Too often, silence is a symptom that accompanies a functional gastrointestinal (GI) or motility disorder. Nowhere has the lack of dialogue and education surrounding these conditions been more detrimental than on Capitol Hill.
IFFGD has been a voice on the Hill for years on behalf of the digestive health community. Despite the progress we have made, federal funding for functional GI and motility disorder medical research currently lags behind other digestive conditions, and patients frequently face issues regarding access to care and availability of treatment options.
Please help fill the information gap in Washington, DC by becoming an advocate, through IFFGD, for the digestive health patient community. Your outreach to Members of Congress and the Administration will help us educate policymakers about the needs of patients and inform them of how they can take meaningful action.
It's Easy to Make a Difference Through the Grassroots Arm of IFFGD
IFFGD is calling on all individuals affected by functional gastrointestinal and motility disorders (FGIMDs) to join the most effective nationwide grassroots movement dedicated to improving treatment options and finding cures for these conditions, the Digestive Health Alliance (DHA). The Digestive Health Alliance (DHA) is the grassroots arm of IFFGD.
Use your story to raise awareness in your community, advocate for change on Capitol Hill, or fundraise for critical research activities. If you would like to stand up, speak out, and work with others to create meaningful, positive change, please visit www.DHA.org.
We bring patients, family members, friends, and healthcare providers together with IFFGD to ensure that we carry one clear, impactful message. Adding your voice to this growing chorus will help expand critical research, initiate important legislation, and facilitate the development of new treatment options.
Involvement in Shaping National Health Care Policy
We are continually present on Capitol Hill, monitoring and participating in areas important to the digestive health community.
Each fiscal year (FY), Congress decides how much funding to provide federally supported medical research initiatives, what areas of research should be prioritized, and how much funding should be committed towards new drug approval and the monitoring of current treatment options. Whenever appropriate, the IFFGD offers testimony, either written or in person before members of Congress, which expresses the needs of functional GI and motility disorder patients and urge additional resources for NIH and FDA. For specific remarks to Congress, please visit our testimony archive.
FDA and Other Regulatory Agencies Testimony
As part of our continual presence in Washington, DC, and around the United States, whenever appropriate IFFGD offers testimony to the U.S. Food and Drug Administration (FDA) and other regulatory agencies. Through either written or in person statements, IFFGD shares the perspective of functional GI and motility disorder patients. We urge consideration of the patient perspective in regulatory decisions and encourage additional resources to help meet their needs. To read specific statements to FDA and other regulatory agencies, please visit our testimony archive.
In 2011 the Department of Veterans Affairs (VA) recognized that there is a "Presumptive Service Connection" associated with service in Southwest Asia during certain periods and the development of functional GI disorders. IFFGD promotes expanding the understanding of health consequences of military service in the Southwest Asia theater of operations during the Gulf War and help for veterans with service connected diseases. View IFFGD testimony to the VA here.
Working With Stakeholders
Digestive Disease National Coalition (DDNC) – The DDNC serves as the national voice of the digestive health community by brining patient organizations, physician societies, and industry partners together around issues of common interest. The functional GI and motility disorders patient community is well represented by the DDNC as IFFGD co-Founder Nancy Norton served as the DDNC’s Chairperson for a number of years. The DDNC actively works to shape health policy through sustained advocacy and outreach, and hosts a two-day public policy forum on Capitol Hill each year.
Alliance for a Stronger FDA – The IFFGD was one of the first organizations to sound the alarm over the lack of resources at FDA and is proud to work through the Alliance for a Stronger FDA to address this issue. The Alliance for a Stronger FDA unites a broad group of patient groups, consumer advocates, biomedical research advocates health professionals and industry to work to increase FDA‘s appropriations. It is supported by leading public health advocates, including three former HHS Secretaries and seven FDA Commissioners. The Alliance is designed to be a multi-year effort to (1) assure the FDA has sufficient resources to protect patients and consumers and (2) maintain public confidence and trust in the FDA.
Working With the National Institutes of Health (NIH)
National Commission on Digestive Diseases – In April 2006 IFFGD Nancy Norton was one of sixteen members appointed to the National Commission on Digestive Diseases (NCDD). Then Director of the NIH, Dr. Elias A. Zerhouni, established the NCDD based on the mutual interest in advancing digestive diseases research shared by the NIH and the Congress. The charge of the Commission was to create a long-range research plan for digestive diseases based on the state-of-the-science and the related NIH research portfolios. The final research plan, Opportunities and Challenges in Digestive Disease Research: Recommendations of the National Commission on Digestive Diseases contains numerous recommendations for advancing functional GI and motility disorders research and is now available.
Office of Research on Women’s Health – In March 2006 Nancy Norton was appointed by the NIH Director to a 4-year term on the eighteen member Advisory Committee on Research on Women’s Health, the advisory body of the NIH’s Office of Research on Women’s Health (ORWH). The NIH Revitalization Act of 1993 charges the Committee with advising the Director of ORWH on appropriate research activities to be undertaken by the national research institutes with respect to women’s health research. Committee members are actively involved in reviewing research priorities, the women’s health research portfolio for NIH, and the inclusion of women and minorities in clinical research.
National Institute of Diabetes and Digestive and Kidney Diseases – In October 2001, Nancy Norton was appointed by the NIH Director to a 4-year term on the National Diabetes and Digestive and Kidney Diseases Advisory Council, the advisory body of NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). This council serves to advise NIDDK about its research portfolio, and to take second level peer review of research grant applications that have been scored by initial review groups. Council members also serve as liaisons between the research communities they represent and the NIDDK.