the care that they received, we have also heard complaints and dissatisfaction from some.
    Some patients have been dissatisfied with the availability or access to care, although these complaints seem to be lessening as we have done some things to address problems in this regard. Others have complained about the continuity of their health care, and we have initiated a number of efforts to deal with this problem, and not just for Persian Gulf veterans but for all of our patients. I want to come back to this in a moment. Others have complained about the reception they have received by VA staff; some patients have rated the individual clinicians they have seen very highly, but they have expressed a great deal of frustration that their symptoms may be due to an uncertain cause. And as has been commented on by other witnesses, as well as members of the committee this morning, it is understandable how this would lead to a great deal of frustration on the part of the patient and the health care provider.
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    We think that we can address these concerns through both research and providing more treatment options. And, again, I want to come back briefly to say a couple things about that.
    I would also like to put some of this in context. As you know, the Veterans Health Administration is just about 2 years into a massive reorganization—a fundamental restructuring and rethinking of how the system is going to function in the future.
    One of the things that has been done is putting in place primary care teams. We now have universal primary care in VA, although how that is being implemented is not entirely uniform. This is not altogether surprising, recognizing the incredible effort that has been under way in the last 2 years to put in place universal primary care.
    On the one hand, while we have primary care teams available at all of our facilities, they have not in all cases, and in quite a number of cases, put in place case management. And I can tell you, though, that after yesterday's meeting with all of our network directors, a major emphasis is under way and will continue for the next year to markedly increasing the amount of case management that is part of primary care, as well as beyond primary care.
    A number of other things are under way that also will address issues of continuity of care—things like putting in place multi-institutional service lines, which we are poised to implement. Some of the facility integrations that are under way are really aimed at increasing the continuity of care and the access to services. We are about to launch a major effort in nurse managed care, and it will address some of the things that were talked about earlier. Likewise, we are moving to implement a health outcomes management approach to care that really will be on the cutting edge of what is being done in health care today.
    All of these things, as well as others, are aimed at improving continuity of care. I also would note that we are just about 2 years out from putting in place customer service standards. For 50 years, the VA never had customer service standards. Those have been put in place. We are now routinely surveying our patients to see what they say about the care, and we are holding management accountable to improving that, and we can demonstrate that actually care is improving, although it is not yet at the level I would like to see it at throughout the system, nor where it will be as we move forward.
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    Recognizing that the orange light is on, let me just say a couple of additional things.
    I think I have expressed my interest at a number of hearings in the past about providing a variety of treatments and approaches to treatment that VA has not historically done, although I would note there are quite a number of challenges inherent in doing that. Some of this was talked about already this morning by other witnesses, as far as some of the treatment approaches to the symptoms-based illnesses are not amenable to outcomes research, or some of the traditional approaches to care, because there is a lack of a clear definition of what is being treated, there is no clearly defined health outcome, there is no single treatment, and there are a number of other things that make assessing it technically very difficult.
    I would also note as an echo to what other witnesses said this morning, that many clinicians, inside and outside the VA, don't necessarily endorse many of what would be considered unconventional treatments, where there is a relatively weak-to-moderate evidentiary base supporting the efficacy of the treatment. And while I would personally like to pursue many of the options, I think there are a number of folks who would criticize moving forward in these areas of unproven treatments.
    Finally, as one of the other challenges I would note for the record is that in an era of funding cuts and all the resource constraints that the VA is confronted with, it certainly would be helpful for Congress to clearly state its support for the VA to engage in what would be considered unconventional or alternative treatments for these conditions which the scientist in me, at least, would suggest that in time and with further investigation, some of which will be shown to be of questionable effectiveness. If we are going to truly innovate and do other things, there needs to be a clear statement of understanding that not everything will turn out to be efficacious.
    Let me just conclude the comments by echoing again what some of the other witnesses said this morning, and that is simply that many of the symptomatic conditions experienced by Persian Gulf veterans, and perhaps even more so in the general population, and some of the problems they have encountered in the medical management of these symptom-based conditions go well beyond VA or DOD; they really are intrinsic problems to the state of science of medical care.
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    I think we can do a better job by our Persian Gulf veterans and I think we can contribute to the health care in general in the country if we had some greater flexibility in how we use our resources in some cases, as well as if there were a clear statement by Congress indicating their desire to pursue some innovative things for which the evidentiary base is, at this point, weak to mild, as was commented on by other witnesses.
    With that, I will be happy to answer your questions.

    [The prepared statement of Dr. Kizer appears at p. 143.]

    Mr. STEARNS. Thank you, Dr. Kizer.
    We have a vote on the floor, and we have about 12 minutes left. I am just going to ask you a few questions, and then I will come back, and I urge other members to come back.
    In February, I believe, one of your deputies said you were setting up well designed and comprehensive health care programs. And in this evaluation of VA Persian Gulf care, you asked your network directors to assess, how well a job are we doing with comprehensive health care.
    Have you received any feedback, any appraisals, on how you are doing with evaluation of VA, Persian Gulf care? I think that is pretty important to us.
    Dr. KIZER. I believe what you are referring to is the SEAT (Service Evaluation and Action Team that tracks trends in customer concerns) program, and we are getting that feedback. The instructions to set that out went out in February. Programs have been implemented only in the last couple of months. The feedback, I would judge, at this point, is still preliminary as they work through that systemwide, but that is the sort of information we will be looking at—and I know you will be looking at as well—to see the actual response that the Persian Gulf veterans are giving to their care.
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    Mr. STEARNS. So you are getting definite information back—since February, have you gotten that back?
    Dr. KIZER. We have what I would consider preliminary information at this point, given these programs have only been up for a couple months, and the results, at least informally, appear to be mixed. There have been some very positive things, but the nature of this structure is to deal with the folks who are unhappy. So I expect what we will be hearing through these SEAT teams will be mostly complaints. Indeed, that is what they are designed to do, i.e., to hear from people who are not satisfied with the care and how we can use that to improve the care that we provide.
    Mr. STEARNS. Both law and VA policy require that veterans be counseled on the results of the registry exam.
    What is your response to finding that veterans are seldom counseled and get form letters instead?
    Dr. KIZER. Let me ask Dr. Murphy to comment, who is more directly involved with that. Overall, I think that is an area we would like to see some improvement in. At least that is my sense in that, but let me ask Dr. Murphy to comment.
    Dr. MURPHY. I think that you have to refer back to the statements that the GAO made in reporting their very preliminary findings. They are at the beginning of their audit and have had very little or at best anecdotal experience with VA medical center Persian Gulf programs or veterans in this regard.
    VA Headquarters certainly have, on numerous occasions, given our registry personnel instructions about talking with veterans about the results of their evaluations and, in addition, sending a follow-up letter so they have a written record of the registry examination results.
    But, again, we don't view that as the end of the process. The registry examination really is only the beginning of the continuum of care including primary care team assignment. We expect an ongoing communication as the veteran is followed up and provided both care and treatment.
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    Mr. STEARNS. Dr. Kizer, what is your reaction to the idea of competitively awarding some amount of funding to VA medical centers to develop innovative approaches to providing care to Persian Gulf veterans with unexplained health problems that is putting some competition in the wards to these VA hospitals to try to get some innovative techniques?
    Dr. KIZER. I am very supportive of that. As you may know, we have internally been looking at trying to use some of the medical care funds this year to do that. And there are a couple of the areas that you could actually be helpful in that regard, although if you want to appropriate or allocate additional funds, I certainly would welcome that as well.
    But one of the problems we have is moving medical care funds into what is, as other witnesses characterized this morning, really a research endeavor, although it is also treatment. So, it is kind of that in-between.
    So if we had a clear statement that that was something Congress supported, so when the GAO and others come back and say we misspent treatment funds to do basically investigative work, that would be helpful.
    Likewise, insofar as these sorts of things may carry over between fiscal years, so that we may well be able to identify projects with funds that might be available this year, but by the time they got implemented and carried forward, they might go across one, two, or three fiscal years, the ability to manage those funds across time, which currently is not allowed by law, would be helpful as well.
    These are two things that would seem fairly straightforward and would help us a lot in doing some of this type of thing, which I think we are philosophically in sync with.
    Mr. STEARNS. Do you have any reaction to the GAO report? I mean, you have heard the gentlemen talk about it, you heard their three major findings, and I know DOD and VA have reacted pretty strongly. Is there anything you would like to say in respect to that GAO report that you feel is pertinent?
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    Dr. KIZER. I am not sure which of the two reports you are referring to. On the one hand, their preliminary report this morning——
    Mr. STEARNS. This is the one that hasn't been released, although many members have copies, and obviously the New York Times had a copy of it.
    Dr. KIZER. Let me come back to that. Their comments this morning, I think, were based on 20 patients of the more than 200,000 that we have treated. While I will wait to see what they find as they expand their universe of inquiry, but I think a sample of 20 is a small sample, to say the least.
    As far as the other one, the Department has formally responded. We think there are some very legitimate questions that have to be raised about the adequacy of the study. And I will leave it at that.
    Mr. STEARNS. Well, we have a vote, so I am going to recess the subcommittee, and we will come back.
    Thank you.


    Mr. STEARNS. The subcommittee will reconvene.
    And Mr. Doyle, if you are ready for questions.
    Mr. DOYLE. Thank you, Mr. Chairman.
    Dr. Kizer, welcome, and as always, thank you for your candid testimony. I want you to know that many of us on this committee appreciate that.
    I wonder if you could just take a minute, and tell us a little bit about what research, if any, is going on to look at these health effects of low-level exposure to things like we have seen in the Persian Gulf. Are we currently at VA doing any types of research to look at that? Is that being planned? Do you have the money to fund such research?
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    Dr. KIZER. There are some studies underway. I am going to ask the experts on the side of me to comment. I would note, out of all the areas that are difficult, this is one of the most difficult because some of the most fundamental things you would like to have to conduct research as far as what actually happened to our Persian Gulf War veterans you don't have, things like actual exposure dosages, duration of exposure, a number of other things that go with that. So the research really is focused more on controlled laboratory models that you may be able to infer from that to the actual setting. But as far as research, to actually answer the questions about what may have caused things among the veterans, that is probably never going to be productive because you don't have the basic information that you need to answer the question.
    Let me ask Dr. Murphy and Dr. Feussner to comment on specific projects. Dr. Feussner.
    Dr. FEUSSNER. Dr. Kizer pointed out some of the problems with low-level chemical exposures. What we did to try to get a sharper handle on this problem is convened an international conference in Cincinnati in March in conjunction with the Society of Toxicology and asked investigators from the United States, as well as from multiple European countries and the Japanese, who investigated the sarin subway incident in Japan, to come and help us with some issues and ideas about how to approach this research agenda.
    Now, creating that research agenda is still in process; however, two of the three recent broad area announcements that have come out from DOD and have gone through the Persian Gulf research working groups specifically solicit applications that deal with low-level chemical exposures, mostly, as Dr. Kizer indicated, in animal models, looking at toxicology, looking at genetic variation and some of the enzyme systems that are affected by these compounds.
    When the issue—when this issue broke last summer, there were three research projects from Europe that were part of the previous review but had not been funded, which were then considered and funded. If I recall, those three projects alone cost about $2.5 million.
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    The review for the first two broad area announcements by DOD—that DOD has done with the input from the Persian Gulf research working group, are completed, and we should be announcing in the very near future funding some additional research projects in this area. And then as we develop our research strategy, we also intend to publish the proceedings from the international symposium, and hopefully that will also inform the process.
    Dr. KIZER. If I might just interject one thing that I think it is important to at least put on the record that while the research is absolutely critical to furthering our understand of this, and hopefully better dealing with problems in the future, it is going to take time. This is a long-term strategy, and in the short term I agree with, I think, some of the other witnesses this morning that research is not going to provide answers to them because it is a long-term effort; and we really need to be looking at some alternative treatment modes that might be useful now even if we don't know whether exposures to given toxins or other environmental agents caused it or not. These veterans have problems now, and we need to be looking at more effective ways of dealing with them—and research isn't going to give us that answer right now.
    Mr. DOYLE. Doctor Kizer, Mr. Backhus in the earlier panel referred to a medical center in Birmingham that has put together a special Persian Gulf clinic. Do you think that is a good thing, and something VA is going to model some more?
    Dr. KIZER. Yes, it is, and I would comment a number of ways. One is if that turns out it is as effective as the preliminary results look, it should be promulgated further, and I agree with that. But I think it is important to note that he did qualify his statement by saying that the jury is still out on that.
    I am very encouraged by it, and it does appear to have a lot of promise, just as there are other models around the system that are promising. One of the structural models we have put in place to deal with things like that is a lessons learned center where we have people specifically focusing on things like that. Historically, VA facilities operated kind of independently, but when someone is doing something good like that, or if they handled a particular problem particularly well, we want to generalize that and get that information out to all of our centers so it can be implemented much more quickly than has historically been the case. This is a good case study to actually use that approach with.
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    Mr. DOYLE. Thank you, Dr. Kizer.
    Thank you, Mr. Chairman.
    Mr. STEARNS. I thank my colleague.
    Before I let you go, Dr. Kizer, here is an overall question that I would like to ask you: Would you discuss the feasibility of doing outcome research, actually what works on any aspects of treating the symptom of syndromes in these veterans; in other words, are you at the point now you can say this is what works, and we can now do outcome research to develop the effective models for treating Gulf War syndrome?
    Dr. KIZER. I want to be a little pedantic just to make sure I am correct. Most of the conditions that people have are well-defined conditions, e.g. diabetes or whatever. So I think what you are really asking her to do with the ill-defined conditions, the fibromyalgias, the chronic fatigue syndromes, the multiple chemical sensitivity syndromes, and those things there is some question about.
    I have real questions in my mind whether you can do outcomes research these conditions at this time for some of the reasons I noted before, as far as not having a clearly defined condition, a clearly defined treatment and some other things that you need. But that in and of itself doesn't mean you can't put in place treatments that seem to work, and then you may be able to make some qualitative judgment about whether they are working or not. But to do at least what I am used to thinking about as far as outcomes research, which does have some specific criteria and parameters around it, it would still be very hard to do that with these sorts of ill-defined conditions, but I also don't think that mitigates against putting in place treatment programs and trying to get some assessment about what you are doing and how that works over time, even though it may not meet the rigorous definitions that a basic scientist would put around it. I would certainly defer, though.
    Mr. STEARNS. Dr. Feussner, would you like to comment on that?
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    Dr. FEUSSNER. Well, if you are talking about undiagnosed illness, it presents a whole host of problems that Dr. Kizer enumerated, the definition of the disease, the definition of the intervention.
    Mr. STEARNS. Well, I think we are saying, like Dr. Kizer said, we have had all this experience now with Gulf War syndrome. Are we at the point now we can actually come up with models of research?
    Dr. FEUSSNER. Well, in some situations I think the answer to that question is yes. Perhaps the situation we are struggling with right now is the diagnosis of posttraumatic stress disorder, and last fall we funded a multisite national VA trial of Vietnam-era veterans, combat-related PTSD, looking at competing psychiatric interventions, trauma-focused group therapy versus usual counseling. That is a difficult and complex trial, but we have embarked on that.
    In this particular area, we will be releasing a program announcement seeking additional ideas about treatment focusing on posttraumatic stress disorder. That program announcement will come out later in the summer.
    In the area of fibromyalgia, chronic fatigue syndrome, there are a series of treatment strategies that have been proposed that involve combinations of exercise, psychiatric therapy and the like. The sample size in the preliminary research has been low. It might be possible to design some larger studies to look at these issues, but with mixed treatment results, it is not clear where that will take us.
    Mr. STEARNS. Well, I think at this point, I appreciate your patience in waiting while we went to the vote, and I think we will call up panel number three. Thank you, Dr. Kizer.
    And, again, if any Members would like to insert questions for the record to panel number two, it is so ordered they be able to do that.
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    Our third panel is Dr. Sarah Myers, of the Nurses Organization of Veterans Affairs; Matthew Puglisi, Assistant Director of Gulf War Veterans, the American Legion; Joseph Violante, Disabled American Veterans; and Jeffrey Ford, Executive Director of the National Gulf War Resource Center.
    Gentlemen and ladies—I guess Sarah is not here. Well, we want to thank you for your patience in waiting, and we will take your testimony. Welcome.
    Mr. STEARNS. We will take Matthew Puglisi first.



    Mr. PUGLISI. Thank you, Mr. Chairman. It is a pleasure to be here today and present testimony on this very important topic. I would like to thank you for inviting the American Legion and also thank you for having your second hearing in this Congress on Gulf War veterans' health. Gulf War veterans and VA will benefit directly from this committee's ongoing oversight.
    Gulf War illnesses, or Gulf War syndrome, describe the health complaints of thousands of Gulf War veterans. Today these complaints have defied a clear definition or diagnosis by the medical community. The Chairman's decision to investigate how VA approaches the undiagnosed health complaints is very wise because it gets at the heart of the Gulf War illnesses issue.
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    The essential question this hearing asks is how well does the VA treat veterans with Gulf War illnesses? There is little evidence that VA's overall approach provides effective medical treatment for Gulf War veterans with difficult-to-diagnose and ill-defined conditions. The structure of VA's medical system, the lack of treatment protocol to guide physicians in the treatment of illnesses, the nature of the illnesses and site visits conducted by the American Legion suggests that on the whole, VA does not effectively treat these illnesses. Outcome studies, once conducted, will show whether VA care is effective.
    There are a number of recommendations that the American Legion has made concerning how VA approaches the illnesses, and I would like to talk about one specifically, and that is training. VA should immediately investigate Gulf War veterans' experiences and psychological consultations and evaluate the consistency of the initial psychological evaluation of patients during a registry examination. Veterans diagnosed with PTSD have consistently complained of being sent to a wing or ward, along with patients who suffer from severe mental illnesses. Some have reported they do not return for care and are therefore left feeling ill.
    Should veterans diagnosed with PTSD or depression be sent to a separate waiting room or wing? VA should immediately investigate this question and make immediate adjustments if the answer is yes.
    Is it reasonable to dismiss certain risk factors associated with Gulf War illnesses, given what is currently not known? Although there are sparse scientific data linking chronic illness with low-level chemical agent exposure, the peripheral nerve damage found in some Gulf War veterans is not explained by stress.
    The relationship between many of the risk factors encountered in the Persian Gulf and Gulf War illnesses is currently being investigated by many scientific studies. Many Gulf War veterans complain when they offer possible explanations concerning why they are ill, many VA physicians dismiss the explanations by pointing either to negative lab results or lack of scientific data. This behavior is not exclusively found at VA, but at the Department of Defense in some cases and in the civilian medical community as well. This behavior undermines the doctor/patient relationship and does not encourage patients to return to VA for care.
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    Mr. Chairman, I would now like to take the opportunity to raise an issue that is of great concern to the American Legion. Over the strong objections of VA's Persian Gulf expert scientific committee, VA has decided to delay the completion of its National Persian Gulf Survey. This survey of 30,000 veterans will answer one of the most important research questions related to Gulf War illnesses, and that is, what is the prevalence of Gulf War illness in the Gulf War veterans population?
    VA has explained to the American Legion that the benefits of delaying this project, namely improving the design of the final stage of the study, outweigh the costs which are delaying answers to Gulf War veterans. The American Legion remains unconvinced. We have strongly urged VA not to delay the study for the benefits we cannot measure, and we encourage the Chairman to address this issue at his earliest convenience with the VA.
    In conclusion, there is little evidence VA effectively treats veterans who suffer from Gulf War illnesses. Formal and well-designed outcome studies provide evidence which reveal how effective medical treatments provided by VA are. VA should immediately initiate the studies while it determines which methods are most effective in treating Gulf War illnesses.
    There are also a number of structural changes that the American Legion recommends VA investigate in order to improve the health and well-being of ill Gulf War veterans and to pick up on a theme that was apparent in the first panel when some of the medical professionals talked about randomized clinical trials or some formal way of assessing which treatments are most effective in treating veterans with these complaints. The American Legion strongly urges Congress and the VA to look at funding such studies that will help us figure out how to best approach the illnesses, and these approaches can be implemented across VA.
    Mr. Chairman, this concludes my prepared testimony. I will be happy to answer any questions that you have after the panel has testified.
    Mr. STEARNS. Thank you.
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    [The prepared statement of Mr. Puglisi appears on p. 155.]

    Mr. STEARNS. We will take Dr. Sarah Myers next.


    Ms. MYERS. Mr. Chairman and members of the subcommittee, as a legislative chair for the Nurses Organization of Veterans Affairs and a veteran of Operation Desert Storm/Desert Shield, I am pleased to present this testimony on care and treatment of veterans with Persian Gulf War illnesses in the Department of Veterans Affairs. My written testimony includes both background data and recommendations on the care and treatment of Persian Gulf War veterans. For the next few minutes, I would like to spend my time addressing the recommendations in my report.
    While much has been done to improve the care and treatment of veterans with Persian Gulf War illnesses, inconsistencies still remain. NOVA would like to make the following recommendations: One, appoint an interdisciplinary primary care team to identify, screen and treat veterans with Persian Gulf War illnesses. Members of this primary care team should have an express interest in working with Persian Gulf War veterans. This team would also include an advanced practice nurse, such as a nurse practitioner. The cost-effectiveness of nurse practitioners is well-documented in the literature. For example, outcomes such as increased productivity, less use of prescription drugs and shorter hospital days have been reported. The appointment of an interdisciplinary team would provide more holistic, nonjudgmental and comprehensive care without increasing costs.
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    The second recommendation is to assign a female provider with expertise in the assessment, care and treatment of victims of sexual assault and trauma to the primary care team.
    My third recommendation relates to implementing one Persian Gulf War referral center within each Veterans Integrated Network or visit.
    My fourth recommendation is to provide increased education about stress as a source of illness. The awareness of the relationship between stress and illness may encourage some veterans to seek assistance.
    My fifth recommendation is to disseminate findings from VA-funded research on Gulf War illnesses. This education should be directed in the community to vet centers, veteran service groups, the lay public, and VA as well as DOD staff.
    My sixth recommendation is to develop creative strategies to facilitate maximum return rates of the updated Persian Gulf registry questionnaire.
    And my final recommendation relates to considering a mandate for all Persian Gulf War veterans who are in the National Guard or Reserves to complete the revised Persian Gulf registry questionnaire through their reserve unit.
    We feel the recommendations are critical in facilitating the continuity of care in Persian Gulf War veterans. Thank you for allowing me the opportunity to present this testimony, and I will be happy to answer questions at the end of the panel.
    Mr. STEARNS. Thank you, Doctor.

    [The prepared statement of Ms. Myers appears on p. 162.]

    Mr. STEARNS. Next is Joseph Violante.

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    Mr. VIOLANTE. Thank you, Mr. Chairman, members of the subcommittee.
    Since 1920, Disabled American Veterans has been dedicated to one single purpose, building better lives for disabled veterans and their families. On behalf of the more than 1 million members of the DAV and its auxiliary, I wish to express our appreciation for this opportunity to provide our assessment of the medical treatment of Persian Gulf War veterans suffering from Gulf War illness.
    It has now been more than 6 years since the fighting ceased in the Persian Gulf and the majority of U.S. veterans returned home. Yet there is no noticeable decrease in the number of new claims filed by Gulf War veterans as a result of illness believed to be associated with their service in that theatre. The fact there are still many unanswered questions and conflicting medical opinions surrounding Gulf War illness only serves to exacerbate the situation.
    Although most experts concede these veterans were exposed to a wide range of environmental hazards, such as experimental drugs, high levels of toxicity and substances from oil field fires, radioactive residue, parasites, pesticides, lead paint and chemical agents, there is little consensus in the medical/scientific community, as to the residuals, if any, from these exposures. Due to the confusion surrounding Gulf War illness, we question whether the veterans are receiving adequate medical care from VA or DOD.
    Mr. Chairman, the DAV is extremely concerned with the proposed funding levels for VA health care in fiscal year 1998 and beyond, with the outyears being the most devastating on VA's ability to provide adequate health care to America's sick and disabled veterans. If VA health care funding levels are not increased, all veterans, including Persian Gulf veterans, will see their ability to receive appropriate care diminished. While the lack of appropriate care will have a devastating effect on all veterans, it will seriously impact Gulf War veterans as they attempt to recover from the effects of Gulf War illness as they transition to civilian life.
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    A frustrating aspect of Gulf War illness is that many of the veterans are also underrated, and when they seek medical care, VA physicians or private physicians are unable to adequately treat them because of the unknown nature of their disabilities. In many cases, these brave young men and women are unemployed because of the debilitating illness, yet they are unable to receive adequate compensation or meaningful medical care because of the confusion surrounding their illness.
    An additionally frustrating aspect of this illness is that 6 years after the end of the war, we are still unable to answer the question about what is causing these illnesses. Unfortunately, the report by the Presidential Advisory Committee on Gulf War Illnesses, does not provide any concrete answers to the question of what is causing this illness, and as we have heard today, there are additional criticisms of that Committee.
    As scientific and medical researchers continue to search for the answers to the nagging question, our Nation must not forget these veterans and their families are suffering because of the veterans' deployment to the Persian Gulf. Accordingly, this Committee must continue to seek answers to help explain the mystery surrounding these unexplained ailments and to ensure that these veterans receive adequate compensation and appropriate health care.
    One of the items that the PAC report did note is that follow-up treatment is usually problematic. It is noted that staffing constraints often result in long delays in scheduling appointments, and psychiatric staffing is particularly overloaded at some facilities. Additionally, many veterans receive follow-up care from a number of physicians, both government and private sector, and no single case manager is responsible for their care.
    In the past, DAV has noted that there is a lack of coordination within the VA. VA health care intervention was often organized to respond to symptoms, rather than focus on possible underlying ideology. No VA medical person has the big picture of a veteran's multiple symptoms. Coordination of care and disease tracking would facilitate the overall understanding of the episodic as well as interrelational aspects of the medical problems reported by these veterans. Accordingly, a single manager would not only benefit the veteran, but would also serve to provide necessary coordination of care and disease tracking. As the VA moves towards primary health care physicians, it would appear the lack of coordination will hopefully be resolved.
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    Before I close, Mr. Chairman, I would like to caution the members of this subcommittee as the House considers the legislation passed in the Senate yesterday that would bar benefits to veterans who commit capital crimes. We ask that you would consider all the ramifications of that law, and we are opposed to any amendment to deny veterans' benefits to persons convicted of capital offenses. While we understand and appreciate the likely unpopularity of awarding government benefits to perhaps some infamous criminals, we believe that veteran status, once earned, should, in all but an extreme limited number of circumstances, be irrevocable on the basis of subsequent acts and shielded from disturbance on the basis of popular inflamed passions of the moment.
    Thank you, Mr. Chairman. That ends my statement.
    Mr. STEARNS. Thank you.

    [The prepared statement of Mr. Violante appears on p. 170.]

    Mr. STEARNS. Jeffrey Ford, Executive Director, National Gulf War Resource Center.


    Mr. FORD. Mr. Chairman, members of the committee, I am honored to appear here for you today for the third hearing in a row, especially pleased to discuss today the health status and treatment of Gulf War veterans. In written testimony today, I have provided information from 66 Gulf War veterans, their family members, DOD and civilian contractors. Information obtained in this self-selected, non-scientific study was gained via the National Gulf War Resource Center web site e-mail referral system. Since March of 1997, we received 256 referrals, for a total of 676, as of October 1st, 1991. In April alone, we received 105 requests for assistance.
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    Whether it is the DOD CCEP or the VA registry examinations, testing, treatment, misdiagnosis, indifference to suffering, a broken compensation and benefits program are the norm, rather than the exception. Using the survey below, we randomly selected from our database comments from April, May and June and present them to you today, the veteran's voice, unsolicited, raw, and if you will notice, very consistent in their condemnations. This is their testimony and not mine.
    We have listed here some of the questions that we ask, and I will read some of the responses: Do you feel you are ill as a result of the Persian Gulf War? Yes.
    Are you a veteran of the Gulf War, contractor or civilian employee? Yes.
    Have you registered with either of the Persian Gulf registries? No.
    Have you filed a claim with the VA? No.
    Please enter anything that may help the referring coordinator assist you. Need to find out where I need to register and get the physical.
    Another one: My son passed away February 15, 1997, while working a temporary job in Michigan. Mike called to tell me he was sick and in the hospital. At 2:08 a.m., February 15, the doctor called to tell me Mike had passed away. He kept getting colds since coming back from the service in August of 1994. The coroner said he died of acute leukemia. He was 27.
    Another one: During my initial Gulf War workup, I was essentially blown off. While it was not attributed to my diabetes, which I developed after the Gulf War, it was attributed to ''somatizations.'' This was true of most of the personnel who were screened at Womack Army Medical Center. Should I go to the Fayetteville VA Med Center and have the workup done again?
    I have registered with one registry, not sure which one or what good it does; how to help, get help or compensation.
    I am a 27-year-old male that feels 45 since the Gulf War incident. Please help me or direct me to a resource that can best help me with treatment and compensation. I feel as though parts of me are dying. Currently I have an honorable discharge as of 1994. No ETS physical was given, nor am I receiving any compensation or treatment of any kind.
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    Here is an interesting dynamic we hadn't considered: My former spouse is a veteran of the Gulf War. He was stationed with the 82nd Airborne Division. Apparently he was at Khamisiyah. My son, now 5 years old, has been recently diagnosed with a neurobiological disorder. I am looking for information on how many others have children being diagnosed with similar disorders. If information is required from his father, it may be difficult for me to get, as he does not keep in regular contact with his children.
    Another one: I am a nonsmoker. Before going to the Gulf, I had no breathing problems. I returned from the Gulf in May of 1991. I retired from the Army in October of 1993. In late 1994, I went to the Gulf War review at the VA and was told by the VA my lungs were working at 78 percent, but that there was no environmental cause for it. I was stationed with the First Infantry Division, which, of course, after the cease-fire, was camped south of Safwan in the oil field fires.
    Another one: I am getting nonstop headaches that last 4 days. My stools have blood in them off and on. I forget names, phone numbers, addresses. I get fits of anxiety and have to take medication. I get rashes that look like clusters of mosquito bites. The rashes pop up in small patches. I have also had some of the common symptoms of diarrhea, achy joints, chest pains and headaches. He still is yet to have a physical.
    Another one: Please help me find a support group or someone who can help me. I am on active duty at Fort Campbell, Kentucky. I don't know how to go about getting a medical discharge.
    Unsure what a VSO is, but after 5 years of trying to deal with the VA on my own and finally receiving a whopping 10 percent rating, not to mention having to travel 4 hours to the nearest VA Hospital, I would be very appreciative of any help I could get.
    Another one: I think I am dying from Persian Gulf War syndrome. I feel like I am dying slowly. My friends are scared I am dying. I used to be a semiprofessional soccer player. Now I can hardly run from my car to the front door. My lungs are bad to the point I almost suffocate and pass out. Blood sometimes when I go to the bathroom, number two. Diarrhea a lot, muscle twitches, achy joints like arthritis, tightness in my chest when breathing. I almost died in 1992 from my lungs. I went to the hospital back then, and they denied Gulf War syndrome existed. I am a fifth-generation combat soldier.
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    Apparently there are soldiers still on active duty in the First Armored Division in Bamberg, Germany. I could go on and on.
    Here is another one who is still on active duty: Been sick for the last 5 years, memory loss, fatigue, sick feeling, hurting in joints, night sweats. I have to stay on active duty. I am in Croatia.
    I have provided 66 more testimonials here, and one, especially, that I would also attach to my testimony today, from the parents of a young man I met about 6 months ago, and with the help of Dr. Murphy and the White House, we were able to get him to Birmingham to the referral center in time to save his life. Unfortunately, by that time, it was too late, and he is most likely terminal and will probably die within the year.
    I think what the GAO reports are saying and will continue to say is that we have had enough of the rhetoric research studies, into more research. I believe we have enough data to proceed, to go ahead and begin treating these soldiers and not just their symptoms, but their ailments, as a cluster, and we will know when that is finished when we stop receiving reports such as this. Thank you.

    [The prepared statement of Mr. Ford, with attachment, appears on p. 176.]

    Mr. STEARNS. I want to thank all of you. I have a few brief questions, and since we don't have any Members, I think the Minority staff might have a few questions for you.
    Dr. Myers, were you encouraged by Dr. Kizer's testimony regarding greater use of nurse practitioners treating Persian Gulf veterans perhaps? Did you hear him talk earlier?
    Ms. MYERS. I did hear him, and I was very encouraged because through telephone interviews with some of the Persian Gulf coordinators regarding the primary care teams, I learned nurse practitioners were not on the teams. I strongly recommend they be part of an interdisciplinary team in the primary care clinic or a separate team which specifically deals with Persian Gulf War veterans, similar to the women that—coordinators throughout the VA Medical Center,, so I really advocate they be placed on those teams. I think they have more time to talk to patients, and in many instances I think that is what patients want. They want someone to listen to them so they can hear what they are saying and spend time in dialogue.
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    Mr. STEARNS. Mr. Ford, while you were giving your testimony, I looked through some of these summaries, I guess these e-mails that came in. Have you gone back to them and tried to respond and help them?
    Mr. FORD. Unfortunately, due to the fact we are a small organization without much staff, it is a problem right now. We are trying to attain grants and funding so we can hire staff. As I said in the testimony, we have 676 as of 1995.
    Frankly, sir, no, I have not been able to go back and contact each and every one; however, each and every one that I do contact, there has been more than one time I have gotten off the phone and had to cry, especially in dealing with this gentleman who lost his son to acute leukemia, and it hadn't occurred to him that it may have been service-connected. And I spoke with him last week and come to find out he had been coughing blood, and there were many, many signs that he hadn't recognized. He was a tough Marine, and he didn't want his parents to know he was sick.
    We hope to have enough funding here shortly to hire masters' in social work to contact these people.
    Mr. STEARNS. I have got a solution for you. Every one of those cases should be referred to their local Congressman or woman. People who had those similar problems who come in, each Congressman has 15 to 22 employees, and in the District they have anywhere from four to nine. For these type of things, the veteran should contact a local Member of Congress. You could do a great service if you somehow could automatically e-mail back to them or send them a letter and say, your Congressman is such and such. Here is a toll free number for DOD, the Department of Veterans Affairs. Please contact your Congressman. We don't have the resources to do it. And that Congressman can help.
    And in certain cases we have been able to help in my District, and in certain cases the veteran died. A young man fresh out of high school went to the Gulf and died, but we brought that case forward, like other Members here on the Veterans' Committee can bring that case forward and bring to bear the publicity that is required to try to solve this problem. That is just a suggestion.
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    Mr. FORD. I know in the particular case of the young man that recently died, I did refer him to Senator Campbell. We also encourage every one of our veterans to continue to try to work with the VA. If they were not happy with their first exam, we recommend that they try to get another one. We encourage them to get a primary care physician. We encourage them to call the American Legion, the DAV, the VFW.
    Mr. STEARNS. Or just the toll-free number.
    Mr. FORD. Toll-free numbers. And we also encourage every one of one of them to contact Dr. Rostker's team, who is looking into incidents that may relate to possible health outcomes. And I tell my veterans everything we did and saw in Saudi Arabia could have potential for an answer to what may be making these people sick. So we do make an effort, but to tell you the truth, sir, I get an average of about 15 to 20 cases a week.
    Mr. STEARNS. I get over 300 e-mails a week of which maybe 15 are in the district. The rest are just around the United States and are on automatic pilot.
    Let me ask the other veterans' organizations, you were here patiently through some of the testimony of Dr. Kizer, and perhaps you heard the first panel, too. Is there anything that you want to comment particularly with Dr. Kizer? Is there anything he mentioned in terms of new ideas or something that you would want to put on the record that suggests that we should expand the role for physicians' education, or for research, or for case management, or, as we talked about just before they left, trying to develop a model based on what will work from the research studies? Let me start with any one of you.
    Mr. VIOLANTE. I for one would like to certainly see the VA move forward on any one of those initiatives. I think right now we are not getting the type of results we would like to see. And I think some of those ideas that were mentioned would certainly help this issue to move forward a little quicker than it is right now. And, again, I stress the need for appropriate levels of appropriations for VA in order for them to carry out those missions because it is important, particularly to these Persian Gulf veterans.
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    Mr. PUGLISI. Dr. Kizer made a comment that looks like a positive step that VA is taking and letting the divisions, the 22 legions of the VA, evaluate those and approach Gulf War veterans and treatment issues and within divisions assess how they can do it better and measure how effective treatments are. That is the SEAT process, the Service Evaluation and Action Teams that have been created. And they have been meeting since February. That is a positive step and something that we have recommended in our testimony, and I was happy to hear that that is going to be happening.
    Dr. Kizer also seemed reluctant, and he gave some pretty valid reasons why, he seemed reluctant to conduct outcome studies because he rightly pointed out the wide range of symptoms that veterans are reporting, and it probably wouldn't be effective if VA were forced to look at this in a very broad way, all the symptoms that go undiagnosed and all the various treatments. But he did leave the door open a little bit when he talked about being a bit more focused, and that would certainly be appropriate, and perhaps looking at a veteran who has particular complaints of fatigue, and then measuring how VA has been approaching that kind of fatigue. Is it muscle fatigue after you mow the lawn or take a walk, or is it being tired all day long? Those subtle differences will tell doctors what kind of complaint it is and how to approach it, so I did hear some positive things.
    But I want to point out that VA has been pressured from the outside in trying to find the cause for Gulf War illnesses and a definition. And those are important things to do, but this hearing and other efforts by GAO and Congress are going to encourage VA, and the American Legion has encouraged the VA, to look at treatment, because while these basic research projects are ongoing, and while DOD conducts its investigation into chemical weapons and things like that, veterans are left remaining ill. And we are not going to have all of these studies completed until well after the year 2000, and they are still going to remain ill, so now is the time for the VA to start measuring and assessing how effective its treatments are now and how it could get better.
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    Mr. STEARNS. Dr. Myers, you will close.
    Ms. MYERS. I have three comments and maybe one relates to Dr. Kizer's comments relating to case-managed clinics, and I would strongly recommend that because one of the things that I hear from Persian Gulf War veterans is the insensitivity that they face when they come to VA hospitals, and this has also been reported to me by some of the Persian Gulf coordinators at some of the various VA medical centers, so I think implementation of that would help a great deal.
    Somehow there needs to be a method for VA personnel to be more responsive and available to the Persian Gulf veterans' availability. In my testimony, I mentioned Saturday clinics. One of the VAs, particularly the Boston VA, addressed that, and that was very—that was found to be very effective. However, one of the problems they had was the coordination that that took as well as the human resources that were needed for that clinic.
    And my third comment relates to the need for longitudinal studies, which are expensive, but I think they need to be implemented to follow veterans over a period of time to look at differences.
    Mr. STEARNS. My time has expired. Anything that the staff would like to add or like me to add for you?
    Ms. EDGERTON. Let me go ahead and just get your responses as a panel to one final question. We have heard today that many Persian Gulf veterans are experiencing multiple and perhaps compounding problems. Are there specific symptoms or syndromes that you all think merit our attention focusing on treatment protocols? I'm looking for you to respond with any of the—maybe even controversial constellations of symptoms—termed as multiple chemical sensitivity or fibromyalgia.
    Mr. FORD. I know that in my research, and I do communicate with a number of veterans, and there seems to be a continuing pattern, and that is joint pain, peripheral neuropathy, tingling and a numbness, fatigue. Most of them are to the point where they cannot work a full-time job. Headaches, the night sweats and rashes. Now, every now and then you will get the MCS symptoms in there also, but I don't seem to see that in a great frequency.
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    And one other thing I would like to point out while I have the chance, on the first week of this month, Dr. Murphy and Dr. Mather from the VA held a conference in Long Beach where 600 health care providers from the VA system had a 2-day seminar, and I would like to thank them for putting that together, and I believe it was very productive in reaching out to referral coordinators, vet centers, Persian Gulf examination physicians. And hopefully, if we can somehow keep the VA budget from being cut by over $2.092 billion over the next 5 years, hopefully Dr. Murphy and Mather and Dr. Kizer can have some more of the resources that they need to continue to deal with this problem and the programs more effectively.
    Mr. VIOLANTE. I would have to agree. I think the constellation of symptoms that we see the most are fatigue, chronic joint pain, memory loss and headaches. And I would certainly like to see some studies looking at those.
    I would even go further and say I would like to see something done with multiple chemical sensitivity. I know in the beginning there was much talk about that. It is an expensive proposition, but I believe it is one worth looking into and would like to see something done in that area.
    Mr. PUGLISI. We heard this morning from medical doctors who talked about things like CFS, MCS and fibromyalgia, and I am sure that you are aware that multichemical sensitivity is not recognized by the American Medical Association as a diagnosis. It may be one day, as CFS was not for a long period of time and eventually was when CDC came up with a case definition in 1988. But looking at those kinds of illnesses, whether or not they are completely accepted by the medical community is important to do because there is so much overlap between those diseases or illnesses and what we are seeing in Gulf War veterans. And that is why it was very important, I think, to hear from Dr. Clauw and Dr. Kipen and Major Engel on the first panel, gentlemen who devote a lot of time and energy to trying to understand patients who have these things.
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    And if we are going to look to clinical trials to find an effective treatment, it would be appropriate to look at how civilian doctors approach these patients and how VA and DOD approaches Gulf War veterans with these illnesses. And, again, it is not labeling the patients with any of the other things that may be occurring at the same time, and there is a lot of comorbidity with these illnesses of various other illnesses. And at the same time it is not coming up with an etiology at all. We are not saying that you are sick because of chemical weapons or are definitely not sick because of chemical weapons. It is just an acknowledgment of an illness and that it looks like a lot of these other things, and we should approach it in the same way.
    Ms. MYERS. I think that more studies need to be done, conducted, related to the issue of birth defects in children of veterans, and I would like to reemphasize the comment I made earlier on longitudinal studies.
    Ms. EDGERTON. Thank you.
    Mr. STEARNS. I want to thank staff, and I want to thank all of our witnesses for their patience and for their participation. I think we have learned a great deal today, and I hope that Dr. Kizer will take a lot back to the central office, some of the ideas that we have talked about, that you folks have talked about, what has been proposed, and perhaps we are not any closer to the question of the cause of the Gulf War syndrome. I think we have a better sense that improvements can be made to the system of care that is afforded to the veterans, and we have a little bit better, Mr. Ford, as a result of your listing of the different people—those are real people out there that are having real problems, and I think every one of us as an elected official has a responsibility to try to answer their questions. We will be following up on the VA's efforts here, and we continue to have more hearings, but again, I want to thank all of you, and with that the subcommittee is adjourned.
    [Whereupon, at 1:02 p.m., the subcommittee was adjourned.]

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