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Action Alerts


It takes action to get results. Each person can be an agent of change – especially when we work together. Here are some actions you can take in support of digestive health matters.

Campaign to Increase Research and Improve Care for FGIMDs-affected Soldiers Gains Ground

On Monday, August 15, 2011 the Department of Veterans Affairs (VA) implemented a new rule with broad, positive implications for the functional gastrointestinal and motility disorders (FGIMDs) community. This rule states that there is a “presumptive service connection” for veterans affected by functional gastrointestinal (GI) disorders who served in Southwest Asia during the Persian Gulf War.

This federal policy decision means that if a veteran deployed during the Persian Gulf War now suffers with a functional GI disorder, it is presumed that they developed the condition as a result of their military service for the purposes of assessing disability benefits. You can read the rule in the Federal Register here.

Functional GI disorders disproportionately impact veterans and active duty military personnel. Deployed soldiers face a heightened chance of developing a functional GI disorder due to their exposure to certain risk factors, such as infections of the GI tract and severe stress. This link is well documented in medical literature, including 2 pivotal National Academy of Sciences reports on health effects of serving in the Gulf War, which were critical in supporting the VA’s final rule.

For many years, IFFGD has been working with lawmakers and government officials to see that meaningful steps are taken to improve care and bolster research for our FGIMDs-affected veterans and active duty military personnel. VA’s recent action is a key indicator of how community advocacy and grassroots efforts to raise awareness of FGIMDs have been successful in legitimizing the seriousness of these conditions.

We remain concerned, however, that while veterans with functional GI disorders now have improved access to care and benefits, effective treatment options remain limited. This leads to a situation where veterans may be disabled by a functional GI disorder, but lack treatment options that could return them to a productive lifestyle. This treatment gap needs to be addressed, and one important way to address it is through new research led by the Department of Defense (DOD).

U.S. Senate Action Needed

On Wednesday, June 22, 2011 IFFGD was called before the Senate Defense Appropriations Subcommittee to testify on the issue of functional GI disorders and their impact on military personnel. This Subcommittee is currently crafting the Fiscal Year (FY) 2012 Defense Appropriations Bill, and Senators are considering adding “functional GI disorders” to the list of conditions eligible for study through the DOD Peer-Reviewed Medical Research Program. The DOD research program is intended to only fund research into conditions that disproportionately impact military personnel or are related to military service. View IFFGD's testimony here:

IFFGD being asked to testify sends a strong signal that the Senate is seriously considering adding “functional GI disorders” to the DOD Peer-Reviewed Program’s list of conditions eligible for study in FY 2012. However, the Senate will only follow-through on this request if individual Senators hear from their constituents (you) that they should take action on this issue. Now that VA has issued this presumptive service connection for functional GI disorders our justification for being part of DOD medical research activities has never been stronger.

You can Help

Reach out to your U.S. Senators through IFFGD in a coordinated effort to request that they “include functional GI disorders on the DOD Peer-Reviewed Medical Research Program’s eligible conditions list within FY 2012 defense appropriations legislation.” Please contact IFFGD, and indicate your willingness to do so. Thank you.

Landmark Bill (H.R. 2239) Introduced in U.S. Congress supports Functional GI and Motility Disorders (FGIMDs) Community

Your Help is Needed

(Updated August 3, 2012) Urge your Member of the U.S. House of Representatives to cosponsor the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 (H.R. 2239). 

Congressman Bill Posey from Florida, Congressman Dan Boren from Oklahoma, Congressman Ron Kind from Wisconsin, and Congresswoman Mazie K. Hirono from Hawaii are the most recent cosponsors of H.R. 2239, in support of the FGIMD community.

Functional GI and motility disorders (FGIMDs) include conditions such as dysphagia, gastroesophageal reflux disease (GERD), dyspepsia, cyclic vomiting syndrome, gastroparesis, irritable bowel syndrome (IBS), Hirschsprung's disease, chronic intestinal pseudo-obstruction, bowel incontinence, and many others. They affect the esophagus, stomach, gallbladder, small and large intestine, and anorectal areas of the body.

Your help is needed to see that this bill is passed — all you need to do is call or send an email to your House Member asking him or her to cosponsor H.R. 2239. Or you can contact IFFGD and we will help you craft a message that you can email or fax back to us and we will hand deliver it to your House Representative.

H.R. 2239 was introduced on a bipartisan basis by Representative F. James Sensenbrenner, Jr. (R-WI-5) and is cosponsored by Representatives James Moran (D-VA-8), Peter Welch (D-VT), Elton Gallegly (R-CA-24), Jesse Jackson, Jr. (D-IL-2), Tammy Baldwin (D-WI-2), Maurice Hinchey (D-NY-22), Gwen Moore (D-WI-4),  Nan Hayworth, M.D. (R-NY-19), Ed Perlmutter (D-CO-7), David E. Price (D-NC-4), Mazie Hirono (D-HI-2), Ron Kind (D-WI-3), Dan Boren (D-OK-2), and Bill Posey (R-FL-15).

This means that members of both political parties can support the bill. If any of these cosponsors are your House Representatives, please thank them. Just click here and enter your zip code, or click on their name above to go to their web site.

Background

In an effort to bolster federal research into functional gastrointestinal and motility disorders (FGIMDs) and improve the development of innovative treatment options for these conditions, IFFGD and grassroots advocates have been working with legislators to introduce the first ever federal research bill focused on FGIMDs. We are pleased to announce that as a result of this sustained congressional outreach, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 has been introduced in the U.S. House of Representatives with bill number H.R. 2239.

In addition to raising critical awareness of functional GI and motility disorders and the needs of patients, passage of this landmark legislation will . . .

  • Grant the National Institutes of Health (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 Food and Drug Administration (FDA) to improve review, approval, and oversight of treatments for FGIMDs 

Additional information on H.R. 2239, including text of the bill, can be found here: www.iffgd.org/HR2239.

The Issue

In order for H.R. 2239 to become law and for its research and treatment related provision to take effect, the bill needs more support in the U.S. House of Representatives. Your Representative can support H.R. 2239 by becoming a cosponsor. Once 218 Representatives cosponsor this bill, the U.S. House of Representatives will pass it.

However, your Representative will only become a cosponsor if YOU – their constituent – ask them to support H.R. 2239. 

Here’s What You Can Do

Most effectively, contact IFFGD and we will help you craft a message that you can email or fax back to us and we will hand deliver it to your House Representative. 

Alternatively, you can Email the Washington, DC office of your Representative. 

  • Email ­− Go to our Legislative Action Center page on iffgd.org and hit the “Take Action” button. Enter your zip code, fill in your comments in the pre-populated email, and send. 

Or you can call your Representative.

  • Call – Go to our Legislative Action Center page on iffgd.org and enter your zip code to find your legislator’s contact information and phone number.
    • Ask for the staff member who handles health issues (you will likely receive their voicemail).
      • Identify yourself as a constituent.
      • Provide some very brief background of your interest in this issue.
      • Ask that your congressman or congresswoman “Become a cosponsor of H.R. 2239 by contacting Amy Bos in the office of Congressman James Sensenbrenner, Jr.” 

If you would like to join with others in a growing grassroots network conducting coordinated congressional outreach on this issue, please contact us at dha@iffgd.org, and express your interest in advocacy.

An Important Note About the Life of a Bill

Help pass the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 (H.R. 2239)!

Members of Congress introduce thousands of bills each year. Less than 10% of the bills introduced will become law during their first Congress. A “new” Congress begins every two years in January, following November elections. If a bill has not been acted on before the end of a Congress, it will be reintroduced in the new Congress (often with a new number) and the legislative process will be started again.

It is important to support a proposal through the entire process.

Take action. Make your Representative aware of the importance of this bill and ask them to become a co-sponsor. By speaking out, you help raise critical awareness about functional GI and motility disorders and the devastating effects they can have on the patients and families who live with them every day.

When you reach out as a constituent, you put a face on those affected by functional GI and motility disorders; you add meaning to what could be just another piece of legislation coming across a desk. Your action, along with your fellow advocates, will see that this bill is passed!

National Congressional Resolution for IBS and Functional GI Disorders Research

On April 29, 2010 an IFFGD drafted Congressional Resolution was introduced expressing the sense of the U.S. House of Representatives that there is need for further study of Functional Gastrointestinal Disorders like Irritable Bowel Syndrome (IBS).

 

About the Resolution

This Congressional Resolution was crucial to educating Members of Congress about IBS and functional GI disorders. In addition to increased awareness and education on Capitol Hill, this resolution accomplishes the following:

  • Encourages the National Institutes of Health to bolster and better coordinate their research activities of IBS and other functional GI disorders (FGIDs).
  • Encourages NIH to support and increase education around IBS and other FGIDs.
  • Expresses the sense of Congress that IBS and FGID research should receive additional federal funding.
  • Encourages the Food and Drug Administration to improve the development and oversight of IBS treatments by providing critical guidance to industry that is currently lacking.
  • Calls on the Department of Defense and the Department of Veterans Affairs to address the emerging issue of veterans with IBS and other FGIDs.

When the 111th Congress adjourned toward the end of 2010, the congressional resolution calling for further study of Functional GI Disorders, House Resolution (H. Res.) 1309, expired. But that does not mean that the effort comes to an end.

This Resolution was originally introduced in April 2010 and with Congress going into recess for the summer and for the campaign season, we were left with an extremely short time table to secure Members of Congress as co-sponsors. With this in mind, we focused our legislative outreach efforts towards securing co-sponsors that could carry this important issue forward each year.  

In 2010, our efforts to build a strong core of support for H. Res. 1309 were highly successful. Out of the Resolution’s 11 cosponsors, all but 1 won re-election in November, and have returned to the House of Representatives in the 112th Congress.

We have now turned our attention toward securing introduction of the IFFGD drafted Functional GI and Motility Disorders Research Enhancement Act. Together with our grassroots supporters, we look forward to seeing it introduced in the 112th Congress during 2011.

 

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ARIZONA

If you are from Arizona, please consider contacting one of your U.S. Senator’s, John McCain (R-AZ), and informing him about Irritable Bowel Syndrome (IBS). 

In mid-December 2009, as the Senate was considering the Fiscal Year 2010 Omnibus Appropriations Act – the annual legislation which funds federal programs – Senator McCain, in the context of identifying wasteful government spending, made the following comments on the floor of the Senate: 

December 12th-“$665,000 for, I'm not making this one up, for the Cedar Sinai Medical Center in Los Angeles California for equipment and supplies for the Institute for Irritable Bowel Syndrome Research. Now, I have a lot of comments on them . . . on that issue . . . but I'll just pass so not to violate the rules of the Senate." 

December 13th-"Another (spending project) that I have been unable to describe adequately without violating the rules of the Senate. $665,000 for Cedar Sinai Medical Center in Los Angeles California for equipment and supplies for the Institute for Irritable Bowel Syndrome Research. The only thing I can say is that problem will not be reduced when people read this legislation, so there may be a need for it. The list goes on and on, it is crazy stuff."

The Issue

When prominent individuals trivialize IBS and refer to it in jest, the challenges and prejudices patients with IBS struggle to overcome only become greater obstacles. More importantly though, Senator McCain’s comments reflect a lack of awareness and sensitivity to the IBS community’s needs that is unfortunately present on Capitol Hill. Patients from Arizona can take this opportunity to reach out to Senator McCain, inform him about IBS, and help turn him into a congressional champion of the IBS community.

Take Action

IFFGD hand-delivered to Senator McCain’s Washington DC office a letter and packet of information which will help inform the Senator and his staff on this issue. We will continue to follow-up with Senator McCain and other legislators. (View a pdf copy of IFFGD's letter to Senator McCain here.)

Constituents of Senator McCain are encouraged to send him similar letters so that he understands IBS is an important issue to the people he represents and he can begin working constructively with the IBS community. To assist with your outreach, a sample letter is located below.

Please send final copies of your personalized letters by email to IFFGD, or mail to IFFGD, PO Box 170864, Milwaukee, WI 53217. We can ensure that your letters are hand-delivered to the Senator’s Health Staff in Washington, DC. We are also available to answer any questions you may have.

Sample wording for your own letter/email to Senator McCain.

[DATE]  

The Honorable John McCain
241 Russell Senate Office Building
Washington, DC 20510

RE: Healthcare Issue - IBS

Dear Senator McCain:

Thank you for your continued leadership on healthcare issues.

[Tell your story as an IBS patient.]

I hope in the future you will work to raise awareness of IBS as the serious public health concern that it is. There are numerous positive opportunities to call attention to IBS in Congress, such as working to advance the IBS and Functional GI Disorders Research and Treatment Act or lending your support to the resolution recognizing April as IBS Awareness Month. In addition, I hope you will work with your colleagues in congress to bolster important federally supported IBS research efforts and improve treatment options for IBS patients.

Thank you for your time and I have included my contact information below if you are interested in responding. 

Sincerely,

[Signature] 
[Name] 
[Address] 
[Contact Information]

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Last modified on August 3, 2012 at 08:48:52 AM