News from IFFGD
Raising Awareness about Chronic GI Conditions in Veterans
(WASHINGTON DC, October 27, 2011) The Digestive Health Alliance (DHA, the grassroots arm of IFFGD) and the Friends of VA Medical Care and Health Research hosted a briefing for Senate and House staff members on the medcial and health needs of veterans who have served in Iraq and Afghanistan. Deployed veterans are returning how with a high incidence of functional GI disorders. Learn more.
Advocates Carry Messages to Capitol Hill
(WASHINGTON DC, June 14-15, 2011) Digestive Health Advocates traveled to their congressional offices on Capitol Hill to explain the needs of people with functional GI and motility disorders. The goal of the annual event, organized by IFFGD, is to increase research and improve care for patients with these conditions.
IFFGD Hosts International Medical Symposium
(MILWAUKEE WI, April 8-10, 2011) Clinicians, scientists, and industry leaders from around the world shared information at the 9th International Symposium on Functional GI Disorders. The multidisciplinary meeting was jointly sponsored by IFFGD and the University of Wisconsin School of Medicine and Public Health, Office of Continuing Professional Development.
Patient Needs Expressed
(WASHINGTON DC, January 10, 2011) IFFGD provided the keynote address at the Drug Information Association’s (DIA) Pharmacovigilance and Risk Management Conference. The DIA is a neutral, nonprofit, global, professional association of nearly 18,000 members who work in every facet of the discovery, development, and life cycle management of pharmaceuticals, medical devices, and related products.This event brought together federal regulators and industry representatives from around the world to discuss risk management and communication strategies throughout all phases of drug development and marketed use. While this is not traditionally a patient-centered event, IFFGD was invited to speak due to our history of supporting patients who use products which have an associated risk management program, and our ongoing advocacy to improve risk communication for patients through entities like the Food and Drug Administration.
Dane Christiansen from IFFGD spoke about the patient perspective of the impact of risk management programs. In summary, while decisions made by regulators are intended to protect patients and improve outcomes, there may be unintended consequences. It’s important to recognize those consequences, and to learn from them as we move forward. This has been the experience, most recently, of the broad IBS community with the drug Lotronex and what we have learned over the past ten years. Those lessons have taught us:
- That risk associated with the drug can be managed
- That occurrence of adverse events can be reduced or eliminated
- That patients are well informed about potential drug benefits, but ill-informed about drug risks, to the point where reference to risk may lead to avoidance
- That patients and the public need to be educated about treatment-related risk so that they can, as safely as possible, take advantage of effective therapies
- That patient risk acceptance is interwoven with severity and the burden of the disease and that understanding the patient perspective is a critical part of an effective Risk Management Plan
Inadequate risk communication leads to an over-perception of a treatment’s actual risk. Under a risk management program a product may be safe for one group of patients while being unsafe for another group of patients with the same disease. Medical professionals can ensure that the treatment is only prescribed to the appropriate group. However, the mere announcement of a risk management program for a treatment is enough to fuel a perception that the treatment presents an unacceptable risk for everyone, and individuals who could benefit from the treatment may avoid it all together.
All medicines come with risks, but those risks can generally be managed. There is a need for better education for the public, and especially patients, about risk as well as benefit. With that understanding, the informed patient will best be able to weigh risk and benefit when considering a treatment, and if risk is a concern, will seek to learn how to manage it, and thus improve outcomes.
This conference was an important opportunity to raise awareness of these issues and engage in a dialogue with industry and regulators over how to address them. Moving forward, IFFGD will continue working to ensure that innovative treatment options are developed for patients with functional GI and motility disorders, and that these treatment options are accessible for the patients who can benefit from them.
IFFGD on Capitol Hill
(WASHINGTON DC, April 12-13, 2010) Twenty-eight digestive health advocates joined with IFFGD in Washington, DC to visit congressional offices. Along with patients, family members and friends, physicians, and scientists we urged Members of Congress to support 3 critical issues:
- Introduction of the IBS and Functional GI Disorders Research and Treatment Act.
- Introduction of a Congressional Resolution recognizing April as IBS Awareness Month.
- Support of a substantial 12% increase in FY 2011 funding for the National Institutes of Health for biomedical research, including expansion of the federally supported functional GI and motility disorders research portfolio.
Continued Action for Digestive Health
(WASHINGTON DC, January 21, 2010) Over the past 2 weeks IFFGD representatives visited several more Senate and House offices in Washington DC (see our January 8, 2010 post below) seeking support for IFFGD's drafted Congressional Awareness Resolution, and IBS and Functional GI Disorders Research and Treatment Act. Offices visited included Sen. Herb Kohl of WI, Rep. Gwen Moore of the 4th District WI, and Rep. Michael Burgess of the 26th District TX. If you’re a constituent of any of these we’ve recently visited, now is a good time to contact them on behalf of these digestive health issues.
IFFGD Takes Action for Digestive Health
(WASHINGTON DC, January 8, 2010) This week IFFGD representatives in Washington DC visited two Senate offices, (Sen. McCain of AZ and Sen. Feingold of WI), and one House office (Rep. Tammy Baldwin of the 2nd District WI) to better inform them of the digestive health issues facing patients and families, and the need to support research to improve care and treatment. In particular, we currently are seeking support for a Congressional Awareness Resolution and for the IBS and Functional GI Disorders Research and Treatment Act, both drafted by IFFGD. We will continue to follow-up with these congressional leaders as well as with others on Capitol Hill.
Visit the Advocacy section on our web sites to find out more. For details about these specific issues – and what actions you can take – go to our Legislative Alerts page.
IFFGD gives Testimony to Congressional Subcommittee about Research Funding Needs
(WASHINGTON DC, May 1, 2009) IFFGD was again honored to be given the opportunity to present testimony before the U.S. House of Representatives Subcommittee on Labor, Health and Human Services, Education, and Related Agencies regarding the fiscal year 2010 Labor, Health and Human Services, and Education bill. The bill covers funding for a broad range of programs and activities affecting the lives of every American, including funding for research at the National Institutes of Health (NIH). NIH funding is of vital concern to the digestive disease community.
IFFGD Presents Research Awards
(MILWAUKEE, April 17, 2009) IFFGD honored five investigators from the U.S., Spain, and Canada with research awards. The Awards were presented at the 8th International Symposium on Functional Gastrointestinal Disorders in Milwaukee, WI. The Awards, ranging from clinical to basic research in adults and children, went to Satish Rao, MD; Emeran Mayer, MD; Javier Santos, MD; Martin Storr, MD; and Miguel Saps, MD. Find out more here: Go »
IFFGD Awards Research Grants
(MILWAUKEE, August 30, 2008) IFFGD awarded competitive Grants in the amounts of $50,000 each to three investigators. Their research is related to functional gastrointestinal and motility disorders, and neurogastroenterology. The primary investigators are Douglas R. Morgan, MD, Associate Professor of Medicine, University of North Carolina at Chapel Hill; Javier Santos, MD, PhD, Senior Staff Physician, Hospital General Universitario Valle de Hebron, Barcelona, Spain; and Miranda A.L. Van Tilburg, PhD, Research Assistant Professor, University of North Carolina at Chapel Hill. Find out more: Go »
IFFGD Capitol Hill Day
(WASHINGTON DC, April 1-2, 2008) IFFGD brought together thought leaders in the field if functional GI and motility disorders at IFFGD’s Capitol Hill Day. Participants were briefed on issues and engaged in a day of visits with their members of Congress to inform them of issues affecting the digestive health community and urge support of IFFGD’s legislative priorities. Go »
Public Policy Forum
(WASHINGTON DC, March 9-10, 2008) Representatives from IFFGD participated in the 18h Annual Public Policy Forum. The Forum was organized by the Digestive Disease National Coalition (DDNC), the leading public policy advocacy organization in the U.S. capitol for persons affected with digestive diseases. IFFGD is a member organization and Nancy Norton is a past Chair of the DDNC.
The event brought together patients, health care providers, industry representatives, lawmakers and their legislative staff for two days of educational programs, legislative updates and advocacy for digestive health issues. Participants from around the country were briefed on Federal health care legislation and policy and provided the opportunity to educate Members of Congress on issues of concern to the digestive disease community.