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.

• National Research and Treatment Act for Functional GI Disorders
• Congressional Resolution for IBS Awareness
• Arizona - Inform Senator McCain
• North Carolina - Enlist Support of Your Senators
• Wisconsin - Restroom Access Act

National Research and Treatment Act

Please contact your Members of Congress and urge them to become original cosponsors of the IBS and Functional GI Disorders Research and Treatment Act. 

The IBS and Functional GI Disorders (FGIDs) Research and Treatment Act is an invaluable piece of legislation to the IBS/FGID patient community which would:

• Expand the research portfolio for IBS and FGIDs at the National Institute of Diabetes and Digestive and Kidney Diseases, and improve coordination of 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 IBS and FGIDs.
• Establish an IBS and FGIDs information clearinghouse to improve public awareness and professional understanding.
• Provide support for training new investigators who specialize in IBS and FGIDs.
• Facilitate creation and implementation of a guidance document by the FDA for industry regarding the development of treatments, and the consequences of adverse events that may occur during post-market surveillance. 

The Issue

Currently, there are legislators in both the House and Senate who have expressed interest in introducing this bill. However, they would like to see more support and particularly strong bipartisan support in Congress before they move forward. By contacting your Representative and your two Senators and asking them to sign-on to this bill as an “original cosponsor” we can build the necessary critical mass of support to ensure that this legislation is introduced. 

Take Action

IBS and FGIDs affected individuals are encouraged to send letters to their elected officials which urge them to declare their support for the IBS and Functional GI Disorders Research and Treatment Act by signing-on as an original cosponsor. 

• View a draft copy of the bill here (pdf) 
• View a sample letter here, which you can use to assist with this outreach 

If you need to identify your elected officials or their contact information, please go to www.congress.org and simply enter your zip code where prompted.   

Please send final copies of your personalized letters to the IFFGD’s Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217. Dane can ensure that your letters are hand-delivered to your representatives in Washington, DC. He is also available to answer any questions you may have.

Sample wording for your own letter/email to your representatives.

[DATE]  

The Honorable [First and Last name of the Senator/Congressperson]
[Washington, DC Office Address] 

RE: Healthcare Issue

Dear Senator/Congressperson [Last Name]: 

Thank you for your continued leadership on healthcare issues.

I write you today as a constituent and a patient who suffers with a Functional Gastrointestinal Disorder (FGID). I wanted to let you know that the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has drafted a unique piece of legislation designed to improve public health outcomes for FGID patients, the Irritable Bowel Syndrome (IBS) and Functional GI Disorder Research and Treatment Act. I hope you will consider supporting this legislation and ensuring its introduction by becoming an original cosponsor.

[Tell your story as an individual affected by a functional GI disorder.]

IFFGD is a nonprofit patient-driven organization dedicated to assisting individuals affected by FGIDs by providing education and support, and advancing critical research. Despite the prevalence and high direct and indirect costs associated with IBS and other FGIDs, little is currently known about underlying causes. Few effective treatments exist. Furthermore, the lack of clear guidelines for designing treatment protocols at the Food and Drug Administration has industry investing few resources in developing innovative therapies. The IBS and FGIDs Research and Treatment Act works to directly address these persistent issues. 

Thank you again for your time and your consideration of my request. If you would like additional information on the IBS and FGID Research and Treatment Act, such as the other Members of Congress who are interested in taking a leadership role in this effort, please contact the IFFGD’s Development coordinator, Dane Christiansen at dchristiansen@iffgd.org. I have included my contact information below so that you may update me on any action you plan to take in regards to my request.

Sincerely,

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

National Congressional Resolution

Please contact your Members of Congress and urge them to support introduction of the Congressional Resolution recognizing April as IBS Awareness Month. 

A Congressional Resolution recognizing April as IBS Awareness Month is crucial to educating Members of Congress about IBS. In addition to increased awareness and education on Capitol Hill, this resolution would accomplish the following:

• Encourage the National Institutes of Health to bolster and better coordinate their IBS research activities.
• Express the sense of Congress that IBS research should receive additional federal funding.
• Encourage the Food and Drug Administration to improve the development and oversight of IBS treatments by providing critical guidance to industry that is currently lacking.
• Call on the Department of Defense and the Department of Veterans Affairs to address the emerging issue of veterans with IBS.

The Issue

Many Members of Congress are unaware of IBS and the issues affecting IBS patients. This lack of awareness on Capitol Hill makes it difficult for the IBS community to advocate for certain legislative priorities, such as increased research funding. A Congressional Resolution recognizing April as IBS Awareness Month would call legislators' attention to IBS and better educate them about IBS. Furthermore, as the number of lawmakers who cosponsor this resolution increases it will send a signal across Congress that the IBS community has a powerful voice and their legislative issues should be a major priority.

Take Action 

While this Resolution has been drafted, and you can view a draft copy (pdf) here, it still needs to be introduced in the House and Senate. This means that one Representative and one Senator need to stand up for the IBS community by agreeing to introduce this resolution in their respective chambers.

Nothing motivates a lawmaker into action as much as hearing from the constituents. Please consider using the sample letter below to reach out to your Members of Congress and ask them to introduce this important Resolution. To identify your Members of Congress and their contact information, simply go to www.congress.org and enter your zip code.

Please send final copies of your personalized letters to the IFFGD’s Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217. Dane can ensure that your letters are hand-delivered to your representatives in Washington, DC. He is also available to answer any questions you may have.

Sample wording for your own letter/email to your representatives.

[DATE]

The Honorable [First and Last name of the Senator/Congressperson]
[Washington, DC Office Address]

Dear Senator/Congressperson [Last Name]:

Thank you for your continued leadership on healthcare issues.

I write you today as a constituent and as a patient who suffers with Irritable Bowel Syndrome (IBS) to ask that you consider introducing the attached congressional resolution recognizing April as IBS Awareness Month, which was drafted by the International Foundation for Functional Gastrointestinal Disorders (IFFGD).

[Tell you story as an IBS patient.]

Silence is the greatest obstacle in the ongoing effort to properly diagnosis, combat, and ultimately cure functional gastrointestinal disorders. IBS is a serious, painful, and debilitating condition, but in part due to the stigma surrounding many of the symptoms, it is rarely discussed and little is known. Your support for this resolution will help bring IBS out of the shadows, and send a clear signal to quietly suffering patients that Congress is aware of their unique needs and taking meaningful action to address them.

Please help raise much needed awareness of IBS and become a champion of the IBS community by introducing or becoming an initial cosponsor of this congressional resolution recognizing April as IBS Awareness Month. The IFFGD’s Development Coordinator, Dane Christiansen (dchristiansen@iffgd.org) is available to provide you with any additional information you may need or answer any questions you may have.

Thank you for your time and your consideration of my request. I have included my contact information below so that you may keep me informed of any action you take in this regard.

Sincerely,

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

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, 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 12^th-“$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 13^th-"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 to the IFFGD’s Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217. Dane can ensure that your letters are hand-delivered to the Senator’s Health Staff in Washington, DC. He is 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]

NORTH CAROLINA

Functional GI Disorders Patients, Friends or Family Members, Enlist Support of Your U.S. Senators.

The IBS and Functional GI Disorders Research and Treatment Act is an invaluable piece of legislation for the Functional GI Disorders (FGID) patient community which would: 

• Expand the research portfolio for IBS and FGIDs at the National Institute of Diabetes and Digestive and Kidney Diseases, and improve coordination of 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 IBS and FGIDs.
• Establish an IBS and FGIDs information clearinghouse to improve public awareness and professional understanding.
• Provide support for training new investigators who specialize in IBS and FGIDs.
• Facilitate creation and implementation of a guidance document by the FDA for industry regarding the development of treatments, and the consequences of adverse events that may occur during post-market surveillance. 

The Issue

Senators Burr and Hagan are both health policy leaders in the Senate through their positions on the HELP Committee. They can work together to introduce the IBS and Functional GI Disorders Research and Treatment Act on a bipartisan basis in the Senate. However, they will only take action on this crucial legislation if they understand that improving health outcomes for Functional GI Disorders patients is a major priority for their constituents. The more North Carolinians that write to Senators Burr and Hagan, educate them about Functional GI Disorders, and urge them to support this legislation, the more likely they are to become initial cosponsors of the IBS and Functional GI Disorders Research and Treatment Act and introduce the bill. 

Take Action

Please consider sending your own letter to the Senators which tells your story and asks that they take meaningful action on this bill. 

• View a draft copy of the bill here (pdf). 
• View a sample letter here, which you can use to assist with your outreach. 

Please send final copies of your personalized letters to the IFFGD’s Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217. Dane can ensure that your letters are hand-delivered to the appropriate staff in the Senator’s Washington, DC offices. He is also available to answer any questions you may have.

Sample wording for your own letter/email 

[DATE]  

The Honorable Richard Burr             The Honorable Kay Hagan 
217 Russell Senate Office Building   521 Dirksen Senate Office Building  
Washington, DC 20510                    Washington, DC 20510  

Dear Senator Burr and Senator Hagan, 

Thank you both for you continued leadership on health issues.  

I write you today as a constituent to ask you to work together to introduce of the Irritable Bowel Syndrome (IBS) and Functional Gastrointestinal (GI) Disorders Research and Treatment Act.   

[Tell your story as a patient or as the family member/friend of a patient with a Functional GI Disorder]  

Functional GI Disorders – like IBS, functional dyspepsia, and chronic functional abdominal pain – are among the most puzzling and prevalent of chronic disorders. Despite the common nature of IBS and other Functional GI Disorders, little is known. This leads to a situation where conditions are often misdiagnosed, mistreated, and under-reported. Functional GI Disorder patients often struggle with constipation, diarrhea, vomiting, abdominal pain, and other symptoms. Frequency and severity of these symptoms differs greatly between individuals. Some patients experience periodic, mild discomfort while others face relentless and debilitating issues that cause a drastic loss of quality of life. A lack of effective treatment options disrupts employment, educational, and social opportunities. Direct and indirect costs of IBS alone are estimated between $20–30 billion annually.  

The IBS and Functional GI Disorders Research and Treatment Act is a landmark piece of legislation crafted by leading GI researchers, physician, and patient representatives to address many of the persistent issues that GI patients face. This bill would coordinate current research efforts and initiate critical new opportunities through the National Institutes of Health and academic medical centers. It would also work to improve diagnosis of functional GI disorders through physician and patient education, and, most importantly, stimulate the development of safe and effective treatment options. 

As respected leaders on health policy, it is my hope that you will work together as original cosponsors to introduce this legislation and advance it through the Senate. Thank you for your time and please inform me of any action you plan to take in regard to the IBS and Functional GI Disorders Research and Treatment Act. Thank you.    

Sincerely,

[Name] 
[Address and contact information]  

WISCONSIN

Digestive Disorders Patients from Wisconsin, Contact your State Representative and State Senator and Urge them to Support the Restroom Access Act (Assembly Bill 709). 

Wisconsin State Representatives Karl Van Roy (R-90th Assembly District) and Jim Soletski (D-88th Assembly District), and State Senator John Lehman (D-21st Senate District) are currently working to advance the Restroom Access Act (Assembly Bill 709) through the Wisconsin State Legislature. This important legislation requires a retail establishment that has a toilet facility that is designated for use by employees to allow a person who has a certain type of medical condition, or who uses an ostomy device, to use the employees’ toilet facility under certain conditions.

The conditions are that the person . . .

• has a written statement from a physician indicating that he or she has an eligible medical condition, or
• uses an ostomy device, or
• has an identification card issued by an entity that is approved by the Department of Health Services to issue such cards, and
• requests use of the toilet facility during normal business hours and while at least three employees are working.

Additional conditions are . . .

• the toilet facility is not located in an area where access by the person creates a health or safety risk to the person or a security risk for the retail establishment, and
• the retail establishment does not have a toilet facility that is open to the public and no public bathroom is immediately accessible to the person. 

Please click here to view a copy of the legislation (pdf).

The Issue

To ensure that the Wisconsin State Assembly and the Wisconsin State Senate pass Assembly Bill 709, please consider contacting your State Representative and State Senator, and urging them to co-sponsor and support the bill. As a constituent of these individuals, you have every right to reach out to them and enlist their support. If enough patients contact their state legislators, a critical mass of support will be built behind this bill, state lawmakers will understand it is a high priority, and it will move quickly through the legislative process.

Take Action

To identify the contact information for your State Representative and your State Senator, simply go to http://www.legis.wisconsin.gov/w3asp/waml/waml.aspx and enter your address. Please call the offices of your legislators and urge their support. Below are talking points that can assist you with making these two phone calls. 

• Hello, my name is [your name] and I am from [your hometown].
• I am calling today to ask [Representative or Senator _____________] to cosponsor and support the Restroom Access Act, Assembly Bill 709.
• This legislation is very important to patients across Wisconsin who suffer from digestive diseases.
• [Consider telling your story as a digestive disease-affected individual].
• Once again, I hope your office will consider co-sponsoring or supporting Assembly Bill 709 and I would appreciate it if you informed me of any action that is taken in this regard.
• Thank you for your time.

Please click here to view the letter from IFFGD (pdf) sent in support of the legislation.