Login
Lawmakers across the country are pushing to expand insurance coverage for children diagnosed with PANS and PANDAS as families face denials for costly treatment and growing uncertainty over access to specialized care.
Nebraska, Michigan and Virginia are among the growing number of states that either already mandate insurance companies cover PANS/PANDAS or have proposed legislation to require it.
The increased attention comes as parents struggle to obtain insurance coverage for intravenous immunoglobulin (IVIG), a treatment some physicians prescribe for children with severe PANS and PANDAS symptoms.
Advocates say the lack of consistent insurance protections across the country forces families to navigate high costs, travel long distances for specialized care and sometimes delay treatment while their children’s symptoms worsen.
“No child’s chance at recovery should depend on their zip code,” Sarah Signe Lemley, executive director and co-founder of the Northwest PANDAS/PANS Network, told The Defender. “Yet families facing PANS/PANDAS are fighting to have their child’s illness recognized, to find a clinician who can treat it, and to get insurance to pay for that care — all while watching their child suffer.”
Insurance companies ‘push back on the diagnosis’
Pediatric acute-onset neuropsychiatric syndrome (PANS) is characterized by the sudden onset of obsessive-compulsive symptoms or severe eating restrictions, accompanied by neurological, behavioral or psychiatric symptoms.
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is a subgroup of cases that begin with the throat condition. Children with the illness can experience severe anxiety, tics, emotional outbursts, sleep disturbances and have difficulty attending school.
Medical professionals say a diagnosis related to PANS and PANDAS is difficult to identify and often has overlapping symptoms with other conditions.
“In very short, because PANS/PANDAS lacks a clear laboratory test or imaging study for objective diagnosis, and instead relies on a clinical assessment, insurance companies can push back on the diagnosis,” Dr. Rachel Roth, who operates an online PANS clinic, told The Defender.
That ambiguity around insurance approvals becomes even more complicated when physicians prescribe expensive treatments intended to address suspected immune dysfunctions behind PANS and PANDAS.
IVIG, which involves infusing antibodies from donated human plasma, is used for immune disorders. However, its effectiveness for PANS and PANDAS remains disputed, and insurers may classify the treatment as experimental, even though physicians prescribe it.
For families, the result can be a prolonged battle costing thousands of dollars.
States push for health coverage
Twenty states have enacted some form of PANS/PANDAS insurance coverage mandate, according to the Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE), an advocacy organization.
The laws, however, vary in their requirements and don’t necessarily apply to every health plan.
Paul Ryan, president of the PACE Foundation, which supports research and treatment for the disorders, said Michigan’s proposed House Bill 6148 is part of a broader effort to establish insurance protections nationwide.
“The proposed Michigan bill is part of a larger national movement by state legislatures to ensure that children diagnosed with PANS/PANDAS receive timely medical treatments,” Ryan told The Defender.
Nebraska became one of the latest states to adopt such protections when Gov. Jim Pillen signed Legislative Bill 762 on April 14. The law, scheduled to take effect Jan. 1, 2027, requires applicable insurers to cover treatments including antibiotics, behavioral therapies, plasma exchange and IVIG.
Virginia also began requiring coverage under certain insurance policies in 2026, although its mandate excludes individual and small-group policies.
Currently, the requirements differ from state to state, leaving some families with fewer protections depending on where they live and how their insurance is structured.
State insurance mandates generally don’t apply to self-funded employer health plans regulated under the federal Employee Retirement Income Security Act.
Even when a mandate applies, insurers may retain authority to review whether a prescribed treatment is medically necessary.
Advocates argue that the gaps undermine the purpose of laws intended to ensure children receive timely medical care.
Advocates challenge medical guidelines
Diana Pohlman, founder of the PANDAS Network, said her son and daughter were diagnosed with PANDAS in 2007 and 2008 and subsequently recovered.
She established the organization to raise awareness of the disorders and help families obtain treatment.
Pohlman criticized the American Academy of Pediatrics (AAP) and neurologists who question the evidence supporting certain PANS/PANDAS treatments. She said insufficient research funding has prevented clinicians from publishing larger studies that could help establish treatment standards.
“It is difficult to publish large cohort papers without funding. Therefore they criticize us,” Pohlman told The Defender.
She also said the lack of support from major medical organizations makes it harder to persuade insurers to cover immune-directed treatments.
“Insurers won’t budge on IVIG treatment if the American Medical Associations don’t support it,” Pohlman said. “We can’t get people at the table.”
The dispute reflects larger disagreements within the medical community about the disorders’ causes, prevalence and treatment.
The AAP’s 2025 clinical report in Pediatrics described PANS as “likely a valid diagnosis” but emphasized that its biological mechanisms, diagnostic markers and optimal treatments remain uncertain.
“Much remains unknown about the condition,” the report states.
The PANS Research Consortium, meanwhile, has advocated a three-pronged approach addressing psychiatric and behavioral symptoms, possible immune dysfunction and infections.
It recommended cognitive behavioral therapy, appropriate psychiatric medications and standard antibiotic treatment for confirmed symptomatic streptococcal infections.
However, it cautions against routinely using IVIG and other intensive immune therapies because clinical evidence remains limited and the treatments carry potential risks.
Advocacy groups who support mandated health coverage for children diagnosed with PANS/PANDAS and oppose the AAP’s report argue that not offering all healthcare options would lead “children into needless suffering and irreversible harm.”
New Jersey families face mounting costs
In New Jersey, parents are pressing lawmakers to advance legislation requiring commercial insurers to cover PANS and PANDAS treatment.
In September, families told the New Jersey Monitor that insurance companies frequently refused to pay for IVIG, leaving parents facing substantial medical bills.
“These kids deserve to get proper healthcare without the parents going bankrupt,” Dr. Rosalie Greenberg, a pediatric psychiatrist in Summit, New Jersey, told the Monitor.
Devon Collins, whose daughter Brynn received IVIG, described purchasing a second insurance policy after encountering coverage problems. The additional policy cost about $600 a month, an expense the family could not sustain beyond one year.
“It’s so cruel,” Collins told the Monitor.
Another parent, Alissa Johnson, has advocated for expanded coverage after her 14-year-old daughter, Louisa, died by suicide in July 2021, while experiencing what the family described as a PANDAS flare-up. The family’s account does not establish that PANDAS caused her death.
“There are children and families in New Jersey that are impacted by these truly devastating conditions that cannot wait,” Johnson told the Monitor.
An April 2026 assessment by New Jersey’s Mandated Health Benefits Advisory Commission estimated annual treatment costs of approximately $10,000 to $15,000 per patient, based on analyses of similar insurance legislation in other states.
The commission said mandatory coverage could improve access to treatment and reduce financial hardship, although it raised concerns about limited evidence supporting some of the most expensive therapies.
For parents seeking treatment, the legislative delays can mean continued lack of clarity over whether insurance will cover care.
The Defender is 100% reader-supported. No corporate sponsors. No paywalls. Our writers and editors rely on you to fund stories like this that mainstream media won’t write. 
This article was funded by critical thinkers like you.
Massachusetts treatment center closure raises concerns
Families in Massachusetts face another obstacle, despite living in a state that already requires certain insurers to cover PANS and PANDAS treatment: Mass General Brigham plans to close its specialized PANS/PANDAS treatment program at the end of 2026, according to The Boston Globe.
The program, established in 2013, had completed more than 1,500 new patient evaluations and recorded more than 3,000 patient visits by 2024.
The Massachusetts Department of Public Health’s PANDAS/PANS Advisory Council has asked state officials to examine the closure and urged the hospital to maintain the program through January 2028, The Boston Globe reported.
The planned closure has alarmed families who say specialized care is already difficult to obtain, even when insurance covers treatment.
Lemley, whose organization helped secure Oregon’s insurance mandate in 2023 after five years of advocacy, said families increasingly report being turned away by hospitals that consider the disorders controversial.
“Families are forced to travel across state lines, pay tens of thousands of dollars out of pocket, or watch their children deteriorate while searching for someone willing to help,” she told The Defender. “Coverage alone cannot help a child when no hospital or clinician is willing to recognize, evaluate, diagnose or treat the condition.”
Researchers disagree over how many children are affected
The number of children affected by PANS and PANDAS also remains uncertain.
The PANDAS Network estimates that approximately 1 in 200 children in the U.S. is affected by the disorders.
However, a retrospective study involving more than 95,000 children at three academic medical centers produced a substantially lower estimate.
Researchers reviewed 357 potential cases from 2017-2019 and identified 13 confirmed cases, estimating about one new case annually per 11,765 children ages 3-12.
The discrepancy illustrates continued vagueness surrounding the disorders’ prevalence, diagnosis and recognition.
Lemley, however, said children should not be left without care because of disputes among researchers, insurers, hospitals and medical organizations.
“We need legislation — but we also need hospital accountability, clinician education, enforceable access to care, and an end to the institutional denial that continues to place children in danger,” she said. “We need nationwide treatment coverage and required clinician education. Coverage means little if no one recognizes the illness.”
Related articles in The Defender
