ONCE UPON A GENE - EPISODE 224

The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed

Advocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, the battles, and the common-sense changes we're fighting for in the rare disease community that are pivotal to research, recognition and treatment of so many rare diseases. 

EPISODE HIGHLIGHTS

What are ICD-10 codes?

In 1999, the ICD-10 code was developed by the World Health Organization and it was used to track mortality coding from death certificates. It was the way people were tracked when they died, but it also became the way people were diagnosed and treated for conditions. Today, they drive so much in clinical medicine. When you go to the doctor, they will input a code of the flu, strep throat, or whatever ailment you're affected by. In a practical sense, it is how the doctor bills insurance. 

How do misused ICD-10 codes affect our kids?

They are the bones of our healthcare system and it impacts rare disease because when we go to the doctor and describe our children's symptoms, we need a code to represent diseases so we can be recognized as a legitimate disease and population and so that patients can be tracked in our healthcare system. 

What does an organization need to know and what is the process for applying for an ICD-10 code?

There are two chances per year to obtain an ICD-10 code. You submit a formal application and if you're selected, you can present before a committee and then it'll be a year to be issued a code. The application is pretty straightforward, with a scientific component and a clinical component. With a medical board of advisors, it's not hard to complete the application and gather materials. 

How can we as a rare disease community fight to help make changes around ICD-10 code use and issuing. 

As a community, we need to get the Rare Disease Legislative Caucus involved, get the White House involved, talk to our senators and congressmen. We need to all apply for ICD-10 codes and get loud, tweet about it, talk about it, get noticed. 

LINKS AND RESOURCES MENTIONED

ICD-10 Code PAG Action Plan

Combined Brain

https://combinedbrain.org/

EveryLife

https://everylife.com/

NORD

https://rarediseases.org/

Global Genes

https://globalgenes.org/

SLC6A1 Connect

https://slc6a1connect.org/

Email Amber

[email protected] 

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