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Discussion Starter · #1 ·
I know everyone else is pushing the campaign to get a petition started and make our cause known to the FDA, but it's worth stressing again. We've all been complaining to each other about this tragedy, and it's essential to vent, but we're preaching to the choir here. You are only one person, but you have a voice (or hands to type with, as the case may be) and right now it is your only weapon. We all, ALL have to start doing this now. Write to anyone you can think of, and in any form you can think of. Send both email and regular mail. Make phone calls. Get your friends, family, and anyone else who has seen you suffer involved. Write and email the FDA at the addresses that Jeff's posted. Write every single person you can think of who might have the slightest influence. I know it's a lot of time and effort, but just think of how much of our time and money we've already wasted searching desperately for treatments. I love kmottus' idea of writing the president. No matter what you think of him and his ability or willingness to help us out, this HAS TO GET ATTENTION. The White House1600 Pennsylvania Avenue NWWashington, DC 20500President George W. Bush: president###whitehouse.gov Vice President Dick Cheney: vice.president###whitehouse.gov First Lady Laura Bush: first.lady###whitehouse.gov Mrs. Lynne Cheney: mrs.cheney###whitehouse.gov Write your senators, both email and snail mail. Find their addresses at: http://www.senate.gov/senators/index.cfm WE MUST FIGHT!!!!
 

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At this time the President has not appointed someone to head up the FDA. I think we should let the President know how important it is to us that we get someone heading the FDA that will be on our side.Millions of americans are effected by a disease which can rob people of their quality of life. This disease accounts for millions of lost hours of work (#2 behind the common cold) and there is no specific and effective drug for this disease on the market today.Special interest groups are appling pressure to the FDA to keep these drugs from the market. Apparently in the belief that we are incapable of making decisions for ourselves about the risks and the benefits of treatment. This disease effects our colons, not our minds. We do not need to be protected from ourselves, but to be protected from those whose hatred of big businesses has blinded them to the plight of millions of Americans. (heck PC is liberal W is not... play the cards you are dealt)Americans who just want to go to the store like everyone else. Americans who just want to be able to go to work on time and stay for their entire shift. Americans who want to be able to go to thier kids baseball game and sit in the stands cheering their kid on without worring about being able to find a bathroom, or be able to eat a hot dog at that game without fear of being ill.We are not asking for much, just a chance to live the American dream.K.(PS...gearing up for writing my own letters. Please feel free to plagerize anything here).------------------I have no financial, academic, or any other stake in any commercial product mentioned by me.My story and what worked for me in greatly easing my IBS: http://www.ibsgroup.org/ubb/Forum17/HTML/000015.html [This message has been edited by kmottus (edited 06-19-2001).]
 

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Here is a letter I sent today-also posted on the Lotronex Discussion.Dear Mr. And Mrs. Bush,I am writing to both of you with the hopes of making a request that is of the utmost importance to myself and millions of other Americans. I and many, many others suffer from Irritable Bowel Syndrome which is as you may or may not know, a disease which in its simplest form is characterized by chronic constipation or diarrhea or both intermittently. It can cause severe abdominal pain, nausea, urgency, panic and stress, to name but a few symptoms. This condition cause many individuals to become housebound or lose their jobs.It can cause so much stress that it affects every aspect of one�s life. Even something as simple as going to a movie or the beach with one�s children becomes a harrowing experience and decision making becomes a burden sometimes too heavy to contemplate.IBS affects between 25 and 55 million people in the United States and results in 2.5 to 3.5 million yearly visits to physicians. Approximately 20 to 40 percent of all visits to gastroenterologists are due to IBS symptoms. Except for the common cold, most incidents of work absenteeism are due to IBS. IBS symptoms affects men and women of all ages and of all races. The prevalence of IBS in the general population of Western countries varies from 6 to 22%. IBS affects 14-24% of women and 5-19% of men. I personally have suffered from this disease for over 24 years. The physical pain can range to mild to very severe, similar to labor contractions and together with the mental anguish, embarrassment and the inevitable stress related to this disease often result in debilitation and ultimate sense of hopelessness.You may also be aware that last year, a �wonder� drug called Lotronex was made available by Glaxo Wellcome. After 8 months of using this drug and finally feeling �normal� again, Glaxo decided to withdraw the medicine due to a series of events which included the FDA requiring more strict usage guidelines as a result of rare incidents of serious illness allegedly attributed to Lotronex usage. There has been volumes written about this as I am sure you are both aware. Just recently, another drug called Zelnorm that was eagerly awaited by IBS patients who suffer from chronic constipation was not approved by the FDA. Many people feel it is because of the Lotronex series of incidents. Mr. and Mrs. Bush my humble request is this: Mr. Bush, I understand that you have yet to appoint a director of the FDA. I urge you to consider the millions of Americans, many of whom I am sure are your constituents that are affected by decisions made by the FDA and plead with you to consider an individual who will be sympathetic to the needs of all of those souls suffering from this horrible condition, in whatever form it takes. Mrs. Bush, I ask you on behalf of all IBS sufferers to please become more informed about our disease and to speak out in our favor so as to come to a resolution to this affliction that affect so many of us. We as a group often feel that our voices are not heard, nor are they acted upon. A cure would almost be too much to ask for. Help in the form of these drugs that are proven to alleviate the symptoms so much that one practically feels like a different human being is what I am asking for. Anything you can do for us would be greatly appreciated.George, I voted for you because I agree with your value system and your wishes for our country. Please don�t disappoint me now. Please help all of the Americans suffering with this disease. Sincerely, Debra H. Benning
 

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Here is my letter:Mr. and Mrs. Bush,I, along with millions of other Americans, am suffering from Irritable Bowel Syndrome (IBS). This condition is often unfamiliar to many and there is not much public knowledge on this subject. Yet this condition is so common, it is second only to the common cold as a reason for work absenteeism.I am 21 years old, not much older than your daughters I believe. For the past year I have been living with this condition. I had graduated college shortly before my problems with this condition began, and was married shortly after my first symptoms appeared. As you are aware, this is supposed to be a happy point in a young person's life, but because of IBS it has been a very difficult year.There are two types of IBS: diarreah-prone and constipation-prone. I have the constipation-prone type. People suffering from this have a wide variety of symptoms that can cause a person to become housebound in many cases. For months, I only left the house to go to work each day, and work was extremely hard because I constantly felt sick. There is no cure for IBS, but two medications have come before the FDA in the past year. These medications, Lotronex and Zelnorm, have the ability to treat the symptoms of IBS that make life unbearable for millions of Americans.Lotronex was on the market for 8 months and was then pulled, as you are probably aware. A small incidence of serious side effects was reported, as with most medications. This medication became a lifesaver for millions of IBS-diarreah sufferers, yet they are now denied access to this drug that gave them their life back.Zelnorm was denied FDA approval on June 18, though FDA advisory committees advised it to be approved. Many of us IBS-constipation sufferers we looking forward to this medication, as it was designed for us. Some of us believe this drug was not approved because of the Lotronex controversy, and because of action from special interest groups who only have a political interest in this medication.I urge you to seek an FDA head person who will side with the millions of Americans suffering in quiet from IBS, instead of someone who will bend to the pressure of special interest groups. We believe that as Americans, we should have the freedom to determine for ourselves if the side effects of these drugs is worth the risk, as with any other medication. We feel it is our right to have a person heading the FDA who will listen to the people of America. Please consider my words as you appoint someone to this position. Your choice can affect the lives of millions who suffer daily.Sincerely,Sara C.
 

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Discussion Starter · #5 ·
Great letters, guys. I just had a thought: what about the media? Would it do any good to contact our local papers/tv stations? I know that the papers reported on the "not approved" thing, but would they be interested in our continuing campaign to get it approved? If so, how would we go about contacting them, and what would we say? I don't live in a big city, but it seem like if enough people in a big city would get together to hold a rally/protest/something that the media would be likely to cover it. My boyfriend suggested a "million bowel march" on Washington, but I don't think they make enough port-a-potties for that.
Seriously, though, does anyone have any ideas for demonstrations, rallies, or anything like that? I'm a great participant but unfortunately not much of a leader, and I don't know what the next step is beyond writing letters.Thanks,Susan
 

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Susan,Have you joined the Zelnorm Action Group? That is a great idea. I think you should recommend that as an action item. We should prepare a media kit and distribute it to various newspapers and TV stations. My doctor was interviewed for TV about the Zelnorm situation and it was supposed to air this weekend on the early morning edition, it was knocked off by another medical news item. Just shows we are not in the public awareness yet. We really need a media strategy.------------------***Gail
 

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Discussion Starter · #8 ·
Yep, I've joined ZAG. Here's another thought: contacting the "big" media, eg. CNN, Rush Limbaugh, etc. Maybe if enough of us say something, they'll realize there's a story here.
 
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I have joined the Zelnorm Action group. I am totally there for any rally or event that will get the media attention and ultimatley the FDA. I'm sure how to organize this political action, but I will look into it and please count me in!!!!Stacy
 
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