The Massachusetts Senate passed legislation Thursday that would mandate insurance coverage for children with pediatric acute-onset neuropsychiatric syndromes (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). The bill, An Act relative to insurance coverage for PANDAS/PANS, was filed by Senator Jason Lewis. It would ensure that children with PANS or PANDAS receive optimal care by helping patients and their families access specialized diagnostic tests and effective treatments.
“With the passage of this legislation, children and families struggling with the debilitating impacts of this terrible illness will no longer also have to struggle to access the treatment that they desperately need,” said Senator Jason Lewis, the lead sponsor of the bill. “I want to thank my constituent Sheilah Gauch and her brave children Abby and Ian who, along with other amazing advocates, made this legislative victory possible.”
“This legislation means that the most acute and critically ill PANDAS/PANS patients will not have to live a tortured life of illness and symptom management. The Senate has put the medical treatment for this horrible disease back where it belongs: between the patient and their medical provider, said Sheilah Gauch and Jennifer Vitelli, co-leaders with the Massachusetts Coalition of PANDAS/PANS Legislation. “It has been inspiring and incredibly emotional for our families to have their children’s voices heard by both the Senate and the House during this session. To listen to children, especially during this pandemic, shows the true character of those who serve the Commonwealth. We look forward to getting this bill to the Governor’s desk before the end of the year.”
PANS/PANDAS is a life-changing condition often triggered by an infection such as “strep throat,” that can occur suddenly in previously happy, healthy children between the ages of two and twelve. The condition results in a marked detrimental personality change – typically including obsessions and compulsions, extreme anxiety, angry rages, trouble sleeping, difficulty with schoolwork, bodily tics and urinary frequency or incontinence.
PANS/PANDAS are challenging conditions – obtaining a correct diagnosis can be difficult because the symptoms mimic other illnesses and treatment for PANS/PANDAS is not always covered by insurance. This legislation would change that by ensuring that treatment for PANS/PANDAS is covered by insurance in the Commonwealth. Medical professionals would be authorized to prescribe and execute courses of treatment for PANS/PANDAS patients, including intravenous immunoglobulin therapy (IVIG) in the most acute cases, in order to help patients receive the best possible care.
The bill now moves to the House of Representatives for consideration.