New ICD-10 Codes for Dravet Syndrome

New ICD-10 codes for Dravet syndrome are now available to assure proper medical coding and help improve diagnosis, care, surveillance, research, and access for patients.

ICD-10 codes are used by medical providers to track health statistics about disease and to assist in billing. It is important for a rare disease like Dravet syndrome to have its own unique ICD-10 code. Before the current codes were approved, physicians had to use an existing code which did not fully reflect the full spectrum of the disease.

Having the appropriate coding in a patient’s medical record may also make it easier to secure coverage for indicated medications and medical testing required for recognized comorbidities of the disease. Without a specific ICD-10 code, it is difficult to track how many people have the disease and where they are located. If patients are not being properly coded, we might not be accurately tracking all of the characteristics of the disease, as well as assuring that patients are receiving appropriate care.

This March, we have begun mailing cards to members of DSF’s Family Network with these new codes to share with your child’s healthcare providers and therapists who might not yet be aware of their recent approval. You can also request additional cards or download a printable flyer on our website at this link.