Major Denise Nichols, RN, MSN, USAFR (Ret.)
Thank you for accepting my for the record testimony in relationship to the hearing on July 27, 2010 on the Gulf War Veterans.
I come to you with issues, that are probably not being addressed in this hearing but are significant and need to be identified and assessed. This will be addressed as a listing to at least have on the record of other outstanding needs identified by gulf war veterans and gulf war veteran advocates in the community.
We wish to recognize the VA recent efforts to address the Gulf War Illness, Research, and Benefits. But we want to be on record that more Gulf War Veterans from outside the VA system and all veteran organization have equal abilities to interact from the beginning and throughout the process. WE wonder why the Task Force had to be limited to internal VA and not open meetings. We are so willing to interact and help to make the issues more clear and address so many issues that have not been covered or discussed.
We thank them for the efforts to have a task force, to have a draft and to have a chance to submitted written comments. But this does not go far enough. Meetings need to be open and available to listen in on if we can not be there and a way to interact as the process occurs all the way through. It would be a step forward to use all the internet and telecommunications that are now available in every department/agency in the government. Our President campaigned on full transparency and in response the doors need to be opened wide. We also encourage an open phone line to be available to have our comments heard because our gulf war veterans with significant neurological cognitive problems have trouble in writing their comments but are still able to verbalize! It could be like the crisis lines now being used by the VA but lines devoted to input of suggestions and problems that don’t just affect one veteran.
We feel that the VA hospitals could be used i.e. live telephone audio visual hook up in their auditoriums and that way feedback could occur with gulf war veteran patients, family members, veteran groups, health care professionals, doctors, researchers, benefits personnel, and other concerned personnel. This would truly be dynamic process and result in getting a wealth of ideas and ways to improve..
The final changes to that draft should have also been open before the final product for input for that report and for future areas that need to be addressed. It is through opening the process completely that we will get the full range of suggestions for changes.
Personally during that time my family faced a major health problem and I did not offer as much in feedback as I could have at the window of opportunity. But this happens to others too, so why just have one window of opportunity? Obviously the draft was changed several times after the initial feedback time period.
Again I encourage VA to open the door to more veterans and organizations that would want a chance to serve yet again and have a more active dynamic communication.
Now for problems that still need to be addressed.
- One area of concern is that veterans and doctors do not have a list of tests that need to be done as a minimum for gulf war illness. This list of tests needs to be a main item on the front page of the VA website. Suggestions for additions and or changes need to be addressed.
- The gulf war veterans must also see any new guidelines that are being provided to the medical staff concerning gulf war illness. WE suggest that to be available on the internet the draft of changes and the final product. Many veterans have been health care providers and could input suggestion for changes.
- A couple of areas that we have had many veterans discussing is the ability to be seen and evaluated re dental problems, vision, and hearing problems. WE at least need to have those problems assessed and then a team of the appropriate specialist need to review these assessments, to write reports, articles for professional journals to evaluate if there is unidentified needs that relate to the whole health of the veterans of gulf war even if they are not rated!
- We also are hearing from veterans that have had significant spinal problems re disc degeneration and we wonder if data is being compiled on this significant problem. And how is that information being shared not only within the VA but outside the VA and to the gulf war veterans. We also get reports of significant skin problems/rashes/ infections, other body system problems, and diagnosed illnesses. We feel that sharing of this information points out several health care problems and that adequate complete communication among health care providers and the veterans concerned are not being shared and compiled. A system needs to be developed within and outside the VA on problems that are being seen by all the health care providers within the VA and civilian health care professionals that also see gulf war veterans. Communications to the gulf war veterans and their family members is also absent.
- There are no support groups at each VA local that veterans, their families, health care professionals and social workers can attend monthly. There is a severe need for this type of function. An example would be to compare it to cancer patients or heart patients and civilian CFS support groups. The family members and the veterans have identified this as a real need. They feel alone and need this type of support!
- There is a problem that has surfaced concerning the deaths that have occurred within the gulf war veteran community. The problem is originally and still is that it has been easier to get rated for PTSD while significant health problems CFS, fibromyalgia, all the other symptoms were not rated and or denied.
- One of the problems is that veterans that had claims and had been rated through years of difficulty (Gulf War illness) have died. One example is that the individual veteran was in process of trying to have other physical problems rated, he was rated for PTSD but he died 3 months short of ten year period and therefore his widow and dependent children are denied DIC. To leave dependent children without DIC benefits is simply cold hearted! Another veteran had been rated PTSD but had the neurocognitive problems and had an accident on a tractor that killed him and his dependents are being left without DIC. The gulf war veterans who are dying are not being honored and their dependents are left out in the cold. Again visible wounds get all the attention while more invisible illnesses are being ignored, brushed off, not rated and then the survivors suffer with no DIC. These are just two of the most recent families/survivors of gulf war veterans that I personally was made aware of in just the last couple of weeks!
The survivors and dependents of deceased gulf war veterans that suffered from illnesses after the war get no focus or attention as compared to those with visible wounds.
- There needs to be a triage system set up for claims! Those that are at risk of dying i.e. more complex multiple symptoms, cancers, diagnostic problems re cardiac, blood disorders, renal and liver problems need a fast tracking for benefits as well as those homeless veterans or veterans that are in dire financial status. WE have triage in medical care, why don’t we have a nation wide triage for benefits? A coding system could be developed in which the veteran and /or family member can self identify, the medical care provider can rate, the social worker can rate, or other professionals including their service officer if they have one- when the claim needs a special triaging.
- Aid and Attendance or Nursing Assistance care available thru Social Workers at the VA needs to be updated for the Gulf War Veterans that need assistance at home. Many spouses have not been working when they could have if they had someone to be their for their veteran spouse that are having neurocognitive problems, balance problems, mobility problems. Many veterans are without spouses and need assistance at home. One veteran is having to rely on their children to help them. It is interesting that programs have been developed for the severely visual injured of OIF/OEF but these regulations have not been revamped for the invisible wounds of environmental exposures.
This needs to be done ASAP and a widespread communication process developed to the health care professionals, social workers, and the veteran patients and families to get them the help they have needed for many years. One veteran that has severe multiple problems and the overwhelming fatigue (which is not an adequate term for us that suffer with this) told me that it took all they had to make it to grocery store and that it may take a week for them to get the groceries just into their house! One veteran identified the problem re the income factor on Aid and Assistance needs to be adjusted for the younger gulf war veterans where they may have VA and SS benefits and a spouse that is still able to work gainfully but can't in order to care for the ill gulf war veteran spouse.
- The system including health care and benefits need to get rid of the antagonistic situation that has existed for 20 years at least particularly for those with environmental illnesses/Gulf War illness. The gulf war veterans need to have a faster track to handle benefit problems. The veterans and their families are suffering on a large scale and it has lasted 20 years without adequate corrective actions.
- It is not a problem just involving benefits personnel that need training on rating gulf war illness but also health care providers! I was a professional nurse and was not aware of the problems with undiagnosed illnesses, ME, CFS, multi symptom complex diseases until I experienced my illness. Doctors are the same and that affects the diagnoses, care, and treatment of the Gulf War Veterans. The VA could be the role model and network with medical universities that train physicians to make a change that would benefit veterans and civilian sufferers of CFS, ME, Fibromyalgia.
- The time is critical now in the past year with the information of a potential XMRV retrovirus that was discovered in research and published almost a year ago. The research to replicate that discovery has to be fast tracked and gulf war veterans with gulf war illness need to be included in those research studies.
- The areas of research that the veterans of the gulf war deployed and nondeployed feel need further research involves DU (inhale and ingested), vaccines (not limited to anthrax but the whole list of vaccines used in the gulf war period), sand/silica in the deserts of Saudi, Iraq, and now OEF veterans, and contamination from returning equipment. WE do want the biomarkers, diagnostic tests and treatment research but we as a group feel the other factors have not had adequate research for the potential of health problems whether singularly or as synergistic effects. We are invigorated with the VA RAC GWI effort and the recent NAS IOM report that finally are showing progress in finding some answers and finally getting away from stress theories.
- We want more research based on physiological and no more stress psychological research. We want researchers and health care professionals to have a means to interact more and share on a frequent basis!
- There is a need for a bulletin board or blog that is interactive between researchers and physicians. One funded VA researcher has been trying to interact with more of the health professionals seeing gulf war veterans and other specialized physicians at his own VA and he told me it is a catch as catch can method. They need the internet system and educational cross sharing. There needs to be real time and archival taping and audiovisual interactive sharing of the VA RAC GWI committee meetings to each VA Hospital. This way clinicians, researchers, and the gulf war veterans can get the information and education needed as a starting point. Only thru the ability to communicate will the needs of the gulf war veterans be met quicker.
- We cannot just have researchers separate from the clinicians and the patients, the veterans! WE need the concept of units set up in at least one VA in each state and/or regionally that addresses research and clinical practice in an interactive setting for research to clinical practice to occur more rapidly for gulf war veterans or environmentally exposed veterans. WE have polytrauma , spinal cord, MS, etc specialty care centers in the VA why not environmentally exposed specialty care centers. And the WRIIS that are on the east coast and west coast do not meet the needs. They were set up as second opinion and just have not met the needs of the gulf war veterans on the whole.
- There needs to be not only a task force at the central VA headquarters but a Task Force involving each VA hospital or at least one in each state and then a Regional Task force. We need a robust system at each level and that is absent.
- The Environmental Health Headquarters at the central VA needs to be evaluated. The staffing needs to include an office and veteran staffing labeled Gulf War illness/syndrome/ill defined conditions. It needs to have a complaint area, a resource center, medical research, a benefits staff specific for Gulf War illnesses, and a health care professional and physician to deal with health care issues.
- The recently named Gulf War Steering Committee charter, mission, duties, and members has not even been featured on the VA website!
- Each of these areas within the VA should open their doors to input and assistance from the gulf war veteran advocate community at large and not just to VSOs or to gulf war veteran organizations that have been outspoken. There are many talented gulf war veterans that seek to be involved in helping improve the situation and solve problems. We have many gulf war veterans that were health care professionals that want to help, just open the door!
- The gulf war veteran community was outraged that the funding and work at the UTSW medical school, a VA collaborative research effort was stopped. This was a program we all agreed should be continued. The researcher’s effort to find the best testing for gulf war veterans that could be passed on to the VA at large was a huge setback and we encourage the situation to be resolved and the research and work to be funded. The recent announcement of what was funded is a slap in our face. The research project was truly ready to make major gains in being able to study other groups of gulf war veterans besides the Navy Seabees. In this means the replication of what was found in one cohort could have been expanded. This in itself is a loss that can not be explained satisfactorily. Work out the problems identified or else the whole gulf war veterans affected population suffers as an outcome of VA OIG actions. What is the greater need?
- We need the VA to also accept help from physicians on the civilian side that have worked on the issues of CFS/ME/Fibromyalgia not just for health care but in accepting their input for rating of benefits. The gulf war veterans need their expertise and ability to educate VA physicians.
- For Congress and the Senate: The process of hearings on gulf war illness needs to be not only for the House and or Senate but jointly. Joint sessions i.e. hearings would be the ideal approach to keeping both Houses fully informed and engaged.
- We complement you on having this hearing but we would like to offer a suggestion that one hearing a year is not sufficient to address the Gulf War illness that affects such a huge percent of the troops that served. We also strongly suggest that individual gulf war veterans and gulf war veterans’ advocates be included in all these hearings not just the VSO’s, but the veteran advocates that you are not having testify, formally in this way, if done including the other advocates you will get a more complete listing of problem areas that have yet to be discussed and examined. We also think that the information on hearings and witnesses has almost become like top secret and feel the open communication to all veterans and veterans advocates begs for improvement.
- I would be remised if I didn’t also address the nondeployed gulf war veterans that have experienced ill defined illnesses the same as deployed, they are truly being lost in the process.
Thank you, for your consideration of the most recent 25 items that gulf war veterans and gulf war veteran advocates have been discussing. We hope you will include this as submitted testimony for the record.