Updates on status of ICD-11 and changes to other classification and terminology systems

For completeness, this is how

U09.9 Post COVID-19 condition, unspecified
> Post-acute sequela of COVID-19


is coded for in the ICD-10-CM Tabular List 2024:



Edited to add: I assume that if these proposals are approved and implemented the following terms would be inserted under chronic respiratory failure (J96.1-) in alphabetical order: post-exertional malaise (R68.85); myalgic encephalomyelitis/chronic fatigue syndrome (G93.32).


The patient made term, "Long Covid" has not been added to the Tabular List but it is included in the Index as "long [COVID-19]", and "long haul [COVID-19]" and is coded to U09.9. Note the Index is set out so as not to have to keep repeating a term (in this case "COVID-19").


Index:



I don't know why one or more of the LC advocacy groups has not submitted for having the term "Long COVID" added to the Tabular List, citing ICD-11 as precedent.

In ICD-11, "long COVID" is listed under Synonyms under RA02 Post COVID-19 condition and is coded to RA02; I believe it was added by the WHO in 2020:

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/2024855916

RA02 Post COVID-19 condition

Synonyms

• postCOVID condition
• post-COVID-19 condition
• long COVID

 

I looked into various ways Drs might utilize the PEM code that would interfere with getting an ME (ME/CFS & CFS) diagnosis of G93.32 when I originally looked into this proposal. I created this chart. See article here: https://meglobalchronicle.wordpress...myalgic-encephalomyelitis-me-using-icd-codes/

Chart does NOT include this most concerning aspect from the 2nd proposal. This question raised by DX Rev Watch is probably a more likely scenario for a doctor offering a new diagnosis for someone who comes in "post viral" with PEM.

I would not expect a doctor or a patient to see a need to switch from G93.31 or G93.39 + R68.85. Most doctors & patients have very little understanding that the ME diagnosis offers insight into the neurological, immunological and cardiac issues as described in the IC Primer. The primary focus is on behavior modification of pacing, diet, supplements, etc. Once given a post viral + PEM code, there is little incentive to update to G93.32. Switching to G93.32 would not offer any more coverage for testing or treatments from insurance. In my experience doctors only change codes if it will bring better insurance coverage.

In order to obtain more treatments that might be helpful they would just add more codes, like the new POTS code, in order to obtain more effective treatments.

This road looks to me like it will lead to the G93.32 code being of little use to Drs or patients.

 

The American Health Information Management Association (AHIMA)* has published its feedback on ICD-10-CM proposals for consideration for implementation in October 2024 and also comments on proposals for consideration for implementation in April 2004:

AHIMA's comments on the PEM proposal can be found below and on pages 6 and 7 of this PDF:

https://www.ahima.org/media/mstmqj4...ctober-1-2024-implementation-final_signed.pdf

Post-exertional Malaise/Post-exertional Symptom Exacerbation

While we support the proposal for a new symptom code for post-exertional malaise, we recommend that the code be placed in subcategory R53.8, Other malaise and fatigue, rather than in subcategory R68.8, Other general symptoms and signs. It does not make sense to create the new code in subcategory R68.8 when category R53 specifically classifies types of malaise and fatigue. Also, by not locating post-exertional malaise with other types of malaise and fatigue, it may be miscoded to code R53.83, Other fatigue. If the new code is created in subcategory R68.8, an Excludes1 note should be added under subcategory R53.8.

To prevent misuse of the new code, we recommend that Excludes1 notes be added for types of malaise and fatigue classified to other codes in the classification that might be confused with the type of malaise classified to the new code. For example, fatigue due to excessive exertion is classified to code T73.3.

​

*"AHIMA is a global nonprofit association of health information (HI) professionals. AHIMA represents professionals who work with health data for more than one billion patient visits each year. AHIMA’s mission of empowering people to impact health drives our members and credentialed HI professionals to ensure that health information is accurate, complete, and available to patients and providers. Our leaders work at the intersection of healthcare, technology, and business, and are found in data integrity and information privacy job functions worldwide."

 

The next meeting of the ICD-10-CM Coordination and Maintenance Committee is scheduled for March 19-20, 2024.

The Tentative Agenda has been released:

https://cdc.gov/nchs/data/icd/Tentative-Agenda-March-2024.pdf

Topic 24: Post-exertional malaise

So the proposal for adding a new code for PEM, first discussed at the March '23 meeting and re-presented with significant modifications in Sept. '23, is back on the agenda for discussion at this forthcoming March meeting.

I am not aware whether the PLRC has posted an updated proposal or whether we will have to wait until the full Topic Packet is released just before the meeting, in March, to review modified proposals.

If PLRC has more information on revised proposals I will update this thread.


https://twitter.com/user/status/1761346917651402996



Dx Revision Watch
@dxrevisionwatch

@LisaAMcCorkell
@patientled
In the interests of transparency, are the revised proposals for adding a code for PEM being presented at this forthcoming March C & M meeting going to be publicly posted by PLRC prior to the March meeting?

 

Some uncertainty here:

https://twitter.com/user/status/1761432984899764597



Lisa McCorkell
@LisaAMcCorkell

To my knowledge, a code for PEM will not be presented at the March meeting. That must’ve been decided after the tentative agenda was drafted. I assume that will be reflected in the final agenda, but questions on that can be directed to CDC

4:48 PM · Feb 24, 2024

 

PEM was not listed in the Tentative Agenda as published on 5 February in the Federal Register: https://federalregister.gov/documents/2024/02/05/2024-02178/national-center-for-health-statistics-meeting-of-the-icd-10-coordination-and-maintenance-committee

But is included (at Item 24) in the more expansive list of Topics in the Tentative Agenda PDF, as posted on the CDC's C & M Meeting page: https://cdc.gov/nchs/icd/icd10cm_maintenance.htm

CDC's Traci Ramirez is being approached for clarification.

 

I have received a response from CDC's Traci Ramirez who has clarified that the proposal for PEM will not be included at the March C & M meeting.


No explanation as to why it has been included in the Tentative Agenda.

So, either:

1 The proposal has been rejected and there are no plans to re-present it at a future meeting.

Or:

2 No decision has been made; the proposal remains under consideration and may or may not be re-presented at a future meeting (but not at this forthcoming March meeting).

Or:

3 The proposal has been approved and will likely be implemented for the October '24 release. (October releases of ICD-10-CM are usually published early to mid June.)


That's all I can tell you. I cannot confirm whether PLRC has been informed of the status of a decision on this proposal other than that it isn't scheduled for re-presentation at the March meeting.

 

Update from Patient-Led Research Collaboration on status of proposal to add a code for PEM/PESE to the Symptoms chapter of ICD-10-CM:

https://twitter.com/user/status/1766160093035233684



Patient-Led Research Collaborative
@patientled

13m

Update: Unfortunately the ICD-10-CM code for PEM/PESE was not approved by CDC for implementation in Oct 2024. It will not be revisited at the March 2024 meeting due to lack of consensus on coding placement and additions, but it is possible it could be revisited in the future 1/

Patient-Led Research Collaborative
@patientled
Huge thank you to everyone who submitted comments in support last fall! If PLRC presents a code for PEM/PESE in future meetings, we’ll share the proposed code and coding structure as soon as it is finalized as we’ve done in meetings past. /2

5:52 PM · Mar 8, 2024