Witness Testimony of Dr. Lea Steele, Research Professor of Biomedical Studies & Director, Veterans Health Research Program, Baylor University
Thank you for inviting my testimony today. My name is Dr. Lea Steele. I’m an epidemiologist and have been involved in research on the health of 1991 Gulf War veterans since 1998, when I directed a Gulf War research program sponsored by the State of Kansas. Since that time, I’ve also served on a number of federal committees charged with planning, reviewing, and advising government agencies on Gulf War research. This includes appointment to the Congressionally-mandated Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC), and the privilege of serving as the Committee’s Scientific Director from 2003 – 2008. I am currently Research Professor of Biomedical Studies at Baylor University, where I direct a multifaceted research program on the health of Gulf War veterans, in collaboration with scientists across the United States.
I’ve been asked today to provide information on the effectiveness of federal agencies in addressing health issues that affect veterans of the 1990-1991 Gulf War. The most prominent and widespread health problem from that war, as you know, is the condition commonly known as Gulf War illness. There are also other health issues of concern, but due to time constraints, my comments today will focus on this signature health problem. We use the term Gulf War illness to refer to the serious, often disabling symptom complex associated with military service in the 1990-1991 Gulf War. I want to be clear: by Gulf War illness, we mean a characteristic profile of symptoms—persistent memory, cognitive, and other neurological problems, widespread pain, disabling fatigue, digestive abnormalities, respiratory difficulties—concurrent symptoms that are not explained by established medical or psychiatric diagnoses.
Now, 22 years after the war, this pattern of chronic symptoms has been well documented in 1991 veterans from across the U.S. and other Coalition countries. We also know, from consistent research findings, that Gulf War illness is not a stress-induced or psychiatric disorder. Rates of stress and trauma-induced disorders like PTSD were much lower in Gulf War veterans than in other wars, and studies consistently find no association between war trauma or serving in combat, and rates of Gulf War illness. But studies do identify links between Gulf War illness and a number of hazardous exposures encountered by military personnel in theater. I should point out that today, March 13, 2013, is 22 years, almost to the day, since U.S. ground troops were exposed to low levels of chemical nerve agents following demolitions at a massive Iraqi munitions depot near Khamisiyah, Iraq, in the weeks after the February 28 cease fire. The Pentagon estimates that about 100,000 U.S. troops located downwind were potentially exposed to low levels of nerve agents—sarin and cyclosarin gas—as a result.
Nerve agents are just one of a number of Gulf War-related toxicants identified as potential causes or contributors to the Gulf War illness problem. Regardless of its cause, however, there is no disagreement among scientists who have studied this issue that Gulf War illness is a real and serious problem for the many thousands of affected veterans. How many? Studies indicate between one fourth and one third of the nearly 700,000 veterans who served in the 1991 Gulf War developed Gulf War illness. Studies also show that few veterans have recovered, or even substantially improved, in the 22 years since the war.
In recent years, the federal government has made important progress in improving our understanding of Gulf War illness. However, there remain serious problems on a number of fronts at VA—including providing adequate healthcare for Gulf War veterans, and sponsoring the type of research needed to tangibly improve veterans’ health.
I regret to say that, in some sectors within VA, there appears to have been backward movement, with actions that seem intended to ignore the science and minimize the fact that there is a serious medical condition resulting from military service in the 1991 Gulf War. This is a throwback to early speculation from the 1990s that there was no problem, or that veterans just had random, disconnected symptoms—symptoms that invariably develop after any military deployment and are likely stress-induced. Such opinions were more common in the 1990s, when there was limited research in this area. But they are inexplicable today, in 2013, in the face of consistent scientific evidence to the contrary. Such portrayals are especially troubling when they come from sectors within the federal agency tasked with serving veterans, and when they negatively affect government policies, healthcare, and research.
This is an incredibly important time for Gulf War illness research. Scientific advances in the last decade have provided important insights into Gulf War illness—how many people are affected, which factors are most implicated as contributing to this problem, and the biological processes that drive veterans’ symptoms. Multiple research groups have now identified a range of neurological differences in veterans with Gulf War illness—differences in brain structures, brain function, and autonomic regulation. Studies have also identified specific immune, endocrine, and hematological differences in veterans with Gulf War illness. At the same time, results are beginning to come in from treatment studies that show significant benefits for veterans with Gulf War illness, with more treatment research in the pipeline, and more results expected in the near term. After so many years of waiting, there is finally some hope for Gulf War veterans—hope that they will have answers that are long overdue and hope that treatments will be found that can meaningfully improve their health and their lives. Those of us most involved in this research believe, based on recent progress, that these successes are possible, and within sight.
What is not acceptable, at this stage, is federal research that is poorly informed, based on notions developed in the early years after the Gulf War, rather than on the scientific evidence now available. Fundamentally, we have a situation wherein two federal agencies sponsor very different scientific research programs, both ostensibly to address health issues affecting Gulf War veterans. One program, the Department of Defense’s Gulf War Illness Research Program (GWIRP) is managed by DOD’s Office of Congressionally Directed Medical Research Programs (CDMRP), and has made great strides in a short time period, with about $34 million in funding provided over just 5 years between FY2006 and FY2011 (the most recent year for which full information is available). When this program was developed in 2006, it began by defining a mission, by establishing priorities, and by enlisting the input and guidance of experts in the field and veteran stakeholders. This mission-oriented approach has yielded impressive progress, and the proof is in the results. The highest priority research for Gulf War illness are studies to identify effective treatments. Of the 50 separate projects approved for CDMRP funding between 2006 and 2011, 18 are treatment-related projects—11 clinical studies to assess treatments for Gulf War illness, and additional studies to evaluate treatments in animal models of Gulf War illness.
In contrast to DOD’s mission-oriented approach, the Department of Veterans Affairs has not historically established a research vision or scientific plan, or managed a coordinated program to achieve targeted priorities for Gulf War veterans. Although long advised by a Congressionally-mandated independent panel of experts in Gulf War research (the RAC committee on which I serve), research programs and studies at VA often run counter to the advice of scientific experts. The proof, again, is in the results. VA has reported spending over $120 million for “Gulf War research” over the 10 years from 2002-2011. This includes a total of just 5 human and animal projects related to treatment for Gulf War illness—two focused on stress reduction. Overall, the many millions of research dollars identified by VA as supporting “Gulf War” research yielded a very limited pay-off for ill Gulf War veterans.
What happened? Although the devil is often in the details, there are two overarching themes.
VA has been slow to clearly and accurately acknowledge the Gulf War illness problem. VA continues to provide mixed signals and vague or inaccurate representations concerning the reality and nature of Gulf War Illness. This condition, initially called Gulf War Syndrome by the media, is now most commonly identified as “Gulf War illness”—by scientists, by the Department of Defense, and by veterans. The one exception is VA, where this illness is referred to in different ways in different places, often in vague terms, and suggesting that veterans have no specific or identifiable symptom complex resulting from the 1991 Gulf War.
This “generic” representation of the Gulf War illness problem, as a constellation of disparate symptoms that overlap considerably with psychiatric disorders, and are commonly found in all populations, provided the basis for the recent Institute of Medicine (IOM) report on treatments, commissioned by VA in response to a Congressional directive. As detailed elsewhere, VA’s charge to IOM differed from that directed by Congress. The resulting report usefully points out shortcomings in the health care provided to ill veterans. But the report also repeats and amplifies VA’s mischaracterization of the 1991 Gulf War illness problem. Regrettably, VA’s charge did not direct the IOM panel to consider the biological mechanisms of Gulf War illness that could be amenable to treatment. Nor did the IOM identify methods that experienced physicians have found to be beneficial for treating this condition. The report, then, not only failed to address the charge directed by Congress, it missed the opportunity to provide new and informed insights about treatments that might be brought to bear for veterans with Gulf War illness.
There are widespread examples, large and small, of VA “minimizing” the Gulf War illness problem. It is unthinkable, for example, that VA’s current national study of Gulf War veterans, conducted in 2013, does not assess Gulf War illness symptoms. This is the largest study of 1991 Gulf War veterans conducted in the U.S., targeting 30,000 veterans. It includes scores of questions in such areas as psychological stress, substance abuse, and alternative medicine. But it does not include the basic symptom data needed to define Gulf War illness, by any case definition. This is a wasteful and inexcusable missed opportunity at best, and something akin to scientific malpractice at worst.
VA’s failure to establish an effective and strategic scientific research program to address priority Gulf War illness research questions. This has been an ongoing and serious problem detailed by the RAC in major reports and annual evaluations. Among many possible examples, I will emphasize here two overarching problems: the lack of focus, expertise, and planning in VA’s Gulf War research program, and the lack of accountability in how funding is allocated for this research.
Scientific ineffectiveness of VA’s Gulf War research program. Despite strong urging from scientific experts, VA did not begin the process of developing a strategic plan for Gulf War research until 20 years after the war. A comprehensive process was finally undertaken in 2011 to develop such a plan, with nongovernment scientific experts and stakeholders from multiple institutions and offices within VA—nine groups of at least 6 members each—working over many months to craft and review the plan. The draft comprehensive plan was largely approved, by two expert committees, early in 2012. In the next several months, however, the plan was extensively changed by VA internal editors, who removed references to Gulf War illness and substantially altered the program developed to effectively define, study, and treat this problem. The federal Research Advisory Committee (RAC) on which I serve had long urged VA to develop a plan of this type, and some of its members assisted in developing the draft plan. But the Committee was extremely concerned about the extensive changes made internally by VA, which they believed to take the science and the teeth out of the plan. Last June, the RAC withdrew its support of the plan, and reported to the Secretary that, under current circumstances, the Committee had no confidence in VA’s ability to develop an effective Gulf War research program.
Misallocated and misrepresented Gulf War research funding. The Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC) was charged by Congress to review and advise on all federal research programs that address Gulf War health issues. Our committee staff’s review of Gulf War research expenditures each year invariably finds that a large proportion of VA-identified “Gulf War” research studies would not be considered “Gulf War” research by any other government or nongovernment program. Many of the studies identified as Gulf War research at VA have limited relevance, or no relevance at all, to the health of 1991 Gulf War veterans. This is not a trivial problem. In many years, 60 percent or more of the millions of dollars identified for “Gulf War” research is actually used for other types of research with no link, in any important respect, to Gulf War service. There are far too many examples to identify here. But they include notable high-dollar research items, like the $10 million dollars used to fund a post mortem brain tissue bank identified as the “Gulf War Biorepository Trust.” In reality, this program is a brain bank for veterans with ALS, or Lou Gehrig’s disease. Most VA ALS patients are older veterans who served in earlier eras. As of 2010, only 1 of the 60 brains in this brain bank came from a Gulf War veteran, despite the use of $10 million in Gulf War funding for this program that, despite its name, neither targets nor studies Gulf War veterans in any important way. In contrast to the millions in “Gulf War” funding used for non-Gulf War projects, VA has sponsored relatively few studies in high priority Gulf War research areas—for example, studies to advance improved diagnosis and treatments for Gulf War illness.
The proof, as always, is in the results. Together, VA’s poor representation of the Gulf War illness problem, and failure to apply current scientific knowledge to develop a focused, state-of-the-art research program, have led to relatively little in the way of tangible benefits for ill Gulf War veterans. From my perspective as a scientist who has worked in this area for many years, it is time to get this right. And certainly the many thousands of veterans who have suffered with Gulf War illness for more than 20 years would say it is long past time.