Denise Nichols, M.S.N.
Good morning Congressman Michaud and Representatives of the VA House Health Subcommittee and the audience in attendance this morning. I am honored to be here today representing the National Vietnam and Gulf War Veterans Coalition other Gulf War Veteran’s groups that came forward to our elected representative since shortly after we returned from Operation Desert Storm in 1991.
I am Denise Nichols a gulf war veteran and retired registered nurse with an MSN who served along the border of Saudi Arabia and Iraq in 1990-91 with the USAFR out of the 32nd Aeromedical Evacuation Group, Kelly Air Force Base, TX. When deployed all the Air Force Aeromedical Evacuation resources came under the 1611 AES(P). Our facilities were deployed throughout the theater with units at KKMC,KFMC, and all along the border of Saudi Arabia, Kuwait, and Iraq.
My particular Mobile Aeromedical Staging Facility (less than 50 people) was located at Log Base Charlie between Rafha and Hafa Al Batin. Our unit was theoretical in the exposure zone from Khamisiyah bunker complex demolition since we were assigned to the 44th Medical Group with the Army 7th Corp. Although it appears that the Air Force units were never included in lists provided by the DOD despite all my efforts with DOD during the time of the Office of Special Investigation of Gulf War illness and all the other committees and boards during the 1990‘s. The Army COSCOM unit was down the tapeline Road toward Hafa al Batin and a bit further was the Army Engineer Brigade site that was over the 37th Engineers that actual did the demolition. In the direction toward Rafha were the Army Hospitals(3) we received patient flow from the closest one being an Alabama Army Guard Medical Hospital I believe it was the 115th or the 110th.
I can tell you now that the symptoms of Gulf War illness began to appear when we hit Riyadh and then as we moved forward thru KKMC to our forward location. WE just were not fully aware of what the symptoms were representing at the time. We had rashes, visual sensitive to light, joint aches, urinary urgency, and diarrhea occurring. When you are in a desert environment and you are at war your job and duty comes first. We also had weird accidents I called them the clumsy/stupidity type accidents…falling from stairs of buses is but one example and then the weird ones of troops breaking training and handling explosive ordnance they found. We also had respiratory problems surfacing but again a lot of these symptoms were downplayed. And of course all the tens of thousands of alarms which were going off and we were being told that they were false. We had had our first round of anthrax shots in Riyadh and being a nurse I insisted that it be documented on my international immunization record(Type A vaccine but no lot number recorded and date). Probably not too many got documented because they had us signing a roster, which I have been told was lost in transit. We also were order to take the PB tablets. We also had to deal with the sand flies -leichmanasis. We also had pesticide spraying occurring at all the locations of troop deployment within Saudi. We also had shots on mobilization. Despite having been in charge of our mobilization shot scheduling for our whole 32nd Aeromedical Evacuation Group and I believe that our unit personnel were at the highest level for compliance for required world wide duty we still had additional shots thrown at us in the deployment line to include IGG, polio vaccine, and hepatitis and others. I had attempted personally to assure that my shot record was current so I was surprised when more shots were thrown at us. I had already as a medical person gone to Lowry AFB in Denver to get my hepatitis shots that I knew would be required for medical personnel and that is based on building up immunity levels. I had also pushed to have pre-deployment dental review done in Denver. I was in Deployable Ready status and didn’t want anything to slow us down when we were called to report because we would be busy as officers being sure that all our unit personnel and equipment was ready to go.
The symptom that I believe we all missed was the mental irritability/mental cognitive/neurological functioning changes that began to surface when we hit Riyadh. This showed up in weird behavior that I now can attribute to behavior much like Brain Concussion cases where you have a change in mental cognitive and behavior functioning. This was not PTSD!
Since our return from the gulf war in 1991, the gulf war veterans were directed to the DOD/VA Clinical Evaluation Program, these programs have all but died because of VA neglected. Testing that was done in these programs to include EEG’s, EMG’s, and neurocognitive functions and many other tests were never compiled and released to the veterans or to the researchers that would follow. Many research studies listed in the Presidential Advisory Report have never been published.
In the majority of the VA Hospitals there is no information posted directing the Veterans of Operation Desert Storm Veteran Gulf War 90-91 how to access this program i.e. the Registries and what list of tests to anticipate. The Environmental Agents names and locations within each VA are not posted and therefore veterans seeking help have no information. The gulf war veteran support groups at the VA hospitals were quickly dismantled. Some of our veteran advocates have asked individual VA’s to place posters and information and provide the information desk with information that occurs immediately after we bring it to their attention but slowly every time the information vanishes.
The registry was suppose to be an ongoing program and updated but that has not occurred. Physicians and health care providers at the VA have not kept up on the advancements made and are not well informed. So a sick gulf war veteran appears at their doorstep there is no information and the physicians and staff don’t even have knowledge of the latest research findings. The Veterans themselves like Anthony Hardy, myself and many others of us try to bring materials to them and update them. Thank goodness I did this with a VA Emergency room doctor because it was shortly thereafter one of our young female veterans presented to that ER after being told by staff she called by phone she was just having indigestion. Well she was having an MI(myocardial infarction/heart attack). He took her seriously and did an EKG and she remembers him being astonished. She was quickly given a coronary catherization and taken to surgery. She lived others I know that went for help died because of lack of examining our gulf war veterans. The data on heart conditions has not been shared. The data gained from autopsies and cause of death is not shared. This is simply not acceptable to have clinical staff that are not knowledgeable and to have valuable data and statistics not available.
The expertise on treating a multitude of toxic exposures is not within the VA. Very few gulf war veterans that came to the VA even got a true physical neurological assessment the kind you do at the bedside not with all the brain scans etc. Therefore they were never truly assessed, then ordered follow up neurological testing. As a nurse with a master’s degree I was taught the basic physical assessment that medical students are taught and I was astounded at the lack of physical neurological assessment. I was also astonished to have Drs like Victor Gordon that had done SPEC SCANS on many gulf war veterans that showed abnormalities to be discounted. I had many words over the years with people like Dr Fran Murray that were denying the findings by SPEC and PET Scans and saying they were not valid. I was also upset that basic blood work to examine our hormones, adrenal, thyroid and pituitary functioning were not tested. I was upset when I asked early on for heavy metal testing and it was denied. I wondered if they were really wanting to find answers and give us competent care and diagnosis.
They do not even ask physicians in the civilian world involved in environmental health or anti aging which is a board certified field to be involved in training their physicians. In fact it has been documented that these doctors have approached the VA headquarters and different VA’s to offer their expertise and to help train the physicians that are seeing gulf war veterans and they were turned down! There are advances in the treatment of these conditions and also in the area of Chronic fatigue and Oxidative Stress that could immediately benefit gulf war veterans who are suffering from ill defined or undiagnosed illnesses. We have had many veterans go to civilian doctors for help and this is unacceptable when they fought the war they were told to fight and have to find money to go to civilian doctors. It is also unacceptable for ill patients who look to doctors for relief to have to be bring in stacks of research that shows the direction the physicians should be examining and then to be ignored. It is unbelievable that patients, our fellow veterans -this country’s veterans- who are ill suffering with neurological cognitive damage and other bodily system damage are having to share the expertise and teach doctors what they should know and practice and how they should be looking , examining, and testing the veterans.
The VA Newsletters to veterans has not been distributed for years. The VA central office has not responded to our request to update manuals, keep the newsletters up, or develop a means of keeping their staff informed of research findings throughout the years since 1990-91. The VA is also dismantling the Environmental Agents at each VA hospital or are not replacing them as they leave.
When veterans bring them research findings that could help the veterans even providing reprints and Drs and researchers names and phone numbers I doubt they even read the material much less try to make improvements in clinical care of the gulf war veterans at their facilities.
A case in point at a brainstorming session at the CDC conference in 1999-2000 with a physician, I pushed the idea of checking the veterans for hypercoagulation (meaning thick blood that decreases the ability for the blood to flow to all major organs). This condition is similar to what I saw as a critical care nurse in at Wilford Hall USAF Hospital that resulted in Disseminated Intravascular Coagulation. The symptoms that we were experiencing that led me to this idea was the bleeding gums, the nose bleeds, the uncontrollable menstrual cycles, and the bleeding in stools. Sadly our females were not worked up but given hysterectomies early in life as a result. This is also a condition that had previously been studied in Chronic Fatigue patients and can be treated. An independent study was done and all gulf war veterans in the study were tested by HEMEX Labs in Phoenix, AZ and all were found to be abnormal. The exploratory study and results were published in November 2000 in the Journal of Coagulation and Fibrinolysis, a peer reviewed journal. I had my own blood in that sample and the veterans that I contacted throughout the country to send in samples had theirs. This was a small sample study but represented a cross section of branches of services, location in theater, duty titles, etc. I took the published study in and briefed my primary physician, a hematology specialist, and gave her all the authors names and contact information. I asked her treat me for the condition she refused having previously told me her hands were tied in regards to gulf war veterans with gulf war illness. I asked her to start testing the other veterans of the gulf war at the VA Denver Hospital. Not getting anywhere I was rightfully upset and at that time she offered me a consult to psychiatry. Here we had found a clue to help in our treatment, an independent civilian lab had gone in debt testing our blood and yet the VA was going to ignore the clues. I really was upset a week later when I found out the Director of the Lab at the VA hospital Denver was the EDITOR for the journal that published the study. That was in 2000 now in 2006 the VA funds a study into hypercoagulation. Now I ask you why not just start testing in the clinical area and treat! Why not read the current work on Chronic fatigue that is looking at HPA axis abnormalities and start testing every gulf war veteran at that facility re blood work on adrenal , pituitary, thyroid, and hormones. Test and treat! The values on abnormal lab work that would be found in gulf war veterans could then be shared with the researchers. Why is research being treated separate and distinct from clinical testing and care? These two areas should be interlinked so clinicians feed in the data that researchers need and researchers when they find a treatment by small clinical trials can readily and quickly share their findings with clinicians and large scale treatment trials would be integrated more quickly in the clinical area. I offer my observations that this would be cheaper and more effective to enhancing the clinical diagnosis and care of gulf war veterans. Much of the research could be done at a savings by integrating the sampling and testing by using clinical abilities and facilities (and cost) that are present and available at VA hospitals. We would get answers much more rapidly. This is but one example of our continuous saga of gulf war veterans illness being ignored, mishandled, and not addressed in an effective manner!
The veterans that have developed symptoms of ALS or MS often have to be told to go outside the VA to get tested to find out if they have that diagnosis. The first veteran I knew with Gulf War illness that developed into ALS was Colonel Don Kline a wing commander of the Air Force who served in the gulf. I met him in 95 while organizing the Unity Conference for Gulf War Veterans in Dallas, I convinced he and his wife to attend the meeting. He was already in a wheelchair with respiratory assistance. He died shortly after that. He had prior to developing the symptoms, luckily had left the military and was hired by Delta and Delta took care of his medical needs. The next one I met was Major Mike Donnelly AF F16 pilot…Top Gun Bred!….and soon after I met Captain Randy Hebert USMC(who had gone through the breech into Iraq), I took each of them to Representative Shays Government Reform Committee to testify. Mike Donnelly’s family took on the cause and advocated for answers for the gulf war veterans with ALS, they sent their son all over the world for medical consults and in there pursuits I believe the number of gulf war veterans we found with ALS was 60 and that is when the VA started quietly caring for that group but without a law to cover them as being presumptions or service connected. I have found in my travels and in my communications with veterans in person, over the phone and internet others who had suffered and died without proper assistance from the VA. Major Mike Donnelly died two years ago and I am not sure of Major Hebert’s status. This same situation is repeating itself with gulf war veterans with MS. I believe we now have an estimated 500 cases of Gulf War veterans with MS.
We have asked repeatedly that the VA provide data on all known diagnosed illnesses that are being experienced by gulf war veterans to include all diagnoses including on the top of the list all neurological autoimmune type diagnoses, cancers of all types, kidney diseases, thyroid diseases, liver diseases, respiratory diseases, the whole picture of all organ diseases. We need a semiannual account of the numbers that are showing up in the diagnosed illness category. This is possible through each VA hospital and thru central VA Health Affairs. We are asking that this data be mandated to be collected and updated at least semiannually and available for all on the VA website. Only in this way can practitioners, patients and researchers be aware of the health problems that are developing and then act proactively to screen other gulf war veterans that they see. In this way the gulf war veterans have a chance at early diagnosis and life saving care and treatment. Again we have gotten no ACTION on this item. Independently I was given data on the cancers that had been diagnosed in Gulf War Veterans from 1991-1995, that was data directly from within the VA system. I have copies of the actual data collection sheets. I have presented this data to the VA RAC GWI and to many members of the House and Senate. We also have an earlier listing that was obtained by Congressman Upton. As a nurse I was astonished at the numbers and types of cancers. I even consulted by phone to an Oncologist specialist in Texas that consults with the military hospitals and shared the data with him and he was also very concerned and frankly astonished. Early on I had reports of veterans with multiple cancers in single individuals having been diagnosed and one of these individuals even went to the Mt Sinai Hospital in New York for treatment on her own, sadly I feel she has died without any help from the VA because contact after she went for help ended. These are just a few of the snapshot pictures of the situation that still persists in the VA as far as clinical diagnosis, care, and treatment.
We need to have a law that offers the Service Connection to ALS, MS, Brain Cancer, and any other disease that is found to be above the expect rate of occurrence in the general population. These need to be added to our presumptive list by law not by arbitrary action of the VA that can change and does not get publicly covered. Consideration must be given to giving the veteran the true benefit of the doubt when you are exposed to radiation, chemicals (pesticides and nerve agents, jet fuel and other service related exposures), biologicals (including vaccines), endemic diseases in the area of operations. By having the data base public to all we do the right thing by shining truth on the subject. WE served our country proudly and the debates must end. This country dishonors its servicemen and women to do no less and it sure doesn’t show “Support the troops” to speak the words and not carry through in a timely manner. And doing battle with the VA which writes the contracts to IOM that is truly not independent is a deception to the troops, the families, and to this country’s sworn duty to care for its troops and veterans. The rat’s maze of circles of different government entities of denial must be stopped and the broken system put aside!
The gulf war veterans are also reporting problems with vision and dental problems but unless they are 100% they are not seen and assessment and data on that part of the picture is ignored. They are left to fend on their own and the total picture of our rapidly declining multi system failure is not seen. Too many young gulf war veterans have ended up with full dental extractions and dentures with no exploring for the cause or connecting problems. This ties in with oxidative stress theory.
Jim Binns and the VA RAC GWI have written a letter months ago to the Secretary of the VA recommending other advisory committees in the area of clinical care and benefits to be formed for Gulf War Veterans from Operation Desert Storm…..NO ACTION still after 16 years. Will you consider making that into a law as our RAC GWI was brought about.
In regards to Research we need answers- diagnostic biomarkers and treatments now! But do not research us into the GRAVE. Integrate the Research and the clinical testing now so that more veterans can get answers and possibly some treatment to help them stop the health decline. WE have all advocated for a targeted response in research to Diagnostics, biomarkers, and treatment. WE have asked for defense appropriations and defense authorization to be at the level it was prior to 911 for the Operation Gulf War Veterans from 1990-91 and it is like we are now the forgotten ones. The MS society has asked for 15 million. The Gulf War illness Advocates have asked for 30 million this money will finally be directed and focused in the Right direction thanks to the VA RAC GWI. Our money from 1991-2006 was misspent on stress/PTSD/ psychologist coordinated research. That time has passed. WE got 5 million for Fy06 funding and those reviews were just completed by the CDMRP committees of which I was proud to serve as a Scientific merit reviewer. In FY07 we got 0 dollars. It was past due to involve the suffering veterans into the review process as oversight directly so we support the CDMRP program.
So much to inform you of in a short time and I have only hit the highlights and a few examples. I thank the Committee for having this hearing it is long overdue and we hope that it stimulates not only more hearings and a response to our funding needs but also to real action that fixes the broken system we enter in 1990-91.
Thank you and I would be overjoyed to address any questions you may have.