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Glut1 Deficiency Assigned Its Own ICD-10 Code:  E74.810

Glucose Transporter Protein Type 1 Deficiency Syndrome, or Glut1 Deficiency, a rare neurometabolic disease caused by impaired glucose transport, has been assigned its own unique and specific ICD-10 diagnosis code in the upcoming addendum to the ICD system, which will take effect on October 1, 2020.  

Glut1 Deficiency (also known as Glut1DS, G1D, or De Vivo Disease) will have the newly created E74.810 code, falling under the E category of diseases representing endocrine, nutritional, and metabolic disorders. 

This represents a major milestone for the Glut1 Deficiency community and will be instrumental in future progress for better understanding and better treatments. Previously, Glut1 Deficiency was coded under a number of different, generic ICD-10 codes. All codes used in the past were catch-all codes, meaning many other diseases or symptoms without a unique code were also lumped into these categories. The codes may have been adequate for insurance billing and reimbursement, but they did not provide any way to accurately track or learn from Glut1 Deficiency patients and their experiences across healthcare systems. 

This new and distinct code for Glut1 Deficiency will help provide invaluable insights into the actual number of patients, the range and severity of symptoms they are experiencing, the types of treatments, testing, and services they are receiving and when, and what kind of impact these interventions are having. This code may also help simplify and streamline the insurance process for patients and make it easier to receive the most appropriate and most beneficial medical care, tests, treatments, therapies, and services.

The International Classification of Disease (ICD) is coordinated by the World Health Organization (WHO), the Centers for Medicare and Medicaid Services (CMS), and the Centers for Disease Control and Prevention (CDC). The purpose of ICD is to provide a system for clinicians, health insurance companies, and public health agencies across the world to classify and code patient diagnoses, symptoms, and procedures associated with healthcare. The ICD was first introduced by the WHO in 1948 and is periodically revised. The 10th revision took effect in 1994, and ICD-11 has been approved and will be implemented by member countries beginning January 1, 2022. Codes approved for ICD-10 will be inherited into ICD-11.

In the United States, proposals are submitted to the ICD-10 Coordination and Maintenance Committee and may be selected for presentation at live hearings in March and September each year at CMS headquarters in Baltimore, Maryland. The Glut1 Deficiency Foundation, with the help of Medical Advisory Board members Dr. Darryl De Vivo and Dr. Juan Pascual, submitted a proposal for the creation of a new code in July of 2018. It was chosen for presentation at the March 2019 hearing, and a public comment period was open through May 2019 with letters of support provided by the Glut1 Deficiency Foundation and several community stakeholders. The new code was approved by the ICD-10-CM Committee and announced by the CMS in July 2020. 

The Glut1 Deficiency Foundation is very grateful for this decision and the potential for enhanced patient care and research progress it represents. We encourage all families to share the news and the new code with all their healthcare providers for use starting October 1st - doctors, dietitians, therapists, counselors, pharmacists, dentists, hospitals, Social Security Administration staff, Medicaid waiver coordinators, and school personnel (especially members of any special education or IEP/504 team). ​

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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • Share Your Story
      • Materiales en Español
    • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • Conferences
    • 2021 Conference - San Diego
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate