On The Record Testimony July 30 oversight and Investigation House VA Committee on Gulf War Illness Research

Testimony Submitted for the Record House VA committee/Oversight and Investigation Subcommittee Hearing July 30,2009

The Implications of United States Department of Veterans Affairs Limited Scope of Gulf War Illness Research

by Denise Nichols, Vice Chair National Vietnam and Gulf War Veterans Coalition, MAJ, USAFR(ret), Flight Nurse, RN(ret due to illnesses), MSN, [email protected]

The Implication of the USDVA Limited Scope of Gulf War Illness Research:

The implication to the veterans of the Gulf War 1(Operation Desert Storm) to limited scope of Gulf War illness has mainly been to affect us in the care and claim approval.

When research for one of many examples on Animal studies to not be accepted or ruled out to be reviewed it directly affects the veterans in their claims being approved as has occurred now for 18 years and has caused many to have died without having received the claim approval leaving their survivors without help. They have died feeling abandonment by their own government that they so proudly served.

The veterans who live with the chronic deteriorating illnesses have no relief financially and have lost totally their standard of living. They have become demoralized and depressed due to those circumstances.

They struggle daily desperately holding on to their family or job even when they are significantly disabled. Job hoping has occurred in the medical people that have tried to stay employed because they want to avoid detection of not being able to perform as they should. This has occurred in many fields of employment. Those that turn to truck driving have ended up having to have a wife or companion travel with them to deal with the disorientation and potential safety hazards they are experiencing directly connected to their health changes from the war. Those that try the post office can not handle a walking route or their autonomic nervous system dysfunction can not handle the varying temperatures. These are just a few examples of the many I have from dealing directly with the veterans.

I will also emphasis to you the safety factor problem that can indirectly impact on loss of innocent civilians’ lives due to this denial. I have examples that I could detail to you in a longer testimony.

The worse case is unemployed trying to get social security to barely sustain themselves much less their family. The stresses upon their spouses, children, and extended family are causing even more devastating impacts on the social economic fabric of the nation that veterans form the backbone to that strength historically.

Many have ended up homeless or finding a way to end their lives.

The health care they receive is minimal. They are being turfed off as we say in medicine because the answers, diagnostic protocols, and treatment modalities are not there or have been considered fringe medicine. They are turfed out to Psychology Departments that know this is not psychiatric! They get labeled psychosomatic or personality disorders in order to turf them out medically and to avoid claim approval. To limit time involvement, cost, and physicians retraining. This is a huge disservice that is leaving a huge black mark in our society and creates a distrust in their government to grow within the veteran, their families, and extend generationally.

I want to emphasis this is not a cultural sensitivity issue but a lack of training in physicians. It is a lack of communication. It is a lack of utilize the research and translating it to actual practice that has been purposefully blocked by administration and institutional denial, indifference, ineffective law enforcement, oversight, and prosecution for failures.

It creates a moral and ethically dilemma for the health care providers within the VA that know this is a physical condition that they are being blocked from acknowledging to their patients. Many avoid or limit time with Desert Storm veterans because of that. I have had a primary care provider be in tears with me because she is so frustrated and then to tell me her hands are tied. I have had that same primary care provider that knows I was a highly educated and skilled nurse and that when I brought her research articles from a peer reviewed research journal with the names and contact information of the authors and ask that she read it and start testing and treatment as recommend by these doctor researchers and to start saving our lives ended up saying I am sorry I can’t and would you like a referral to psychology. Total inappropriate response!

That is when I gave up on the VA, I would rather not have the stress of dealing with that manner of medicine and go without anything at all than have to do battle at that level when I am also battling for changes as I called it at the head of the snake for myself and all veterans of the gulf war, who after all were and I feel still are my patients. I tried and still do try at lower levels of the VA but it is apparent and they have told me it is not because they want to be that way but because their hands are tied!

So I concentrate at the top as I do with you to get clear policy from the administration and the legislators to govern and change the total VA in regards to the gulf war veterans. I am part of the gulf war veterans that became advocates/leaders/ the loud squellers for our fellow veterans since our return from the war. Even though many of us are ill, the indignity and inhumane denial we and all of our comrades have endured fuel us to keep going.

Our care, health, and economic survival(claims) has been affected by the Restrictions/policy directives on Gulf War Illness Research placed on the IOM by the VA Department, the Secretary of the VA in the past 18 years and by the administration. We have also suffered by the lack of completely unified Senate And House VA Committee hearings in a consistent and timely manner to have through updates, status reports, oversight and investigations on Research, Claims, and Health Care for Gulf War Veterans.

That is why I have been since January advocating Joint Hearings on the Senate and House VA committee on Gulf War Illness the information has become disjointed, unconnected, not focused. And most of all parties are not being heard, most of all the veterans both the advocates that have been here since 1992 and the veterans themselves. WE have suggestions for change, we have horrifying examples that you need to hear. WE have experts that served in key positions during the war that have still not been heard, they need protection to come forward. We have retaliation that has occurred that you need to hear and address!

WE need to have these hearings on a regular ongoing basis until all the problems are corrected. WE need new laws introduced and inacted and enforcement of all laws for the Desert Storm Veterans.

We need truth, accountability, clear policy from every level of government, we need change now it is past due. WE need a cleaning out from government of those who were involved in this denial, delay, and obstruction and interference with the truth. We need people prosecuted in order to really affect change now and in the future. That is the only way that we will overcome the historical legacy of the atomic veterans, the test veterans, the Agent Orange Veterans, and us the Desert Storm Veterans of Gulf War 1. Each generation of veterans has said NEVER AGAIN! WE have tried to make those words real and mean something but without you our elected officials on the hill and the President taking that message to heart and making it happen we are destined to repeat history errors again forever.

What the Veterans of Desert Storm Say to Have they been adequately served?

The answers come fast and frequently and they include: No, the doctors at the VA don’t even review the findings of physicals and tests received if we go to one of the funded research studies. No, the VA doctors still say it is stress either verbally or in non verbal means. No, the VA does not even cooperate with the Researchers that have funded studies to notify gulf war veterans either thru posters or flyers that are being offered by the researchers. No, and in their allotted 15 minutes for an appointment they do not even have adequate time to go thru all my past problems and my current complaints, I always feel rushed.

No, the doctors do not seem to know about research findings that back up our complaints.

 No, I asked to be put on the Gulf War Registry and they had no idea what I was talking about. No, the doctors do not even know some of the breaking treatments in Chronic Fatigue, Irritable bowel syndrome, or fibromyalgia. No and I feel they dont like to educate their patients about their own clinical tests and findings. No, I ask them if they have had any training at all into Gulf War illness or related illnesses and they said no. They don’t want to spend much time with us.

No and I don’t care if they are not military doctors or prior experience I just wish they would know more about the related conditions, they seem completely uninformed. No, and when I went to VA hospital I felt totally lost and their was no one to help guide me thru this mess. No and the clinic doctors told me they don’t know what to do for me and want me to drive 150 miles to the VA hospital. No, all they seem to want to do is put us on pschy. drugs and not truly look into our bodies! No and I had a heart attack before Xmas and I am glad I went to a civilian hospital at least I am alive now. No and what is this about a War Related Illness Center how do I get there my doctor says he can not help me get there!

No, the situation has not changed one bit since I went to them in 1994. No, and I still am getting denied on my claim or my claim is lost or they are stressing me out asking for more documentation I do not have. No and I got social security help more rapidly. No and they cann’t seem to find my records. No and they keep wanting to push my claim as PTSD as the priority, I guess I will take that because my family is breaking down and I am loosing everything. No and it seems we should never even try to claim gulf war illness because they refuse to adjudicate those.

That is what we get in emails, chats, phone calls everyday as a gulf war veteran and advocate! Those of us that are gulf war veteran advocates have manned our own suicide calls from across the nation, thank god they finally heard us with the new OIF/OEF veterans and finally set up the hot line. Those of us who stepped forward to get answers and help not just for ourselves and others feel we are still in the war 18 years later. We wonder when the VA will ever do the right thing? Why won’t the VA listen to us when we try to be constructive and help with the solutions?

What the Veterans and Advocates have Asked:

Registries-Task Forces-Outside Civilian Agency Involvement- Independent Oversight

WE have asked for Death registries so that veterans, family members, doctors, and researchers truly can see transparently what is happening. We have asked for a Diagnosed illnesses registry to serve the same purpose. WE have asked for local, state, and regional Desert Storm Veteran Illness Task Forces to involve the doctors, the veterans, and others so these issues can be addressed from the bottom up and top down. WE have asked that CDC, Cancer Association, Heart Association, and other associations be involved in getting data and evaluate if the occurrences is above the normal. WE ask for some independent oversight.

Referral Centers- Centers of Excellence- Integrative Research to Clinical Practice Centers

WE have asked for Referral centers and Centers of Excellence and Integrative Research/Clinical Practice sites be set up with major medical universities that have done some of the positive gulf war illness research.

Training of Doctors by outside Experts in Environmental Health for VA Physicians

And for the VA to Hire Environmental Health Experts or Experts in CFS or Fee Basis to Use Outside Experts

We have asked for the offers made by Environmental Physicians, Physicians from the American Academy of Advancement in Medicine, Physicians that see and treat civilians with CFIDS/Fibromyalgia to train VA physicians to be accepted. We have asked that these type doctors be recruited by VA even on part time basis to be able to see us and treat us at the VA. All have been turned down.

To HAVE GULF WAR VETERANS WHO ARE ILL AND HAVE BEEN ADVOCATES NATIONALLY TO BE INVOLVED AND HEARD FULLY

WE have asked to be involved in the process to make needed change. We have shown our willingness even if patients to take an active role in making a difference.

I myself made an extensive presentation to the National Academy of Science and IOM years ago laying out 26 specific suggestions that would help, it was all like talking to the three monkey syndrome.

I have been here every step of the way every hearing on the hill, every meeting of the PAC GWI, PSOB, many of the DOD OSI GWI townhall meeting, almost all the VA‘s RAC GWI meeting, many of the Gulf War Veterans Advisory Committees, NAS-IOM meetings, I worked closely with the Government Oversight Subcommittee that held three years of hearings, I worked going door to door briefing the members on the hill, and encouraging cosponsorship of each of the gulf war veterans bills, I have submitted my resume for each advisory committee that was formed, I have testified, I have brought other gulf war veterans and their family members forward, I have brought researchers and doctors forward, I have done outreach to not only veterans, family members, doctors, but also researchers. I have gone to medical meetings across the country to meet doctors and researchers and interact with them.

I did this not as a glory purpose but to do all I could have since I was a nurse officer and holding an MSN. I did it to try and work closely to resolve the problem but as most of us that have participated a bit or more actively we have been not welcomed. And many other Gulf War Veterans throughout the Nation have been involved the past 19 years that could be will utilized at the Dept. of Veterans Affairs.

Current Situation

Seems like it continues to be a chain of survivors holding on to each other without alot of support. So my answer like so many of the other desert storm veterans is NO we have yet to truly pick up that stone they always said in so many testimonies that they would not leave unturned. AS I told Dr Joseph years ago during a vote break in one committee and he got rather upset. AS I said at one of the first hearings (Senator Reigle’s) we the Desert Storm veterans are a family and a community we may have served different services and different locations in theater but we have had to become that family and community. We wonder where is the DOD and VA still after 18 years and where are the Commanders that are suppose to take care of their troops in all of this?

WE are frustrated and have developed PTSD because of this treatment. WE are tired of bring in the studies and outside lab results to have it tossed aside and not even considered. WE are upset that some of the doctors, researchers, and officers that had information and shared it, that stood up for us have been paid in retaliation by attacks on their careers.

WE took oaths as we entered the service or reenlisted and we are wondering – have others forgotten theirs? Have you forgotten to take care of your troops? Have you left us on the field of battle? WE are gather in our bunkers and sending radio messages for evacuation and aid and it seems like the communications still are not being received.

OUTSIDE THE BOX THINKING -INNOVATIVE

Maybe we should think outside the box and call in civilian support as they do with the CRAF and mobilize civilian medical and have reactivation to recall us into our units, do a recall of who is sick, dead, triage, and start providing care to save lives. The former military nurses and doctors, and all allied medical health care providers that are ill will help in this process if given the resources, etc.

WE expect an all out Manhattan project with Combined expertise(Task forces of all related expertise) to be involved in the research effort to get answers and to make the transition fast for any findings to be deployed to the clinical setting. Any research done must have a plan to disseminate the findings, educate on the findings, means to apply it clinically in practice in an ASAP method laid out in advance of approval of funding. This isnt just for the gulf war veterans of 1990-91 but also for national security to learn how to diagnosis, test, and treat if this occurs again. It will also most probably help a large part of the civilian population that suffers from CFIDS, ME, Fibromyalgia that is costing this country greatly in economic impact in so many ways.

If we can do it for weapon production we can do it in military medicine! If we don’t the cost is much greater. Morally and Ethically we must.

Medicine is in a different place and different breaking research occurs faster than in the 70-80’s when we had the Agent Orange Situation. Let us reflect on the history that has been positive in advancements made in war time and in NASA advances that have benefitted not just the military but civilians. One example is the rapid helicopter transport in Vietnam that is now commonplace in civilian life. The rapid treatment of shock that has transformed medicine. So many examples.

I ask you here in Congress and in the Administration to take the lead and make a difference, it has been 18 years! I ask VA to reexamine itself and make corrections immediately. I ask the DOD to acknowledge they handled this poorly. I ask the President to hear us and make a clear policy statement that leads us to a Yes WE CAN and YES WE WILL.