The International OCD Foundation is the nation’s largest organization solely dedicated to advocating for everyone affected by obsessive-compulsive disorder and related disorders, including PANS and PANDAS.
What this letter argues
- Unlike typical OCD, where symptoms build over months or years, PANS and PANDAS symptoms appear rapidly after an infection.
- Left untreated, PANS and PANDAS can be permanently disabling or even deadly.
- Treatments that work for typical childhood OCD may not work here. IVIG is recommended in moderate and severe cases under 2017 treatment guidelines.
- In one study children receiving IVIG saw a 45 percent reduction in symptoms, with most still improved a year later. Plasma exchange showed a 58 percent reduction.
- Out of pocket costs are severe: IVIG can reach $15,000, and plasma exchange costs more.
The letter in full
Submitted by Rebecca Deusser, Executive Director, April 13, 2026. Published exactly as submitted.
I write to you as the Executive Director of the International OCD Foundation (IOCDF), the nation’s largest organization solely dedicated to advocating for everyone affected by obsessive-compulsive disorder (OCD) and related disorders, including pediatric autoimmune neuropsychiatric disorders (PANDAS/PANS). The IOCDF wishes to convey our endorsement of both NYS Assembly Bill A9659 and NYS Senate Bill S2655A, which would require health insurance policies to cover costs for pediatric acute-onset neuropsychiatric syndrome rehabilitation treatment.
While we have known for many years that children can develop OCD, PANDAS/PANS have only recently been distinguished as illnesses that are unique from more typical cases of childhood-onset OCD. Researchers believe PANDAS/PANS is caused by a malfunctioning immune system that mistakenly attacks the brain instead of an infection. Unlike in typical OCD, where symptoms set in gradually over months or even years, symptoms in PANDAS/PANS appear rapidly following an infection (e.g., strep throat).
The symptoms of PANDAS/PANS resemble severe OCD and tic disorders. Affected children may become extremely anxious, act out in disruptive ways, or be unable to eat. The speed with which children develop these symptoms, seemingly overnight, is truly frightening to parents, and the intense needs of a child with PANDAS/PANS can leave families reeling. When left untreated, PANDAS/PANS can be permanently disabling or even deadly.
Treatments that work for children with OCD may not necessarily work for children with PANDAS/PANS. Thankfully, there are several therapies that scientific research has shown to be effective: cognitive behavioral therapy, antibiotics, plasmapheresis (TPE), and intravenous immunoglobulin therapy (IVIG) are among the best treatments currently available for PANDAS/PANS.
In mild and moderate cases of PANDAS/PANS, cognitive behavioral therapy and antibiotics are the recommended treatments. IVIG is recommended in moderate and severe cases, per treatment guidelines published in 2017. The use of IVIG to treat PANDAS/PANS is supported by the results of multiple double-blind, placebo-controlled studies and numerous case reports. In one study, the children who received IVIG treatment experienced a 45% reduction in symptoms, and the vast majority continued to be improved when researchers followed up with them one year after treatment. TPE is also supported by research and was shown to reduce symptoms by 58%. However, it is a riskier and more costly treatment and is recommended only in extreme or life-threatening cases.
Out of pocket costs for IVIG or TPE are significant: IVIG can cost up to $15,000 and TPE is even more expensive. The average family will struggle to afford the right treatment for a child with moderate to severe PANDAS/PANS if their insurer does not provide coverage. By mandating coverage for the full spectrum of available evidence-based treatments, NYS Assembly Bill A9659 and NYS Senate Bill S2655A will ensure that every child in New York with PANDAS/PANS has a chance at recovery.
On behalf of our members and all New York families who are caring for a child with PANDAS/PANS, we respectfully ask the New York State Assembly Insurance Committee to pass these bills. Should any Assembly members have questions about PANDAS/PANS or its treatments, please do not hesitate to contact us.
The bills this letter supports
This letter supports A9659 and S2655A, the previous Senate companion bill, which was replaced by S10208 in May 2026. The current bills are A9659A, sponsored by Assemblymember Michael Cashman and now in the Assembly Insurance Committee, and S10208, sponsored by Senator Pete Harckham and now in the Senate Insurance Committee.
Send a letter to your own legislators or read more about the bills.