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.
CECIEL T. ROOKER
PRESIDENT and EXECUTIVE DIRECTOR
INTERNATIONAL FOUNDATION FOR GASTROINTESTINAL DISORDERS
ON BEHALF OF INTERNATIONAL FOUNDATION FOR GASTROINTESTINAL DISORDERS
FISCAL YEAR (FY) 2022 APPROPRIATIONS FOR MEDICAL RESEARCH AND PUBLIC HEALTH PROGRAMS
SUBMITTED TO THE
SENATE COMMITTEE ON APPROPRIATIONS
SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES
June 24, 2021
FY2022 L-HHS APPROPRIATIONS RECOMMENDATIONS:
- At least $46.1 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).
- Please provide $10 billion for the Centers for Disease Control and Prevention (CDC).
- Please provide $5 million for the Chronic Disease Education and Awareness Program.
Chairwoman Murray, Ranking Member Blunt, and distinguished members of the Subcommittee, as you work with your colleagues to develop the FY2022 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, and cyclic vomiting syndrome. The costs associated with these diseases range from $25-$30 billion annually; economic costs are also reflected in work absenteeism and lost productivity.
CENTERS FOR DISEASE CONTROL AND PREVENTION
We greatly appreciate the support from the Subcommittee in creating the Chronic Disease Education and Awareness Program in FY2021. Patients with FGIMDs frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the most common digestive disorders in the general population. They affect an estimated 1 in 4 people in the U.S. and account for 40% of GI problems seen by medical providers. A CDC program focused on surveillance, provider education, and public awareness would increase diagnoses and improve patient outcomes. We ask that the Subcommittee provide $5 million for the Chronic Disease Education and Awareness Program in FY2022.
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.
PATIENT PERSPECTIVE – Jacqui’s Story
I got sick after an emergency appendectomy on Thanksgiving 2010 while I was in Army basic training. I was able to fight off the inevitable and did four years in the Army during which I did a tour in Afghanistan. When I got back, my health really started declining.
I fought and fought and fought for an answer, but it took just over seven years to be diagnosed with gastroparesis. My main symptoms were nausea, vomiting and pain. It got so bad that I had to give up my dream career andwas medically retired from the service.
Because we had tried pretty much every conservative treatment, they told me I would just have to live with it. It got to the point where I was going weeks without eating and was in and out of the ER getting fluids, because anything that went in my stomach came back up. My hair thinned, so I shaved it, and I was having memory problems and confusion, which got so bad that my neuropsych tests came back with my score being in the range of dementia.
My gastroenterologist even told me at one point that she couldn’t do anything “drastic” to help me until my blood work was “bad enough.”
Thank you for the opportunity to submit our community’s perspective, as you consider appropriations priorities for FY 2022. We look forward to continuing to work with you on these critical issues.