Currently (MAR 2020), There is no ICD-10-CM diagnosis code in the United States specific to Lipedema. After reviewing this issue, I have identified three ICD-10-CM codes used in the USA for lipedema. Each one has its pros and cons. The three are:
R60.9 Edema
Q82.0 Familial Hereditary Edema
E88.2: Adiposis dolorosa; Lipomatosis dolorosa (Dercum’s disease)
An important strategy toward our goal of obtaining widespread medical reimbursement for lipedema as reconstructive would be advocating that the ICD-10-CM committee adopt the German ICD-10 codes for lipedema.
The German ICD10 codes for lipoedema (notice the difference in spelling):
E88.20 Lipoedema, Stage 1
E88.21 Lipoedema, Stage 2
E88.22 Lipoedema, Stage 3
E88.28 Other or unspecified lipoedema
I89.0 Lymphedema, not elsewhere classified
* In the United States, we use ICD-10-CM (Clinical Modifications); it is a version specifically created for use in the United States. While ICD-10 is used internationally, other countries use slightly different data sets (most notably, Germany, which has lipedema codes).
Search for Edema code R609 LIPEDEMAPROJECT
In the German lipedema guidelines (S1) (source 1)
The R60.9 ICD-10 code is listed in the first page of the S1 German lipedema guidelines.
In online lookups of lipedema I found the following:
http://smarticd10.health.belgium.be/default.php#!index/2014/D/4183
In one lookup for lipedema ICD-10-CM* code, it states:
Lipedema–See edema.
See link above
The same is found below
https://icdlist.com/icd-10/diseases-injuries/term/lipedema
Lipedema–See edema.
See link above
The problem with the note above is that edema (excessive water) is clearly not lipedema (abnormal fat deposits).
Disease Maps Lists R60.9 as lipedema (Source 2)
https://www.diseasemaps.org/lipedema/top-questions/icd10-icd9-code/
Lipedema R60.9
Localized adiposity E65.0
Abnormal Weight Gain R63.5
Symptoms involving musculoskeletal and heavy legs R29.8
The 3rd Source 2/22/2020 Is Lipedemaproject.Org
R60.9 Lipoedema is listed first.
Q82.0 Familial Hereditary Edemas is listed second.
A popular blog below
https://lipedemafitness.blogspot.com/2019/12/an-insurance-code-for-lipedema.html
states E88.2 is the closest. Note that this is in the same general category as the German codes but not lipedema.
The Lipedema Project list of developers is the most authoritative. With that being said, though, most are clinical experts and researchers, not professional medical coders and reimbursement experts–there is a difference.
Mark L Smith, MD, FACS
Guenter Klose, MLD/CDT
Professor Etelka Földi, MD
Stanley Rockson, MD
Jennifer Svahn, MD, FACS
Kimberly Gudzune, MD, MPH
Matthew Carmody, MD
Erez Dayan, MD
Catherine Seo, PhD
Copy Editor: Beatrice Sussman
Lipedema is not found anywhere in the ICD-10-CM index FEB 22 2020.
Thomas Wright, M.D., on his webiste states that there is no code for lipedema and the closest or best is:
Q82.0: Acquired Lymphedema and Hereditary Lymphedema (somewhat accurate but also not lipedema per Thomas Wright)
In the ICD-10-CM Index the edema code (R60.9) documents the following excludes and includes:
Edema, edematous (infectious) (pitting) (toxic) R60.9
Not that each code is from a different section of ICD-10.
R60.9 Edema [This is a Sign and Symptom code]
Q82.0 Familial Hereditary Edema [All “Q” codes are considered hereditary/congenital]
E88.2: Adiposis dolorosa; Lipomatosis dolorosa (Dercum’s disease) [An “E” code is an endocrine system code]
I would recommend R60.9 first and Q82.0 second. The E88.2 is a confirmed diagnosis (versus a sign and symptom code) but “dolorosa” are distinctly separate conditions from lipedema. The most important issue here is that without a specific code we cannot specifically track lipedema as a unique condition. We urgently need a specific lipedema code.