Gulf War Exposures.
GULF WAR EXPOSURES
SUBCOMMITTEE ON HEALTH
COMMITTEE ON VETERANS' AFFAIRS
U.S. HOUSE OF REPRESENTATIVES
ONE HUNDRED TENTH CONGRESS
JULY 26, 2007
SERIAL No. 110-38
Printed for the use of the Committee on Veterans' Affairs
U.S. GOVERNMENT PRINTING OFFICE
For sale by the Superintendent of Documents, U.S. Government Printing Office
CORRINE BROWN, Florida
STEVE BUYER, Indiana, Ranking
Malcom A. Shorter, Staff Director
SUBCOMMITTEE ON HEALTH
Pursuant to clause 2(e)(4) of Rule XI of the Rules of the House, public hearing records of the Committee on Veterans' Affairs are also published in electronic form. The printed hearing record remains the official version. Because electronic submissions are used to prepare both printed and electronic versions of the hearing record, the process of converting between various electronic formats may introduce unintentional errors or omissions. Such occurrences are inherent in the current publication process and should diminish as the process is further refined.
C O N T E N T S
July 26, 2007
Gulf War Exposures
U.S. Department of Veterans Affairs:
James Binns, Chairman, Research Advisory Committee on Gulf War Veterans’ Illnesses
Prepared statement of Mr. Binns
Lea Steele, Ph.D., Scientific Director, Research Advisory Committee on Gulf War Veterans’ Illnesses, and Associate Professor, Kansas State University
Prepared statement of Dr. Steele
Lawrence Deyton, MSPH, M.D., Chief Public Health and Environmental Hazards Officer, Veterans Health Administration
Prepared statement of Dr. Deyton
Mikolajcik, Brigadier General Thomas R., USAF (Ret.), Mt. Pleasant, SC
Prepared statement of Brigadier General Mikolajcik
Nass, Meryl, M.D., Internist and Hospitalist, Mount Desert Island Hospital, Bar Harbor, ME
Prepared statement of Dr. Nass
National Vietnam and Gulf War Veterans Coalition, Denise Nichols, MSN, Vice Chairman
Prepared statement of Ms. Nichols
Veterans of Modern Warfare, Anthony Hardie, Legislative Chair and National Treasurer
Prepared statement of Mr. Hardie
SUBMISSIONS FOR THE RECORD
American Legion, Shannon L. Middleton, Deputy Director, Veterans Affairs and Rehabilitation Commission, statement
Brown, Hon. Corrine, a Representative in Congress from the State of Florida, statement
Fahey, Dan, San Francisco, CA, statement
Miller, Hon. Jeff, a Representative in Congress from the State of Florida, statement
Stearns, Hon. Cliff, a Representative in Congress from the State of Florida, statement
MATERIAL SUBMITTED FOR THE RECORD
Post Hearing Questions and Responses for the Record:
Hon. Michael Michaud, Chairman, Subcommittee on Health, Committee on Veterans' Affairs, to Anthony Hardie, National Treasurer, Veterans of Modern Warfare, letter dated August 2, 2007 [NO RESPONSE WAS RECEIVED FROM MR. HARDIE.]
Hon. Michael Michaud, Chairman, Subcommittee on Health, Committee on Veterans' Affairs, to Denise Nichols, MSN, Vice Chairman, National Vietnam and Gulf War Veterans Coalition, letter dated August 2, 2007
Hon. Michael Michaud, Chairman, Subcommittee on Health, Committee on Veterans' Affairs, to Meryl Nass, M.D., Internist and Hospitalist, Mount Desert Island Hospital, Bar Harbor, ME, letter dated August 2, 2007
Hon. Michael Michaud, Chairman, Subcommittee on Health, Committee on Veterans' Affairs, to James Binn, Chairman, Research Advisory Committee on Gulf War Veterans' Illnesses, U.S. Department of Veterans Affairs, letter dated August 2, 2007
Hon. Michael Michaud, Chairman, Subcommittee on Health, Committee on Veterans' Affairs, to Lea Steele, Ph.D., Scientific Director, Research Advisory Committee on Gulf War Veterans' Illnesses, U.S. Department of Veterans Affairs, and Associate Professor, Kansas State University, letter dated August 2, 2007 [NO RESPONSE WAS RECEIVED FROM MR. DR. STEELE.]
Hon. Michael Michaud, Chairman, Subcommittee on Health, Committee on Veterans' Affairs, to Lawrence Deyton, MSPH, M.D. , Chief Public Health and Environmental Hazards Officer
Veterans Health Administration, U.S. Department of Veterans Affairs, letter dated August 2, 2007
GULF WAR EXPOSURES
Thursday, July 26, 2007
U. S. House of Representatives,
Subcommittee on Health,
Committee on Veterans' Affairs,
The Subcommittee met, pursuant to notice, at 10:00 a.m., in Room 334, Cannon House Office Building, Hon. Phil Hare presiding.
Present: Representatives Hare, Moran, and Brown.
Mr. HARE. Good morning. The Subcommittee on Health will come to order. I would like to thank everyone for coming today. Regrettably, Mr. Michaud, the Subcommittee Chairman, had an emergency and isn’t able to be here today. I’m Congressman Phil Hare from Illinois. This is, I think, my first opportunity to Chair a Subcommittee hearing, so I hope you will bear with me.
During this hearing today, the Subcommittee will examine Gulf War exposures of veterans. The incidences of Amyotrophic Lateral Sclerosis (ALS) among Gulf War veterans and most importantly where is the U.S. Department of Veterans Affairs (VA) in conducting continuing research on Gulf War I exposures and what they are finding out about the current exposures in Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF) veterans. Many of the veterans who served in the Gulf War were exposed to a variety of potentially toxic substances during their deployments.
According to the Research Advisory Committee on the Gulf War veterans, more than 16 years after the end of Operation Desert Storm, a substantial proportion of veterans continue to experience chronic and often debilitating conditions characterized by persistent headaches, cognitive problems, somatic pain, fatigue, gastrointestinal difficulty, respiratory conditions, and skin abnormalities.
The Department of Defense (DoD) and the Department of Veterans Affairs together has spent $260 million on Gulf War illness research. While there have been numerous studies and much research conducted on Gulf War illnesses there are still many unanswered questions. Another aspect of Gulf War I Service is ALS. ALS is a progressive and nearly always fatal disease that affects a person’s nervous system. According to the Institute of Medicine (IOM), Amyotrophic Lateral Sclerosis in veterans review of the scientific literature, there is limited and suggestive evidence of an association between military service and developing ALS.
Additionally, in a study sponsored by the Department of Veterans Affairs in 2003, researchers identified the incidences of ALS in veterans deployed to the Gulf as twice as high as the incidences of diseases among those who did not go to the Gulf.
I look forward to hearing from our panelists on these very important issues. I would now like to yield to my friend, Mr. Brown of South Carolina, for any opening statements that he may have. Mr. Brown?
[The statement of Congressman Hare appears in the Appendix.]
Mr. BROWN OF SOUTH CAROLINA. Mr. Chairman, if I might, I would like to yield to Mr. Moran for an opening statement. Then I have an introduction I would like to give.
Mr. HARE. Without objection.
Mr. MORAN. Mr. Chairman, thank you very much. I only want to commend this opportunity for us to once again examine the consequences of various exposures and conditions that our military men and women have encountered in service to their country, particularly as it relates to the war in the Gulf.
Over the last ten years this Subcommittee, this—actually the full Committee has held ten hearings on the topic of Gulf War Syndrome. In the past, I chaired the Subcommittee on Health and this was a significant topic of our agenda and continue to believe that it is important for us to make certain that we learn everything possible from our previous exposure to conditions in the Gulf and to make sure that back in 2002 when we were entering into Afghanistan, we were trying to make certain that our military had learned lessons from that previous Gulf War experience.
Again, I think the consequences of our deployments are significant and real and need to be fully addressed by our Committee, but particularly by VA. So these are important hearings on useful topics, and I am glad to see the seriousness with which we are approaching the Gulf War Syndrome today.
Thank you, Mr. Chairman. Thank you, Mr. Brown. I yield back to you.
Mr. BROWN OF SOUTH CAROLINA. Thank you very much. And it is absolutely a great honor today to be able to be a part of this hearing. And I thank the Ranking Member, Mr. Miller, and the Chairman, Mr. Michaud for conducting this hearing. And I am glad to have you, Mr. Hare, as leading this charge this morning.
Within my State of South Carolina and the Nation as a whole who have served the country during the Gulf War as a member of this distinguished Subcommittee, it is my duty, it is our duty to provide our Nation’s veterans with access to the best healthcare possible. It is our duty perhaps even a moral responsibility for us here today on this Subcommittee to help those brave veterans who have helped defend our great Nation.
Today I have the distinct and dignified honor of introducing someone who answered the call of duty by helping his country when it needed him the most. And today he comes before us and asks for our help. His name is Brigadier General Thomas Mikolajcik.
For many years my personal friend and great American hero, General Mikolajcik, or General Mik as he is known by his closest friends, has been a leader in the Charleston Community. First as commander of the C-17 Wing Base at the Charleston Air Force base and then as an active contributor to the Charleston Chamber of Commerce Military Relations Activities following his retirement in 1996.
But General Mik's dedication to the Charleston Community would be noteworthy in any case, it is even more impressive when one realized that his focus on the needs of this community comes at a time when he is suffering from a debilitating and deadly disease.
In 2005, General Mik announced that he had been diagnosed with ALS. While many individuals would have immediately withdrawn under the pressure and impact of ALS, the General used it as an opportunity, and with much resolve and endurance doubled his efforts and dedication. In addition to continuing his commitment to the Charleston Community, the General has devoted a great deal of attention to raising awareness within the community of ALS and improving the quality of life for ALS patients and their families. Thanks to his efforts, a new ALS Association Chapter was formed in South Carolina and the only ALS clinic in the State was founded at Charleston Medical University of South Carolina.
General Mik is truly an inspiration to many throughout the Charleston Community, continually thinking of others despite the great challenges he has faced. Numerous studies have shown that individuals who have served in the military have a higher propensity towards being diagnosed with ALS. While the Department of Veterans Affairs has identified ALS as a Gulf War I related disease, cases abound that show the spread of this disease among veterans is much broader.
Indeed, a recent study showed the veterans of all conflicts have a 60 percent higher chance of being diagnosed with ALS than the general population. It has been nearly 70 years since Lou Gehrig made his famous speech and retired from baseball after contracting this horrific disease. And it has been nearly 17 years since the end of Gulf—first Gulf War, and yet little has been done about this disease and even less is known about it’s causes.
The work of General Mik has also brought to my attention the growing number of veterans contracting ALS outside of service during Gulf War I. My office is aware of a number of cases in my district from veterans who have developed ALS where the VA has denied their claims because their service was not within the presumptive time frame of August the 2, 1990, through July 31, 1991.
We don’t have a good handle on how many non-Gulf War I veterans have contracted ALS, what military-related risk factors exist and what we can do to decrease the chances of ALS among our veterans and military servicemen and women. This issue is of special concern as we continue to have troops deployed in OEF and OIF.
The story of General Mik serves as a testament to the need for leadership at the Federal level towards developing the comprehensive ALS research program and declared VA/DoD policy ensuring that all veterans with service-connected ALS receive the attention they deserve regardless of whether or not they served during Gulf War I. We need an agency to step up to the plate and lead Federal research into the cause of ALS and how we can better improve it’s treatment.
Most importantly, we need to begin these efforts now before more veterans, including General Mik, succumb to ALS. And I thank you, Mr. Chairman. And I also would like to identify his wife, Carmen, who is with him and also his son, John, and Jamie Haywood, who is founder of the ALS Therapy Development Institution. And I thank you all very much for coming.
[The statement of Congressman Brown appears in the Appendix.]
Mr. HARE. Thank you, Mr. Brown and welcome General. Our remaining panelists are Anthony Hardie who is a Gulf War veteran. Anthony, let me first of all thank you for coming and thank you for your service to this country. And Denise Nichols who is Vice Chairman of the National Vietnam and Gulf War Veterans Coalition.
So, General, we will start with you and we welcome your testimony. Good morning.
STATEMENTS OF BRIGADIER GENERAL THOMAS R. MIKOLAJCIK, USAF (RET.), MT. PLEASANT, SC (VETERAN); ANTHONY HARDIE, LEGISLATIVE CHAIR AND NATIONAL TREASURER, VETERANS OF MODERN WARFARE; AND DENISE NICHOLS, MSN, VICE CHAIRMAN, NATIONAL VIETNAM AND GULF WAR VETERANS COALITION
Brigadier General MIKOLAJCIK. Thank you, Congressman Hare, Congressman Brown, Congressman Moran. I really appreciate this opportunity to testify.
My name is Tom Mikolajcik. I am neither an M.D. nor a Ph.D. I am a PALS. A patient with ALS. I was diagnosed in October 2003. I was given a death sentence and told to get a second opinion while given a prescription for Rilutek which has very limited value. Only by the grace of God am I here to speak with you today and I have vowed to keep speaking until I no longer can.
Military veterans like me face a higher risk of this relentless killer. Fifty percent die in one to three years. Another 20 percent die in five years. Less than ten percent live to ten years.
It was learned in 2001 that Gulf War veterans have two times the incident rate of the general population. We discovered in 2005 that veterans going back to War World II have a one point six times higher incident rate then the general population for developing ALS. In other words, any of you in this room that are veterans have a 60 percent higher chance of contacting ALS than non-veterans.
Four short years ago, the VA opened a voluntary ALS registry. It registered thus far 1,993 veterans suffering from ALS. I am sad to say and it is unacceptable to me that only 969 are still alive today. That is less than 50 percent. I am one of the blessed ones that are still alive.
And ladies and gentlemen that also means somewhere between one and 15 and one out of 30 ALS patients are military veterans. The government must step up to the plate on this issue.
We are currently exposing hundreds of thousands more servicemembers to the elevated risk of this disease. There will be young men, women and families celebrating a return from Iraq and Afghanistan alive, who have no idea that they may soon be facing a certain death from ALS.
We will have to answer those families when they ask what the government has been doing to prepare for this onslaught. For this reason, the government is compelled to assume a leadership role in this issue. If these soldiers were dying in the field rather than quietly at home as a consequence of their service, we would leave no stone unturned. We would use the best of existing resources and programs to make sure they had whatever they needed to survive to ensure no man or women is left behind.
Some say that a lot of ALS research has taken place. My response echoes the famous words of President Lyndon Johnson: “Research is good, results are better.” It has been nearly 70 years since Lou Gehrig made his farewell speech and we have basically nothing. One questionable drug in 70 years? What his doctors knew then, what my doctors know today, and what therapies we have are not much different.
How many thousands of private farewell speeches must take place before we realize we are not doing everything we can? Will I have to give mine before an appropriate, large-scale, comprehensive plan to tackle ALS is carried out? ALS is more complicated than a Rubik’s cube which is many sided with multiple connections, and various colors like this one. One must consider causes, therapies, biomarkers, genomics, existing drugs, patient needs, palliative care, as well as all avenues of research.
Who is in charge of ALS research today? I have found no one in charge!
[Large rubik's cube placed on witness table.]
Brigadier General MIKOLAJCIK. What is the strategy for solving this ALS Rubik’s cube? I found no strategic plan! Who oversees and is accountable for existing medical research activities for ALS? No one! So, yes, there may be many ongoing efforts into ALS but potential success is thwarted by little cooperation, coordination, and sharing of information. From my viewpoint and understanding, there is no one entity in charge or accountable.
These blocks or boxes represent the ongoing ALS research.
[Various sized wooden blocks spilled on witness table.]
Brigadier General MIKOLAJCIK. All are separate, none are connected and there is no communication among them. We have underfunded research across the country, each working in their own little box. This approach has been unsuccessful thus far. We need to open the doors of labs and encourage collaboration. There should be no more deaths due to protection of ALS related intellectual property and potential profit. Some of us are in a hurry.
Therefore, it is the government’s absolute responsibility to direct research into a full understanding of ALS. In other words, my hope would be that we not just think outside the box, but totally redraw it; enlarge it to fit the enormity of this horrific disease. Many people come to hearings with problems and needs. I come before you with a solution also. I fully understand bureaucracy’s aversion to change particularly within an industry as large as medicine and with the number of government agencies already dabbling and yes, I mean dabbling in ALS research.
Let’s look back to 1961 when our Nation made a commitment to put a man on the moon within a decade. One government agency was put in charge and it was supported by other agencies as well as private industry and individuals. My proposal is very similar. It worked then, it should also work now.
This is what I propose: Establish a congressionally directed ALS Task Force with specific milestones and a time line. Within 30 days establish a task force made up of government agencies, ALS researchers, private ALS institutes, patients, and a facilitating team not related to ALS or the medical industry. Within 60 days the task force should recommend which government agency will be in charge and the supporting roles of the other agencies. In other words, an executive agency for the government. Within 90 days develop a strategic plan which outlines all avenues of research to be included. It must be comprehensive, forward looking, and all inclusive. The strategic plan should also outline agency and researchers accountability. An adequate and fair funding stream must accompany this strategic plan.
The decade of the 1990s was the decade of the brain. However, we invested too little time and too few researchers on research to understand diseases of the brain, especially such a devastating disease as ALS. Over 30 years ago our country launched a war on cancer. Because of that effort we now have many treatments of this dreaded disease, even some cures. It is time to launch a war on ALS and other neurodegenerative diseases so that we can have effective treatments and cures.
We designated and designed the Apollo Program to put a man on the moon. For ALS we could call it the HOPE Program, Helping Other People Endure. From this day forward this new direction can be a model program that has one government agency designated by Congress which has control and oversight of a lofty objective—solving this ALS Rubik’s Cube. There are many private models of leadership to draw upon. Innovations have sprung up driven by those connected to the disease including several which I am involved with. The ALS Therapy Development Institute; the ALS Association of America; the Multiple Dystrophy Association; and the Medical University of South Carolina’s ALS Clinic.
These efforts will succeed with public leadership that amplifies their private support into an integrated whole. In the future this model could be duplicated as a test bed for research on other diseases. Because of the similarities among neurodegenerative and neuro-inflammatory diseases, advances in ALS research will likely be relevant to Parkinson’s, Alzheimer’s, Huntington’s and others.
We must prepare to offer our soldiers, sailors, airmen, and marines an opportunity to fight this disease. We cannot simply fight this battle defensively hoping to limit exposure to environmental risk. We must fight it offensively as well with an appropriate medical arsenal. Let’s do what it takes to finish off this enemy once and for all. Congress can make the commitment, take the initiative, legislate a new way forward and hold agencies accountable. We have the intelligence, the resources, and the competencies. It is time to apply leadership to the ALS Rubik’s Cube to move the campaign in a new and uncharted direction.
Let us have the answer ready for our veterans and the general population suffering from this disease. Let us show them they were worth a real investment and a real plan. Let us redraw and enlarge the box to allow for their futures.
Finally, and probably the easiest task I will ask today, is to immediately establish and fund a National ALS Registry to ensure comprehensive patient information, tissue, genes, DNA, etcetera are available for investigation. Such a registry will facilitate, even stimulate additional research and research collaboration.
This will provide, “HOPE” for future treatment and increased understanding of this disease. But what about veterans like me who may not benefit from these future discoveries and treatments? We owe our veterans treatment now, however limited. Over five years ago, the Secretary of Veterans Affairs extended service-connected benefits to Gulf War veterans like me based on the research study results that they had. Since then ,new research has shown an increased incidence of ALS among all veterans, 60 percent higher than the general population.
The Secretary for Veterans’ Affairs should act now with the same decisiveness and the same concern for veterans by extending veterans benefits to all veterans suffering from this terrible disease. I have attached a copy of the letter I gave to and discussed with Secretary Nicholson on 23 March of this year in Charleston.
Thank you for your attention, for allowing me to speak past my time and for giving me this opportunity to represent veterans. God Bless our veterans! And God Bless the United States of America!
[The statement of Brigadier General Mikolajcik appears in the Appendix.]
Mr. HARE. Thank you, General, that was an incredible and compelling testimony. I thank you for taking the time out to come this morning. You are an incredibly courageous person and we will work very hard.
Our next panelist is Mr. Hardie and Mr. Hardie, welcome. And we look forward to your testimony.
Mr. HARDIE. Thank you, Mr. Chairman. Mr. Chairman and distinguished Members, thank you for holding today’s hearing on Gulf War exposures and highlighting and enduring national significance of these issues. It is truly an honor and a privilege to be here today. And I hope to help voice some of the concerns of the many who are not here to share in that this privilege.
On January 17, 1991 much of America watched Operation Desert Storm unfold on their evening news decisively ending the many long months of the mass troops watchful waiting under Operation Desert Shield. Six weeks and the war was over, but for many of the nearly 697,000 troops who served our overarching Gulf War experience had only just begun.
For those who may not be familiar, Gulf War troops were exposed to a host of toxic exposures often in combination including multiple low-level exposures to chemical warfare agents including from bombed munitions factories and detonated munitions bunkers. Experimental drugs mandated without informed consent like Pyridostigmine Bromide pills intended to help survive nerve agent exposure; inhalation of incredibly high levels of micro-fine particulate matter from the Kuwaiti oil well fire plumes; experimental vaccines like Anthrax, botulinum, and others; inhaled and ingested depleted uranium particulate matter; smoke from the daily burning of trash and feces; multiple pesticides; petroleum products and byproducts.
For some of us who developed lasting health effects from this veritable toxic soup of hazardous exposures, it came while still in the Gulf. For others it did not come until some time after returning home.
Hearing this list of exposures, most people would find it of no surprise that so many thousands of Gulf War veterans became ill, or that so many remain ill and injured today. And it should be no surprise that so many have developed diagnosable serious conditions like ALS, Multiple Sclerosis (MS), and others. What is stunning is that 16 years later, there are still few tangible results that might improve the health of those who became ill and remain ill. And we still have little information of any value to provide the Gulf War veterans or the healthcare providers that might help to improve Gulf War veterans health.
Years were squandered disputing whether Gulf War veterans were really ill, studying stress, reporting that what was wrong with Gulf War veterans was the same as after every war. An incredible amount of effort was put into disproving the claims of countless veterans testifying before Congress of a chemical and other exposures. Some of that negative effort appears to continue even today. It is stunning that after nearly two decades we still have little information to provide the Gulf War veterans who remain ill from their service. It is true that VA does still have an open door for Gulf War veterans to be seen at VA medical facilities, however, being seen is not the same as being treated.
In terms of informing veterans, the VA’s Office of Public Health and Environmental Hazards website also contains little information that might be of use to ill Gulf War veterans and to health providers. Much of the information provided is outdated. In July of 2006, the VA’s Gulf War review included an article entitled, “Straight From the Source: VA’s Environmental Agents Service is Serious About Communicating With Veterans.” That issue, more than a year ago, was the last published.
For Gulf War veterans like me whose “Kuwaiti Cough” has never left after having coughed up thick black sputum while still in the Gulf and for several weeks after returning home, the report related to oil well fire smoke and petroleum from this website which seemed to be of particular interest. Perhaps it’s lack of usable content, indicative of the lack of attention being paid to these issues, is at least in part related to the fact that it stated principal author was not a leading scientist, but instead a community college communications or journalism student summer intern.
I have heard from countless other Gulf War veterans that they like many before them have stopped going to the VA or have simply given up and have done their best to adapt to the substantial lifestyle changes required by their disabilities, which may or may not be compensated for these disabling conditions incurred in service. Gulf War veterans have had unique and special challenges and in May, a VA report show that only one in four undiagnosed illness claims for Gulf War veterans has been approved.
On a more positive note, I was encouraged during last week’s meeting of the Research Advisory Committee, on which I serve, from Dr. Robert Haley and his team describing their research goals of identifying diagnostic criteria for ill Gulf War veterans. Success in achieving these goals should finally help to pave the way for affective treatments. And I remain encouraged by current efforts in the U.S. Senate to provide funding for Gulf War health research within DoD’s congressionally directed Medical Research Program focused on treatments that may aid ill Gulf War veterans.
The five-point statement of goals that came from Gulf War veterans more than a decade ago still holds true today. Gulf War veterans deserve then and deserve now an insurance, an exhaustive investigation has been fulfilled to identify all possible Gulf War exposures.
Second, that appropriate scientific research is promptly completed to connect known or potential Gulf War exposures with health outcomes. Third, that medical treatment is bases on that scientific research. Fourth, that compensation is provided to those veterans left disabled by their military service if the health conditions cannot be reversed. And finally, that every effort is made to ensure that never again what happened to the Gulf War veterans be allowed to happen again. For the thousands of living ill Gulf War veterans, it is time to make good on our Nation’s enduring promise of caring for those who have borne the battle and their widows and their orphans.
Thank you Mr. Chairman and Members of the Subcommittee.
[The statement of Mr. Hardie appears in the Appendix.]
Mr. HARE. Thank you, Mr. Hardie. Ms. Nichols?
Ms. NICHOLS. Good morning, Congressman of the VA House Health Subcommittee and to all staffers and attendees. It is indeed an honor to testify at this hearing for all Operation Desert Storm veterans group which reflects only one part of the earlier portion of the Iraq war.
It has been since November 1993 that we have been having hearings on the care and needs of Gulf War veterans. I am a retired air force flight nurse that served on the border of Saudi Arabia and Iraq to care for those wounded in that war. I have continued that duty as a sworn obligation. I am just one of the 697,000 that were deployed in 1990 and 1991. My profession, life, and family have been directly affected, as has been so many others.
The symptoms and life changes I have experienced are not unique. The war changed our health status and our abilities to perform our duties in our chosen life roles through no fault of our own. There are hundreds of thousands of human-case examples both that were deployed and those that received vaccines and exposures from secondary sources. In 1994, a total gathering of ill veterans and DoD officials and VA officials and university professionals at Bethesda attending the conference held on the Health Consequences of the Persian Gulf War that we Gulf War veterans were different. We were a force of highly trained, educated, and physically fit men and women who served our country in wartime. And even though we were now damaged due to that time in a foreign country, we would not give up and we would find answers and help.
Since then, we have battled for compensation, the exposing of the full truth and nothing but the truth. We have battled for the best care and treatment. Sadly, our war has been facing our own government at times, but as Major Abare an earlier ALS veteran that testified said, “So long ago we did swear to defend against all enemies both foreign and domestic.” Sadly this battle seems to be on the domestic end of having a lack of faith and sworn duty for by our government.
The Gulf War veterans community has deteriorated health, rising levels. We have lost too many of our own, but we still stand pushing, prodding, encouraging to get to the truth and to life saving that has been denied for too long. We were met with denials, delays, and resistance, but yet if you had listened and acted many of our lives could have been saved and restored. We ask for the best diagnostic procedures and treatment, we were denied that by lack of truth, at times from our own DoD and government officials.
Some, but not all the truth has been exposed. We felt that more would have been exposed to back up our acknowledgment of the multiple exposures that taken alone or in combination would have a definite affect on our health. We have pushed for the medical examination and diagnostic treatment that would expose the truth held within each of our own bodies. We pushed for the care and treatment we earned by putting our lives on the line to serve our government. Sadly, we have been delayed by forces within our own government. We would win a major fire fight in that battle to face a counter attack or a blocking move. We still wonder, what is this? Is it financial? Is it a policy? Is it protecting some secret? But that answer and the battle our government waged to find the single cause of exposure while we lay wounded still continues.
Those of us with undying spirit and faith would push the wounded each time to raise up and fight for yourselves, your fellow soldier, veteran, your family, and the future soldiers and veterans to reach the goal. Within my longer supplied testimony is a recap of just a few of the insights or snapshots along the road we have traveled in regards to the VA. I have supplied yet another point paper, action plan, or if you want to call it an OP order outlined to fix the broken parts, to move forward the goal of appropriate medical diagnoses and care.
The system was not broken by us, but the result of a multitude of errors complicated by a government or it’s employees that denied us the access to the best medical care for whatever reason. It has cost us lives of your fellow Americans, your soldiers, your veterans, your family members. In one three-month period of grievous data reporting from the VA, we lost 1,000 of us to whatever causes. The full count is definitely more. This is morally and ethically wrong. In our path we have met many civilian experts that have volunteered to help us out of that morally and ethically wrong situation. Sadly, many of their careers have been negatively affected through their joining the battle. We have officers and individuals that have tried to help from the shadows, well it is time for the all out assault to fix this and have results.
The veterans have led this battle and we are not done. We hope that each of our elected reps will listen to us, join us to fix these problems, remove the road blocks, and move for true action. Let us move forward together to the best diagnosis care, treatment, and compensation before we lose more lives. The veterans have identified something that is critically important and that could affect every citizen in this country through the response to critical hazardous substances, weapons of mass destruction, and environmental exposures. Examples are the World Trade Center, the Anthrax exposures, radiation damage and potential terrorist issues in our own country. The advances made through us could help save lives in the future throughout the U.S. and other countries.
We need the funding and the commitment from all. Will you do your part to correct the errors mismanagement, mis-guidance, obstructions of the past? Will you commitment the funds and the fast tracking of corrective legislation? Will you be the active leaders to investigate, deliberate, and be part of the solution? But please, if you are, you must move quickly and decisively in order to save lives. Help us to streamline the process to get the pin pointed research that is needed. Help us get the right diagnostic care and effective treatment. Do not study, investigate, or deny each of us to the grave. We need the blim research to actual diagnosis and care in a cost and time sensitive manner. We can gain from the clinical data that can be obtained for a cost effective means within each VA hospital and merge it with research efforts to find better diagnostic markers that can be quickly implemented in the clinical area. We need to have our VA care organized so that research for treatment by way of treatment trials can be moved into the clinical area in an expedited manner at true cost effectiveness.
We need universities to cut their cost of research business so that we can use funds provided in the most effective way to implementation. Universities should share their commitments to the troops and veterans and not make a profit off the endeavor. We can do this in weapon development with tiger teams approaches and filled instruments of war in record time. Can we do the same to save our troops and veterans? Will you have faith in us that veterans and those civilians as doctors, researchers, and members of the Veterans Affairs Research Advisory Committee that have committed to help. Will you put the full weight of this government and it’s resources to this task? Our remaining lives and qualities of our lives depend upon you.
Thank you very much for the honor to appear before you today. I would be delighted to answer any questions you may have.
[The statement of Ms. Nichols appears in the Appendix.]
Mr. HARE. Thank you Ms. Nichols. Thank you very much for your service to this Nation and for all the work that you are doing now.
I just want to say one thing before I ask a couple questions of the panel. General, one of my closest friends was a retired Catholic priest and I can remember to this day he would say, “Phil, we hear about faith, hope, and love, the greatest being love.” But he said, “If you take hope away from people for them getting up every day and to try to do what they can do best.” He said, “While we talk so much about love, always remember that hope is, from my perspective, equally important.”
And I just want you to know that it is my sincere desire that the HOPE Program that you mentioned, I think it is a wonderful thing. And I think we need to look at it and I think we need to work on it, and I think we need to do it now. I don’t think—every hour that goes by is time wasted. And so, I just wanted you to know that your testimony was very compelling and I am just incredibly honored to be Chairing this hearing this morning with such wonderful panelist.
I do want to know, maybe and the whole panel could talk to me, the General talked about a congressionally directed ALS task force and the timelines, and establishing it in a 30 and 60, 90-day time line that you suggested, General. Could you all tell me what, in your opinion, would you suggest would be the top three goals of that task force.
Brigadier General MIKOLAJCIK. I’m sorry. The—
Mr. HARE. The task force that you were proposing.
Brigadier General MIKOLAJCIK. The top three goals of the task force would be, number one, determine what agency in government would take the leadership role. Number two, develop a strategic plan to be followed. Number three, provide adequate funding to support that strategic plan.
Mr. HARE. Mr. Hardie, Ms. Nichols?
Mr. HARDIE. I would certainly concur with those comments. I think that is an excellent action plan.
Mr. HARE. Okay.
Ms. NICHOLS. Very definitely a definite goal timeline to meet.
Mr. HARE. Okay. Mr. Hardie, in your testimony you stated that being seen is not the same as being treated. And I would like, if you could maybe go into it a little bit more regarding that statement. And then you also said that many Gulf War veterans have given up going to the VA. Do you know if they are going elsewhere or they are just not going anywhere at all?
Mr. HARDIE. Thank you, Mr. Chairman. In terms of not being seen is not the same as being treated. VA continues to have an open door and it is always possible to get appointments with general medicine practitioners. In terms of being seen by specialists, if it appears that there is some sort of a condition as well, I think that Gulf War veterans are able to be referred to specialty care as well. But again given the lack of an understanding of the underlying mechanisms causing Gulf War veterans illnesses, my sense is that many treatment providers really don’t know what to do with Gulf War veterans.
I had, for myself, I have had significant immune dysfunction growing over the last several years. I had an absolutely brilliant immunologist tell me, “I am simply not smart enough to know what to do with you. Here are some suggestions for where to go.” And so, I continually—my experience has been being seen by, by the way that was not a VA practitioner. I did seek outside care after having been shuffled around for quite some time.
In terms of Gulf War veterans going whether they are going elsewhere or simply stopping getting care, my sense is that those are some veterans are—some Gulf War veterans are continuing to seek care at the VA, but again and elsewhere but after a time it seems that many of the people that I am in contact—many of the Gulf War veterans that I am in contact with have simply given up on, until there is some new breakthrough, there is no point in going back and being told, “We don’t know what to do with you. We see your symptoms. We can certainly give you limited prescriptions to treat some of the symptoms that you are experiencing. But in terms of what is causing these kinds of things, we don’t know.” And until there is, we simply don’t know.
I would hope that gives a sense of the answer to those questions.
Mr. HARE. Yeah. Just real quickly, because I am running out of time. Mr. Hardie, outreach can be a great tool and sharing it with the veterans from past wars so they are kept informed of any changes or developments that may occur. It has been 16 years since the Gulf War I ended. Just a couple quick questions.
Do you think the outreach efforts of the VA have diminished in these 16 years? If so, how? My second follow-up would be what changes do we need to do to affect that outreach?
That would be for Ms. Nichols, if I could.
Ms. NICHOLS. Okay. On the point paper I have provided this morning for you, I went step by step, there is 23 steps there. But the outreach needs to be very extensive. I think we need to bring in outside experts in the anti-aging area that is a board certified field medicine that can help from the top down.
I think a lot of the things that are covered at the VA Research Advisory Committee meeting, the updates on research, there is excellent material there. I have encouraged to be videotaped, get out there on the web, get out there the physicians in the VA hospital and to the patients, the veterans. I have encouraged that from day one and it hasn’t been done. That is a simple thing that could be put in place to you know further the outreach and education of all involved, not only the patients but the physicians that are to care for us at the VA.
But I think we need some other experts put on contract to come in and do some education also on other things that are available in the civilian world that could help. A lot of it connects with chronic fatigue and there is a lot of breaking research in that area.
Mr. HARE. Thank you, Ms. Nichols. Mr. Brown?
Mr. BROWN OF SOUTH CAROLINA. Thank you, Mr. Chairman and I really thank the other members of the panel for coming too. I know I made my introduction to General Mik, but I am glad to have you all here.
And General Mik, my first question is to you is, how were you diagnosed with ALS and how long did it take for you to be granted your VA benefits?
Brigadier General MIKOLAJCIK. Thank you for asking that question. And there is no one test that tells you, you have ALS. I was having an annual physical and there were fasciculations that the doctor saw on my shoulders. That is uncontrollable muscle movement. He asked me how long have I had those fasciculations? I said, “What is a fasciculation?” He said, “Look in the mirror.” I looked in the mirror, I said, “I have never seen them.” Then I was sent to a neurologist, who did an EMG; did a CAT scan; did other things. And then they said, “You probably have ALS or some other disease.”
So through a process of elimination, it wasn’t Lyme disease, it wasn’t Kennedy’s disease, it wasn’t benign fasciculations, even though they immediately put me on the one drug, Rilutek, which was used for ALS. It is a guessing game until more parts of your body start to lose functionality or your speech. It took me two years before I was granted disability, partial disability by the VA. And it took another six months before I was granted full disability.
There is no one scientific test to identify ALS. That is why the research is so important to find those biomarkers that may identify ALS patients whether it be through DNA or whatever, so that you could start treatment sooner. It is not like other diseases, cancer or whatever that there is a test that tells you, you have it. ALS is not that way. Lou Gehrig gave up his order of batting because he couldn’t hold those two bats in his hands to practice swinging. After 2,130 consecutive games. He was the iron man of baseball. Most ALS patients are very healthy. I was taking an 80 milligram a day of aspirin when I was told I had ALS. Most ALS patients are very athletic. Why? We got to do the research to find out.
Why do Italian soccer players have a higher incident rate than non-soccer players? We don’t know. Why do pilots have a 2.6 times incident rate of ALS compared to non-pilots? We don’t know. And the reason, Mr. Chairman, I talked about leadership is I spent 27 years in the Air Force. There was always a leader. There was always direction. There was always cooperation on whatever you were doing. There is no leadership in ALS. Just like these blocks on the table. These are blocks from when I was a child over 50 years ago. Anybody that had ALS then or that has it now is not much different than those blocks. It is a sad state.
So that is why when you ask me what are the three things, number one, has to be leadership. Number two, you have to have a strategic plan on how you are going to go do things. And by having a plan and by having a leadership, you can also save money in research because you do away with a lot of the duplication that is going on. I don’t know how many organizations have tested Mynocycline for ALS. We have tested on mice; we have tested on patients; we keep on giving grants out to test Mynocycline. Something is wrong in that equation.
Mr. BROWN OF SOUTH CAROLINA. I notice in your remarks you said that one of the easiest tasks would be to establish and fund a National ALS Registry to ensure comprehensive patient information. You mean we don’t have one already?
Brigadier General MIKOLAJCIK. No, there is no national registry. There has been a number of organizations, the ALS Association that have been trying for a number of years. It was voted upon on the House side in one of the conference subcommittee’s and it was passed. There is over 50 percent of the Congressmen in this Congress that have signed as sponsors for the bill. I understand that today the full Congressional Committee is voting on the bill. The Senate, I don’t remember where the progress stands on that. But the ALS registry for veterans is so small, part of it is you got to know there is a registry to sign up for the darn thing. If you are not computer literate, if somebody didn’t tell you, your name is not on that registry.
So the national registry would put many more people into the database. To find out, have you used pesticides? Have done certain things? Have you had certain medications? And it doesn’t cost a lot for that national registry to be formed. So I would encourage this Subcommittee and the Members to support the registry that is being voted upon in this Congress.
Mr. BROWN OF SOUTH CAROLINA. I know my time is expiring, Mr. Chairman. If I might just make one statement. I know that there is, I hope there is some collaboration between the DoD, National Institutes of Health (NIH), and other ALS research funding. I know that in the Defense Bill that the Appropriation Bill coming before us, we requested $4.8 million for an ALS Therapy Development Institute. And this support would support cutting edge first fast track drug discovery and traditional research. We were able to get one and a half million dollars, General. And so we hope this will help. And but that is a shame if we got to make their marks look like, you know, DoD should take this responsibility on their own. But we are pleased to announce that.
Brigadier General MIKOLAJCIK. That sure is. And that is a small amount of money for the task ahead. I visited the ALS Therapy Development Institute a little over a year ago in January. I was visiting my mother in Connecticut. I heard about them. I asked if I could come visit. I wanted to see the mice that were taking the same drugs I was taking. See what they looked liked. What was going on? What is the technology there? And I was overwhelmed by their discipline and their sole focus on ALS. I am a believer in where they are and where they are going as they move forward in that direction.
And there are other laboratories that are doing work. What we don’t have is the drug companies are not putting much money into ALS research. Why? What is the return on investment? Bottom line. What is the return on investment? BioGen a very large drug company in the State of Massachusetts about a year or so ago disbanded their whole ALS research center. That is why the government has a responsibility, because private industry won’t step up unless you give them some money to do that.
Mr. BROWN OF SOUTH CAROLINA. Well, look, I thank you for your testimony. And I will yield back my time, Mr. Chairman.
Brigadier General MIKOLAJCIK. I would like to make one more comment in relation to that.
Mr. HARE. Absolutely.
Brigadier General MIKOLAJCIK. We all know a lot of patients that have Multiple Sclerosis. The incident rate of Multiple Sclerosis and ALS is not that much different. ALS is somewhere between 5,600 to 6,000 a year. For MS the incident rate is somewhere around 8,000, 8,500 a year. Why are there so many MS patients? It is because MS patients live 20, 30 years. We don’t. Our statistics, you know, the doctor told me, “You have one to three years to live. Get another opinion. Take Rilutek. Come back and see me in six months.”
So the numbers are small because there are not many of us and a lot of us can’t speak. Thank you, Mr. Chairman.
Mr. HARE. Thank you, General. Mr. Moran?
Mr. MORAN. I thank you, Mr. Chairman. I want to thank you, General, for speaking. I only have a few questions, but I suppose perhaps more important than questions is that all of your testimony is a reminder of the importance of us providing greater leadership, more emphasis, and support for the efforts that you are outlining. And so, I appreciate the opportunity to be here this morning just to remind me that there is a cause that needs champions in Congress and across the country.
So, if, despite the information that you are conveying to me, perhaps more important you are conveying to me the need to go to work. I appreciate all of you providing me with that challenge, that opportunity, and that—a reminder of my responsibilities.
Is ALS, is it unique in it’s correlation between military service and incidence as compared to any other condition or disease? Is this a very unique circumstance? A very rare correlation?
Brigadier General MIKOLAJCIK. It is a fact. Why? I don’t know. Is it unique for military service?
Mr. MORAN. Is it, compared to any other disease or condition, is—
Brigadier General MIKOLAJCIK. I know of no other disease—
Mr. MORAN. —incidence of ALS and its relationship to military service is it very unique?
Brigadier General MIKOLAJCIK. Yes. I know of no cancer that is associated just with military service or other things.
You know I looked through the Defense Bill and there is about a billion dollars in earmarks for different research within in the DoD Bill. The only disease that I saw that had a direct connection to military service was ALS. The rest of them were not. Prostrate cancer, breast cancer or other types of things. It is unique.
Oh, and the Gulf War Syndrome. I am sorry. And the Gulf War Syndrome, ALS is the only named disease within that terminology.
Mr. MORAN. The Gulf War Syndrome is a broader description o