Lotronex Action Group Newsletter
Issue #2
Jan. 26, 2001
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NEWS FLASH!!! NEWS FLASH!!! NEWS FLASH!!! NEWS FLASH!!!
Our Lotronex website is up! Visit
http://geocities.com/lotronexactiongroup/index.html.
The Webmaster is Jeffrey Roberts, President & Founder IBS Self Help Group.
Send material for the website to
[email protected]
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Lotronex Action Group Mission Statement
The Lotronex Action Group seeks immediate access to the medicine
Lotronex (alosetron hydrochloride) under compassionate use or
investigational new drug guidelines while avenues for continued
marketing are explored between GlaxoSmithKline and the Food and Drug
Administration. Moreover, the 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.
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A minute with Coordinator Corey Miller
"I am a 30-year old architect who has suffered from severe IBS-D for
the last 20 years. I am originally from Florida and currently live
in Atlanta, Georgia. Like everyone else, Lotronex had completely
changed my life. My goal for the LAG is simple: I feel Lotronex is
not only safe, but extremely effective. Therefore, since it is the
only medicine introduced for IBS-D in the last 15 years, and it is
the only effective medicine, I feel it should be made available for
those of use whose lives depend on it. I was extremely surprised to
find that so many others had the same benefit from the medicine.
Also, I am very glad to see so many people, including Tom, Richard,
and Jeff (Roberts) put forth such an amazing effort and dedication to
not only help to form the group, but to get this medicine back on the
market. For all of us, and for the sufferers of IBS-D that were not
able to try Lotronex, I hope our group is successful."
Corey's focus as Coordinator is on communications between the FDA,
GSK, Public Citizen, and Congress.
Thanks to Corey Miller for his dedication and efforts thus far with
the LAG!
Next week's letter will feature a short bio on another of our
Coordinators.
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News from the Coordinators:
On Monday night, January 23, the LAG signed our 200th member�Lorraine
Burks! By Wednesday, we had 218 members. We are growing rapidly.
We have two e-lists, one for action
(http://groups.yahoo.com/group/lotronex) and one for support
(http://groups.yahoo.com/group/LotronexSupport). We are now
exploring ways to start a professional list.
Coordinator Richard Fireman reports that the New York Times is
working on our story! Denise Grady, a reporter for the New York
Times, has interviewed the members of the LAG Steering Committee.
Although there is no indication when or if the story will appear, a
Times photographer showed up at the office of one Steering Committee
member to take his picture. This is terrific news and we will keep
our eyes peeled for the story!
From Coordinator Corey Miller: it is confirmed that the FDA and GSK
had a meeting earlier this week on returning Lotronex to the market
and are currently in negotiations. Keep writing the FDA and GSK to
encourage them to work together in formulating an effective program
that will bring Lotronex back to us! We need to keep the pressure on
them. For more information, refer to his post at
http://groups.yahoo.com/group/lotronex/message/711.
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A special THANK YOU! to Marilyn Schuller for her help and input in
the letter to Public Citizen from the LAG. We appreciate it!
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What can you do to help?
This section will give you addresses and contacts you can write to,
telling your personal story of living with Irritable Bowel Syndrome
and your experiences with Lotronex. This section will also include
tips on how to improve your letters�how to make them more personal,
how to make a clear point, and how to draw a forceful conclusion.
The more we write, the better our voices will be heard.
As mentioned above, write the FDA and GSK and urge them to work
together on bringing Lotronex back. FDA's address is:
Food and Drug Administration
5600 Fishers Lane
Rockville, Maryland 20857
Or contact the FDA by phone at: 1-888-INFO-FDA (1-888-463-6332).
If you wish to contact them by email, you can use their feedback form
at http://www.fda.gov/comments/webform.html.
Contact GlaxoSmithKline at the following addresses:
Glaxo Wellcome Inc.
Attn: Customer Response Center
P.O. Box 13398
Research Triangle Park, NC 27709
By phone: 888-TALK2GW
To contact GSK by email, use their feedback form at:
http://www.imgw.com/forms/GWcoform.html.
Soon, address and contact information will also be posted on the web
page and in the database section of e-groups. Send material for the
website to Webmaster Jeffrey Roberts at [email protected]
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"There is one thing stronger than all the armies in the world, and
that is an idea whose time has come." Victor Hugo
IBS' time has come! No longer will we cower in our toilet stalls.
We need to come forward to the medical profession, to researchers, to
pharmaceutical companies, to the media�If our voice can be heard, we
will be helped!
"Heroes are created by popular demand, sometimes out of the scantiest
materials, or none at all."
Gerald W. Johnson, American Heroes and Hero-Worship
We have a rare opportunity to be heroes here. Not just to IBS
sufferers who benefited from Lotronex, but more importantly to
yourself. Think about how good you will feel knowing you took action
to help bring back a drug that helped you so much! Don't accept the
removal of Lotronex, fight it instead!
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Reminders:
E-groups is now yahoo!groups. When you log on to e-groups, you will
be prompted to convert your account to yahoo!groups.
Discuss your IBS symptoms and get news, research, help and more on
www.ibsgroup.org
GREETER VOLUNTEER NEEDED--The LAG is seeking a volunteer to become a
greeter for new members interested in joining our group. The posting
with requirements listed is located at
http://www.egroups.com/message/lotronex/594
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If you have any ideas/comments/feedback for the newsletter, please
email them to Jocelyn at [email protected]
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