Three laws have been passed to help PANS/PANDAS families with insurance coverage. Named after two of the children of the advocates that drove the legislation, Charlie’s Law of 2017, was the first law of its kind in the US. The law requires all group or individual policies of accident and health insurance or managed care plans that are amended, delivered, issued, or renewed after July 18, 2017, to provide coverage for the treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome (“PANDAS/PANS”), including but not limited to, the use of intravenous immunoglobulin therapy (“IVIG”).
Effective on August 23, 2019, a second law was passed providing that for billing and diagnosis purposes, pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome shall be coded as autoimmune encephalitis until a code is assigned and provides that coverage for treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome may not be denied due to a diagnosis of autoimmune encephalopathy or autoimmune encephalitis.
The legislative efforts in IL led to policy changes in the other Health Care Service Corporation states (affiliated with BCBS) which include Illinois, Montana, New Mexico, Oklahoma, and Texas. In these states, the IVIG policy RX504.003, Immunoglobulin (Ig) Therapy (Including Intravenous [IVIG] and Subcutaneous Ig [SCIG] states that Intravenous Immunoglobulin “may be considered medically necessary” when these criteria are met:
- Diagnosed with moderate to severe PANDAS/PANS (must rule out more specific disorders before starting IVIG therapy [autoimmune encephalitis, central nervous system vasculitis, neuropsychiatric systemic lupus erythematosus, acute disseminated encephalomyelitis, infectious encephalitis, etc.] AND
- Laboratory confirmation that the patient is not IgA deficient, AND
- Documentation that the patient is free of strep infections and other treatable infections, AND
- One course of therapy at dose limit of 2 grams/kg of child’s weight (1 gm/kg per day for 2 days).
- IL SB0101 https://www.ilga.gov/legislation/billstatus.asp?DocNum=0101&GAID=17&GA=103&DocTypeID=SB&LegID=143427&SessionID=112
- IL HB2721 https://legiscan.com/IL/bill/HB2721/2017
- IL HB2846 https://legiscan.com/IL/bill/HB2846/2019
- Blue Cross Blue Shield Medical Policies-RX504.003 Immunoglobulin Therapy (Including Intravenous Ig [IVIG] and Subcutaneous Ig [SCIG]) http://www.medicalpolicy.hcsc.net/medicalpolicy/activePolicyPage?lid=jdsqzq4i&corp EntCd=IL1