IBS Advocacy and McCain
#353535 - 12/28/09 03:04 PM
|
|
|
shawneric
Reged: 01/30/03
Posts: 1738
Loc: Oregon
|
|
|
I want to adress this some more, but first
with permission from the IFFGD
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 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 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]
-------------------- My website on IBS is www.ibshealth.com
Print
Remind Me
Notify Moderator
|
|
Disguisting, but not surprising from a crude, ignorant old bat. God forbid somebody trivilaze the various diseases that bat carries.
-------------------- IBS-C and Bloating
Print
Remind Me
Notify Moderator
|
|
Print
Remind Me
Notify Moderator
|
|
Legislative Agenda
http://www.iffgd.org/site/advocacy/legislative-agenda
Legislative Activities
http://www.iffgd.org/site/advocacy/legislative-activities/
Legislative Alerts
http://www.iffgd.org/site/advocacy/legislative-alerts/
NATIONAL ISSUES Urge your Members of Congress to Support the Irritable Bowel Syndrome (IBS) and Functional Gastrointestinal Disorders (FGIDs) Research and Treatment Act. IFFGD has worked with leading clinicians and researchers to draft the IBS and FGIDs Research and Treatment Act. This landmark piece of legislation would significantly expand and coordinate federally supported research efforts for functional GI disorders. In addition, the bill contains provisions to train new FGID investigators, better educate healthcare providers to properly recognize and treat FGIDs, and directs the FDA to improve the development and oversight of treatments.
You can reach out to your Members of Congress, educate them about IBS and/or functional GI disorders, explain the importance of this legislation from a patient perspective, and enlist their support for this important effort. To find out how, click here.
Ask your Members of Congress to Recognize April as IBS Awareness Month. Despite the prevalence of IBS and the tireless outreach of the IFFGD, many lawmakers remain unaware of IBS and the unique challenges faced by the patient community. Introducing an annual Congressional Resolution which recognizes April as IBS Awareness Month will raise the profile of IBS on Capitol Hill and inform legislators of the issues impacting IBS patients.
Contact your Members of Congress and raise awareness of IBS. Ask them to support this resolution. To find out how, click here.
http://www.iffgd.org/site/advocacy/legislative-alerts/
I want to talk to Heather soon about all this, but would like to start getting everyone's support on some of these issues for IBS and other functional disorders as well.
-------------------- My website on IBS is www.ibshealth.com
Print
Remind Me
Notify Moderator
|
|
Dang, I just saw my senator yesterday - missed opportunity!
-------------------- IBS-A and GERD since 1983
Low FODMAP since 2012
Print
Remind Me
Notify Moderator
|
|
You're damn right
so many people suffer from IBS, and its just plain immature to make a joke out of it. What if somebody made fun of breast cancer because breasts are taboo like bowels
Print
Remind Me
Notify Moderator
|
|
vettech, you email him?
-------------------- My website on IBS is www.ibshealth.com
Print
Remind Me
Notify Moderator
|
|
This has opened an opportunity for all IBSers. The IFFGD has been in his office and will continue to be for 2010.
There is a lot of support we can also provide.
This is NOT a partisan issue, but support for IBS as well as the 28 other functional disorders.
It is my hope we can all count on each other in the future for support.
-------------------- My website on IBS is www.ibshealth.com
Print
Remind Me
Notify Moderator
|
|
Hopeful in seeing raised interest/studies in food allergies as a causal or contributing factor of IBS. It's what seems to work for me to keep IBS symptoms at bay-reduce/eliminate yeast foods and sugar.
http://www.docstoc.com/docs/19843590/IBS-Treatment-Center-Calls-on-McCain-to-Support-IBS-Research
Print
Remind Me
Notify Moderator
|
|
While IBS awareness and research is good, there has been a lot of research on food allergies and IBS, they are NOT the same condition. I would be extremely cautious about the information from that center on IBS and personally know they are using the Mccain issue to promote themselves and their own agendas.
I personally believe there is highly inaccurate information on their website about IBS.
For one they call any gi symptom IBS and call celiac IBS and food allergies IBS. This is ALL in accurate.
-------------------- My website on IBS is www.ibshealth.com
Print
Remind Me
Notify Moderator
|