Looking Back at 2012 and 2013
Year in Review – Commitment to the Future
For more than two decades, IFFGD has worked to inform, assist, and support people affected by functional gastrointestinal (GI) and motility disorders. We are grateful to receive support for this mission from the broad functional GI and motility disorders community, including patients, physicians, donors, advocates, policy makers, and others. It is a diverse community and one that shares a common goal – to see patient care improved.
IFFGD addresses the needs of the digestive health community. We have always believed, as the Institute of Medicine Research Roundtable once said:
- that quality of care depends on the quality of information underlying health care decisions,
- that all stakeholders draw upon, as well as invest in, this information enterprise, and
- that patients must be engaged as essential stakeholders.
At IFFGD, we are committed to these principles as we work to provide education, raise awareness, and support research. Each of these plays a vital role in the ongoing process toward the goals to increase understanding and improve health outcomes. These goals are attainable when we all work together.
Our grassroots organization, the Digestive Health Alliance (DHA), was created for this purpose. DHA is a community of individuals whose lives are affected by functional GI and motility disorders. Through coordinated awareness, advocacy, and fundraising activities, we work together to inspire change.
IFFGD and DHA speak on behalf of the millions of individuals and families worldwide who are living with the effects of these complex digestive conditions. Here is a look at our activities for the last 18 months:
Awareness and Advocacy
Awareness and advocacy often go together. They involve outreach to the public at large, employers, educators, and policy makers to increase understanding about functional GI and motility disorders.
Advocacy in Action
Advocacy is an important part of raising awareness. It means taking action to educate policy makers who control funding or in other ways significantly influence the activities of The National Institutes of Health (NIH), U.S. Food and Drug Administration (FDA), and other health and human services agencies. Policy makers will respond to constituent concerns – but only if those concerns are brought to their attention and explained.
The FGIMD Research Enhancement Act
Throughout 2012 and 2013 the digestive health community asked members of Congress to sign on to The Functional Gastrointestinal and Motility Disorders Research Enhancement Act. We were successful in having this landmark bill introduced in the U.S. House of Representatives in the 112th Congress, which ended on January 3, 2013. In the new 113th Congress, the bill was reintroduced in the House as H.R. 842. As members heard from their constituents, they learned about these conditions and the needs of those affected. If you have not already done so, we encourage you to go to our web page at www.IFFGD.org/hr842action to send a message to your congressperson in support of this legislation.
In addition to raising critical awareness of functional GI and motility disorders and the needs of stakeholders, passage of this bill in the House and Senate will:
- Grant NIH new authority to initiate innovative research projects
- Establish a Centers of Excellence Program in this area
- Coordinate research activities with the Department of Defense and the Veterans Administration when appropriate
- Call on the FDA to improve review, approval, and oversight of treatments for functional GI and motility disorders
Advocates on Capitol Hill
Together we continue to speak out for increased government funding to advance the science of functional GI and motility disorders. In June we hosted members of DHA for Advocacy Day in Washington, DC. Digestive health advocates from six states went to Capitol Hill to explain to their congressional offices the importance of research and improved the treatments.
Patients and family members shared firsthand accounts with congressional offices, demonstrating how essential support is for The Functional GI and Motility Disorders Research Enhancement Act (H.R. 842). This is a ground-breaking piece of legislation that will expand research at NIH and call on the FDA to improve the review, approval, and oversight of treatments for functional GI and motility disorders.
After sharing their personal experiences with the congressional offices, the DHA advocates left the Capitol feeling empowered and hopeful they had made a difference. It soon became evident that they had. Since our trip to DC, five Representatives have signed on to support this landmark bill and we are hopeful that H.R. 842 will be introduced in the Senate.
Support for Veterans
During IBS Awareness Month we focused on veterans, many of whom are finding themselves faced with functional gastrointestinal disorders after returning from service in Gulf War regions. Our press release, Turning Attention to Returning Vets During IBS Awareness Month, focused on the fact that veterans and active military personnel disproportionately represent those suffering from IBS, dyspepsia, and other functional GI disorders, due to their exposure to increased risk factors.
In 2012 IFFGD again testified before the Senate Defense Appropriations Subcommittee asking that functional GI disorders be included on the list of conditions eligible for study through the Department of Defense’s Gulf War Illness Research Program. For some Senators, it was the first they heard of the association between functional GI disorders and Gulf War veterans, and the first they were made aware of the IOM report, Gulf War and Health Volume 8: Update of Health Effects of Serving in the Gulf War. In fiscal year 2012 funds were dedicated specifically for Gulf War Illness in the Department of Defense research program. The funding for the Gulf War Illness Research Program was renewed in fiscal year 2013 and functional GI disorders were once again included.
Patient-Focused Drug Development Initiative (PDUFA-V)
In October 2012 we provided our written statement to the FDA in support of including irritable bowel syndrome (IBS) for specific consideration through the Patient-Focused Drug Development initiative as part of the Prescription Drug User Fee Act V (PDUFA-V) authorization. In April 2013, the FDA announced that three functional GI and motility disorders – IBS, gastroparesis, and GERD with persistent regurgitation symptoms on proton pump inhibitors – were selected as disease areas to be addressed. Our IBS survey publications have provided a framework for seeking to better understand severity, need, and risk-benefit behavior, incorporating the patient perspective, as referenced by the FDA as they publically launched this initiative.
U.S. National Health Observances Calendar
Over fifteen years ago, IFFGD designated IBS Awareness Month in April and GERD Awareness Week as the week of Thanksgiving in November. These two special events are listed on the U.S. Health Observances Calendar. Many other groups and individuals use these times to sponsor health events and stimulate awareness of these health issues.
DDNC Public Policy Forum
On March 3–4, 2013 we took part in the 23rd Annual Digestive Disease National Coalition (DDNC) Public Policy Forum in Washington, DC. We joined with patients, health care providers, industry representatives, lawmakers, and their legislative staff for two days of legislative updates and advocacy activities. This event provided us with another opportunity to meet with Members of Congress from across the nation, and urge their support on issues of concern to the digestive disease community, including scientific research, patient care, and prevention.
IFFGD Legislative Agenda for 2013
We invite your participation in supporting our legislative agenda, which will continue into the upcoming year:
- Support for The Functional GI and Motility Disorders Research Enhancement Act (H.R. 842)
- Support for funding NIH at a level of at least $32 billion annually
- Support for funding the Gulf War Illness Research Program
- Support for the National Pediatric Research Network Act (H.R. 225/S. 424), which calls on NIH to establish 20 pediatric
- research consortia
Professional Meetings and Alliances
Throughout the year IFFGD participates in major medical meetings to make reliable information about functional GI and motility disorders available to health professionals, as well as to discuss issues surrounding the diagnosis and treatment of these chronic conditions. In 2012 and 2013, we attended and exhibited at meetings including:
- American College of Gastroenterology
- American Neurogastroenterology and Motility Society
- Digestive Disease Week (DDW)
- Rome Foundation Annual Meeting at DDW
- North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition
- The University of North Carolina (UNC) School of Medicine: Expert Update on Treatments for Functional GI Disorders – A Symposium for Patients
Through DHA, members of the digestive health community are coming together and stepping up to fundraise for research and donating proceeds to IFFGD. Here are a few fundraising highlights from 2013, some of which directly funded our 2013 Gastroparesis Research Grants and made these special gifts possible.
Lonnie has an ambitious goal of raising $20,000 for gastroparesis research and he’s more than half way there! Throughout the year, Lonnie hosts events in his community – golf outings, bowl-a-thons, restaurant events, you name it – all in order to raise awareness for gastroparesis and bring in money for research for increased and improved treatments for the condition. Lonnie’s wife Cheryl Aaron passed away in 2012 as a result of gastroparesis and he started the Cheryl Aaron Memorial Fund in her honor. Lonnie is dedicated to making a difference for this community. He joined us for Advocacy Day on Capitol Hill and works tirelessly hosting fundraising events and serving as an awareness ambassador all year long. You can support Lonnie in reaching his goal by visiting www.dha.org/dw/fundraisers/1027.
For the second year in a row Stephanie, a DHA champion who is inspiring others with her positive attitude and her pursuit to raise funds for gastroparesis research, hosted the Annual Awareness Walk for Gastroparesis and Digestive Health. On September 7, 2013, Stephanie, together with her family and friends, took to the trails in Bellingham, WA, wearing their green awareness t-shirts and spreading the word about why research for gastroparesis is so important. Stephanie hopes to expand the Awareness Walk and inspire others to host walks across the country in the future. Read more about Stephanie at www.dha.org/raiseawareness/stories/627/dha-champion-stephanie.
Geri came to DHA this year and hit the ground running, literally. This fall Geri ran a half marathon to raise money and awareness for the need for gastroparesis research. By sharing the link to her online fundraiser with friends, family, co-workers, and other members of the digestive health community, Geri surpassed her fundraising goal of $1,310, inspiring gifts totaling more than $1,430! See Geri’s fundraising page and successes at www.dha.org/dw/fundraisers/1044.
Support of Research
DHA Children’s GI Research Network
During the past year, thanks to financial contributions from donors, we have been able to continue to support the DHA Children’s GI Research Network. By pooling resources and data, the network is working to improve diagnosis and treatment of functional GI and motility disorders in children. It is the only pediatric consortium addressing these conditions. If the National Pediatric Research Network Act (H.R. 225/S. 424) is passed, this network will be well positioned to apply for NIH support. The 7 centers currently involved are:
- Nationwide Children’s Hospital, Columbus, OH
- Children’s Hospital, Louisiana State University, New Orleans, LA
- Connecticut Children’s Hospital, Hartford, CT
- Children’s Hospital of Wisconsin, Milwaukee, WI
- Children’s Memorial Hospital, Chicago, IL
- Children’s Hospital Boston, Boston, MA
- Emma Children’s Hospital, Amsterdam, The Netherlands
2013 IFFGD Research Awards
Continuing our commitment to research, in April we presented IFFGD Research Awards to eight active investigators whose work is advancing the understanding of functional GI and motility disorders in adults and children. The following eight researchers were recognized at our symposium:
- Enrico Corazziari, M.D., Universitá La Sapienze, Rome, Italy, Senior Clinical Investigator
- Jan Tack, M.D., Ph.D., University Hospitals Leuven, Leuven, Belgium, Senior Clinical Investigator
- Gary Mawe, Ph.D., University of Vermont, Burlington, VT, Senior Basic Investigator
- L. Ashley Blackshaw, Ph.D., Queen Mary University, London, England, Senior Basic Investigator
- Carlo Di Lorenzo, M.D., The Ohio State University, Columbus, OH, Senior Pediatric Investigator
- Niranga Manjuri Devanarayana, M.D., University of Kelaniya, Sri Lanka, Junior Pediatric Investigator
- Lukas Van Oudenhove, Ph.D., University of Leuven, Leuven, Belgium, Junior Clinical Investigator
- Muriel Larauche, Ph.D., University of California, Los Angeles, Los Angeles, CA, Junior Basic Investigator
2013 IFFGD Research Grants
Idiopathic Gastroparesis Research Grant Selection Committee Members:
Kenneth L. Koch, M.D.
Henry P. Parkman, M.D.
P. Jay Pasricha, M.D.
J. Patrick Waring, M.D.
William E. Whitehead, Ph.D.,
Investigators from across the globe answered our call for applications for three research grants to advance the understanding of idiopathic gastroparesis. These grants were made possible by donations made specifically in the interest of advancing research of this poorly understood disorder, including donations from several DHA fundraisers. The applications have been sent to a selection committee made up of leaders in the field for review.
In this era of federal budget constraints, support for seed grants is becoming increasingly difficult. We are committed to helping fill the gap, and also promoting interest and opportunity in the field of functional GI and motility disorders. We look forward to presenting these grants in early 2014.
IFFGD provides educational resources and ongoing support to people looking for help with functional GI and motility disorders. People contact our office – by mail, phone, email, and online – seeking reliable information and answers to questions that help them better understand their conditions, find care, and manage symptoms most effectively over a long term.
We maintain 10 different websites that provide resources to those looking for credible information and community support for different aspects of digestive health:
- DHA.org – this site was redesigned and reprogrammed this year to create a more interactive and community-friendly environment for those looking to get involved
Our social media presence is active and growing. Join the discussion at:
Earlier this year we launched an e-newsletter, Digestive Health Monthly, sharing information about functional GI and motility disorders, opportunities to get involved, as well as updates on the progress our collective efforts are making toward improving treatments and creating hope for those living with these conditions. Even if you’re a member of IFFGD, you’re not automatically subscribed to the e-newsletter. To make sure you’re getting all of our latest news, go to IFFGD.org and sign up for email alerts in the top right corner of the webpage.
We produce publications aimed at educating, increasing awareness, enhancing the doctor-patient relationship, improving outcomes, and mobilizing the patient community to take action around areas of interest. Our Publications Library contains more than 250 fact sheets and brochures about various aspects of chronic digestive disorders. Digestive Health Matters, our official publication, provides practical information and news about digestive health and community events.
Topics are chosen to:
- inform about general health issues
- explain news about research and new treatments
- empower patients and families to participate in their own health and well-being
During the past year we have produced several new publications on topics including bloating and distension, sleep and GERD, sphincter of Oddi dysfunction, and scleroderma. These materials are created to meet the needs expressed by our diverse audience and engage various stakeholders, in keeping with our ultimate goal of improving care.
Treatment Related Risk, Benefit, and Access in Functional GI and Motility Disorders
Over the years we have provided information about the experiences and needs of patients with functional GI and motility disorders, along with the various stakeholders who serve them. For example, results of our earlier surveys IBS in the Real World and IBS Patients: Their Illness Experience and Unmet Needs have contributed to making these conditions a growing part of public dialogue and consciousness.
In 2012 we published Treatment Related Risk, Benefit, and Access in Functional GI and Motility Disorders, which further explores our survey data. Looking at the experience of the IBS community with the drug alosetron as an example, this publication reflects upon how treatment delivery can break down, as well as actions that can help ensure that safer, effective treatments are made available to patients in need.
Short Bowel Syndrome (SBS)
Treating and managing short bowel syndrome is challenging for all parties concerned. This publication was new in 2013 and is intended to help people with the condition, as well as their family members and caregivers, understand why symptoms occur and provide an overview of management strategies.
Gastroparesis is poorly understood. More awareness is needed about recognizing the condition. Our gastroparesis brochure, new this year, addresses frequently asked questions and provides an overview to help patients and family members understand gastroparesis and how it may be treated and managed.
Irritable Bowel Syndrome (IBS)
This year we updated and revised our irritable bowel syndrome (IBS) brochure and also created a companion document to address commonly asked questions about the disorder. Both publications can be used to help understand the basics of the condition, as well as treatment options to best manage symptoms.
The 10th International Symposium on Functional Gastrointestinal Disorders took place in April 2013 in Milwaukee. The biennial event represents 20 years of support for multi-disciplinary professional education in the field of functional GI and motility disorders. The meeting is jointly sponsored by the University of Wisconsin School of Medicine and Public Health, Office of Continuing Professional Development in Medicine and Public Health; and by IFFGD.
This year nearly 400 physicians, psychologists, researchers, fellows, physicians assistants, and other health care professionals came together to review advances in the field, network with peers, and discuss best practices for caring for patients living with these chronic conditions.
Audio recordings from selected general sessions at the symposium on the following topics are available for download on our website at www.iffgd.org/site/news-events/events/professional-symposia/2013-symposium/audio.
As we celebrate all that was accomplished for the digestive health community this past year, we also look to the future. Education, awareness, advocacy, fundraising, and research continue to be areas where IFFGD and DHA are focusing our efforts.
IFFGD will continue to work with the FDA on increasing patient access to treatments for functional GI and motility disorders. Our gastroparesis research grants will be awarded in 2014 and with support from people like you, we plan to continue to fund research grants and awards. We will continue to represent the patient population at professional meetings. Currently we are working on a mobile app where individuals will be able to access to our information on IBS with constipation and chronic constipation from their smartphones and tablets. We are anxious to see what kinds of activities and fundraisers members of DHA have planned for the year and can’t wait to bring more voices to Capitol Hill for our next Advocacy Day in Washington, DC There are many good things to come and we look forward to sharing them with all of you.
Whether through raising awareness, advocating on behalf of patients, or supporting research to advance science, we are committed to the work that we do together. Thank you for your ongoing support of our mission and for helping us work to improve care for all those whose lives are impacted by functional GI and motility disorders.