Require Insurance Coverage for FRAT testing in Children with Autism & PANS/PANDAS
The Issue
To the Honorable Members of the New York State Legislature, Department of Health, and Insurance Regulators:
My name is Sarah Simon, and I am a board-certified holistic health practitioner and mother of two children with PANS/PANDAS (Pediatric Autoimmune Neuropsychiatric Syndrome). Like thousands of families across New York, we are struggling to access life-changing testing and treatment for Cerebral Folate Deficiency (CFD) — a condition strongly linked to autism, PANS/PANDAS, and other neuroimmune and neurodevelopmental disorders.
Right now in New York State, families cannot reliably access or afford Folate Receptor Antibody Testing (FRAT), which screens for autoantibodies that block folate transport into the brain. Without this test, children are being denied a diagnosis that could open the door to safe, effective, and affordable treatment with folinic acid (Leucovorin) and other folate-based therapies.
Why This Matters
The New York impact is enormous.
•New York has an estimated 160,000+ children diagnosed with autism. Research shows up to 71% may carry folate receptor autoantibodies — meaning over 100,000 children in our state could be affected by CFD.
•In PANS/PANDAS, which is estimated to affect at least 1 in 200 children, a recent study found 63.8% tested positive for FRAAs (folate receptor autoantibodies).
•That means tens of thousands of New York children could benefit from this testing and treatment — yet most never get the chance.
Treatment works.
Research has shown meaningful improvements in communication, irritability, seizures, ataxia, and behavior in children who test FRAA-positive and are treated with folinic acid.
Families who can pay out of pocket — often $300+ for testing and hundreds more for treatment — sometimes see life-changing improvements. Families who cannot are left behind.
Backed by NIH research.
•Multiple NIH-supported studies have shown that children with autism and PANS/PANDAS frequently test positive for folate receptor autoantibodies. NIH-funded clinical trials also demonstrate that treatment with folinic acid (Leucovorin) can significantly improve speech, communication, irritability, and other core symptoms.
The cost of doing nothing is higher.
•One year of residential psychiatric care for a child with untreated PANS/PANDAS or autism can exceed $100,000.
•By contrast, FRAT testing costs about $300 and folinic acid therapy is comparatively inexpensive. Even if a fraction of children improve, the long-term savings in reduced hospitalizations, psychiatric medications, and special education needs would be enormous for both families and the state.
What We’re Asking
We call on New York State policymakers, public health officials, and insurers to:
1. Mandate insurance coverage for FRAT testing and medically justified folate-based treatments (Leucovorin, folinic acid, methylated folates, methyl-B12).
2. Protect and support providers who order FRAT testing and prescribe folate therapies, even if off-label.
3. Educate providers on CFD, FRAT testing, and treatment protocols so that children can be identified and treated early.
4. Fund pilot programs and research to track outcomes, cost-effectiveness, and safety in New York children.
Our Children Deserve Better
I know this personally. As a mother, I have watched my children struggle with rage, hallucinations, and heartbreaking behavioral shifts. When we learned about cerebral folate deficiency, we finally had a path toward hope — but accessing testing and treatment has been a battle every step of the way.
No parent should have to fight this hard, or pay thousands out of pocket, for care that could change their child’s future.
Please sign and share this petition to demand that New York State make FRAT testing and Cerebral Folate Deficiency treatment accessible and covered by insurance.
Sincerely,
Sarah Simon
Board-Certified Holistic Health Practitioner & Parent Advocate
References (for policymakers and providers)
Frye, R.E., Slattery, J.C., Quadros, E.V. (2021). Cerebral Folate Deficiency, Folate Receptor Alpha Autoantibodies, and Leucovorin Treatment in Autism Spectrum Disorders: A Systematic Review and Meta-Analysis. Frontiers in Neuroscience. PubMed ID: 34834493.
Piras, I.S., et al. (2024). Folate Receptor Autoantibodies in Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS/PANDAS). Journal of Neuroimmunology. PubMed ID: 38392599.
Ramaekers, V.T., Quadros, E.V., Sequeira, J.M. (2016). Folate Receptor Autoimmunity and Cerebral Folate Deficiency in Autism Spectrum Disorders. Frontiers in Neuroscience. PMCID: PMC4784257.
Rossignol, D.A., Frye, R.E. (2012). Folate Receptor Autoimmunity and Cerebral Folate Deficiency in Autism Spectrum Disorders. Journal of Pediatric Biochemistry.
O’Hara, N. (Clinical observations). Reported that 100% of children with autism and PANS/PANDAS in her practice tested positive for CFD using FRAT or related biomarkers.
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The Issue
To the Honorable Members of the New York State Legislature, Department of Health, and Insurance Regulators:
My name is Sarah Simon, and I am a board-certified holistic health practitioner and mother of two children with PANS/PANDAS (Pediatric Autoimmune Neuropsychiatric Syndrome). Like thousands of families across New York, we are struggling to access life-changing testing and treatment for Cerebral Folate Deficiency (CFD) — a condition strongly linked to autism, PANS/PANDAS, and other neuroimmune and neurodevelopmental disorders.
Right now in New York State, families cannot reliably access or afford Folate Receptor Antibody Testing (FRAT), which screens for autoantibodies that block folate transport into the brain. Without this test, children are being denied a diagnosis that could open the door to safe, effective, and affordable treatment with folinic acid (Leucovorin) and other folate-based therapies.
Why This Matters
The New York impact is enormous.
•New York has an estimated 160,000+ children diagnosed with autism. Research shows up to 71% may carry folate receptor autoantibodies — meaning over 100,000 children in our state could be affected by CFD.
•In PANS/PANDAS, which is estimated to affect at least 1 in 200 children, a recent study found 63.8% tested positive for FRAAs (folate receptor autoantibodies).
•That means tens of thousands of New York children could benefit from this testing and treatment — yet most never get the chance.
Treatment works.
Research has shown meaningful improvements in communication, irritability, seizures, ataxia, and behavior in children who test FRAA-positive and are treated with folinic acid.
Families who can pay out of pocket — often $300+ for testing and hundreds more for treatment — sometimes see life-changing improvements. Families who cannot are left behind.
Backed by NIH research.
•Multiple NIH-supported studies have shown that children with autism and PANS/PANDAS frequently test positive for folate receptor autoantibodies. NIH-funded clinical trials also demonstrate that treatment with folinic acid (Leucovorin) can significantly improve speech, communication, irritability, and other core symptoms.
The cost of doing nothing is higher.
•One year of residential psychiatric care for a child with untreated PANS/PANDAS or autism can exceed $100,000.
•By contrast, FRAT testing costs about $300 and folinic acid therapy is comparatively inexpensive. Even if a fraction of children improve, the long-term savings in reduced hospitalizations, psychiatric medications, and special education needs would be enormous for both families and the state.
What We’re Asking
We call on New York State policymakers, public health officials, and insurers to:
1. Mandate insurance coverage for FRAT testing and medically justified folate-based treatments (Leucovorin, folinic acid, methylated folates, methyl-B12).
2. Protect and support providers who order FRAT testing and prescribe folate therapies, even if off-label.
3. Educate providers on CFD, FRAT testing, and treatment protocols so that children can be identified and treated early.
4. Fund pilot programs and research to track outcomes, cost-effectiveness, and safety in New York children.
Our Children Deserve Better
I know this personally. As a mother, I have watched my children struggle with rage, hallucinations, and heartbreaking behavioral shifts. When we learned about cerebral folate deficiency, we finally had a path toward hope — but accessing testing and treatment has been a battle every step of the way.
No parent should have to fight this hard, or pay thousands out of pocket, for care that could change their child’s future.
Please sign and share this petition to demand that New York State make FRAT testing and Cerebral Folate Deficiency treatment accessible and covered by insurance.
Sincerely,
Sarah Simon
Board-Certified Holistic Health Practitioner & Parent Advocate
References (for policymakers and providers)
Frye, R.E., Slattery, J.C., Quadros, E.V. (2021). Cerebral Folate Deficiency, Folate Receptor Alpha Autoantibodies, and Leucovorin Treatment in Autism Spectrum Disorders: A Systematic Review and Meta-Analysis. Frontiers in Neuroscience. PubMed ID: 34834493.
Piras, I.S., et al. (2024). Folate Receptor Autoantibodies in Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS/PANDAS). Journal of Neuroimmunology. PubMed ID: 38392599.
Ramaekers, V.T., Quadros, E.V., Sequeira, J.M. (2016). Folate Receptor Autoimmunity and Cerebral Folate Deficiency in Autism Spectrum Disorders. Frontiers in Neuroscience. PMCID: PMC4784257.
Rossignol, D.A., Frye, R.E. (2012). Folate Receptor Autoimmunity and Cerebral Folate Deficiency in Autism Spectrum Disorders. Journal of Pediatric Biochemistry.
O’Hara, N. (Clinical observations). Reported that 100% of children with autism and PANS/PANDAS in her practice tested positive for CFD using FRAT or related biomarkers.
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Petition created on October 2, 2025