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Understanding the illness
For some children, OCD, crippling anxiety, refusal to eat, tics, psychosis, or suicidal thoughts can strike seemingly overnight. When these symptoms occur abruptly after an infection, they can be hallmark signs of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Urgent medical evaluation and treatment is needed, and children are being denied this care in New York because of insurance barriers to treatment.
Pediatric Acute-onset Neuropsychiatric Syndrome
PANS is considered the broader umbrella term that includes both strep and other infections. PANS may be triggered by a range of infections or other immune-mediated phenomena.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections
First identified in the 1990's in children who had strep infections. PANDAS is considered a subset of PANS in which symptoms are associated with a Group A Streptococcal infection.
How it happens
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Step 1
The Trigger
While most children who catch an infection never develop PANS/PANDAS, some children with certain predisposing factors develop psychiatric symptoms after a common infection, such as strep throat, the flu, or walking pneumonia, which is caused by the bacterium Mycoplasma pneumoniae.
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Step 2
Immune System Misfires
Instead of simply fighting off the infection, the immune system also mistakenly targets the brain, causing inflammation in the basal ganglia. Because this area helps regulate movement, behavior, and emotion, these children can experience sudden obsessive-compulsive behaviors, severe anxiety, food restriction, tics, and behavioral regresion.
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Step 3
Psychiatric Emergency
A child with no history of behavioral health problems suddenly cannot function. These children often don’t respond to standard treatments like therapy or SSRIs. Without awareness of PANS, providers and families are left searching for answers, and getting the right care is harder still.
families enter a state of crisis as they helplessly witness their children experience:
- OCD
- Anxiety
- Restrictive Eating
- Extreme mood swings
- Severe depression
- Suicidality
- Rage
- Aggression
- ADHD
- Increased urinary frequency
- School refusal
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 under specialist care, children can recover.
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Who We Are
What We Do
We’re fighting to make sure every family can get life-changing treatment for PANS/PANDAS—not just those who can afford it.
We’re asking New York State to require insurance companies to cover PANS/PANDAS treatment so children can get care early, instead of carrying chronic illness and lasting disability into adulthood.
These bills have been stuck in committee for nearly a decade. We’re meeting weekly with state leaders to change that, and to get them passed in 2027.
The Case for Coverage
Why Insurance?
Seventeen states have already acted to ensure children with PANS and PANDAS can get the treatment they need. New York has not, and our children are falling behind because of it.
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. Aetna has opted to cover our children nationwide, without being forced to by a state law — evidence for the fiscal benefits to insurance companies and families alike in covering this care. Only a fraction of children with PANS/PANDAS will require more expensive treatment.
States that have passed mandates
- Arkansas
- California
- Colorado
- Connecticut
- Delaware
- Georgia
- Illinois
- Indiana
- Kansas (state employees only)
- Louisiana
- Maryland
- Massachusetts
- Minnesota
- New Hampshire
- Oregon
- Rhode Island
- Virginia
Our Supporters
Organizations Supporting Our Bills
