ICD-10 Codes2021-02-12T13:04:07-05:00

Specific ICD-10 codes for Dravet syndrome went into effect on October 1, 2020 (FY2021). ICD-10 codes are used by medical providers to track health statistics about diseaseand 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. For instance, many patients with Dravet syndrome were previously coded as “G40.8 Other epilepsy and recurrent seizures.” This is a very broad description that does not encompass all of the symptoms and healthcare needs of a patient with Dravet syndrome.

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 co-morbidities of the disease. And, 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.

The new codes are:                   

  • G40.83    Dravet syndrome

    Polymorphic epilepsy in infancy (PMEI)
    Severe myoclonic epilepsy in infancy (SMEI)

  • G40.833 Dravet syndrome, intractable, with status epilepticus
  • G40.834 Dravet syndrome, intractable, without status epilepticus

Make sure your child’s healthcare providers and therapists are aware of these new codes. To help spread the word, DSF has business cards and a downloadable handout with ICD-10 code information. Both are available at no charge for families to share with all of their health care providers.

Order ICD-10 Cards
Download ICD-10 Flyer

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