On May 2, 2002 IFFGD Founder and President Nancy J. Norton presented the following testimony regarding Fiscal Year 2003 Irritable Bowel Syndrome Research to the House Appropriations Subcommittee on Labor, Health & Human Services, Education and Related Agencies:
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.
My name is Nancy Norton, and in 1991, I founded the International Foundation for Functional Gastrointestinal Disorders (IFFGD), in response to my own experiences as a patient. I’m proud to say that 11 years later my organization serves hundreds of thousands of people in need each year, providing information and support to patients and physicians. The largest organization of its kind in the United States, IFFGD works with consumers, patients, physicians, providers and payers to broaden understanding about fecal incontinence, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), pediatric disorders and numerous other gastrointestinal disorders. Additionally, it has been my personal vision and goal to see a greater investment in research on functional gastrointestinal and motility disorders, a subject that has often been left behind.
I have lived with IBS most of my adult life and due to an obstetrical injury 16 years ago I have lived life with bowel incontinence. Incontinence in particular is often thought of as something that affects us when we are frail and elderly – perhaps something that is part of the aging process. 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. 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, let alone a complication of an episiotomy with vaginal delivery. The IFFGD has become a resource and provided hope for hundreds of thousands of people as they try to regain as normal a life as possible.
IFFGD continues to speak about and raise awareness for disorders and diseases that many people are uncomfortable and embarrassed to talk about. The prevalence of fecal incontinence and irritable bowel syndrome is underestimated in the United States. These conditions are truly hidden in our society. Not only are they are misunderstood, but also the burden of illness and human toll has not been fully recognized. The same applies to many pediatric gastrointestinal disorders as well.
Often the quality of life of children affected by a gastrointestinal motility or functional gastrointestinal disorder is significantly affected. Imagine your child being ostracized, bullied, threatened, or even worse, told that they are no longer welcomed because of their bowel issues. The psychological impact of such rejection, may lead to self-induced pain, post traumatic stress disorder, or attempted suicide. Our job is to find answers and lessen the pain that so many of these children face.
Given that we have been diligently working for the past ten years it is an exciting time to lead the IFFGD, not only are we serving more and more people, but we are beginning to be able to privately fund research, with our first grant announcement next year. Additionally, more treatment options are being researched and becoming available for all types of functional gastrointestinal disorders (FGI), although many more are needed.
Since its establishment the IFFGD has been dedicated to increasing awareness of functional gastrointestinal disorders and motility disorders, among the public, health professionals, and researchers. In March of 2001 we hosted the Fourth International Symposium on Functional Gastrointestinal Disorders, which was a great success in bringing scientists from across the world together to discuss the current science and opportunities on irritable bowel syndrome and other functional gastrointestinal disorders. The Fifth International Symposium will be held next April 2003. Additionally, this November, we are hosting a conference on fecal and urinary incontinence. The IFFGD has become known for our professional symposia. We consistently bring together a unique group of international multidisciplinary investigators to communicate new knowledge in the field of functional 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 is enormous, 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. In essence these diseases reflect lost potential for the individual and society.
At least 6.5 million Americans suffer from fecal incontinence. This disorder affects people of all ages–children as well as adults, but is more common among women and in the elderly of both sexes. Fecal incontinence is not normal in the aging process, and can be caused by: 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. 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, so they withdraw from friends and family. The social isolation is unfortunate but may be reduced because treatment can improve bowel control and make incontinence easier to manage.
Irritable Bowel Syndrome (IBS)
Irritable Bowel Syndrome affects approximately 30 million Americans. 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 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. Currently, methods to treat IBS are limited to treating single symptoms with prescription and over-the-counter medications, which is problematic due to the overuse and then misuse of the regimen.
Similar to fecal incontinence and depending on severity, IBS can be emotionally and physically debilitating. Because of bowel irregularity, individuals who suffer from this disorder may distance themselves from social events, work, and even may fear leaving their home.
Gastroesophageal Reflux Disease (GERD)
Gastroesophageal reflux disease, or GERD, is a very common disorder, 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.
Periodic heartburn is a symptom that many people experience. There are several treatment options available for individuals suffering from GERD.
Approximately 13,000 new cases of esophageal cancer are diagnosed every year in this country. This type of cancer is more prevalent in individuals who have a specific type of GERD. Diagnosis usually occurs when the disease is in an advanced stage, early screening tools are currently unavailable, and therefore an estimated 13% of whites and 9% of non-whites survive beyond five years.
Pediatric FGI and Motility Disorders
A larger number of children each year are diagnosed with functional gastrointestinal disorders and motility disorders. The most common disorders found in children are:
Chronic intestinal pseudo-obstruction –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 only 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.
Gastroesophageal reflux (GER) – As many as one third of all full term infants born in America each year will have GER as a result of 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.
Gastroesophageal reflux disease (GERD) – 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.
Non-retentive fecal soiling – Diagnosed in children older than 4, who have bowel movements into the underclothing or in places and at times that are inappropriate. Sometimes caused by an emotional disturbance in a school-aged child.
Functional fecal retention – Occurs in a child from infancy to 16 years old. Accompanying symptoms include soiling of the underclothes, irritability, abdominal cramps, and decreased appetite. Sometimes functional fecal retention is associated with bedwetting, and 10% of affected girls get urinary tract infections.
Cyclic Vomiting Syndrome – Occurs in infancy through adulthood, but most commonly between ages 3-7. The average number of episodes each year is 12.
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 constipation is important to treat since it may predispose the child to functional fecal retention.
FGI and Motility Disorders and the National Institutes of Health
The International Foundation for Functional Gastrointestional Disorders recommends an increase to $23.7 billion or 16% for NIH overall, and a 16% increase for NIDDK, or $1.7 billion. This increase reflects a request to double the NIH budget in five years. 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 FGI and motility disorders, this increased funding will allow for the growth of new research, a prevalence study on IBS, and increased public and professional awareness of FGI 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.