IFFGD President, Ceciel Rooker, submitted the following written statement to the House and Senate Committees on Appropriations, Subcommittees on Labor, Health and Human Services, Education, and Related Agencies regarding Fiscal Year (FY) 2019 appropriations for medical research and public health programs at the National Institutes of Health (NIH) and related agencies on June 1, 2018:
STATEMENT OF CECIEL T. ROOKER
INTERNATIONAL FOUNDATION FOR FUNCTIONAL GASTROINTESTINAL DISORDERS
REGARDING FISCAL YEAR 2019 APPROPRIATIONS FOR MEDICAL RESEARCH AND PUBLIC HEALTH PROGRAMS
JUNE 1, 2018
FY19 L-HHS APPROPRIATIONS RECOMMENDATIONS:
- At least $39.3 billion in program level funding for the National Institutes of Health (NIH)
- Proportional funding increase for NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- Continued focus on digestive disease research and education at the NIH
Distinguished members of the Subcommittee, we thank you for the opportunity to present the view of the International Foundation for Functional Gastrointestinal Disorders (IFFGD) regarding the importance of supporting functional gastrointestinal and motility disorders (FGIMDs) research. Established in 1991, IFFGD is a patient-driven nonprofit organization dedicated to improving the lives of individuals affected by chronic gastrointestinal (GI) disorders, including FGIMDs, by providing education and support to patients, healthcare providers, and the public. IFFGD also works to bolster critical research aimed at advancing the development of better treatment options and, eventually, cures for these conditions and has worked closely with the National Institutes of Health (NIH) on research priorities in this area.
As a patient myself, I am keenly aware of the need for increased research, more effective and efficient treatments, and the hope for cures for these debilitating and sometimes even life-threatening conditions. Nearly two decades ago, as a young adult, I was diagnosed with irritable bowel syndrome (IBS). I underwent extensive testing and workups over many years in a costly and fruitless effort to discover what was causing my symptoms and how to treat them.
Eventually, I ended up self-treating as best as I could and spent years trying to teach myself to live with my illness. Unfortunately, I am not alone in these experiences. Since becoming President of IFFGD I have heard my story echoed back to me by thousands of others. Patients affected by these disorders face significant delays in diagnosis, frequent misdiagnoses, and inappropriate treatments, including unnecessary surgery.
The path to diagnosis and care is slowed by the dearth of research in this area. We ask for your consideration of supporting critical research into the basic mechanisms and clinical care of FGIMDs through your support of increased funding for the NIH. Thank you for your time and your consideration of the priorities of the FGIMD community as you work to craft the FY19 L-HHS Appropriations Bill.
ABOUT FUNCTIONAL GASTROINTESTINAL AND MOTILITY DISORDERS (FGIMDS)
FGIMDs are the most common digestive disorders in the general population, occurring in about 1 in 4 people in the US and accounting for 40% of GI problems seen by medical providers. 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 FGIMDs are: dyspepsia, gastroparesis, IBS, gastroesophageal reflux disease (GERD), bowel incontinence, and cyclic vomiting syndrome. Most FGIMDs have no cure and limited treatment options, leaving patients to 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.
SUPPORT FOR RESEARCH AT THE NIH
IFFGD urges Congress to fund the NIH at the level of $39.3 billion or more for FY 2019
Strengthening and preserving the nation’s biomedical research enterprise through the NIH fosters economic growth and sustains innovations that enhance the health and well-being of the American people. Concurrent with overall NIH funding, IFFGD supports the growth of research activities on FGIMDs to bolster the medical knowledge base and improve treatment, particularly through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The 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.
I would like to share with you the patient perspective of one of our members:
“My name is Melissa, in early February 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis. My life changed in ways I could not have imagined — overnight. One day, I was able to eat at buffets and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests, diagnosed, given only a brief explanation of my illness and its treatment, and sent home.
For the next few weeks, I was on a liquid-only diet, and I was told that I had to gradually work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has occurred. I am able to eat some soft foods, in tiny amounts, but it is becoming clear to me that I will never again be able to eat “normal” foods in “normal” amounts.
At first, I told myself that I would not let this stupid disease define or control me — it simply WOULD NOT be the center of my life. But, as time passed, I began to see how foolish that was. Every single day, every second of every day, I think about food. I see it; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself. I look in the mirror, and I see a skeleton. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I didn’t think were possible. Some mornings, I don’t think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And, almost ever single night, my husband has to help me up the stairs to bed because he is afraid that if he doesn’t, I might fall down those stairs. My 10-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out.
I grieve over the fact that I can no longer travel or get out of the house for much of anything. I grieve over missing family events and not being able to attend my daughter’s activities. I grieve over not being able to go out to eat, or on a picnic, or to another concert, or any of the things I know are not possible anymore. I worry that I will not get to see my daughter graduate, or get married, or have children.
I am not on the verge of death today, but when I look in the mirror and think about how tired I am, I realize that people like this do not have long life spans — and it bothers me. I get frustrated because people do not understand how my life is affected by all of this. They ask me all of the time if I am okay now. I can’t seem to convince them that I am never going to be okay again — not in the way they mean it. I am told that I “just need to eat.” My own doctor accused me of being an anorexic and told my husband to “watch me.” And though I know people mean well and are trying their best to help, it still makes me so frustrated.
There are hundreds (maybe thousands) of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain, or other such conditions. I know so many people now who have feeding tubes or ports for nutrition. I know many who have developed other serious conditions because of their gastroparesis. I sometimes look at them and think that this will surely be my future, too, and it scares me.
What I do understand is that it is important to me to let people know what I go through — what all gastroparesis sufferers likely go through. I am sharing these personal details in such a public forum because I think it is important for people to see this disease. But, I think it is equally important to share how much I have been blessed BECAUSE OF this disease and to let others know how much they matter and how much of a difference they can make.”
Melissa’s and my stories are far from unique. There are millions of people across the US suffering and sometimes dying because of these disorders. We thank you for the opportunity to testify before your committee on behalf of all of them and for your time and consideration of our requests.