Updates about what is happening on the legislative and regulatory level – news events that affect your digestive health.
Three New Cosponsors for HR 2311
(July 6, 2016) Following Virtual Advocacy Day, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 2311) received three new cosponsors. House Representatives Eliot Engel (NY-16), Mark Pocan (WI-2), and Ron Kind (WI-3) showed their commitment to improving the lives of all those impacted by a functional gastrointestinal (GI) or motility disorder. We deeply appreciate their efforts in support of functional GI and motility disorders research.
Functional digestive disorders are the most common GI disorders in the general population. Estimates vary, but about 1 in 4 people or more in the US have one of thse disorders - men, women, and children. The conditions account for about 40% of GI problems seen by doctors and therapists in the US. The Functional Gastrointestinal and Motility Disorders Research Enhancement Act will help promote awareness of functional GI and motility disorders, expand critical research, initiate important legislation, and facilitate the development of new treatment options for all those affected.
Is Your House Representative a Cosponsor of HR 2311?
Representatives Engel, Pocan, and Kind join nine other House Congressional leaders in supporting this critical piece of legislation. Cosponsors are important to help HR 2311 become law. There are thousands of bills for Congress to consider every session, but only a few become law. Cosponsors act as champions for the legislation they support and help it move forward through the legislative process.
Have you contacted your House Representative about HR 2311? Read more about this piece of legislation and how you can take action.
Two New Cosponsors for Bill HR 2311
(June 29, 2016) After hearing from their constituents following IFFGD's Virtual Advocacy Day, House Members David Joyce (OH-14) and Sean Duffy (WI-7) signed on to The Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 2311). On June 23rd people across the United States reached out to their House Members of Congress through email, phone, and social media on behalf of all those affected by a functional digestive condition. We are grateful to Congressmen Joyce and Duffy for answering the call of their constituents and demonstrating their commitment to improving the lives of all those impacted by a functional GI or motility disorder.
FUNDING FOR DIGESTIVE CONDITIONS INCLUDED IN PRESIDENT'S FY 2017 BUDGET REQUEST
(February 9, 2016) Today the White House issued the President’s Budget Request for fiscal year (FY) 2017. Highlights of the proposal included:
- $33.136 billion for the National Institutes of Health (NIH), an increase of $825 million over FY 2016
- $1.966 billion for the NIH, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), level funding with FY 2016
- $14.025 million for the CDC Health Promotion Initiatives, which includes public health awareness related to digestive diseases
LOOKING AHEAD TO THE 114TH CONGRESS: UPDATE ON THE FUNCTIONAL GI & MOTILITY DISORDERS RESEARCH ENHANCEMENT ACT
(May 13, 2015) The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015 (HR 2311) was reintroduced in the US House of Representatives on May 13, 2015 by Rep. F. James Sensenbrenner (WI-5) and it needs your continued support.
The 114th Congress began January 3, 2015. Every 2 years in January a new Congress starts over with new legislation to consider. Bills not acted on in the previous Congress can be reintroduced in the new Congress (often with a new number), and the legislative process will start again. More here
FUNDING FOR DIGESTIVE CONDITIONS INCLUDED IN PRESIDENT'S FY 2016 BUDGET REQUEST
(February 27, 2015) Earlier this month the White House issued the President's Budget Request (PBR) to the newly installed 114th Congress for fiscal year (FY) 2016. Highlights of the proposal included:
- An increase over FY 2015 of 3.2% in funding for the National Institutes of Health (NIH) and 2.2% for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), with specific language relating to digestive disorders, rare diseases, and the gut microbiome.
- A commitment to pediatric research in the NIH in the amount of $3.6 billion.
- A 8.6% increase for the US Food and Drug Administration (FDA) over FY 2015.
- An increase of 10 in the number of funded research projects for the Gulf War Illness research program.
- Support for the Precision Medicine Initiative (a new model that takes into account individual differences in genetics, environments, and lifestyles when treating disease) through the NIH.
THE STATE OF RESEARCH AT NIH & NIDDK
(October 2, 2014) In inflation adjusted dollars, National Institutes of Health (NIH) appropriations are approximately at the same level as 15 years ago. NIDDK is the National Institute for Diabetes and Digestive and Kidney Diseases, one of 27 NIH Institutes and Centers. The NIDDK conducts and supports basic and applied research.
The tremendous momentum gained from the NIH doubling from 1998 to 2003 has been eliminated.
These policy decisions are causing down-sizing or closure of research programs in the U.S., discouraging young people from choosing to enter the long and arduous training pathways that are needed in biomedical research. Reductions in U.S. material and human capital investments threatens U.S. pre-eminent leadership in biomedical research.
Ironically, this is happening at a time when rapid advances in medical research and technology offer the promise of improvement in the lives of people suffering from many chronic diseases. Progress in developing better diagnostic and treatment approaches for functional GI and motility disorders has been slow. However, due in part to the substantial efforts made by IFFGD, there is increased awareness of the needs of affected individuals and the burdens of illness imposed by these conditions.
NIDDK-funded investigators are making major contributions in the area of basic science discovery helping better understand these conditions. The current NIDDK portfolio spans a broad range of basic and clinical research projects involving tissue and muscle cells, the enteric nervous system (ENS), and mechanistic studies in GERD, dysphagia, and mechanisms of symptom generation, to name a few. The clinical research portfolio includes multi-center studies in gastroparesis, functional dyspepsia, irritable bowel syndrome (IBS), and Sphincter of Oddi dysfunction, among others.
One of the relatively new areas of interest involves understanding the microbiota that we all have in our digestive systems that are believed to play important roles in health and illness. This area is rapidly moving towards therapeutic approaches to improve digestive diseases.
Another exciting area is stem cell research. Tissue models can now easily be made in the laboratory (enteroids) from small endoscopic biopsies of patients to use for study and to lay the foundation for regenerative medicine approaches.
New technologies are opening up ways to better understand how diet is involved in health and illness. NIDDK has contributed to support that focuses on understanding brain gut connections and visceral pain.
NIDDK devotes substantial effort to educate and inform the public on health issues in digestive diseases and the latest advances that result from NIH research. Extensive online materials for the general public are often developed in partnership with organizations such as IFFGD. The NIDDK continues to support the Bowel Awareness campaign, which was developed with considerable input and assistance from IFFGD, with the aim to provide helpful information to individuals with bowel incontinence.
Despite current economic challenges, NIDDK will continue to bring improvements to people with functional GI and motility disorders due to the dedication of many scientists around the country, continued funding from the NIH, and the important contribution of professional societies, organizations such as IFFGD, and patients who participate in research projects and inspire us all.
BETHESDA, MD (February 20, 2009) The National Commission on Digestive Diseases’ long-range research plan for digestive diseases, entitled Opportunities and Challenges in Digestive Diseases Research: Recommendations of the National Commission on Digestive Diseases, is now available in electronic (PDF) format, and soon will also be available in print format.
On July 26, 2005 the then Director of the National Institutes of Health (NIH), Elias A. Zerhouni, MD, chartered the National Commission on Digestive Diseases. The Commission was charged with two main tasks:
- To conduct an overview of the state of the science in digestive diseases research, and
- To develop a 10-year plan for digestive diseases research.
The NIH Director appointed 16 Commission members, including Nancy Norton from IFFGD. In addition to the 16 appointed members, the Commission included 19 ex officio members from the NIH and other federal government agencies involved in digestive diseases research. The members created “working groups” to address major themes; additional working group members were brought in to contribute their expertise and knowledge of current research related to each working group topic.
The Commission then proceeded to address 12 major themes in a Long-Range Research Plan for Digestive Diseases. They organized the plan by categorizing diseases by common causes (etiology), mechanisms, affected organ systems, and other considerations. Each theme includes an overview, a summary of recent research advances, goals for research, and major challenges and steps to achieve the research goals.
The Commission recognized the need for finding ways to achieve and sustain digestive diseases research and developed goals and recommendations for training, education, and the recruitment of new investigators into the field.
Maryland, Bethesda: NIH State-of-the-Science Conference on Prevention of Fecal and Urinary Incontinence in Adults
The U.S. National Institutes of Health (NIH) conducted an NIH State-of-the-Science Conference on Prevention of Fecal and Urinary Incontinence in Adults on December 10–12, 2007.
We are pleased that the conference resulted in a strong statement by the NIH about the huge unmet need of those who are affected by incontinence.
The conference was convened to assess the available scientific evidence relevant to the following questions:
- What are the prevalence, incidence, and natural history of fecal and urinary incontinence in the community and long-term care settings?
- What is the burden of illness and impact of fecal and urinary incontinence on the individual and society?
- What are the risk factors for fecal and urinary incontinence?
- What can be done to prevent fecal and urinary incontinence?
- What are the strategies to improve the identification of persons at risk and patients who have fecal and urinary incontinence?
- What are the research priorities in reducing the burden of illness in these conditions?
For several years, Nancy Norton and IFFGD vigorously encouraged NIH to convene this conference. Ms. Norton served on the Planning Committee for the conference and was one of 21 speakers who presented information to the independent 15-member conference panel, which drafted a consensus and state of the science report. Ms. Norton spoke on the Impact of Fecal and Urinary Incontinence on Health Consumers, Barriers on Diagnosis and Treatment, A Patient Perspective.
The Panel found that fewer than half of individuals experiencing fecal or urinary incontinence — the inability to control bowel movements or urination, respectively — report their symptoms to healthcare providers without being prompted. The secrecy and distress surrounding these issues erode the quality of life for millions, and hamper scientific understanding and development of prevention and treatment strategies.
Healthcare provider education about incontinence is needed. But, the Panel reported, provider education alone will be insufficient to improve detection, prevention, and treatment. Public policy changes, including appropriate reimbursement, regulation, and management are also needed. Raising public awareness is a priority. To help reduce the stigma associated with these conditions, the panel had the following messages for those experiencing incontinence:
- You are not alone
- Some medical conditions can cause incontinence and can be treated
- Incontinence does not need to be a part of aging
- Lifestyle changes and behavioral interventions can prevent incontinence in many cases
- You should tell your healthcare provider
Though fecal and urinary incontinence can affect men and women at all life stages, both conditions disproportionately affect women, especially those who have given birth, as pelvic muscle injury during childbirth and routine episiotomy are associated with a higher rate of fecal incontinence. For this reason, the panel recommended that episiotomy not be routinely performed during childbirth.
The 15-member conference panel included experts in the fields of geriatrics, nursing, gastroenterology, obstetrics and gynecology, internal medicine, urology, general surgery, oncology, neurosurgery, epidemiology, biostatistics, psychiatry, rehabilitation medicine, environmental health sciences, and healthcare financing, as well as a public representative.
We thank the conference sponsors – the NIH Office of Medical Applications of Research (OMAR) and the National Institute of Diabetes and Digestive and Kidney Diseases, along with other components of the NIH – for making the conference possible.
The text of Ms. Norton’s presentation on The Patient Perspective is available on this IFFGD web page - Go ».
You may access information about the conference, including the Final Conference Statement at this NIH web page - Go ».