IBS Research and Treatment Act
Support the Irritable Bowel Syndrome Research and Treatment Act
(Update: June 8, 2008) Representatives of IFFGD have been meeting with U.S. Congressional representatives seeking support for introduction of the Irritable Bowel Syndrome Research and Treatment Act.
This began on April 1-2, 2008 when 23 individuals representing IFFGD – patients, staff, physicians, nurses and scientists – visited 37 Senate and House congressional offices in Washington, DC on behalf of individuals with IBS and functional bowel disorders. Among the issues discussed, we urged support for a proposed Irritable Bowel Syndrome Research and Treatment Act. The elements of this Act will go far in improving the lives of those with IBS. In addition to expanding the IBS research portfolio at NIH, key elements of the Act include developing centers to conduct research and train health care providers on IBS, and facilitate improved public awareness and professional understanding of IBS.
You can help make this happen. We need congressional support to introduce this Act as a bill. Your representatives are waiting to hear from you, their constituents, to confirm the need for this legislation.
If you live in one of the following areas, please contact your representatives. Ask them to support introduction of the Irritable Bowel Syndrome Research and Treatment Act, which was presented to them by IFFGD on April 2, 2008. Confirm the need for improved IBS treatments. Take action.
At this point we are working with selected legislators to introduce the Act as a bill. Once it is introduced, it will require support from the Senators and Representatives from all States and districts.
What You Can Do
Your representatives just need to hear from their own constituents that IBS is an important issue. You do not need to discuss the merits of the Act. Just communicate the impact of IBS on your life (or your patients' lives); that you are searching for treatments; that only increased research can discover new answers; and the fact that, as a constituent, you need your legislator to act for you in this matter.
Your representatives welcome hearing from you. A brief phone call is all that is needed – speak to a staff member or simply leave a message (be sure to record your name and zip code). If you would rather send an email, go to www.congress.org and enter your zip code. Follow the links to the email pages.
Here is a means to take meaningful action to help improve the lives of everyone affected by IBS. It will only take a few minutes of time to take action, but will have a lasting impact. Please make your voice heard now. Thank you.
Find additional background information here:
Arizona
Office of Senator John McCain
- Phoenix: 602-952-2410
- Tempe: 480-897-6289
- Tucson: 520-670-6334
- Washington, DC: ATTN: Talal Mir: 202-224-2235
Office of Congressman Harry Mitchell (5th District)
- Scottsdale: 480-946-2411
- Washington, DC: ATTN: Carrie Solomon: 202-225-2190
California
Office of Senator Barbara Boxer
- San Francisco: 415-403-0100
- Los Angeles: 213-894-5000
- Sacramento: 916-448-2787
- San Diego: 619-239-3884
- Washington, DC: ATTN: Carina Armenta: 202-224-3553
Florida
Office of Senator Bill Nelson
- Toll Free for Florida residents: 888-671-4091
- Washington, DC: ATTN: Madeline Otto: 202-224-5274
Office of Congressman Cliff Stearns (6th District)
- Ocala: 352-351-8777
- Gainesville: 352-337-0003
- Washington, DC: ATTN: Mike Anway: 202-225-5744
Georgia
Office of Senator Johnny Isakson
- Atlanta: 770-661-0999
- Washington, DC: ATTN: Francie Powers: 202-224-3643
Office of Senator Saxby Chambliss
- Atlanta: 770-763-9090
- Washington, DC: ATTN: Robert Bovard: 202-224-3521
Office of Congressman Nathan Deal (9th District)
- Gainesville: 770-535-2592
- Dalton: 706-226-5320
- LaFayette: 706-638-7042
- Washington, DC: ATTN: John Little: 202-225-5211
Illinois
Office of Senator Richard Durbin
- Chicago: 312-353-4952
- Springfield: 217-492-4062
- Marion: 618-998-8812
- Washington, DC: ATTN: Nida Shakir: 202-224-2152
Office of Senator Barack Obama
- Toll free for IL residents: 866-445-2520
- Washington, DC: ATTN: Lissette Alvarado: 202-224-2854
Kentucky
Office of Congressman Edward Whitfield (1st District)
- Toll free for Kentucky residents: 800-328-5629)
- Washington, DC: ATTN: Jeff Mortier: 202-225-3115
Maryland
Office of Senator Barbara Mikulski
- Baltimore: 410-962-4510
- Washington, DC: ATTN: Mona Shah: 202-224-4354
Massachusetts
Office of Senator Edward Kennedy
- Toll free for Massachusetts residents: 877-472-9014
- Washington, DC: ATTN: Laura Kwinn: 202-224-4543
Office of Senator John Kerry
- Boston: 617-565-8519
- Springfield: 413-785-4610
- Fall River: 508-677-0522
- Washington, DC: ATTN: Aaron Jenkins: 202-224-2742
Office of Congressman Stephen Lynch (9th District)
- Boston: 617-428-2000
- Brockton: 508-586-5555
- Washington, DC: ATTN: Peter Sally: 202-225-8273
Michigan
Office of Senator Debbie Stabenow
- Lansing: 517-203-1760
- Washington, DC: ATTN: Carol Burns: 202-224-4822
Office of Congressman John Dingell (15th District)
- Dearborn: 313-278-2936
- Monroe: 734-243-1849
- Ypsilanti: 734-481-1100
- Washington, DC: ATTN: Kim Trzeciak: 202-225-4071
Missouri
Office of Senator Christopher Bond
- Kansas City: 816-471-7141
- St. Louis: 314-725-4484
- Washington, DC: ATTN: Julie Jolly: 202-224-5721
Office of Congressman Russ Carnahan (3rd District)
- St. Louis: 314-962-1523
- Jefferson County: 636-937-8039
- Washington, DC: ATTN: Jill Allen Murray: 202-225-2671
New York
Office of Senator Charles Schumer
- New York City: 212-486-4430
- Buffalo: 716-846-4111
- Washington, DC: ATTN: Stacey Warady: 202-224-6542
Office of Senator Hillary Clinton
- Buffalo/Western New York: 716-854-9725
- New York City: 212-688-6262
- Washington, DC: ATTN: Kathleen Klink, MD: 202-224-4451
Office of Congressman Charles Rangel (15th District)
- New York: 212-663-3900
- Washington, DC: ATTN: Athena Abdullah: 202-225-4365
North Carolina
Office of Senator Elizabeth Dole
- Toll Free for North Carolina residents: 866-420-6083
- Washington, DC: ATTN: Casey Murphy: 202-224-6342
Office of Senator Richard Burr
- Toll free for North Carolina residents: 800-685-8916)
- Washington, DC: ATTN: Jen Rubino: 202-224-3154
Office of Congressman David Price (4th District)
- Durham: 919-688-3004
- Raleigh: 919-859-5999
- Chapel Hill: 919-967-7924
- Washington, DC: ATTN: Teresa Saunders: 202-225-1784
Office of Congresswoman Sue Myrick (9th District)
- Charlotte: 704-362-1060
- Gastonia: 704-861-1976
- Washington, DC: ATTN: Sarah Hale: 202-225-1976
Ohio
Office of Senator Sherrod Brown
- Toll Free for Ohio residents: 888-896-OHIO (6446)
- Washington, DC: ATTN: David Mitchell or Roberta Downing: 202-224-2315
Office of Congressman Patrick Tiberi (12th District)
- Columbus: 614-523-2555
- Washington, DC: ATTN: Lindsay Vogtsberger: 202-225-5355
Office of Congresswoman Deborah Pryce (15th District)
- Columbus: 614-469-5614
- Washington, DC: ATTN: Lauren Neff: 202-225-2015
Pennsylvania
Office of Senator Arlen Specter
- Philadelphia: 215-597-7200
- Pittsburgh: 412-644-3400
- Washington, DC: ATTN: Jesse Brenton: 202-224-4254
Office of Congressman Tim Holden (17th District)
- Berks County: 610-921-3502
- Dauphin/Perry County: 717-234-5904
- Lebanon County: 717-270-1395
- Schuylkill County: 570-622-4212
- Washington, DC: ATTN: Courtney Williams: 202-225-5546
Office of Congressman Tim Murphy (18th District)
- Pittsburgh: 412-344-5583
- Westmoreland District: 724-850-7312
- Washington, DC: ATTN: Brendan Belair: 202-225-2301
Texas
Office of Congressman Michael Burgess (26th District)
- Lewisville District: 972-434-9700
- Ft. Worth District: 817-531-8454
- Washington, DC: ATTN: Josh Martin: 202-225-7772
Washington
Office of Senator Patty Murray
- Seattle: 206-553-5545
- Tacoma: 253-572-3636
- Washington, DC: ATTN: Stephanie Arnold: 202-224-2621
Office of Congressman Jay Inslee (1st District)
- Shoreline: 206-361-0233
- Poulsbo: 360-598-2342
- Washington, DC: ATTN: Nick Shipley: 202-225-6311
Wisconsin
Office of Senator Herb Kohl
- Toll free for Wisconsin residents: 800-247-5645
- Washington, DC: ATTN: Nicole Brown: 202-224-5653
Office of Senator Russ Feingold
- Madison/Middleton: 608-828-1200
- Milwaukee: 414-276-7282
- Wausau: 715-848-5660
- Washington, DC: ATTN: Trisha Schmidt: 202-224-5323
Office of Congresswoman Tammy Baldwin (2nd District)
- Madison: 608-258-9800
- Beloit: 608-362-2800
- Washington, DC: ATTN: Elizabeth Pika: 202-225-2906
Wyoming
Office of Senator Mike Enzi
- Gillette: 307-682-6268
- Cheyenne: 307-772-2477
- Cody: 307-527-9444
- Jackson: 307-739-9507
- Casper: 307-261-6572
- Washington, DC: ATTN: David Schmickel: 202-224-0623
Additional Background Information
It is estimated that between 25 and 45 million Americans suffer with irritable bowel syndrome (IBS), ranging from experiencing mild inconvenience to severe disability. IBS is one of the most common causes of work absenteeism and compounding this lost productivity, health care costs for IBS are approximately $20 billion annually. In addition to the physical pain and overall discomfort caused by IBS, uncertainty over bowel function can cause individuals to completely withdraw from social settings, and even fear leaving home without knowledge of available toilet facilities.
Despite the prevalence and high costs associated with treating IBS, little is currently known about its underlying causes and explanatory mechanisms. Additionally, a lack of public information coupled with prevailing social attitudes often causes individuals to hide their condition and suffer in silence. Currently, few treatments exist and those available focus on addressing the symptoms of IBS rather than the cause. Furthermore, the lack of clear guidelines for designing IBS treatment protocols at the Food and Drug Administration (FDA) has industry investing few resources in developing innovative therapies.
To improve the lives of Americans suffering from IBS, the IFFGD is urging members of Congress to champion the Irritable Bowel Syndrome Research and Treatment Act.
The Irritable Bowel Syndrome Research and Treatment Act Seeks To:
- Expand the IBS research portfolio at the National Institute of Diabetes and Digestive and Kidney Diseases, and improve coordination of IBS research activities conducted by other entities at the National Institutes of Health.
- Establish a data system to gain a better understanding of patient populations and identify at risk individuals.
- Establish the development and operation of centers to conduct research and training to health care providers on irritable bowel syndrome.
- Establish an IBS information clearinghouse to improve public awareness and professional understanding.
- Provide support for training new investigators who specialize in IBS.
- Facilitate creation and implementation of a guidance document by the FDA for industry regarding the development of IBS treatments, and the consequences of adverse events that may occur during post-market surveillance.
The Process of Moving an Act to a Bill to Authorization and Funding
The process of moving the IBS Research and Treatment Act from an idea to funded legislation involves many steps, and many people. In summary, it will include:
- Draft proposed legislation (Completed by IFFGD)
- Seek bipartisan co-sponsorship and support of the Act from selected Senators and Representatives who may champion the issue (We are currently here in this process)
- Introduction of the Act in Committees and Subcommittees with jurisdiction over the issue to support validity of a Bill
- Refer the Bill to the full House and Senate
- Bring the Bill before the full House and Senate for a vote
- Send passed Bill to President to sign into law
- Once legislation is passed, continue efforts to ensure it is properly funded in annual appropriations bills
This is a process that takes time, effort, and vigilance. Every step in this process involves engagement and education efforts by supporters. IFFGD will continue to lead this effort. We must have your help. We will meet with legislators – but they will also need to hear from you so that they understand that improved efforts are needed for research and treatment on behalf of their constituents affected by IBS. Please take a few moments to be involved in this effort. Watch this web page for updates and take action. Thank you.