# An Urgent Appeal to Congress - Focus on the IBS Sufferer



## Jeffrey Roberts (Apr 15, 1987)

Please help us once again to explain the burden of illness associated with IBS by sharing your personal story with your Congressional leaders.This webpage details a simple method to send your email messages after you input your zipcode. This should require no more than 5 minutes of your time.Please visit this webpage as soon as possible to send your email messages. http://www.ibsassociation.org/main/appeal.html Jeffrey RobertsPresident & Founder IBS Self Help GroupCo-Founder & Coordinator Lotronex Action GroupFounder & Coordinator Zelnorm Action Group[This message has been edited by Jeffrey Roberts (edited 10-14-2001).]


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## eric (Jul 8, 1999)

Will do Jeff and thanks for all your doing.







------------------Moderator of the Cognitive Behavioral Therapy, Anxiety and Hypnotherapy forum.I work with Mike building his websites. www.ibsaudioprogram and www.healthyaudio.com I also work with Mike in IBS clinical trials using Mikes tapes at an IBS research facility.My own website on IBS is www.ibshealth.com Please visit for accurate information on IBS.


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## pac (Sep 5, 2001)

Jeff,Thank you so much! I think this is great and will definitely do it!pac


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## Sherree (Mar 27, 1999)

OK, I'll do it again. I have yet to receive any kind of reply, though.


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## ohnometo (Sep 20, 2001)

Jeff,I went to the site and put in my zip code and what I need to know is "Does your letter attach to what we are sending the State" I I know that sounds dumb but I cannot find a place on my page to send them anything...Help please------------------"If you always do what you have always did, You'll always get what you always got "


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## Jeffrey Roberts (Apr 15, 1987)

After entering your zip code you will see a list of your congressional members.Select "email" on one of them.Next - select "Compose Your Own Letter"The next screen should be clear.Jeff


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## ohnometo (Sep 20, 2001)

ThanksThe letter is done and sent !!!!!------------------"If you always do what you have always did, You'll always get what you always got "


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## angry (Jul 25, 2001)

E-mails don't get read by most congressmen.They freely admit that they (and their staff) can't process the huge number of E-mails they get.They handle real mail much better (or they did ....)Perhaps it may be better to print out the letter and then mail it.


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## Guest (Oct 17, 2001)

Jeffrey, did you see the following post? http://www.ibsgroup.org/ubb/Forum1/HTML/024086.html (I mean, speak of getting to the root-cause of this nightmarish condition...


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## Sherree (Mar 27, 1999)

I wrote to my Rep. about 2 - 3 weeks before the terrorist tragedy in NY. Below is the snail mail response I received a couple of days ago. Though it looks like she did some research, her response was not all that positive. I really don't think Congress can be of much help. I will continue to focus my efforts on the FDA, Glaxo, and the media.SherreeOctober 5, 2001Dear Ms. Lewis:As you know, our nation is experiencing a tragedy unlike any other in history. Your concerns with the distribution of Lotronex are certainly important, and I appreciate hearing from you. In this time of suffering, Congress is working to ensure America not only recovers from these awful events, but that terrorism in all forms is prevented from reaching our shores again.The U.S. Food and Drug Administration (FDA) did not make the final decision to remove Lotronex from the market. The company that produces the drug, Glaxo Wellcome, voluntarily removed Lotronex from the market.While Lotronex worked as planned for some patients; in others the drug caused severe side effects. Specifically, the FDA had 70 reports of ischemic colitis, intestinal damage caused by reduced blood flow. Other patients reported obstructed or ruptured bowels. Finally, the drug caused death in a small handful of patients. Thus, the FDA was forced to weigh the benefits enjoyed by some patients against the critical disadvantages.The FDA was aware that many Irritable Bowel Syndrome (IBS) patients had reported very positive results with no side-effects. Consequently, the FDA gave Glaxo the option of a restricted distribution program, rather than simply pulling the drug off the market altogether. The restricted plan would have allowed Glaxo to keep Lotronex on the market under closely monitored conditions as well as continued clinical studies of the drug.Glaxo, however, decided the drugï¿½s disadvantages outweighed its benefits and the company chose to remove the drug from the market at that point.I certainly understand your frustration with the situation. The fact that Glaxo removed the drug from the market of its own accord, however, illustrates that all parties concerned agreed that Lotronex was not entirely safe.The FDA is well aware of the benefits of Lotronex and the agency has offered assistance to Glaxo or any other willing company, help to develop risk management plans to ensure appropriate patient access to medically important, effective drugs. Let me assure you that I have consistently supported increased funding for the National Institutes for Health (NIH) a federal agency which, among other things, helps research and create drug therapies.Again, thank you for the taking time to contact me. If you have any other questions or concerns, please let me know.Sincerely,Darlene HooleyMember of Congress


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## echris (Jul 19, 2000)

I rec'd a very similar written response from my U.S. congressman here in Kansas. I didn't see it as very encouraging. It appears that the party line now is to say that it's not up to the FDA, it's to Glaxo. If they don't want to market a drug (under conditions that virtually guarantee that they won't make any money off of it), the government can't force them to.Sure makes me glad that I have an ample supply of Lotronex for now.ec


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