Exciting news! Dysautonomia International successfully advocated for a unique ICD-10 code for POTS in the US for the first time! US clinicians can begin using the new POTS code, G90.A, as of October 1, 2022 – just in time for our 10th Annual Dysautonomia Awareness Month campaign.
The International Classification of Diseases (ICD) is an agreed upon terminology for medical conditions created by the World Health Organization, a branch of the United Nations. Each country can choose to adopt the ICD, and make some edits to the terminology to be used in their country. ICD-10 is the current version and the 10th revision of the ICD since its inception in 1909.
POTS historically did not have its own unique ICD-10 code. It was listed as a synonym under I49.8 “Other specified cardiac arrhythmias” along with numerous other medical conditions like Brugada syndrome, re-entrant atrioventricular tachycardia, ectopic rhythm disorder and other arrhythmias. POTS, however, is not considered to be an arrhythmia. The tachycardia (fast heart beat) seen in POTS is a normal sinus rhythm. POTS being lumped together with so many other medical conditions made epidemiology, health care utilization, and other electronic medical records research impossible.
This is why Dysautonomia International set out to get POTS its own diagnostic code in the ICD a few years ago. Dysautonomia International Medical Advisory Board member Dr. Jeffrey Boris led the charge, along with Dysautonomia International President Lauren Stiles.
First, they obtained POTS a new ICD-11 code from the World Health Organization, which you can read here. ICD-11 is not implemented yet, but it has been adopted by all World Health Organization member countries and implementation should occur over the next few years. In the US, ICD-11 implementation may begin in the 2025-2027 time frame, if we’re lucky.
While we wait for ICD-11 to be implemented, we pursued an ICD-10 code change in the US, the country with the most number of POTS research centers and POTS aware clinicians. Dr. Boris and Lauren presented before a US Center for Disease Control committee last year, and the committee just issued their decision to approve a unique ICD-10 code for POTS at G90.A. This places POTS in the ICD-10 section with other autonomic nervous system disorders, where it should have been all along. This new ICD-10 code goes into effect in the US as of October 1, 2022.
The implementation of a unique ICD-10 code for POTS in the US will facilitate better research studying the epidemiology of POTS, the evolution of the illness over time, use of health care resources, disability determinations and much more. But… that only works if US clinicians start using the code, so please let your doctors and other medical professionals know about this code change! Let the billing office staff know too, since they do most of the coding. You can give them this Provider Letter.
We are having conversations with POTS experts in other countries to determine if it is feasible to pursue ICD-10 changes in other countries at this time, as each country has its own lengthy legal process to change the coding system. We are also reviewing the ICD-10 and proposed ICD-11 with our Medical Advisory Board to determine if there are other autonomic disorders that are missing unique ICD codes. If any are missing that would meet the criteria for a unique code, we will pursue unique ICD codes for those diagnoses as well. Thankfully, most autonomic disorders already have unique ICD codes.
Having a unique ICD-10 code for POTS in the US is a huge victory for the dysautonomia patient community! This will help us get recognized as a large patient population that is currently being greatly underserved by the healthcare system.
We have many other advocacy projects in progress. You can help Dysautonomia International do even more advocacy that benefits our patient community by making a contribution to support this important work at CureDys.org. Even if you can’t contribute financially, you can still be part of our advocacy efforts by signing up for our email list.
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