Families in New Jersey are urging state lawmakers to pass legislation requiring commercial health insurers to cover treatments for pediatric acute-onset neuropsychiatric syndrome (PANS) and its related condition, PANDAS. The push comes as advocates highlight the financial burden on parents seeking care for children with these rare autoimmune disorders.
Why It Matters
New Jersey currently lacks a mandate requiring private insurers to cover PANS and PANDAS treatments, leaving families responsible for significant out-of-pocket costs. While more than one-third of New Jersey’s children are covered by Medicaid—which pays for treatment deemed medically necessary under NJ Family Care—those relying on commercial insurance face potential gaps in coverage for specialized therapies.
What Happened
Legislation to mandate coverage was first introduced in the fall of 2025 and is currently sponsored by Sen. James Beach, a Democrat from Camden. The bill has not yet been posted for a hearing. Advocates, including Cece Moos of Bernardsville, are pushing for the measure to ensure consistent access to care. Moos, 25, has lived with a rare autoimmune disorder for 17 years and says it took three years to receive a diagnosis after her symptoms emerged at age 8.
The condition is thought to be triggered by bacteria, viruses, or toxins. PANDAS is a specific version linked to strep infections. Symptoms can include obsessive-compulsive tics and potentially deadly psychotic episodes. Moos also suffers from Lyme disease and other chronic conditions. She noted the importance of legislative recognition for patients who have struggled with diagnostic uncertainty.
“It’s really validating now that this is a thing and there’s a reason for it,” Moos said.
A Family’s Struggle
The urgency behind the legislation is underscored by the case of Louisa “Lulu” Johnson, who died by suicide in July 2021 at age 14 during a PANDAS flare. Her mother, Alissa Johnson, said the family spent two and a half years searching for a diagnosis and treatment. Lulu experienced digestive and heart issues alongside neuropsychiatric symptoms.
The family faced significant medical skepticism. One clinician told Johnson her daughter had a factitious disease, known as Munchausen syndrome. A hospital even contacted child protective services regarding the case. Following her daughter’s death, the family established the Louisa Adelynn Johnson Fund for Complex Disease to support others facing similar challenges.
By the Numbers
17 states — have adopted some form of coverage mandate for PANS/PANDAS
$10,000 to $15,000 — estimated annual treatment cost per patient in other states
3 years — time taken to diagnose Cece Moos’s condition
14 — age of Lulu Johnson at the time of her death
April 2026 — date of the state Mandated Health Benefits Advisory Commission report
Zoom Out
New Jersey is among a minority of states without a specific mandate for these conditions. Seventeen other states have adopted some form of coverage requirement. An April 2026 report from the state’s Mandated Health Benefits Advisory Commission reviewed similar legislation and noted that scientific evidence for expensive treatments is “not definitely settled.” The New Jersey Association of Health Plans has not taken a formal position on the bill.
Dr. Rosalie Greenberg, a pediatric psychiatrist in Summit, emphasized the financial risk to families. “These kids deserve to get proper healthcare without the parents going bankrupt,” she said. There is currently no clinical test or specific medical code for PANS/PANDAS, which complicates insurance claims and diagnosis.
What’s Next
The bill remains pending in the state Senate with no hearing scheduled. Advocates plan to continue lobbying lawmakers to advance the legislation, citing the precedent set by other states and the documented financial strain on families. The outcome will determine whether New Jersey joins the growing number of states requiring commercial insurers to cover these specialized treatments.