Sunday, July 20, 2008

Great News - Medical Codes for EGIDs Approved

Below is a copy of the press release from APFED regarding the new medical codes for EGIDs. This is great news and a very big step forward. Prior to this we had no idea how many people suffered from this disease, ages, etc. It was not tracked properly because there was no coding. Now we can begin to collect this information and use it to help make the changes needed. We're so happy, yet there is still so much to do.


American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond, TX 77469
http://www.apfed.org/

For Immediate Release

Contact: Beth Mays, APFED President, 713-498-8216, beth@apfed.org

APFED Announces Approval of ICD9 codes for Eosinophilic Gastrointestinal Disorders

(July 15, 2008) APFED announced today that ICD-9-CM codes have been approved for
Eosinophilic Gastrointestinal Disorders, EGID, by the National Counsel for Health Statistics, NCHS. APFED submitted its proposal to the NCHS in September 2007 for four diseases: eosinophilic esophagitis, gastritis, gastroenteritis and colitis, all types of EGIDs. Thousands of patients suffer from these debilitating disorders; however until now they could not be coded correctly, making it difficult for medical professionals or researchers to determine how large a percentage of the population had these disorders.

The ICD-9-CM coding system is an international classification system which groups related diseases and procedures for the purpose of reporting statistical information. ICD- 9-CM codes provide a uniform language, and thereby serve as an effective means for reliable nationwide communication among physicians, patients, and third parties (QCMetrix.com). ICD-9-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.

Even though suggestions for ICD-9-CM codes are normally not initiated by patient advocacy organizations, APFED, in keeping with its progressive mission to create awareness of EGID, felt the need to be at the forefront of these requests. Over the last two years, APFED worked with the Centers for Disease Control and Prevention’s Center for National Health Statistics to create unique ICD-9-CM diagnosis codes for EGID.

"Approval of these ICD-9-CM codes will permit accurate classification of these disorders and bring recognition of EGID to a new level", stated Beth Mays, APFED President and Founder.

NCHS has classified the following codes to designate the specific catagories of EGID:
530.13 Eosinophilic Esophagitis
535.7 Eosinophilic Gastritis
558.41 Eosinophilic Gastroenteritis
558.42 Eosinophilic Colitis

Eosinophilic Gastrointestinal Disorders, EGID, are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Recent demographic studies estimate that more than 1:2000 children live with eosinophilic esophagitis, in which only the esophagus, the tube connecting the mouth to stomach, is affected. Statistics on the adult population are currently unknown.

As the medical community becomes more aware of Eosinophilic Disorders, these numbers are expected to rise. Due to the lack of awareness among the medical community and the general public of these disorders, patients may wait 2 to 4 years to obtain an accurate diagnosis and receive proper treatment. More often than not, these disorders are misdiagnosed as other diseases.

Treatments for these disorders include total food elimination, requiring patients to live off an elemental formula which can be taken either orally or via a feeding tube; limited/restricted diets; and/or steroid treatments. There is currently no cure for EGID.

EGIDs are becoming increasingly common, with an incidence similar to household names such as Crohn’s and ulcerative colitis. Due to lack of accurate reporting, the true prevalence is not known, a problem APFED feels the new ICD-9-CM codes will solve. Unique codes are needed in order to allow researchers to track or identify patients with these disorders, develop new treatments, permit accurate reporting of EGIDs, and improve awareness.

APFED, a non-profit 501(c)3 volunteer-run patient advocacy organization, supports patients and families living with eosinophilic disorders.

For more information, please contact Beth Mays at 713-498-8216.

American Partnership for Eosinophilic Disorders (APFED) is a 501c3 non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.

4 comments:

  1. I just got diagnosed yesterday for this disease and found this very interesting all the things that have just happened with this disease..I have told my doctors for years that I would choke on food and food would come up all the time but no one listened until two months ago when they finally sent me to a GI specialist and she started testing me and then did the scope last week...thanks for the information...Cheryl

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  2. Hi Cheryl, I'm happy you finally got a diagnosis to work with. (Of course, I'm not happy this is what you have.) But at least you can now do things to improve your life. My son's GI is urging my husband to see a GI asap as he has some "red flag" symptoms as well. Good luck!

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  3. Hi Cheryl, I have a 18 month old son that was diagnosed with EE several months ago. We are struggling with the disease on a daily basis. We are on a very restricted diet at the moment, applesauce and bananas. Our GI wants to put Constantine on a feeding tube because he is not gaining weight. We are fighting the feeding tube with all our strength. I am posting to let you know as well as all the other members that my husband and I have submitted a project to American Express for EE research. The project is up for nomination. The more votes we get the more of a chance we have to receiving the money. The money would be going to the APFED organization. Please visit www.voteforEE.com and nominate the project. Pass the message along to anyone else that will help. The more people the better. Please help, so that we can hope for a better future for our babies and all the other people affected by this horrible disease.

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  4. I have voted and spread the word to my friends and family to get them to vote!

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