International Classification of Diseases (ICD) codes
Why do they matter?
I was working on an article about the NICE guidelines but had to set that aside to contact my health insurance company about some confusing denials of coverage for my IV fluids. I get IV fluids every two weeks to help offset my low blood volume.
The following information probably deserves a trigger warning for anyone frustrated from dealing with health insurance companies.
Is this article for you?
If you are, like me, trying to get insurance to cover testing and treatments for ME that doesn't fall into the normal mainstream, you might find this helpful.
If you feel called to advocate for ME you might want to read this - even if you aren’t in the US. We know what happens in the US often ends up affecting other places in the world.
If those situations don’t apply, you can hopefully just enjoy this view looking up into a tree.
I spent 90 minutes yesterday talking with my health insurance agent to sort out why some of my IV fluid treatment submissions were being denied. (Note: We send the forms in exactly the same way and some go through fine while others do not. They really need to train their staff!)
Because I get my IV fluids every 2 weeks at a non-preferred provider who doesn’t handle insurance, I have to submit the forms via regular mail. (My trusted supportive husband handles that.)
Health insurance requires a variety of codes to cover a procedure. For the IV fluids I am getting, there is a CPT code for the procedure of IV fluids, a Healthcare Common Procedure Coding System code for ringers lactate, and an NDC code for the prescription of the fluids. Aside from those, they require a valid diagnosis code.
When having ME or any of the other marginalized diseases which require out of the ordinary testing or treatments, the system becomes a gauntlet of frustration for doctors and patients.
What I learned from my insurance service agent was very concerning when it comes to the ME diagnosis code.
Somewhere in the conversation about my denied claims it became clear that one of the problems is the ME diagnosis code G92.32 is coming up as a non billable code. There were other issues, but this was a significant piece of information.
About ICD Code for ME
The US no longer uses the same ICD code for ME that is used in the rest of the world. Prior to Oct 2022, the code for ME in the US was G93.3 (the same as the rest of the world).
NOTE: The new WHO ICD-11 code for ME that is equivalent to G93.3 is 8E49. See more information about ICD codes provided by Suzy Chapman, Dx Revision Watch HERE.
With some effort, and supportive doctors, I received the diagnosis of ME with a G93.3 code. Under the G93.3 diagnosis code, I was able to get a SPECT scan covered a few years ago. That also took phone calls and an appeal to my insurance company, but it finally went through using that code. The ME IC Primer was extremely useful in helping me get the G93.3 code as well as make a case for the SPECT scan.
Back to the IV fluids. I have been submitting claims for this service since 2021, using the code for ME - first G93.3 then G93.32. When talking with the health insurance service agent, I was informed the diagnosis code of G93.32 was flagged as unusable which had led to the denial of some of my claims. I asked her to double check for G93.3 and she confirmed that is also an unusable code.
The submission forms for my IV fluids also included my diagnosis code for low blood volume and that went through just fine. So in future that is the only code I will be using for IV fluids. Despite the fact that ME is the cause of my low blood volume, the coding will no longer reflect that connection.
In a nutshell it appears that my insurance has decided to change how they view the ME diagnosis code.
Why Do I Think G93.32 is No Longer a Viable Billing Code?
1. G93.32 lumps multiple conditions together including chronic fatigue syndrome.
See details of how that happened in the blog titled Clarity for All. From that article:
“The U.S. International Classification of Diseases (ICD-10-CM) number for myalgic encephalomyelitis is now G93.32. This change combines ME, CFS and ME/CFS under this same code. “
2. Since the time of that publication, the G93.32 diagnosis code has been expanded by at least one major health record company to include long covid with chronic fatigue. For more information, please see my article here titled Burying ME using ICD Codes. (See the second half of the article.) From that article:
It has come to light that one of the largest providers of electronic health records information services, EPIC, is informing doctors that G93.32 also applies to “Long Covid with chronic fatigue” along with several other labels.
My assumption is that because G93.32 now encompasses a broad spectrum of patient groups, that my insurance company no longer sees that as a specific enough diagnosis to warrant the need for this treatment.
What the service agent couldn't tell me is if that G93.32 was denied for this specific treatment or was unusable for any treatment. I already knew that G93.3 is now an unusable code for any procedure.
Advocating for Best Possible Care for PwME (people with ME)
Real world consequences need to be taken into account when advocates and organizations make proposals to change ICD codes that affect people with ME. Many of us were concerned about the consequences of separating US coding from the rest of the world as well as losing the code for ME as a separate disease from CFS. Apparently with good reason....
The purpose of a diagnosis code is to track the prevalence of "a" disease. Because we no longer have a specific code for ME, there is no way to track it separately from all of these other conditions.
I would like to see advocates for ME follow the recommendations of the experts who wrote the following in the International Consensus Primer on pg ii.
“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
The problems for tracking ME don't end there. See my concerns HERE about the most recent proposal for adding a code for post exertional malaise.
ME is a distinct disease. We deserve to be tracked accurately & treated appropriately!
Colleen