|
|
 |
|
|
|
|
(Response to an editorial May 2001 in the British publication The Lancet.)
Horton and The Lancet Fall into Public
Citizen Snare of Sell Copy!
The Lancet, following the leadership of it's editor Richard Horton, has sadly joined
those other media publications whose primary objective is selling copy rather than accurate information and now appears to
be practicing what was once referred to as 'yellow journalism' or, journalism without integrity. The puppet-like quotes Horton
uses in his recent editorial criticizing the American FDA for attempting to work with drug manufacturer GlaxoSmithKline in
an effort to restore Lotronex to hundreds of thousands of suffering patients are directly from the mouth of Public Citizen.
Public Citizen has no 'formal' place at the table with the American FDA and GlaxoSmithKline negotiations but ill informed
high profile writers like Horton try to place them there, the 'real' public be damned! Unfortunately the Public Citizen presence
is keenly felt in those negotiations because of the ongoing confidential information that is continually filtered to them
by disgruntled FDA employees. Employees who, in any other organization, would be summarily dismissed for such activities!
This illegal pipeline provides Public Citizen with the means to exert pressure at strategic moments in the negotiations thereby
allowing them to manipulate same.
Public Citizen refuses to acknowledge the results of further independent reports on
those who suffered ill effects while taking Lotronex. As an example some of those results can be read at the UCLA/CURE Neuroenteric
Disease Program Newsletter at http://www.med.ucla.edu/ndp/
Public Citizen continues to claim five deaths are attributed
to Ischemic Colitis brought about by taking Lotronex although this has been determined to be incorrect.
Public Citizen
continues to claim IBS is no worse than the common cold even though they have themselves been the recipients of untold numbers
of letters and emails disputing that claim directly from those who suffer the horrors of IBS-D.
Public Citizen continues
to claim that Lotronex has no more beneficial effect than a placebo in spite of the countless letters and emails vehemently
disabusing them of this claim from those who know first hand.
Public Citizen continues to release the same old inaccurate
and incomplete charts and reports declaring Lotronex to be a deadly drug while claiming them to be 'new' information.
It
is indeed a sad day when a venerable publication like The Lancet becomes just another check-out lane scandal sheet.
petitiononline.com/LOTRONEX/petition.html
Too Much Time...
...to think when you're sitting on the toilet waiting for the next bout because you're too exhausted
to keep going back and forth from the bed to the bathroom. I've managed after more than 62 years with IBS-D, to learn to set
up my bathroom so I can at least have some support to keep me from falling off and cracking my head on the floor, or door
facing, or cupboard. Toilet paper holder at just the right height and a TV tray in front of me to lay across when I start
blacking out from the pain. Thick bath towels handy to cover my legs and shoulders after I'm soaked from the cold sweats.
Then my mind starts to wander...
What ABOUT those 66 or so deaths caused by Acutane for Acne (a non-life threatening
problem)? And the ones caused by Viagra, Celebrex, etc., etc., etc........? Surely impotence isn't considered life threatening,
is it?
Oh, and how about all the TV ads for Celebrex, etc. with the voice over warning of deadly side effects? Let's
let GSK do the same for Lotronex and maybe people taking it would be more aware of the need to be cautious? Then the rest
of us could go back to taking it and get on with our lives.
Like I said, my mind wanders when I'm sitting on the
toilet...
|
|
|
|
|
|
|
|
|
| What the fight is all about! |
(This paragraph accompanied information sent as a press release to hundreds of newspaper editors throughout the country.)
LOTRONEX is a prescription medication for those who suffer with Irritable Bowel Syndrome. It was on the market for nine
months last year. Since writing this petition I have discovered there are also many men who have benefited from Lotronex and
are equally devastated at it's withdrawal. I hope you will take the time to read this petition carefully and sign it, as well
as share with your staff, their friends and families. This is a widespread, rarely discussed illness because of the very nature
of the disorder. It is also a life threatening condition in terms of the years of suffering (my own add up to 65) and the
hopelessness of the condition leading to suicidal actions on the part of its victims. If nothing else, a tiny handful of people
should not have the power to slam the doors of a normal life in our faces with impunity, nor should they have the power to
force the FDA to play medical politics in order to achieve good press
Response to The Reuters article of 5/17/01
[Your article of 5/17/01]...is inflammatory and ill advised in the extreme.
The five deaths Public Citizen insists were attributed to Lotronex use have in fact been proven to be bacterial infections
in four and inconclusive in the fifth as it was an elderly Alzheimer patient who's M.D. should never have prescribed the drug.
I believe that case is now in litigation.
The quote from The Lancet's editor, Richard Horton, said "many within
the drug watchdog now wanted to bring Lotronex back and he accused the FDA in an editorial of becoming "the servant of
industry", alleging private communications with Glaxo had subverted official procedures."
What a load of hog
wash! The Lotronex Action Group has been the power behind the drive to return Lotronex to the market for the millions of IBS
sufferers worldwide! Official procedures of the FDA have been clearly compromised by the insidious practices of Public Citizen
working to further their own hidden agenda. Yes, the FDA and Glaxo are communicating, in an effort to provide the drug once
again to those in dire need because of the horrors of IBS! Your publication making unfounded claims to the contrary exhibits
a profound indifference to suffering. If you would like corroboration of that suffering try visiting a petition which is online
right now for the return of Lotronex. http://petitiononlineLOTRONEX/petition.html The signers of that petition have been offered
the opportunity to comment on the subject. Read those comments and then re-evaluate your position.
Visit My Friend Sally & Learn More About Collagenous Colitis
To Read More Visit My Friend Hope at ExtraLove.com
rEAD tHE pETITION!!!
|
|
|
|
|
|
|
.............................. MY OWN STORY I've been struggling with excruciating pain and explosive diarrhea
in public places for 62 years! My first memory of this disease is fainting on the way to the bathroom from the awful pain.
My mother was helping me because she thought I had the flu and I came to with my aunt applying a cold cloth to my head and
my mother a warm cloth to the other end cleaning me up. I was four years old. My now 91 year old aunt tells me it actually
began when I was three.
When I was seven I had an episode on the way to school one day and got within a block of the school out of the four I had
to walk when the pain got so bad I could no longer stand upright or control my bowels. I ended up with hot feces running down
my legs filling my shoes and on down to the ground. I then had to walk back home in this condition, in daylight. Certain in
my seven year old mind that behind every window was someone witnessing my horror and humiliation. Nowhere to hide.
All these years I've struggled with establishing the location of the nearest toilet uppermost in my mind. During the 90's
I was blessed with the ownership of a completely self-contained motor home. Such joy you can't imagine, and freedom! I carried
my toilet with me yet, I still couldn't make it sometimes and necessarily opted for the shower instead of the stool. I tried
numerous medications, special IBS diets along with fiber cookies and drinks and walking 2 miles a day for years, and found
merely temporary relief for the diarrhea, but no relief for the vague uneasiness in the gut that was my constant companion.
I've left enough ruined and soiled underwear in public restrooms to supply the Dallas cheerleaders for life. The drivers
seat in every automobile I ever owned has been the cleanest part of the car since it got shampooed so frequently. I went on
a trip in '91 up the West Coast from San Diego to Seattle with friends in a van and took so much Lomotil I sounded like I
had laryngitis every evening, very sexy but also very dangerous.
In February 2000 I was approached to be a subject
in a clinical research study for Lotronex and I knew within the first 24 hours that I had not been given a placebo. That vague
uneasiness in the gut disappeared along with the diarrhea. I realized I was actually becoming mildly constipated! WOW! First
time in my life! All of a sudden I could eat like a real person! I could even eat all the fruit I so dearly loved! And drink
coffee! And travel...and give up DEPENDS!! Life was GOOD!
Since that Black Day of November 28, 2000...when GlaxoWellcome
withdrew Lotronex from the market, I collected and hoarded and continued to use Lotronex. I began doing my part as a Lotronex
Activist, too. The last thing I wanted to do at my age was publically disclose my bathroom habits! However, desperate times
call for desperate measures so I wrote a Petition for the Return of Lotronex which is posted at Petition Online. There are
those who disagree with the content, and that's their privilege, but basically I feel it's accurate as far as the information
I was able to glean from a variety of sources on and off the 'Net at the time I wrote it. Since then I've learned that only
one of the deaths Public Citizen claimed from Ischemic Colitis was actually Ischemic Colitis and that no connection to Lotronex
could be found. The other reports to the FDA of Ischemic Colitis attributed to Lotronex were in fact bacterial infections.
I've also learned that many, many, men successfully took Lotronex and are just as desperate for its return.
The single
most important message of my petition, after the appeal for the return of Lotronex is, PATIENT RESPONSIBILITY! In a society
that gibbers hysterically at the thought of taking responsibility for ourselves, our choices, and our actions this is not
a popular message. Nonetheless, it's mine, and you who agree with me please stand up and be counted by signing my petition
Sincerely,
Verna Eileen Radcliffe
petitiononline.com/LOTRONEX/petition.html
|
|
|
|
