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Eos in the News!
People Magazine Article – 1/21/08 issue, page
121
Our own Annette Turner (one of the former
leaders of this support group) and her son Adam are featured in an article in
the
A family in
Congratulations to the
Stockdale Family of
**Update**: For anyone who
has saw 12/2/07 episode of Extreme Home Makeover (about the Stockdale Family)
and are nervous that your EE/EGID child may wind up like them, remember that
the kids in that particular family have more going on than “just” Eosinophilic
Esophagitis or Eosinophilic Gastrointestinal Disorders. Those kids have
problems in other organs, not just their GI tracts. While EE/EGIDs
themselves are definitely life-altering and awful to live with, they are not
fatal and they don’t spread to other organs.
Remember, if you are concerned about information you have
seen or heard on TV or elsewhere, address those concerns with your Dr to get
accurate information.
If you missed the show and want to watch it online, you can do
so at http://dynamic.abc.go.com/streaming/landing (just Click on Extreme Makeover Home Edition & look
for the Stockdale Family’s episode).
The
long-awaited ICD-9 codes are being addressed.
It is very important that you write to express your support for these
desperately needed codes!
Here is a copy
of a note from APFED addressing this:
Urgent support is needed to
create new ICD-9-CM diagnosis codes for
eosinophilic gastrointestinal disorders (EGID)s. Over the past year,
American Partnership for Eosinophilic Disorders (APFED) has been
working with the CDC's Center for National Health Statistics (NCHS)
to create unique ICD-9-CM diagnosis codes for eosinophilic
gastrointestinal disorders. We now need your support in writing a
letter of support for this proposal.
Requested codes include:
530.13-eosinophilic esophagitis
535.41-eosinophilic gastritis
558.41-eosinophilic gastroenteritis and eosinophilic enteritis
558.42-eosinophilic colitis.
We need unique ICD-9 codes for EGIDs in order to;
• Allow researchers to track or identify patients with these
disorders;
• Develop new treatments specific for EGIDs;
• Permit accurate reporting of EGIDs
• Improve awareness and coding
On September 28, 2007, Dr. Glenn Furuta (Associate Professor of
Pediatrics at The Children's Hospital Denver) presented Apfed's
request at the ICD-9-CM Coordination and Maintenance Committee
meeting held at the CMS Auditorium in Baltimore, Maryland. The major
comment following his presentation was a concern that the new codes
would make it difficult to differentiate between food allergic
diseases and EGIDs. We feel strongly that the current medical
literature supports that EGIDs are unique disorders and warrant
specific ICD-9 codes.
Final approval of these codes for inclusion in the 2009 ICD-9-CM
depends on your letter of support. Your letter will provide vital
evidence to the NCHS that unique ICD-9-CM codes are needed for
eosinophilic gastrointestinal disorders. Send your letter to NCHS
(and a copy to Apfed) by the
requests that you either fax or email your letter to Donna Pickett or
Dr. David Berglund at:
• FAX number (301) 458-4022
• Donna Pickett Email: dfp4@cdc.gov
• David Berglund Email: zhc2@cdc.gov
We encourage you changes or personalize the sample letter below.
Please use any of the information from the APFED website, this email,
or your own data to make your letter unique. If you have any
questions or comments, please contact us at (713) 498-8216 or
mail@apfed.org.
Thank you for your support of this very important
proceeding.
Sample Support Letter:
(Date)
Donna Pickett (or Dr. David Berglund)
National Center for Health Statistics
ICD-9-CM Coordination and Maintenance Committee
3311 Toledo Road, Rm 2402
Hyattsville, MD 20782
FAX number (301) 458-4022
Donna Pickett Email: dfp4@cdc.gov
David Berglund Email: zhc2@cdc.gov
Re: Support of new ICD-9-CM codes for Eosinophilic Gastrointestinal
Disorders
Dear Donna Pickett (or Dr. Berglund):
I (or your organization'
For Eosinophilic Disorders (APFED) proposal for the creation of
unique ICD-9-CM codes for eosinophilic gastrointestinal disorders as
presented on September 28, 2007. Since there are currently no
specific ICD-9-CM codes for EGIDs, these new codes will greatly
improve the accuracy and consistency of coding for these disorders.
The new codes will also help researchers identify and track EGID
patients, and aid in the development new therapies specific for EGIDs.
(If you have any data, personal experiences with EGIDs, or approve of
the code changes for eosinophilic gastritis suggested by Nelly Leon-
Chisen (AHA), you should also include this information in your
letter. In closing, you should urge NCHS to adopt unique ICD-9 codes
for eosinophilic gastrointestinal disorders)
While these disorders do have some aspects of allergy and immune
dysregulation, current medical literature demonstrates that
eosinophilic gastrointestinal disorders are unique and distinct
disorders, and thus merit their own unique ICD-9-CM codes. I urge
NCHS to adopt these proposed codes.
Sincerely,
Your name
Organization (if applicable)
Address
Phone Number
It’s
official! The first ever
“National
Eosinophil Awareness Week”
5/13 –
5/19/07
The resolution (House Resolution 296) was unanimously passed on
It is officially set for the 3rd week of May, every year
from here on out!
Having this week will help raise awareness for all eosinophilic
disorders
(EE, EGID, HES & Churg Strauss).
Next year there will be a lobbying day in DC.
Please keep that in mind, because it sounds like we’ll all be
invited to attend.
Congratulations to everyone who worked so hard to get this passed
(within a month, no less),
Thanks to the parents at APFED for initiating it,
~And~
THANK YOU to all of the congressmen & women
who agreed to co-sponsor the resolution!
The full text of the resolution is below:
H. Res.
296: Supporting the goals and ideals of National Eosinophil Awareness Week, and
for other purposes
HRES
296 IH
110th
CONGRESS
1st
Session
H. RES.
296
Supporting
the goals and ideals of National Eosinophil Awareness Week, and for other
purposes.
IN THE
HOUSE OF REPRESENTATIVES
Mr. LARSON of Connecticut
submitted the following resolution; which was referred to the Committee on
Education and Labor
RESOLUTION
Supporting
the goals and ideals of National Eosinophil Awareness Week, and for other
purposes.
Whereas the term `eosinophilic disorders' is a general term
used to describe a group of diseases and disorders caused by the production of
too many white blood cells called eosinophils;
Whereas eosinophilic disorders patients suffer from their
immune system attacking their body's own normal, healthy tissue, resulting in
inflammation or swelling;
Whereas an estimated 50,000 people are affected by
eosinophilic disorders in the United States, many of whom remain undiagnosed or
misdiagnosed;
Whereas inflammatory eosinophilic disorders are thought to be
both allergic and autoimmune diseases, such that the body's immune system,
which normally fights infections and viruses, mistakes common food proteins and
environmental allergens as foreign;
Whereas eosinophilic disorders cause chronic illness that
significantly impacts a person's quality of life and ability to attend school
and work, and dramatically alters dietary lifestyles;
Whereas some eosinophilic disorders cause life-threatening
and sometimes fatal illnesses by causing inflammation of the vital organs, such
as the heart, lungs, kidney, and gastrointestinal tract;
Whereas eosinophilic disorders are difficult to diagnose and
treatment is often delayed, resulting in unnecessary suffering;
Whereas many patients with eosinophilic disorders often have
severe long-term disabilities as well as the severe limitations imposed by the
disease itself;
Whereas some eosinophilic disorder patients will suffer
permanent irreversible organ damage as a result of delays in diagnosis and
proper treatment; and
Whereas the American Partnership For Eosinophilic Disorders
has identified the third week of May as an appropriate time to recognize
National Eosinophil Awareness Week in order to educate communities across the
Nation about eosinophilic disorders and the need for research funding, accurate
diagnosis, and effective treatments: Now, therefore, be it
Resolved, That
the House of Representatives--
(1)
supports the goals and ideals of National Eosinophil Awareness Week; and
(2) encourages health care
providers and the American Partnership for Eosinophilic Disorders to increase
education and awareness regarding eosinophilic disorders.