New Jersey advances bill to mandate insurance coverage for PANS and PANDAS treatments amid growing state reforms

Families in New Jersey are lobbying lawmakers to require health insurers to cover diagnosis and treatment of rare neuropsychiatric conditions PANS and PANDAS, echoing trends in other states and highlighting urgent human and medical concerns.

New Jersey families are pressing lawmakers to require health insurers to cover the diagnosis and treatment of PANS and PANDAS, two rare but often abrupt neuropsychiatric conditions that can upend a child’s health and family life. Advocates say the disorders can begin after an infection or other immune trigger, leave children with severe obsessive-compulsive symptoms, tics and, in some cases, psychosis, and often lead to years of uncertainty before a diagnosis is confirmed.

For Cece Moos, now 25 and living in Bernardsville, the condition first appeared when she was 8, after what she described as a stomach bug spreading through her classroom. She said the disorder has been manageable at times with an over-the-counter antihistamine, but for many patients the needed care is far more intensive and expensive. Her mother, Ashley Moos, is among those calling for a state mandate, arguing that families should not have to fight insurers while trying to stabilise a child in crisis.

The measure, introduced as Assembly Bill A3246 and mirrored in the Senate as S598, would require commercial health plans in New Jersey to cover expenses tied to diagnosis and treatment, including antibiotics, behavioural therapy, immunomodulating medicines, plasma exchange and intravenous immunoglobulin, often known as IVIG. According to the bill text, the coverage would apply to individual, group and small-employer plans, as well as health maintenance organisation contracts, on the same terms as other covered conditions.

That approach would bring New Jersey closer to a growing number of states that have moved on the issue. California’s law took effect on January 1, 2025, and requires coverage for medically necessary PANS and PANDAS treatment without extra cost-sharing above other benefits. Louisiana enacted a broader mandate in 2025, and Virginia passed a law in 2025 that takes effect for policies issued or renewed on or after January 1, 2026. A national legislative summary for 2026 also lists similar proposals in several other states.

Still, the debate in New Jersey remains unresolved. An April 2026 report from the state Mandated Health Benefits Advisory Commission said treatment can cost roughly $10,000 to $15,000 a patient a year and noted that the condition is rare, while also saying the scientific evidence for the most expensive interventions is not firmly settled. The commission said broader coverage could improve access and outcomes, but stopped short of recommending a mandate without more clinical evidence.

For parents such as Alissa Johnson and Devon Collins, the policy argument is inseparable from the human toll. Johnson’s daughter, Louisa, died by suicide during a PANDAS flare in 2021. Collins said her daughter Brynn improved after a free transfusion in a clinical trial and later through antibody infusions, but coverage lapses and cost pressures made the treatment difficult to sustain. Doctors and parents say some children respond to basic anti-inflammatory drugs and antibiotics, while others need more aggressive care to regain a normal life.

Doctors who treat the disorder say the stakes are too high for delay. Rosalie Greenberg, a paediatric psychiatrist in Summit, said children can lose years of schooling, family stability and health when treatment is not covered or is denied. Lawmakers from both parties have backed the measure, but it has not yet been scheduled for a hearing. For families still navigating the diagnosis, advocates say, the wait itself can be part of the illness.