POTTY PEOPLE MOBILIZATION!!!!

[Zizzle]

Another member pointed out the release of the proposed ICD-10 medical diagnosis coding system, which would take effect in 2013. This expands the current 18,000 dx codes to 140,000. The shocker here is that it still does not include MC, CC or LC!!!!!!!! You can see the colitis-related codes here:

http://graphicsweb.wsj.com/documents/ME ... rm=colitis


We will again be lumped into: K5289 Other specified noninfective gastroenteritis and colitis

although I'd argue we should be: K522 Allergic and dietetic gastroenteritis and colitis


This is our moment to be recognized, at last, and be counted in the future. I posted this message in another thread. Please take 5 minutes to write to CMS...believe me, they cannot ignore us.


*****************************

OK FOLKS...I'M SERIOUS ABOUT THIS....WE NEED TO MOBILIZE ABOUT THIS RIGHT NOW. I'M ASKING EVERYONE HERE TO SEND FEEDBACK TO CMS, SIMILAR TO THE MESSAGE I JUST SENT. THIS ICD-10 SYSTEM IS NEW AND THEY ARE ALWAYS LOOKING FOR FEEDBACK FROM THE PUBLIC. Beleive it or not, the public rarely weighs in on this kind of stuff. I work for various HHS agencies and I know how to get their attention. This is how we start, and then we follow-up, for as long as it takes, until we get what we want.

PLEASE, send a message to CMS about the new ICD-10 codes at the following link: https://questions.cms.hhs.gov/app/ask/p/8,11,981

Here is the message I just sent. Feel free to copy and edit to make your own.


Section: Medicare, coding, ICD-10

Message:

Why no code for Lymphocytic or Collagenous Colitis (aka. Microscopic Colitis)??

I examined your new medical coding system in shock and disbelief. You have hundreds of codes for strange animal encounters, watercraft injuries, etc. and yet again, not a single code for Microscopic Colitis, a disease that is growing exponentially, especially among Medicare recipients. How did this happen? Can Microscopic Colitis, or more specifically, Lymphocytic Colitis and Collagenous Colitis be added? This disease is growing in prevalence and affecting people's quality of life and ability to work and raise their families. Without proper diet and treatment, sufferers can experience dehydration, malabsorption, malnutrition, and triggering of other autoimmune diseases. Without a proper diagnosis code, researchers, insurers and medical providers can't quantify the extent of the population affected. Please let me know how I can advocate for inclusion of this important disease in the diagnostic codes. Thank you.


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WE CAN DO THIS!!

[Zizzle]

I got a status notification already. I hope it means it moved up to someone else for a knowledgeable reply.

Your feedback has been received.

Question Reference #110914-000048
Summary: Why no code for Lymphocitic or Collagenous Colitis (aka. Microscopic Colitis)?? ...
Product Level 1: Medicare
Product Level 2: Coding
Product Level 3: ICD-10
Date Created: 09/14/2011 12:38 PM
Last Updated: 09/14/2011 12:38 PM
Status: Fwd to Resource

[JLH]

Got mine back as well.

[Zizzle]

Doh! I just realized I misspelled Lymphocytic in my post. Oops!!

[harvest_table]

Thank you Zizzle, I'll follow up.

Love,
Joanna

[Zizzle]

I got a reply from CMS today.

Thank you for your inquiry requesting how to advocate for inclusion of Lymphocytic or Collagenous Colitis (also known as Microscopic Colitis) in the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM).

The Centers for Disease Control and Prevention (CDC) has the lead on the development of ICD-10-CM diagnosis codes. Should you want to request that a code(s) be created for lymphocytic or collagenous colitis; you should address this request to Donna Pickett, CDC at dpf4@cdc.gov. To be as helpful as possible and for information on the creation or modification of codes through the ICD-9-CM Coordination and Maintenance Committee (which also handles ICD-10-CM), we suggest that you visit the following link: http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm.

We appreciate the opportunity to address your concerns.

I work with CDC for my regular job, so I'll email the contact she mentioned and see if I can start a dialogue. Fingers crossed!!

[nancyl]

Zizzle,
I sent mine in. Thank you for being so on top of things.

Nancy

[Lesley]

I just sent mine.
I HOPE this works. The importance of the ICD-9 codes for sick people cannot be over emphasized.

[Zizzle]

Hi everyone,
Here's the email I sent to the contact at CDC. I took the liberty to say I was representing all of you. Hope you don't mind.

Dear Ms. Pickett,
I recently submitted the following request to CMS about adding a new diagnosis code to the ICD-10-CM. I understand you are the lead on this project, and I'm hoping there is still time to add or modify codes. I represent a consumer group with 952 members around the world diagnosed with either Lymphocytic or Collagenous Colitis, commonly known together as Microscopic Colitis. It is an Inflammatory Bowel Disease, similar to Crohn's and Ulcerative Colitis. MC is non-infectious, has multiple etiologies, and is linked to a number of autoimmune diseases, including celiac disease. Our group is not easy to find, and yet we welcome new members daily -- LC and CC are no longer rare diseases. A common experience for many patients is that medical billing requirements do not allow their doctors to enter an accurate diagnosis code. In the proposed ICD-10-CM, the only options are:

K522 Allergic and dietetic gastroenteritis and colitis (we know diet and food allergy and intolerances are related to MC, but this is not an accurate code)
K5289 Other specified noninfective gastroenteritis and colitis (MC should minimally be a subcategory here, with LC and CC as subcategories of MC)
K529 Noninfective gastroenteritis and colitis, unspecified (too general)
K580 Irritable bowel syndrome with diarrhea (this is a completely inaccurate code, but is used nonetheless)
K591 Functional diarrhea (again, inaccurate)

Our group wishes to understand more about the prevalence of MC, but without specific codes, it's virtually impossible to estimate the proportion of the population affected. There are researchers looking into the causes and treatment of MC, but until we have prevalence data, there will be very little interest in studying the disease. MC is helped by a number of drugs (Entocort, Asacol, Lialda, etc), which can also be difficult to get insurance coverage for without an accurate diagnosis code. The ICD-10 has 28 codes for Crohn's Disease, 24 codes for Diverticulitis, and 49 codes for Ulcerative Colitis. Yet researchers estimate more people suffer from MC than Crohn's.

I would be happy to furnish you with any data you might need to support the inclusion of codes for MC. Ideally, there should be an overall code titled "Microscopic Colitis," with sub-category codes for "Lymphocytic Colitis" and "Collagenous Colitis."

Please let me know how this process goes forward and what I might do to help it along. I have lots of frustrated patients and doctors depending on me. Thank you so much. I look forward to hearing from you.

[Zizzle]

This is who I emailed:

Donna Pickett
Medical Systems Administrator
Classifications & Public Health Data Standards Staff
Office of the Director
National Center for Health Statistics, CDC
3311 Toledo Road, Room 2337
Hyattsville, MD 20782-2002
Phone: 301-458-4434
Fax: 301-458-4022
E-mail: dfp4@CDC.GOV

[tex]

I hesitate to bring this up, but I am aware of at least a dozen known types of MC, with unique markers. Most people, (including GI docs), are lucky to even be aware of the 3 common ones, (LC, CC, and MC). Technically, MC does not mean either LC or CC, as many people believe - it implies a case which shows the markers of both LC and CC. There are at least 9 additional types, though.

Tex

[Polly]

Tex,

When did they change the definition of MC? I have always been under the assumption that either LC or CC could be lumped under MC. If MC had to have characteristics of both LC and CC, then it would always be CC - since both LC and CC have lymphocytes but only CC has the thickened collagen. I thought MC was a generic term for any kind of colon changes seen under the microscope.
Help - I am confused........

Love,

Polly

[tex]

Polly,

LOL. I figured that would get a rise from someone. Actually, as far as I'm aware, it hasn't been changed. That was just my opinion of the moment. There have always been two schools of thought on this issue. The one you mentioned, and the one I mentioned. Early on, when there were only 2, (or 3, depending on how you look at it), types of this disease, the either/or description made sense, but now that they are a dozen different types, that version doesn't seem to fit as well. I was merely repeating what someone had proposed, as a way of clarifying the situation, but as you pointed out, that's doesn't seem to be a popular position. Personally, I agree with you, except that I feel that it should apply to all of the different types of the disease, since they're all actually different forms of "microscopic" colitis.

If I recall correctly, the justification for defining MC as the case where both markers were present, required lymphocyte counts that were sufficient to indicate a diagnosis of LC, and collagen band thickening sufficient to indicate a diagnosis of CC. While it's true that lymphocytes are always present with CC, I believe that the counts are typically below 20 cells per 100 enterocytes.

But here's the problem:

Actually, just as lymphocytes are always present with CC, likewise, collagen belt thickening is actually virtually always present with LC, as well - it's just below the defined arbitrary limit of 10 microns. Check this reference, for example:

In lymphocytic colitis, the thickness of the subepithelial collagen ranged from 6 to 10 microns in 4 cases and was less than 6 microns in 3 cases (median 6.24 microns). The median number of intraepithelial lymphocytes in surface epithelium was 22.35 (range 18.2 to 40) in lymphocytic colitis versus 12.22 (range 4.6 to 24.4) in collagenous colitis. In conclusion, we observed an overlap of both the collagenous plate thickness and the number of intraepithelial lymphocytes in collagenous colitis and lymphocytic colitis. This result favours a unified histogenesis for these two entities.

http://www.ncbi.nlm.nih.gov/pubmed/9090931

But note that a normal, (undiseased), colon typically has 5 lymphocytes per 100 enterocytes,

yet the lymphocyte count for CC typically exceeds that, (average 12.22 in the study above). The reference value for a normal lymphocyte count came from this reference:

http://www.histopathology-india.net/MCo.htm

and

Studies of the colon have indicated a collagen table thickness with an upper range of 3 to 7 mu as normal (17, 18).

Yet in most cases of LC, (from the study mentioned above), the collagen thickness ranged from 6 to 10 microns. The normal collagen band thickness range listed above, is from the following reference:

http://www.nature.com/modpathol/journal ... 0101a.html

Yes, it definitely is confusing. So why don't they just call it all one disease, and be done with it? So what if it has various types of markers in various forms?

It's no wonder that it doesn't have an ICD-10 code. Should it have 1, or 3, or 12, or? Surely someone will describe one or more additional unique forms of MC within the next year or so.

Love,
Tex

[Zizzle]

Tex,
If I happen to enter into a dialogue with this CDC person, I'm happy to raise the issue that other forms of MC also exist, and *might* be considered for inclusion. Of course we'll all be happy if we can get just one, MC. But since UC and diverticulitis get dozens of codes for locations and other factors, why shouldn't we?

Please send me a list of the other recognized forms so I can have it handy.

Personally I subscribe to the theory that LC and CC are on the same disease continuum. It seems CC may have worse symptoms, and LC seems to happen in younger people, so CC may just be an advanced form of overall MC?

[tex]

MC with giant cells, paucicellular and asymptomatic lymphocytic colitis, clear cell colitis, (pediatric), MC with granulomatous inflammation, MC not otherwise specified, (NOS), cryptal lymphocytic coloproctitis, and other variations of similar histopathological changes, such as Paneth cell hyperplasia, or epithelial degeneration.5-8

5. Lukasz, L., Dariusz, W., & Jacek, P. (2006). Histopathological diagnosis of microscopic colitis. Journal of Gastroenterology and Hepatology, 21(5), 792-797. Retrieved from http://cat.inist.fr/?aModele=afficheN&cpsidt=17879076

6. Iwai, H., Hisamatsu, T., Iizuka, H., Oyama, T., Higuchi, H., Imaeda, H., . . . Hibi, T. (2007). Microscopic colitis with granuloma which responded to steroid therapy. Internal Medicine, 46(18), 1551-5 . Retrieved from http://lib.bioinfo.pl/pmid:17878641

7. Goldstein, N. S., & Bhanot, P. (2004). Paucicellular and Asymptomatic Lymphocytic Colitis. American Journal of Clinical Pathology, 122(3). Retrieved from http://www.medscape.com/viewarticle/487838

8. Józefczuk, J., & Wozniewicz, B. M. (2008). Clear cell colitis: A form of microscopic colitis in children. World Journal of Gastroenterology,14(2). doi: 10.3748/wjg.14.231

Tex