Nancy J. Norton, President and Co-Founder of IFFGD submitted the following written statement regarding Fiscal Year 2009 appropriations for the National Institutes of Health to the Senate Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies on April 28, 2008:
Thank you for the opportunity to present this written statement regarding the importance of functional gastrointestinal and motility disorders research.
Since our establishment in 1991, the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has been dedicated to increasing awareness of functional gastrointestinal and motility disorders among the public, health professionals, and researchers. On the federal level, we are currently assisting the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) with creation of their Long-Range Research Plan for Digestive Diseases as a member of the National Commission on Digestive Diseases (NCDD). Also, IFFGD recently worked with the NIDDK, the National Institute of Child Health and Human Development (NICHD), and the Office of Medical Applications of Research (OMAR) on the NIH State-of-the-Science Conference on the Prevention of Fecal and Urinary Incontinence in Adults, which was held in December of last year.
The majority of diseases and disorders we address have no cure and treatment options are often limited. We have yet to completely understand the mechanisms of the underlying conditions. Patients face a life of learning to manage a chronic illness that is accompanied by pain and an unrelenting myriad of gastrointestinal symptoms. The medical and indirect costs associated with these diseases are enormous; estimates range from $25 – $30 billion annually. Economic costs spill over into the workplace, and are reflected in work absenteeism and lost productivity. Furthermore, the human toll is not only on the individual but also on the family. In essence, these diseases account for lost potential for the individual and society.
Irritable Bowel Syndrome (IBS)
IBS strikes people from all walks of life. It affects 30 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.
IBS can be emotionally and physically debilitating. Due to persistent bowel unpredictability, individuals who suffer from this disorder may distance themselves from social events, work, and even may fear leaving their home.
A strategic plan for IBS is currently a component of the NCDD’s Long-Range Research Plan for Digestive Diseases. For FY 2009, IFFGD urges Congress to review the NCDD’s Long-Range Research Plan for Digestive Diseases and provide NIDDK with the resources necessary to effectively implement the plan’s recommendations.
At least 12 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 spinal cord injuries, multiple sclerosis, diabetes, prostate cancer, 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 attempt to hide the problem for 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 the primary reason for nursing home admissions, an already huge social and economic burden in our increasingly aged population.
In November of 2002, IFFGD sponsored a consensus conference entitled, 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 including more comprehensive identification of quality of life issues; improved diagnostic tests for affecting management strategies and treatment outcomes; development of new drug treatment compounds; development of strategies for primary prevention of fecal incontinence associated with childbirth; and attention to the process of stigmatization as it applies to the experience of individuals with fecal incontinence.
In December of last year, IFFGD collaborated with NIDDK, NICHD, and OMAR on the NIH State-of-the-Science Conference on the Prevention of Fecal and Urinary Incontinence in Adults. The goal of this conference was 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. For FY 2009, IFFGD urges Congress to review the Conference’s Report and provide NIH with the resources necessary to effectively implement the report’s recommendations.
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. 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.
Gastroparesis, or delayed gastric emptying, refers to a stomach that empties slowly. Gastroparesis is characterized by symptoms from the delayed emptying of food, namely: bloating, nausea, vomiting or feeling full after eating only a small amount of food. Gastroparesis can occur as a result of several conditions, including being present in 30% to 50% of patients with diabetes mellitus. A person with diabetic gastroparesis may have episodes of high and low blood sugar levels due to the unpredictable emptying of food from the stomach, leading to diabetic complications. Other causes of gastroparesis include Parkinson’s disease and some medications, especially narcotic pain medications. In many patients the cause of the gastroparesis cannot be found and the disorder is termed idiopathic gastroparesis. Over the last several years, as more is being found out about gastroparesis, it has become clear this condition affects many people and the condition can cause a wide range of symptoms of differing severity.
Cyclic Vomiting Syndrome
Cyclic vomiting syndrome (CVS) is a disorder with recurrent episodes of severe nausea and vomiting interspersed with symptom free periods. The periods of intense, persistent nausea, vomiting, and other symptoms (abdominal pain, prostration, and lethargy) lasts hours to days. Previously thought to occur primarily in pediatric populations, it is increasingly understood that this crippling syndrome can occur in a variety of age groups including adults. Patients with these symptoms often go for years without correct diagnosis. The condition leads to significant time lost from school and from work, as well as substantial medical morbidity. The cause of CVS is not known. Better understanding, through research, of mechanisms that underlie upper gastrointestinal function and motility involved in sensations of nausea, vomiting and abdominal pain is needed to help identify at risk individuals and develop more effective treatment strategies.
Support for Critical Research
IFFGD urges Congress to provide the necessary funding for the expansion of the research activities at NIDDK and the Office of Research on Women’s Health (ORWH) regarding functional gastrointestinal (GI) disorders and motility disorders. This increased funding will allow for the growth of new research on functional GI disorders and motility disorders at NIDDK and ORWH, and implementation of the strategic plan on IBS research.
Recent years of near level-funding at NIH have negatively impacted the mission of its Institutes and Centers. For this reason, IFFGD applauds efforts like Senators Tom Harkin (D-IA) and Arlen Specter’s (R-PA) adopted amendment to the FY 2009 Senate Budget Resolutions which calls on appropriators to provide NIH with a 10.3% funding increase. IFFGD urges this Subcommittee to show strong leadership in pursuing such a substantial funding increase.
For FY 2009, IFFGD recommends a funding increase of at least 6.5% for NIH and its Institutes and Centers.
Thank you for the opportunity to present the views of the functional GI disorders community.