Getting insurance coverage for people with PANS/ PANDAS in New York
NYPANS is fighting for the right of every child or adult 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 inflammatory disease of the brain triggered by infections. The illness is often brought on by strep (when caused by strep, the name PANDAS or Post-infectious Autoimmune Neuropsychiatric Disease Associated with Strep is often used) or other infections like Lyme, Epstein Barr, Babesia, and mycoplasma pneumonia.
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. They are often misdiagnosed as psychiatric patients and their symptoms do not respond to regular medications and therapies. Many kids experience significant improvement when the immune system is properly managed and some even recover completely.
Read Sage's Journey
The summer before she turned two, Sage went from being a normal, happy toddler to frequently raging and screaming. Simple tasks like getting dressed in the morning, or even requesting and receiving a glass of water, often triggered wild tantrums that would completely derail normal family routines. Though friends and family suggested it was the terrible twos, the behavior never went away. As Sage grew, the emotions and behaviors grew along with her. We couldn’t play board games, because if she lost she would try to rip them up or throw them across the room. Going to museums or community events could lead to disaster. Even driving short distances could be dangerous, because her sudden rages could lead her to throw things or unbuckle her seatbelt and leap at her brother. At times she was physically violent, she was prone to attempting to flee in large public places and she also spoke of wanting to die. But there were also baffling periods of normalcy. Sometimes they would last only for an afternoon or a day or two, but sometimes they lasted for months.
Over the years, she was diagnosed variously with anxiety, oppositional defiant disorder, ADHD, and OCD. She was prescribed Prozac, Zoloft, Vyvanse, lorazepam, and even the antipsychotic Abilify. All either did nothing or made the situation worse. At age 7 she was found to have numerous tick borne illnesses, and treating those brought real relief for nearly a year. Then things fell apart again. That’s when Sage was diagnosed with PANS. New antibiotics helped, but it wasn’t until we were able to get IVIG that things changed long term.
We were unable to get insurance coverage because the company did not dignify the PANS diagnosis, but I was lucky enough to be able to afford a number of doses. Later, Sage was found to have another autoimmune disease that requires IVIG and insurance does cover. That has been life changing. Not only is the other illness being treated, but Sage’s emotional dysregulation is almost all gone. She is a happy, healthy middle schooler getting straight As, playing sports and enjoying a busy social schedule.
Read Sage's Journey
The summer before she turned two, Sage went from being a normal, happy toddler to frequently raging and screaming. Simple tasks like getting dressed in the morning, or even requesting and receiving a glass of water, often triggered wild tantrums that would completely derail normal family routines. Though friends and family suggested it was the terrible twos, the behavior never went away. As Sage grew, the emotions and behaviors grew along with her. We couldn’t play board games, because if she lost she would try to rip them up or throw them across the room. Going to museums or community events could lead to disaster. Even driving short distances could be dangerous, because her sudden rages could lead her to throw things or unbuckle her seatbelt and leap at her brother. At times she was physically violent, she was prone to attempting to flee in large public places and she also spoke of wanting to die. But there were also baffling periods of normalcy. Sometimes they would last only for an afternoon or a day or two, but sometimes they lasted for months.
Over the years, she was diagnosed variously with anxiety, oppositional defiant disorder, ADHD, and OCD. She was prescribed Prozac, Zoloft, Vyvanse, lorazepam, and even the antipsychotic Abilify. All either did nothing or made the situation worse. At age 7 she was found to have numerous tick borne illnesses, and treating those brought real relief for nearly a year. Then things fell apart again. That’s when Sage was diagnosed with PANS. New antibiotics helped, but it wasn’t until we were able to get IVIG that things changed long term.
We were unable to get insurance coverage because the company did not dignify the PANS diagnosis, but I was lucky enough to be able to afford a number of doses. Later, Sage was found to have another autoimmune disease that requires IVIG and insurance does cover. That has been life changing. Not only is the other illness being treated, but Sage’s emotional dysregulation is almost all gone. She is a happy, healthy middle schooler getting straight As, playing sports and enjoying a busy social schedule.
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 our kids 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.
Read Matthew's Journey
The Beginning:
Matthew was initially diagnosed with anxiety, ADHD, and a possible autism spectrum disorder. At age 6, he was placed on antipsychotics, which masked his symptoms. By age 8, nearly every morning of third grade, Matthew would vomit to avoid stressors at school. If he managed to attend, his day was filled with crippling anxiety and physical symptoms of distress, often misattributed to other diagnoses. At his worst, he expressed that he no longer wanted to live. Matthew missed more than three months of third grade. During this time, his family tried to identify why he struggled and to find a new psychiatrist after his prior specialist closed her practice. This journey led to a PANDAS-knowledgeable practice that implemented a multi-pronged approach. Strep and other infections were identified, and PANDAS/PANS was added to his diagnoses. A pragmatic speech delay and sensory processing disorder were also identified. During his worst flare, IVIG was suggested as a treatment. However, the costs were not covered by insurance and would have to be paid out of pocket. With no guarantees of success and the treatment being financially out of reach, his provider worked with the family to find alternative approaches.
Now
With the right support and treatment, Matthew is now engaging with people, attending school, playing guitar, and honing his tennis skills. This progress started with an accurate diagnosis and appropriate treatment. Although IVIG was not pursued, his family was fortunate enough to afford various therapies, including occupational therapy, speech-language therapy for his pragmatic speech delay, mental health care, chiropractic care, and neurofeedback. Four years later, Matthew is thriving in middle school, with minimal absences due to health issues.
Read Matthew's Journey
The Beginning:
Matthew was initially diagnosed with anxiety, ADHD, and a possible autism spectrum disorder. At age 6, he was placed on antipsychotics, which masked his symptoms. By age 8, nearly every morning of third grade, Matthew would vomit to avoid stressors at school. If he managed to attend, his day was filled with crippling anxiety and physical symptoms of distress, often misattributed to other diagnoses. At his worst, he expressed that he no longer wanted to live. Matthew missed more than three months of third grade. During this time, his family tried to identify why he struggled and to find a new psychiatrist after his prior specialist closed her practice. This journey led to a PANDAS-knowledgeable practice that implemented a multi-pronged approach. Strep and other infections were identified, and PANDAS/PANS was added to his diagnoses. A pragmatic speech delay and sensory processing disorder were also identified. During his worst flare, IVIG was suggested as a treatment. However, the costs were not covered by insurance and would have to be paid out of pocket. With no guarantees of success and the treatment being financially out of reach, his provider worked with the family to find alternative approaches.
Now
With the right support and treatment, Matthew is now engaging with people, attending school, playing guitar, and honing his tennis skills. This progress started with an accurate diagnosis and appropriate treatment. Although IVIG was not pursued, his family was fortunate enough to afford various therapies, including occupational therapy, speech-language therapy for his pragmatic speech delay, mental health care, chiropractic care, and neurofeedback. Four years later, Matthew is thriving in middle school, with minimal absences due to health issues.
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 2025.
Why Insurance?
New York is behind. A dozen 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 the insurance companies to change their policies.
States that have passed mandates include Arkansas, Delaware, Illinois, Indiana, Kansas, Maryland, Massachusetts, Minnesota, New Hampshire, Oregon, California, and Rhode Island.
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.