IFFGD Founder and President, Nancy Norton, submitted the following written statement to the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies regarding Fiscal Year (FY) 2016 appropriations for the National Institutes of Health (NIH) on April 29, 2015:

STATEMENT OF NANCY J. NORTON

PRESIDENT AND CO-FOUNDER
INTERNATIONAL FOUNDATION FOR FUNCTIONAL GASTROINTESTINAL DISORDERS

REGARDING FISCAL YEAR 2016 APPROPRIATIONS FOR THE NATIONAL INSTITUTES OF HEALTH

SUBMITTED TO THE HOUSE APPROPRIATIONS SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES

APRIL 29, 2015

1.  $32 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH (NIH) AT AN INCREASE OF $1 BILLION OVER FY 2015. INCREASE FUNDING FOR THE NATIONAL CANCER INSTITUTE (NCI), THE NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES (NIDDK) AND THE NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES (NIAID) BY 12%.
CONTINUE FOCUS ON DIGESTIVE DISEASE RESEARCH AND EDUCATION AT NIH, INCLUDING, IRRITABLE BOWEL SYNDROME (IBS), FECAL INCONTINENCE GASTROESOPHAGEAL REFLUX DISEASE (GERD) GASTROPARESIS, AND CYCLIC VOMITING SYNDROME (CVS).

2.  Thank you for the opportunity to present the views of the International Foundation for Functional Gastrointestinal Disorders (IFFGD) regarding the importance of functional gastrointestinal and motility disorders (FGIMD) research. Established in 1991, IFFGD is a patient-driven nonprofit organization dedicated to assisting individuals affected by FGMIDs, and providing education and support for patients, healthcare providers, and the public. IFFGD also works to advance critical research on FGIMDs in order to develop better treatment options and to eventually find cures. IFFGD has worked closely with the National Institutes of Health (NIH) on many priorities, and I served on the National Commission on Digestive Diseases (NCDD), which released a long-range plan in 2009, entitled Opportunities and Challenges in Digestive Diseases Research: Recommendations of the National Commission on Digestive Diseases.

The need for increased research, more effective and efficient treatments, and the hope for discovering a cure for FGIMDs are close to my heart. My own experiences of suffering from FGIMDs motivated me to establish IFFGD, and I was shocked to discover that despite the high prevalence of FGIMDs among all demographic groups, such a lack of research existed. This translates into a dearth of diagnostic tools, treatments, and patient supports. Even more shocking is the lack of awareness among the medical community and the public, leading to significant delays in diagnosis, frequent misdiagnosis, and inappropriate treatments including unnecessary surgery. Most FGIMDs have no cure and limited treatment options, so patients face a lifetime of chronic disease management. The costs associated with these diseases range from $25-$30 billion annually; economic costs are also reflected in work absenteeism and lost productivity.

IRRITABLE BOWEL SYNDROME (IBS)

IBS affects 30 to 45 million Americans, conservatively at least 1 out of every 10 people. It is a chronic disease that causes abdominal pain and discomfort associated with a change in bowel pattern, such as diarrhea and/or constipation. As a “functional disorder,” IBS affects the way the muscles and nerves work, but the bowel does not appear to be damaged on medical tests. Without a diagnostic test, IBS often goes undiagnosed or misdiagnosed for years. Even after IBS is identified, treatment options are limited and vary from patient to patient. Due to persistent pain and bowel unpredictability, individuals may distance themselves from social events and work. Stigma surrounding bowel habits may act as barrier to treatment, as patients are not comfortable discussing their symptoms with doctors. Many people also dismiss their symptoms or attempt to self-medicate with over-the-counter medications. Outreach to physicians and the general public remain critical to overcome these barriers to treatment and assist patients.

FECAL INCONTINENCE

At least 12 million Americans suffer from fecal incontinence. Incontinence crosses all age groups, but is more common among women and the elderly of both sexes. Often it is associated with neurological diseases, cancer treatments, spinal cord injuries, multiple sclerosis, diabetes, prostate cancer, colon cancer, and uterine cancer. Causes of fecal incontinence include: 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 may feel ashamed or humiliated, and most attempt to hide the problem for as long as possible. Some don't want to leave the house in fear they might have an accident in public; they withdraw from friends and family, and often limit work or education efforts. Incontinence in the elderly is the primary reason for nursing home admissions, an already significant social and economic burden in our aging population. In 2002, IFFGD sponsored a consensus conference entitled, Advancing the Treatment of Fecal and Urinary Incontinence through Research: Trial Design, Outcome Measures, and Research Priorities. IFFGD also collaborated with NIH on the NIH State-of-the-Science Conference on the Prevention of Fecal and Urinary Incontinence in Adults in 2007.

NIDDK recently launched a Bowel Control Awareness Campaign (BCAC) that provides resources for healthcare providers, information about clinical trials, and advice for individuals suffering from bowel control issues. The BCAC is an important step in reaching out to patients, and we encourage continued support for this campaign. Further research on fecal incontinence is critical to improve patient quality of life and implement the research goals of the NCDD.

GASTROESOPHAGEAL REFLUX DISEASE (GERD)

GERD is a common disorder which results from the back-flow of stomach contents into the esophagus. GERD is often accompanied by chronic heartburn and acid regurgitation, but sometimes the presence of GERD is only revealed when dangerous complications become evident. There are treatment options available, but they are not always effective and may lead to serious side effects. Gastroesophageal reflux (GER) affects as many as one-third of all full term infants born in America each year and even more premature infants. GER results from immature upper gastrointestinal motor development. Up to 8% of children and adolescents will have GER or GERD due to lower esophageal sphincter dysfunction and may require long-term treatment.

GASTROPARESIS

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, and is 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. In many patients the cause cannot be found and the disorder is termed idiopathic gastroparesis.

CYCLIC VOMITING SYNDROME (CVS)

CVS is a disorder with recurrent episodes of severe nausea and vomiting interspersed with symptom free periods. The periods of intense, persistent nausea and vomiting, accompanied by abdominal pain, prostration, and lethargy, last hours to days. Previously thought to occur primarily in pediatric populations, it is increasingly understood that this crippling syndrome can occur in many age groups, including adults. CVS patients often go for years without correct diagnosis. CVS leads to significant time lost from school and from work, as well as substantial medical morbidity. The cause of CVS is not known. Research is needed to help identify at-risk individuals and develop more effective treatment strategies.

SUPPORT FOR CRITICAL RESEARCH

IFFGD urges Congress to fund the NIH at level of $32 billion for FY 2016. Strengthening and preserving our nation’s biomedical research enterprise fosters economic growth and supports innovations that enhance the health and well-being of the nation. Concurrent with overall NIH funding, IFFGD supports the growth of research activities on FGIMDs to strengthen the medical knowledge base and improve treatment, particularly through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and urges a funding level of $2.066 billion for FY 2016. Such support would expedite the implementation of recommendations from the NCDD. It is also vital for NIDDK to work with the National Institute of Child Health and Human Development (NICHD) to expand its research on the impact FGIMDs have on pediatric populations. Following years of near level-funding, research has been negatively impacted across all NIH Institutes and Centers. Without additional funding, medical researchers run the risk of losing promising research opportunities that could benefit patients.

We applaud the recent establishment of the National Center for Advancing Translational Sciences (NCATS) at NIH. Initiatives like the Cures Acceleration Network are critical to overhauling the translational research process and overcoming the challenges that plague treatment development. In addition, new efforts like taking the lead on drug repurposement hold the potential to speed new treatment to patients. We ask that you support NCATS and provide adequate resources for the Center in FY 2016.

Thank you for the opportunity to present these views on behalf of the FGIMD community.

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