Understanding the illness
What are PANS and PANDAS?
PANS is an autoimmune inflammatory disease of the brain, triggered by infections.
Pediatric Acute-onset Neuropsychiatric Syndrome
The broader diagnosis. Strep can trigger it, and so can other infections.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections
The form first identified, in children who had strep infections.
How it happens
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Step 1
An infection
A child catches something common, like strep, Epstein-Barr, Lyme or mycoplasma.
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Step 2
The immune system misfires
Instead of only fighting the infection, the body’s response causes inflammation in the brain.
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Step 3
A sudden change
Psychiatric symptoms appear, often seemingly overnight, in a child who was fine before.
What families see
Children with PANS/PANDAS might suddenly exhibit psychiatric symptoms, often acting out in ways that seem drastically out of character.
- OCD
- Anxiety
- ADHD
- Extreme mood swings
- Severe depression
- Suicidality
Why the right treatment matters
Symptoms may not respond to typical psychiatric medications and therapies. But when infections are treated and the immune system is properly managed, some children even recover completely.
Share your story
Legislators can read the research. They need to meet the families.
A bill is easy to set aside. A parent explaining what PANS or PANDAS has taken from their child is not. Record a short video or write a few paragraphs about your family’s experience, and with your permission we’ll bring it directly to the New York lawmakers deciding on S10208 and A9659-A.
- Up to 90 seconds. Your phone is all you need. No script, no editing.
- Your face is optional. Your voice over a photo tells the story just as powerfully.
- You decide who sees it. Choose public or private. Nothing is shared until our team has reviewed it.
Prefer to write? The form takes that too.
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.
Two bills. Your own legislators. A few minutes.
Send a personal letter to your State Senator and Assemblymember asking them to support S10208 and A9659-A.
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.
Parents and caregivers
Tell your story
Tell your own legislators what PANS or PANDAS has meant for your child and your family.
Write your letterFriends and family
Stand with a family you know
You do not have to be a parent to write. Tell your legislators what you have seen a family go through.
Write as a friend or family member