Lipedema got a ICD-10 code!

By Tatjana van der Krabben

ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO). It contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases. (Source: Wikipedia)

Lipedema was not part of this lengthy list. Over the years this issue came up now and then. Health insurances refused to cover certain treatments ‘because lipedema didn’t have an ICD-10 code and the applied code was inappropriate’. Some doctors refused to acknowledge the existence of lipedema ‘because it’s not acknowledged by the WHO and has no ICD-10 code’. It’s the Schrödinger’s cat of the medical world. Until a condition makes that list, you do not ‘know’ if it’s there or not.

Well, peekaboo, come 1-1-2017 lipedema will get this ultimate bureaucratic piece of evidence of its existence. There'll be separate codes per stage and a general, unspecified category, all placed under the general category of 'Lipomatosis' (ICD-10 code E88.2). The codes for lipedema will be:

Lipedema stage 1: E88.21
Lipedema stage2: E88.22
Lipedema stage 3: E88.23
Lipedema, other: E88.24

I threw in a little fist action, with a big YAS! when I heard about it last night, but I’m not throwing a parade just yet. It’s a start. It’s leverage. But it won’t make a difference over night.

But this is where it subtly can start working our way:

·        With the code you have a better starting position in any debate on treatment with your doctor. Because it’s proven and for real by your doctor’s standards. Try dodging that.

·        With the code you have a better starting point in debates with your health insurance. Again: proven is real and that makes it harder to ignore us.

·       With a code lipedema may become a less controversial research field. Making it more attractive to research or even make it actually possible for good willing researchers to defend a research proposition regarding lipedema to their peers, backers etc.

·       With a code negotiating coverage of effective treatment will becomes easier.

In the longer run it could mean more research, a chance at better treatment and covered care.

This piece of news was communicated via Germany, but as it’s an international list by the World Health Organization, it’s safe to get a little excited.  

Update: We were holding our breath to see what this recognition via Germany in the from of ICD-10 codes would mean for other countries. From people from the US we understand that updates are not accepted automatically. This will take more time, unfortunately. We're not entirely surprised. As changes impact healthcare and insurance it's not hard to understand that countries have seperate procedures. Understandable, but frustrating.