IFFGD presented the following testimony regarding Fiscal Year 2012 appropriations for the Department of Defense (DOD) Peer Reviewed Medical Research Program to the U.S. Senate Appropriations Committee, Subcommittee On Defense on June 22, 2011:
Thank you for the opportunity to testify on behalf of the International Foundation for Functional Gastrointestinal Disorders (IFFGD) and the community of people affected by functional gastrointestinal and motility disorders. I am here today to speak on the issue of functional gastrointestinal disorders (FGIDs) that impact military personnel as a result of their service, and to request that the Subcommittee include "functional GI disorders" on the list of conditions deemed eligible for study through the Department of Defense (DOD) Peer-Reviewed Medical Research Program (PRMRP) within FY 2012 Defense Appropriations legislation.
Established in 1991, IFFGD is a patient-driven nonprofit organization dedicated to assisting affected individuals, and providing education and awareness for patients, healthcare providers, and the public at large. Our mission is to inform and assist people affected by these painful and debilitating digestive conditions, about which little is understood and few treatment options exist. In addition, IFFGD works to support or encourage critical research on these conditions, in order to provide patients with better treatment options, and to eventually find cures.
FGIDs strike persons of all races, ages, and genders. These conditions involve acute or chronic pain and improper functioning of the nerves, muscles, and related mechanisms of the digestive tract. The conditions are chronic and often debilitating. Medical understanding of these conditions is limited. As a result there are no cures, and available treatment options are extremely limited and focused on symptom management. While functional GI disorders are present in all demographics of the general population, they disproportionately impact military personnel, particularly service men and women who have been deployed. The onset of a functional GI disorder can be triggered by severe stress and infections of the digestive tract. Deployed military personnel face an elevated chance of experiencing these risk factors and developing a functional GI disorder as a result of their service. The challenges of deployment and combat situations can be incredibly stressful, and digestive tract infections are common in areas outside the U.S. where living conditions may be less than ideal.
FGIDs are a large family of over two dozen distinct digestive conditions. These diseases and disorders range in severity from mild to disabling. Irritable bowel syndrome (IBS) and functional dyspepsia are prominent members of this family of conditions.
Functional GI disorders can be emotionally and physically debilitating. Due to recurrent or persistent pain and other symptom unpredictability, individuals who suffer from these disorders may distance themselves from social events, work, and may stop leaving their home altogether. Many suffer in silence as stigma surrounding the nature of symptoms such as nausea, vomiting, or bowel habits may act as a barrier to seeking treatment. Functional GI Disorders tend to be chronic, confining affected individuals to a lifetime of pain and uncertainty and leading to tremendous costs in terms of healthcare expenditures and quality of life.
In 2007, IFFGD, in cooperation with the University of North Carolina Center for Functional GI and Motility Disorders, conducted a survey of IBS patients to better understand their real world experience and the burden of disease. Two-thirds of the nearly 2,000 respondents suffered moderate to severe symptoms. Their average age was 40 and at the time they took the survey, their symptoms had been present for an average of 15 years. Respondents were asked how much risk they would assume to take a medication providing total relief from IBS symptoms, but with serious adverse effects. Two questions were posed considering some risk of death and chance of serious permanent side effects: "Given your current medical condition, assume you could take a medication where you could live the rest of your life (to age 100) with total relief from your IBS symptoms. Assume that by taking this new medication there is SOME RISK OF DEATH. How much risk would you take to have total relief from your IBS symptoms?" And "given your current medical condition, let’s assume you could take a medication where you could live the rest of your life (to age 100) with total relief from your IBS symptoms. Assume that by taking this new medication there is a chance of SERIOUS AND PERMANENT SIDE EFFECTS with symptoms of severe headache, fainting spells, joint pains or heart irregularities, which impaired your ability to carry on your usual activities. How much risk would you take to have total relief from your IBS symptoms?"
Trading risk for relief, if offered a medication that would give them total relief of IBS symptoms: 8% of all respondents would accept a 1/100 chance of death and 6% of all respondents would accept a 1/100 chance of serious and disabling side effects. These figures are considerably higher among the group with severe IBS, indicating they will accept even higher risk levels: 15% would accept a 1 in 100 chance of death and 11% would accept a 1 in 100 chance of serious and disabling side effects.
There are very few treatment options for painful and disabling functional GI disorders like IBS and dyspepsia. The aforementioned numbers speak to the dire need for bolstered research focused on innovative treatment development. Presently, patients are forced to manage their own symptoms to the best of their ability and adapt their lifestyle to accommodate their illness.
The connection between deployment and the onset of a functional GI disorder has been studied in recent years and a substantial body of medical literature has emerged identifying a relationship. In fact, a 2010 Institute of Medicine (IOM) report, entitled Gulf War and Health: Health Effects of Serving in the Gulf War, concluded that there is sufficient evidence for an association between deployment to the Gulf War and gastrointestinal symptoms consistent with functional GI disorders such as irritable bowel syndrome and functional dyspepsia. According to this report, there have been a large number of functional GI disorders cases among Gulf War veterans and their symptoms have continued to persist in the years since the conflict. The report ultimately provides compelling evidence linking exposure to enteric pathogens during deployment and the development of functional GI disorders. The IOM has recommended that further research be conducted in this area.
In response to the IOM report and similar findings, the Veterans Administration is issuing a “presumption of service connection” for veterans from the Gulf War afflicted by functional GI disorders. This action assumes that a deployed service member who is suffering with a functional GI disorder contracted the disorder as a result of their service for the purpose of filing for disability and other benefits. Unfortunately, given the current lack of research resources and available treatment options, many veterans disabled by a chronic and debilitating functional GI disorder have little chance of returning to a productive lifestyle.
The DOD PRMRP conducts critical research into medical conditions that impact veterans and active duty military personnel. However, to compete for the research resources offered through the PRMRP a condition must first be listed as eligible for study. Considering the strong connection between functional GI disorders and military service, as well as the VA’s recent action and an overall need to improve the treatment options for individuals suffering with these conditions, please consider adding “functional GI disorders” to the DOD PRMRP’s eligible conditions list for FY 2012.
Thank you again for the opportunity to address the Subcommittee today on this important issue.