IBS Self Help and Support Group - You Don't Have to Cope Alone
IBS Support Group Newsletter
March 2002
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IBS Self Help and Support Group - You Don't Have to Cope Alone | |
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IBS Support Group Newsletter March 2002 |
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IN THIS ISSUE SPOTLIGHT
NEWS LINKS
ONGOING
SPONSORED LINK
Presentation at FDA Advisory Committee meeting on April 23, 2002 On November 28, 2000 Glaxo Wellcome announced that, at the request of the US Food and Drug Administration (FDA), it will voluntarily withdraw Lotronex (alosetron), its treatment for irritable bowel syndrome (IBS), from the US market with immediate effect. The step had been taken after in-depth discussions with the FDA about the interpretation of data related to gastrointestinal side effects which had occurred amongst patients treated with the product. These included rare reports of fatalities, although no causal relationship with Lotronex had been established. In December 2000 members of the IBS Self Help Group help to establish the Lotronex Action Group (LAG) which is seeking immediate access to the medicine while avenues for continued marketing are explored between GlaxoSmithKline and the Food and Drug Administration. Moreover, LAG ultimately seeks permanent access and safe distribution of the medicine to those diagnosed with IBS-Diarrhea. The Lotronex Action Group believes the medicine to be safe, if dispensed properly, and that the benefits of Lotronex far outweigh the potential risk for adverse side affects. The Lotronex Action Group and IBS Self Help Group received a tremendous amount of media attention since the withdrawal of the medicine. We have had dialogue with both the FDA's Center for Drug Evaluation and Research (CDER) agency and GlaxoSmithKline in order to restore access to the medicine. To date, we have been unable to gain any access at all. The repercussions of not approving Lotronex may also impact approval and/or future research funding for other IBS medications, such as Zelnorm/Zelmac (tegaserod) for IBS-Constipation and Cilansetron for IBS-Diarrhea. On April 23, 2002 the Food and Drug Administration has scheduled a joint meeting of an advisory committee on gastrointestinal drugs and a newly formed panel on drug safety to discuss ``risk management'' of Lotronex. The FDA has provided some time during the meeting for public presentations. Several members from the Lotronex Action Group and IBS Self Help Group will be present and some will be making a presentation to the advisory committee. I will be making a presentation on behalf of the IBS Self Help Group and Lotronex Action Group which describes the growth of the IBS Self Help Group and development of LAG. I will also present data from LAG's petition to the FDA submitted on March 21, 2001, as well as restrictions IBS patients may be willing to accept for access to IBS medications. If you are planning on attending the meeting you may add your travel information to this posting: http://www.ibsgroup.org/ubb/ultimatebb.php?ubb=get_topic;f=18;t=000464 Please wish us success in this very important endeavor. Jeffrey D. Roberts, B.Sc. President & Founder IBS Self Help Group ibs@ibsgroup.org http://www.ibsgroup.orgPoll: Restrictions IBS patients are willing to accept for access to IBS Medication A poll was added to the IBS
Self Help Group Bulletin Board which aims to
gather data based on what type of restrictions, if any, that IBS patients
are willing to accept for access to IBS medications. If Lotronex or
Zelnorm/Zelmac are to make it to market, are the authorities expecting
patients to accept restrictions? http://www.ibsgroup.org/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=get_topic&f=31&t=000001&p= Digestive Disease Week - San Francisco May 19-22, 2002 On May 19 - 22 gastroenterologists will meet in San Francisco for the annual Digestive Disease Week (DDW) event. DDW is the leading international meeting in gastroenterology and related fields. This year the Irritable Bowel Syndrome Association and IBS Self Help Group will be attending the event and will have a booth in the exhibit hall. Heather Van Vorous, the author of Eating for IBS and The First Year - IBS will also have a booth in the exhibit hall. Although not a patient oriented event, a diverse cross section of exhibitors is represented. Pharmaceutical, biomedical, device and instrumentation, medical software, medical publishers, health care foundations, as well as nutrition companies comprise more than 250 exhibitors occupying more than 1,000 booths. DDW will offer an excellent opportunity to raise awareness of Irritable Bowel Syndrome and our group's efforts. If you live in the Bay Area and are able to volunteer to answer questions in the booth, please contact me at ibs@ibsgroup.org. I will have free exhibit passes for those that will be helping out. Changes on the IBS Group Bulletin Board Recent Visitors Recent Visitors, or Who's Online, was added to the Bulletin Board to display members browsing the forums and topics on the BB in the past 20 minutes. The recent visitors information is only updated every 5 minutes to reduce server load. As a result, you may not immediately see yourself or others. This new feature is perfect for striking up a conversation with other members in the chat room. To "hide" from Recent Visitors,
you must make this change to your profile: Surveys and Polls A new forum was created on the Bulletin Board for Surveys and Polls. Polls will be a valuable tool for tracking the opinions and knowledge of our members. At this time polls can only be created by the Administrator of the Bulletin Board, however once a poll is started you are invited to post your comments about the poll topic or the poll itself. Poll results are graphically displayed after you cast your vote. If you have forgotten your username or password for the Bulletin Board you may request it here: http://www.ibsgroup.org/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=lost_password IBS Self Help Group meets members in New York City on February 18, 2002 On a recent trip to New York City my wife and I had the pleasure of meeting with a small group of IBS Self Help Group members over dinner on February 18, 2002. It was a delight to meet with members with whom we have known and spoken with in the virtual world of the IBS Self Help Group BB. We wondered if this was the charter meeting for the New York City IBS Self Help Group? http://www.ibsgroup.org/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=get_topic&f=3&t=014259&p=
New Mind-Body Digestive Center Topic on Bulletin Board In July 2001 the Mind-Body Digestive Center's IBS Discussion forum was added to the IBS Self Help Group Bulletin Board. The forums are moderated by MBDC co-directors Charles D. Gerson, M.D.,a gastroenterologist and Mary-Joan Gerson, Ph.D., a clinical psychologist, both affiliated with Mount Sinai Hospital in New York. The Center's main focus is Irritable Bowel Syndrome. The aim for moderating the forums was to allow Drs. Gerson and Gerson an opportunity to interact with a wider population of IBS patients. At the beginning of March a new topic was added: Pain- when and why? The forum is described as: "At the MBDC, we have found it very helpful for IBS patients to be aware of the circumstances in which they suffer from pain. Is it time of day, weekday vs. weekend, related to meal-time or particular foods, related to stressful situations? Noting this may lead to more successful coping strategies." The complete MBDC forums can be accessed here: http://www.ibsgroup.org/ubb/ultimatebb.php?category=3 NEWS LINKS
[Sponsored Link] Breaking the Bonds of Irritable Bowel
Syndrome : A Psychological Approach to Regaining Control of Your Life
(click book for more information or how to purchase) This book offers a lifeline - providing a frank, open discussion of what is wrong and what one can do about it. Practical strategies are presented for identifying and dealing with triggers which set off or worsen symptoms. After reading this book, you will find that you have developed new skills which not only help you to better manage your IBS, but also lead you to an overall improvement in your quality of life. Dr. Bradley Bolen is involved in the IBS Self Help Group as moderator of the Cognitive Behavioral Therapy, Anxiety and Hypnotherapy and expert for the same forum title at the IBS Association - Ask the Specialist. Further information is available at http://www.irritablebowel.net/ MEMBER DONATION INFORMATION Consider making a donation to the IBS Self Help Group to support our efforts. Donations to the IBS Self Help Group help offset the internet fees for the website, administration expenses, the cost of mailings to individuals, and the cost to attend industry events. A suggested annual donation of $25 would help cover costs but a donation in any amount would be appreciated, although not required for membership. Visit http://www.ibsgroup.org/main/donate.html to make a donation. NEWSLETTERS Visit http://www.ibsgroup.org/main/newsletters.html for previous newsletters. MAILING LIST INFORMATION We sent you this email because you signed up for a username on the Bulletin Board at the IBS Self Help Group website and indicated that we could send you email. To CHANGE your preference for email, from the IBS Self Help Group, use the "My Profile" link on the IBS Bulletin Board, http://www.ibsgroup.org/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=edit_my_profile To REMOVE your username please write to ibs@ibsgroup.org with the words "Unsubscribe Membership" in the Subject line. © 1987-2002 IBS Self Help Group. All rights reserved. |
