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H. Res 1309 - House Resolution for IBS
      #358404 - 05/05/10 11:47 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Passed on to me from the IFFGD

Hi Shawn,

As you may know we have been working for some time on Capitol Hill to raise awareness and increase research funding. Last Thursday (April 29) a Resolution we drafted was introduced in the U.S. House of Representatives in support of IBS and FGIDs research and awareness. Now we need everyone interested to write to their House Member and ask them to support H. Res. 1309. Details are on our web page at http://www.iffgd.org/site/advocacy/legislative-alerts/action#natlres. We'd appreciate it if you could help us spread the word.

I'm at DDW all week. Hope you are doing well.

Thanks,

Bill


--------------------
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Any info on the kind of research they'll do? new
      #358405 - 05/05/10 11:51 AM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA

Is it all pharmaceutical, or are non-drug types of treatments being investigated as well?

Thanks Shawn,
H

--------------------
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Re: Any info on the kind of research they'll do? new
      #358426 - 05/05/10 06:53 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Hi Heather, hope your doing well.

Did you read the link here? It looks like it will be for a lot of reasons.

I will post more details about it when I can, I am away for a couple days.

We need everyone to do this though to make a difference. Its very important.

--------------------
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Re: Any info on the kind of research they'll do? new
      #358471 - 05/06/10 01:15 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

This is very important for funding for ALL IBS research

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 ansd 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]

Top of Page
Support the National Congressional Resolution for IBS Research
On April 29, 2010 an IFFGD drafted Resolution was introduced expressing the sense of the U.S. House of Representatives that there is need for further study of the Functional Gastrointestinal Disorder Irritable Bowel Syndrome (IBS). Please ask you Congressperson to cosponsor and suppport H. Res. 1309.

To identify your Members of Congress and their contact information, simply go to www.congress.org and enter your zip code. Simply ask your House Member to cosponsor and support H. Res. 1309.

What the Resolution Does
This Congressional Resolution is crucial to educating Members of Congress about IBS. 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.
The Issue
Many Members of Congress are unaware of IBS and FGIDs and the issues affecting patients. This lack of awareness on Capitol Hill makes it difficult for the digestive health community affected by functional GI and motility disorder to advocate for certain legislative priorities, such as increased research funding. This Congressional Resolution calls legislators' attention to IBS and FGIDs to better educate them about the disorders. 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
The Resolution (H.Res. 1309) was drafted by IFFGD and on April 29, 2010 was introduced with bipartisan support in the House of Representatives. You can view details by going to the Library of Congress web page. It still needs to be passed in the House. This means that a majority of Representatives need to stand up for the IBS and digestive dieseases community by agreeing to support this resolution.

Nothing motivates a lawmaker into action as much as hearing from the constituents. Please contact your House Member and simply ask them to co-sponsor and support H. Res. 1309. Let them know that research into IBS is an important issue to you. That's really all you have to do.

To identify your Members of Congress and their contact information, simply go to www.congress.org and enter your zip code.

If you have any questions, please contact IFFGD's Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217.

Express Your Thanks
H. Res. 1309 was introduced by Rep. Tammy Baldwin (D-WI 2); initial cosponsors were Rep. Jim Sensenbrenner (R-WI-5) and Rep. Peter Welch (D-VT-AL). If any of these House champions are your representatives, please take a moment to thank them. (Go to www.congress.org and enter your zip code.)


http://www.iffgd.org/site/advocacy/legislative-alerts/action#natlres.


I will post more as I learn more, but make sure to write your representatives.


--------------------
My website on IBS is www.ibshealth.com


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Re: H. Res 1309 - House Resolution for IBS new
      #358517 - 05/08/10 09:47 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Has anyone done this yet? If not please take a moment to write your representitives. IT really matters and you can make a difference. Make a quick reply here if you did so please. Thanks

--------------------
My website on IBS is www.ibshealth.com


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Re: H. Res 1309 - House Resolution for IBS new
      #358535 - 05/10/10 10:32 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

There are 267 views to this thread, has anyone send a responce to their representitives?

If you have questions about this post them and I will get the answers.

Again this is to support all IBS research. Its very important.



--------------------
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Re: Any info on the kind of research they'll do? new
      #358565 - 05/11/10 05:20 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Expressing the sense of the House of Representatives that there is need for further study of the Functional Gastrointestinal Disorder (FGID) Irritable Bowel Syndrome (IBS). (Introduced in House)

HRES 1309 IH


111th CONGRESS

2d Session

H. RES. 1309
Expressing the sense of the House of Representatives that there is need for further study of the Functional Gastrointestinal Disorder (FGID) Irritable Bowel Syndrome (IBS).


IN THE HOUSE OF REPRESENTATIVES

April 29, 2010
Ms. BALDWIN (for herself, Mr. SENSENBRENNER, and Mr. WELCH) submitted the following resolution; which was referred to the Committee on Energy and Commerce, and in addition to the Committees on Armed Services and Veterans' Affairs, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned


--------------------------------------------------------------------------------


RESOLUTION
Expressing the sense of the House of Representatives that there is need for further study of the Functional Gastrointestinal Disorder (FGID) Irritable Bowel Syndrome (IBS).

Whereas IBS is a chronic FGID characterized by symptoms including pain or discomfort in the abdomen and altered bowel habit;

Whereas abnormal functioning of the nerves and muscles of the bowel produce the symptoms of IBS, and dysregulation between the brain, gastrointestinal tract, and central nervous system causes the bowel to become irritated, or overly sensitive to stimuli;

Whereas IBS is common in the general population, affecting people of all ages including children and seniors, but a social stigma surrounding bowel function persists;

Whereas IBS is one of the underlying disorders highly correlated with Gulf War Syndrome and IBS remains a serious issue for military veterans who have been deployed to combat areas;

Whereas there is no definitive test for IBS, and diagnosis is made via symptom-based criteria, extensive medical history, physical examination, and limited medical testing;

Whereas IBS symptoms may come and go, persist over a long period of time, or change over time, and can range from mild and infrequent to severe and chronic, affecting daily functioning;

Whereas people suffering from IBS frequently report gastrointestinal dysfunction including heartburn, nausea, abdominal fullness, and bloating and may also experience dyspepsia, feelings of urgency, and feelings of incomplete bowel emptying;

Whereas people suffering from IBS frequently report non-gastrointestinal problems including fatigue, muscle pain, insomnia, headache, lower back pain, and sexual dysfunction;

Whereas IBS affects between 25 and 45 million people in the United States, or 10 to 15 percent of the population, and an estimated 9 to 23 percent of populations worldwide suffer from IBS;

Whereas two in every three IBS sufferers are female, and gastrointestinal tract function appears to be influenced by changes in the level of female hormones;

Whereas effective treatment for the multiple symptoms of IBS is lacking;

Whereas IBS sufferers frequently use medication therapy, stress management, cognitive-behavioral therapy, gastrointestinal-directed hypnosis, biofeedback, relaxation, and pain management techniques attempting to control their symptoms;

Whereas IBS sufferers frequently use a variety of medications for IBS symptoms such as non-narcotic and narcotic pain medications, acid reducers, antidiarrheals, and laxatives, however, few patients report satisfaction with available treatments, highlighting the pressing need to find new and more effective treatments for IBS;

Whereas IBS can control many aspects of a person's emotional, social and professional life, and quality of life is often affected due to activity limitations that can impair physical, emotional, economic, educational, and social well-being;

Whereas the annual cost of IBS treatment in the United States has been estimated to be between $1.7 billion and $10 billion in direct medical, excluding prescription and over-the-counter medications, and $20 billion in indirect medical costs;

Whereas IBS frequently takes a toll on the workplace, reflected in work absenteeism, lost productivity, and lost opportunities for the individual and society;

Whereas approximately 20 to 40 percent of all visits to gastroenterologists are due to IBS symptoms, contributing substantially to healthcare costs;

Whereas there is a significant need for further research on IBS to improve diagnostic and treatment options for patients, and reduce the high socioeconomic burden on IBS sufferers and on society;

Whereas the designation of April as National IBS Awareness Month has increased public education about IBS and the need for increased Federal funding for research on FGIDs; and

Whereas National IBS Awareness Month has been celebrated as a health observation during the month of April for the last thirteen years: Now, therefore, be it


Resolved, That it is the sense of the House of Representatives that--

(1) the Director of the National Institutes of Health (NIH) should take a leadership role in the search for new treatment options and a cure for IBS by--

(A) encouraging the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to implement the research recommendations of the National Commission on Digestive Diseases;

(B) exploring collaborative research opportunities between the NIDDK, the Office of Research on Women's Health, and other NIH Institutes and Centers;

(C) encouraging NIDDK to provide the necessary funding for continued expansion and advancement of the IBS research portfolio through intramural and extramural research; and

(D) encouraging NIDDK to provide the necessary funding for education with respect to IBS and FGID through the cosponsorship of workshops and seminars with patient organizations;

(2) funding should be increased for basic and clinical biomedical research into IBS and other FGID through NIH;

(3) the Director of the Food and Drug Administration (FDA) should take a leadership role in ensuring that new IBS treatments are developed and appropriately monitored by--

(A) issuing further guidance to industry on the development criteria and adverse event standards for IBS treatments; and

(B) encouraging the participation of patients groups and considering the views of patients when discussing standards and protocols for the development and monitoring of IBS treatments; and

(4) the Department of Defense and the Department of Veterans Affairs should bolster their efforts to study IBS and FGIDs, and their association with war trauma.

http://thomas.loc.gov/cgi-bin/query/z?c111:H.RES.1309:

Again has anyone done this? It almost seems like no one wants funding for more IBS research. I could be wrong but why the silence and some 300 views?

Heather, is this answering some of your questions? Do you have specific questions on it?







--------------------
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Re: Any info on the kind of research they'll do? new
      #358566 - 05/11/10 05:23 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

This is a DRAFT of the bill worth reading.

http://www.iffgd.org/pdfs/IBS_and_FGID_draft_Act_2010.pdf


--------------------
My website on IBS is www.ibshealth.com


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Re: Any info on the kind of research they'll do? new
      #358580 - 05/12/10 02:32 PM
Syl

Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA

Hi Shawneric,

I read the draft bill. It seemed clearly written with well reasonable obtainable objectives. There seems to be a nice balance between research, support and education and oversight/accountability seems to clearly identified.

Hopefully, there will be a lot of support for it from the US FGID/IBS community. Please keep us posted on the bills progress.


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Done! -nt- new
      #358582 - 05/12/10 04:48 PM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA



--------------------
Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!

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Re: Done! -nt- new
      #358624 - 05/14/10 10:28 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Thanks Heather and hope your doing well.

This is really important so please people keep up the pressure on your representitives.

--------------------
My website on IBS is www.ibshealth.com


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Re: Any info on the kind of research they'll do? new
      #358655 - 05/15/10 10:20 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Syl, I really hope so and I really hope more people then you, me and heather have done this, as I can't stress the importance enough to keep pressure on them.



--------------------
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Re: H. Res 1309 - House Resolution for IBS new
      #358763 - 05/19/10 09:50 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

1242 views, I hope tthere is ahlf that at least that did this, if you did, thanks. All ibsers should support this.

--------------------
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