IFFGD President, Ceciel Rooker, submitted the following written statement to the House and Senate Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies regarding Fiscal Year (FY) 2020 appropriations for medical research and public health programs.
April 9, 2019
STATEMENT OF CECIEL T. ROOKER
PRESIDENT INTERNATIONAL FOUNDATION FOR GASTROINTESTINAL
REGARDING FISCAL YEAR (FY) 2020 APPROPRIATIONS FOR MEDICAL RESEARCH AND PUBLIC HEALTH PROGRAMS
APRIL 9, 2019
FY20 L-HHS APPROPRIATIONS RECOMMENDATIONS:
- At least $41.6 billion in program level funding for the National Institutes of Health (NIH).
- Proportional funding increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
Chairwoman DeLauro, Ranking Member Cole, and distinguished members of the Subcommittee, as you work with your colleagues to develop the FY20 Labor-Health and Human Services (L-HHS) appropriations bill, please keep in mind the needs and concerns of the functional GI and motility disorders community. Nearly two decades ago, I was diagnosed with one of these diseases, irritable bowel syndrome (IBS). As a young adult, I underwent extensive testing and workups over many years in a difficult effort to discover what was causing my symptoms and how best to treat them. I often relied on self-treatment as best as I could, but this was not sustainable. Unfortunately, I am not alone in these experiences. As President of IFFGD, I have heard my story echoed back to me by thousands of others. Patients affected by these disorders often face similar delays in diagnosis, frequent misdiagnosis, and inappropriate treatments including unnecessary and costly surgery. These are common concerns for our community, and they underscore the need for increased research, improved provider education, and greater public awareness.
ABOUT THE FOUNDATION
The International Foundation for Gastrointestinal Disorders (IFFGD) is a registered nonprofit education and research organization dedicated to informing, assisting, and supporting people affected by gastrointestinal (GI) disorders. IFFGD works with patients, families, physicians, nurses, practitioners, investigators, regulators, employers, and others to broaden understanding about GI disorders, support and encourage research, and improve digestive health in adults and children.
ABOUT GASTROINTESTINAL (GI) AND MOTILITY DISORDERS
GI and motility disorders are the most common digestive disorders in the general population. These disorders are classified by symptoms related to any combination of the following: motility disturbance, visceral hypersensitivity, altered mucosal and immune function, altered gut microbiota, and altered central nervous system (CNS) processing. Some examples of functional GI disorders are: dyspepsia, gastroparesis, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), bowel incontinence, cyclic vomiting syndrome, abdominal phrenic dyssynergia (APD), and pelvic floor dysfunction. The costs associated with these diseases range from $25-$30 billion annually; economic costs are also reflected in work absenteeism and lost productivity.
NATIONAL INSTITUTES OF HEALTH
Strengthening the nation's biomedical research enterprise through NIH fosters economic growth and sustains innovations that enhance the health and well-being of the American people. Functional GI disorders are prevalent in about 1 in 4 people in the U.S., accounting for 40% of GI problems seen by medical providers. NIDDK supports basic, clinical, and translational research on aspects of gut physiology regulating motility and supports clinical trials through the Motility and Functional GI Disorders Program.
Several of NIH’s crosscutting initiatives are currently advancing science in meaningful ways for patients with gastrointestinal disorders. The Stimulating Peripheral Activity to Relieve Conditions (SPARC) Initiative supports research on the role that nerves play in regulating organ function. Methods and medical devices that modulate these nerve signals are a potentially powerful way to treat many chronic conditions, including gastrointestinal and inflammatory disorders. The Human Microbiome Project is also unlocking important discoveries that will help to inform and advance emerging treatment options for many in the community.
I would like to share with you the patient perspective of one of our members, Brittany Aliano from New York. Brittany suffers from an unknown disorder of the GI-tract, and her experience exemplifies why the community drastically needs increased medical research, professional education, and public awareness.
“My primary diagnosis is Abdomino-Phrenic Dyssynergia (APD). When a normal person swallows, the diaphragm is supposed to relax (to accommodate the stomach filling with food) and the abdominals are supposed to contract (to keep all the abdominal contents inside the body). Unfortunately, in APD the opposite happens. So, when I eat, my diaphragm contracts and pushes all my organs out of my body. My abs also relax, resulting in a “pseudo-pregnancy.” This happens every time I eat, so it is worse at the end of the day.
I have had to fight extremely hard to get medical care in the U.S., because most American doctors are not familiar enough with functional gastrointestinal disorders. In fact, I had to leave the country twice to get treatment! We need more awareness, research, and education in America surrounding these disorders.
No one should have to suffer like I have or go abroad to get care. We need more research and awareness stateside!”
Thank you for the opportunity to submit our community’s perspective, as you consider appropriations priorities for FY 2020. We look forward to continuing to work with you on these critical issues.