Nancy J. Norton, President and Founder of IFFGD presented the following testimony regarding Fiscal Year 2005 Funding for Functional Gastrointestinal and Motility Disorders Research to the House Appropriations subcommittee on Labor, Health & Human Services, Education and Related Agencies in 2004:
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 at the National Institutes of Health.
IFFGD, the International Foundation for Functional Gastrointestinal Disorders, has been serving the digestive disease community for thirteen years. We work to broaden the understanding about functional gastrointestinal and motility disorders in adults and children. Through publications, professional symposia, and other means IFFGD addresses issues and raises awareness about disorders and diseases that many people are uncomfortable and embarrassed to talk about.
Bowel conditions are often hidden in our society. Not only are they misunderstood, but the burden of illness and human toll has not been fully recognized. The majority of the diseases and disorders we address have no cure. We have yet to completely understand the pathophysiology of the underlying conditions. Many patients face a life of learning to manage chronic illnesses that are often accompanied by pain and a variety of gastrointestinal symptoms.
The costs associated with these diseases are great; conservative estimates range 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 and every aspect of daily life. In essence these diseases reflect lost potential for the individual and society.
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 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.
Causes of fecal incontinence are many and may include damage to the anal sphincter muscles, nerve damage, loss of storage capacity in the rectum, chronic diarrhea, or pelvic floor dysfunction. People who have fecal incontinence may feel ashamed, embarrassed, or humiliated.
Society is not tolerant of loss of bowel control. Some individuals with incontinence don’t want to leave the house out of fear they might have an episode of incontinence in public. Most try to hide the problem as long as possible and may not reveal it to their own doctor unless asked. Isolation adds to the burden of illness as these individuals withdraw from friends and family, and social support.
In November 2002, IFFGD sponsored, with NIH support, a multidisciplinary consensus conference, “Advancing the Treatment of Fecal and Urinary Incontinence Through Research: Trial Design, Outcome Measures, and Research Priorities.” The proceedings were disseminated in the January 2004 Supplement of Gastroenterology, the journal of the American Gastroenterological Association. [The proceedings may be accessed online at www.aboutincontinence.org.] Among other outcomes, the conference resulted in six key research recommendations to address currently unmet needs:
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.
Irritable Bowel Syndrome (IBS)
IBS affects between 25 and 45 million people of all ages in the United States (an estimated 10 to 15 percent of the population). The disorder affects people of all ages, even children. Approximately 60 to 65 percent of IBS sufferers in the U.S. are reportedly female and 35 to 40 percent are male. This chronic disease is characterized by a group of symptoms, which can include abdominal pain or discomfort associated with a change in bowel pattern, such as loose or frequent bowel movements, and/or hard or infrequent bowel movements. Although the cause of IBS is not understood, it is becoming clear that this disease needs a multidisciplinary approach in research.
Similar to other chronic illnesses and depending on severity, IBS can be emotionally and physically debilitating. Because of persistent, unpredictable, and often painful bowel symptoms, maintaining work or academic schedules becomes challenging. Individuals who suffer from this disorder may distance themselves from social activities and even may fear leaving their home.
In the House and Senate Fiscal Year 2004 Labor, Health and Human Services, and Education Appropriations bills, Congress recommended that the National Institute of Diabetes and Digestive and Kidney Diseases (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.
Gastroesophageal Reflux Disease (GERD)
Gastroesophageal reflux disease, or GERD, is a very 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. 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. However, periodic heartburn is a symptom so common that many people overlook its potential to cause tissue damage and disease. This is unfortunate because, through awareness and a diagnosis, individuals can receive one of several treatment options available for GERD. Untreated, GERD may lead to severe complications such as inflammation, stricture, or Barrett’s esophagus, a potentially pre-cancerous condition.
Gastroesophageal reflux, involving regurgitation of gastric contents into the esophagus, affects as many as one-third or more of all full term infants born in America each year, but generally resolves by six to twelve months of age. Gastroesophageal reflux disease (GERD) results when symptoms persist or tissue damage occurs. Medical therapy may then be required in order to control the disease, which in infants commonly manifests as symptoms such as regurgitation with poor weight gain, esophagitis, respiratory symptoms, or irritability. In children and adolescents, the natural history of GERD is similar to that of adult patients, in whom GERD 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 it may be more prevalent in individuals who develop Barrett’s esophagus. Diagnosis usually occurs when the disease is in an advanced stage; early effective screening tools are needed.
Gastrointestinal Motility Disorders
Gastrointestinal motility disorders can affect any part or parts of the gastrointestinal tract. Gastroparesis, chronic intestinal pseudo-obstruction (CIP), and Hirschsprung’s disease, are just a few examples of gastrointestinal motility disorders.
Gastroparesis is a painful disorder where the nerves to the stomach are damaged or stop working, which leads to the stomach taking too long to empty its contents. Symptoms of gastroparesis can include: nausea, vomiting, early satiety or an early feeling of fullness when eating, weight loss, abdominal bloating, and abdominal discomfort. This disorder is often a complication of diabetes. An estimated 20% of people with type 1 diabetes develop gastroparesis. Individuals with type 2 diabetes can also develop gastroparesis.
Approximately, 200 new cases of Chronic Intestinal Pseudo-Obstruction or CIP are diagnosed in American children each year. This rare and serious disorder occurs when coordinated contractions, or peristalsis, in the intestinal tract become altered and inefficient. When this happens, nutritional requirements cannot be adequately met. CIP is often life threatening and treatment challenging. Continued clinical and basic research is needed before the disease is fully understood, and improved treatment or ultimately a cure found.
Hirschsprung’s disease (HD) is a serious and sometimes life threatening congenital disorder that is caused by absence of nerve cells in the rectum and/or colon, which can cause obstruction, inflammation, and severe constipation. It occurs in about one out of every 5,000 American children born each year. The treatment is primarily surgical to remove the abnormal bowel.
Approximately 10-20% of children with HD will continue to have complications following surgery.
These complications include infection, fecal incontinence, and persistent constipation.
Functional Gastrointestinal and Motility Disorders and the National Institutes of Health
The International Foundation for Functional Gastrointestinal Disorders recommends an increase to $30.8 billion or 10% for NIH overall, and a 10% increase for NIDDK, or $1.85 billion. 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 (GI) and motility disorders. This increased funding will allow for the growth of new research, a prevalence study and a strategic plan on IBS, and increased public and professional awareness of functional GI and motility disorders.
A primary goal of IFFGD’s mission is to ensure that advancements concerning GI disorders result in improvements in care and the quality of life of those affected. As we all work together, it is hoped this goal will be realized and the suffering and pain millions of people face daily will end.
Mr. Chairman, on behalf of millions of patients and the families of those with functional GI or motility disorders thank you for your consideration.