NYPANS
Fighting for the right of every child with PANS/PANDAS in New York state to obtain insurance coverage for this terrible disease. We are taking our message to Albany to change the law, so our families can get the help they need.
What are PANS and PANDAS?
PANS (Pediatric Acute onset Neuropsychiatric Syndrome) is an autoimmune inflammatory disease of the brain triggered by infections. The illness was first identified in children with strep and called Post-infectious Autoimmune Neuropsychiatric Disease Associated with Strep, or PANDAS. Other infections like Epstein Barr, Lyme and mycoplasma pneumonia can also cause PANS. .
Children with PANS/PANDAS might suddenly exhibit psychiatric symptoms, like OCD, anxiety, ADHD, extreme mood swings, or even severe depression and suicidality, often acting out in ways that seem drastically out of character. Symptoms may not respond to typical psychiatric medications and therapies, but when infections are treated the immune system is properly managed some even recover completely.
Who We Are
We are parents who have witnessed firsthand the devastating impact of PANS/PANDAS on our children. We have faced the uncertainty, frustration, and heartbreak that come with watching them transform from bright, joyful individuals into children struggling with extreme anxiety, rage, OCD and other severe symptoms. Many of us have spent years seeking answers, only to be met with misdiagnoses, endless medications, and mounting medical bills. We formed NYPANS to unite our voices. We are determined to fight for change and ensure that every family dealing with this illness has access to the care and support they need.
Together, we are pushing New York State legislators to hold insurance companies accountable for providing coverage for PANS/PANDAS treatments. Our children deserve to receive the treatments that can help them regain their lives, but the financial burden should not fall solely on families. We are advocating for a future where no family has to choose between their child’s health and their financial security, and we won’t stop until every child with PANS/PANDAS in New York gets the care they deserve.
What We Do
We support families in their journey towards appropriate diagnoses and healing.
We are asking New York State to mandate that insurance companies cover the costs of treatment.
We have submitted a bill that we hope will be voted on and passed in 2027.
Why Insurance?
New York is behind. Sixteen other states have already taken steps to ensure better access to coverage for treatment of PANS and PANDAS.
The time has come
Studies at institutions including Columbia, Stanford, Yale, Harvard, and Johns Hopkins are broadening understanding of the disease and bringing new ideas for treatment. But that hasn’t led most insurance companies to change their policies. Only one, Aetna, has opted to cover our children nationwide, without being forced to by a state law.
States that have passed mandates include Arkansas, California, Colorado, Connecticut Delaware, Georgia, Illinois, Indiana, Kansas (state employees only), Louisiana, Maryland, Massachusetts, Minnesota, New Hampshire, Oregon, Rhode Island and Virginia.
We Need Your Help
Join us in the fight to make insurance companies cover PANS!
Any New York State resident can write a letter asking that state legislators pass a law requiring the companies to pay for needed treatments for PANS.