KNOW YOUR CODE: Why the new ICD-10 codes matter, and what you can do to confirm your records

Did you know that new ICD-10 codes were assigned for limb-girdle muscular dystrophies (LGMDs) in October 2022? Patients with LGMD2A/R1, autosomal recessive LGMD due to Calpain 3-dysfunction, have been given a diagnosis code of G71.032. Patients with LGMD1i/D4, autosomal dominant LGMD due to Calpain 3-dysfunction, are grouped with other autosomal dominant LGMDs with a diagnosis code of G71.031. It is important that USA-based individuals with LGMD discuss the new codes with their doctors to confirm that their records have been accurately updated.

What is an ICD-10 code?

ICD-10 is a system used by USA-based healthcare providers to classify and code health conditions, symptoms, procedures, and diseases.

Why are ICD-10 codes important?

The codes are used for billing purposes, to track illness and health statistics, and to inform research such as understanding incidence and prevalence of a disease. Proper codes are especially important for rare diseases such as LGMDs, where they add to our understanding of how many individuals live with these disorders, the progression of their disease, and where they seek medical care.

What does an ICD-10 code mean to me?

In every encounter you have with the healthcare system, your symptoms and diagnoses are documented with ICD-10 codes. These can affect how public and private insurers will reimburse for the visit. They could help your healthcare provider determine which specialists and services are appropriate for you. ICD-10 codes could also be utilized to locate patients for approaching therapeutic studies.

What is my new ICD-10 code?

Until recently, all individuals with LGMDs were likely coded under G71.00 (Muscular dystrophy, unspecified) or G71.09 (Other specified muscular dystrophies). But new ICD-10 codes for specific LGMD subtypes are now available, thanks to the efforts of a coalition of advocacy partners and community stakeholders.

What should I do now?

Coalition to Cure Calpain 3 is asking the Calpainopathy community (those living with LGMD2A/R1 and LGMD1i/D4) to speak with their doctors to confirm that their medical records have been properly coded. This may mean updating their records with the 2022 codes. This can be done at your next scheduled visit. We appreciate your help!