Nancy J. Norton, President and Founder of IFFGD presented the following testimony regarding Fiscal Year 2006 Funding for Functional Gastrointestinal and Motility Disorders Research before the House Appropriations Subcommittee on Labor, Health & Human Services, Education and Related Agencies in 2005:
Chairman Regula and members of the Subcommittee, thank you for the opportunity to present this written statement regarding the importance of functional gastrointestinal and motility research.
IFFGD has been serving the digestive disease community for fourteen years. We work to broaden the understanding about functional gastrointestinal and motility disorders in adults and children.
IFFGD speaks about and raises awareness on disorders and diseases that many people are uncomfortable and embarrassed to talk about. The prevalence of fecal incontinence and irritable bowel syndrome or IBS, as well as a host of other gastrointestinal disorders affecting both adults and children, is underestimated in the United States. These conditions are truly hidden in our society. Not only are they misunderstood, but also the burden of illness and human toll has not been fully recognized.
Since its establishment, the IFFGD has been dedicated to increasing awareness of functional gastrointestinal and motility disorders, among the public, health professionals, and researchers.
During April 7-10 2005, IFFGD hosted the Sixth International Symposium on Functional Gastrointestinal Disorders, which was a great success in bringing scientists, researchers, and clinicians from across the world together to discuss the current science and opportunities on IBSand other functional gastrointestinal and motility disorders. Also, in November of 2002, we hosted a conference on fecal and urinary incontinence, the proceedings of which were published in Gastroenterology, the official journal of the American Gastroenterological Association (AGA). The IFFGD has also been working with the National Institute of Child Health and Human Development (NICHD) and the NIDDK to begin planning for a State of the Science Conference on Fecal and Urinary Incontinence. While maintaining a high level of public education efforts, the IFFGD has also become recognized for our professional symposia. We consistently bring together a unique group of international multidisciplinary investigators to communicate new knowledge in the field of gastroenterology.
The majority of the diseases and disorders we address have no cure. We have yet to understand the pathophysiology of the underlying conditions. Patients face a life of learning to manage chronic illness that is accompanied by pain and an unrelenting myriad of gastrointestinal symptoms. The costs associated with these diseases are enormous; estimates range from between $25-$30 billion annually. The human toll is not only on the individual but also on the family. Economic costs spill over into the workplace. In essence, these diseases reflect lost potential for the individual and society. The IFFGD is a resource and provides hope for hundreds of thousands of people as they try to regain as normal a life as possible.
At least 6.5 million Americans suffer from fecal incontinence. Incontinence is neither part of the aging process nor is it something that affects only the elderly. Incontinence crosses all age groups from children to older adults, but is more common among women and in the elderly of both sexes. Often it is a symptom associated with various neurological diseases and many cancer treatments. Yet, as a society, we rarely hear or talk about the bowel disorders associated with multiple sclerosis, diabetes, colon cancer, uterine cancer, and a host of other diseases.
Damage to the anal sphincter muscles; damage to the nerves of the anal sphincter muscles or the rectum; loss of storage capacity in the rectum; diarrhea; or pelvic floor dysfunction can cause fecal incontinence. People who have fecal incontinence may feel ashamed, embarrassed, or humiliated. Some don’t want to leave the house out of fear they might have an accident in public. Most try to hide the problem as long as possible. They withdraw from friends and family, and often limit work or education efforts. Incontinence in the elderly burdens families and is a major reason for nursing home admissions, an already huge social and economic burden in our increasingly aging population.
In November of 2002, the IFFGD sponsored a consensus conference — “Advancing the Treatment of Fecal and Urinary Incontinence Through Research: Trial Design, Outcome Measures, and Research Priorities.” Among other outcomes, the conference resulted in six key research recommendations:
More comprehensive identification of quality of life issues associated with fecal incontinence and improved assessment and communication of treatment outcomes related to quality of life.
Standardization of scales to measure incontinence severity and quality of life.
Assessment of the utility of diagnostic tests for affecting management strategies and treatment outcomes.
Development of new drug compounds offering new treatment approaches to fecal incontinence.
Development and testing of strategies for primary prevention of fecal incontinence associated with childbirth.
Further understanding of the process of stigmatization as it applies to the experience of individuals with fecal incontinence.
Within the next year, the IFFGD will be working with the NICHD and the NIDDK on a State of the Science Conference on Fecal and Urinary Incontinence. The goal of this conference will be to assess the state of the science and outline future priorities for research on both fecal and urinary incontinence; including, the prevalence and incidence of fecal and urinary incontinence, risk factors and potential prevention, pathophysiology, economic and quality of life impact, current tools available to measure symptom severity and burden, and the effectiveness of both short and long term treatment.
Irritable Bowel Syndrome (IBS)
IBS strikes people from all walks of life affecting between 25 to 45 million Americans and results in significant human suffering and disability. This chronic disease is characterized by a group of symptoms, which include abdominal pain or discomfort associated with a change in bowel pattern, such as loose or more frequent bowel movements, diarrhea, and/or constipation. Although the cause of IBS is unknown, we do know that this disease needs a multidisciplinary approach in research and treatment.
Similar to fecal incontinence and depending on severity, IBS can be emotionally and physically debilitating. Because of persistent bowel irregularity, individuals who suffer from this disorder may distance themselves from social events, work, and even may fear leaving their home.
In the House and Senate Fiscal Year 2004 and 2005 Labor, Health and Human Services, and Education Appropriations bills, Congress recommended that NIDDK develop an IBS strategic plan. The development of a strategic plan on IBS would greatly increase the institute’s progress toward the needed research on this functional gastrointestinal disorder, as well as serve to advance our understanding of this disease, determine improved treatment options for IBS sufferers, and assist in recruiting new investigators to conduct IBS research.
Gastroesophageal Reflux Disease (GERD)
Gastroesophageal reflux disease, or GERD, is a common disorder affecting both adults and children, which results from the back-flow of acidic stomach contents into the esophagus. GERD is often accompanied by persistent symptoms, such as chronic heartburn and regurgitation of acid. But sometimes there are no apparent symptoms, and the presence of GERD is revealed when complications become evident. One uncommon complication is Barrett’s esophagus, a potentially pre-cancerous condition associated with esophageal cancer. Symptoms of GERD vary from person to person. The majority of people with GERD have mild symptoms, with no visible evidence of tissue damage and little risk of developing complications. There are several treatment options available for individuals suffering from GERD.
Gastroesophageal reflux (GER) affects as many as one third of all full term infants born in America each year. GER results from an immature upper gastrointestinal motor development. The prevalence of GER is increased in premature infants. Many infants require medical therapy in order for their symptoms to be controlled. Up to 25% of older children and adolescents will have GER or GERD due to lower esophageal sphincter dysfunction. In this population, the natural history of GER is similar to that of adult patients, in whom GER tends to be persistent and may require long-term treatment.
Approximately 13,000 new cases of esophageal cancer are diagnosed every year in this country. Although the causes of this cancer are unknown, it is thought that this cancer may be more prevalent in individuals who develop Barrett’s esophagus. Diagnosis usually occurs when the disease is in an advanced stage, early screening tools are currently unavailable.
Childhood Defecation Disorders and Diseases
Chronic Intestinal Pseudo-Obstruction (CIP) – About 200 new cases of CIP are diagnosed in American Children each year. Often life threatening, the future for children severely affected with CIP is brightened by the evolving promise of cure with intestinal or multi-organ transplantation.
Hirschsprung’s disease – A serious childhood and sometimes life-threatening condition that can cause constipation, occurs once in every 5,000 American children born each year. Approximately 20% of children with HD will continue to have complications following surgery. These complications include infection and/or fecal incontinence.
Functional constipation – Millions of children (1 in every 10) each year will be diagnosed with functional constipation. In fact, it is the chief complaint of 3% of pediatric outpatient visits and 10- 25% of pediatric gastroenterology visits.
Functional Gastrointestinal and Motility Disorders and the National Institutes of Health
The International Foundation for Functional Gastrointestinal Disorders recommends an increase of 6% for NIH overall, and a 6% increase for NIDDK. However, we request that this increase for NIH does not come at the expense of other Public Health Service agencies.
We urge the Subcommittee to provide the necessary funding for the expansion of the NIDDK’s research program on functional gastrointestinal disorders (FGID) and motility disorders. This increased funding will allow for the growth of new research, a strategic plan on IBS, and increased public and professional awareness of FGID and motility disorders.
A primary tenant of IFFGD’s mission is to ensure that clinical advancements concerning GI disorders result in improvements in the quality of life of those affected. By working together, this goal will be realized and the suffering and pain millions of people face daily will end.