Why Mandated Insurance Coverage for PANS and PANDAS Is Necessary
Providing Equal and Comparable Access to Medically Necessary Care
Mandated Insurance Coverage for PANS and PANDAS: Overview
Without mandated insurance coverage, patients often face denied or delayed access to physician-prescribed treatment, allowing these conditions to become profoundly disabling and, in some cases, permanently life-altering.
Actuarial analysis has shown that mandated insurance coverage for PANS and PANDAS can be provided at minimal cost, measured in fractions of a cent per member per month, while preventing far greater long-term medical, educational, and public-system costs.
The Issue
PANS/PANDAS patients frequently face insurance denials for physician-prescribed treatments, including immune-based therapies, even when those treatments are medically indicated and supported by clinical expertise. Inconsistent recognition of PANS and PANDAS across insurance policies contributes to delayed diagnosis and treatment and reinforces gaps in clinician education.
Because these conditions are often under or misdiagnosed, the true number of affected individuals remains unknown, and the absence of nationwide data collection obscures the scope of the need. Without clear coverage standards, patients may endure prolonged misdiagnosis, inappropriate psychiatric-only treatment, and delayed care, increasing the risk of ongoing neuroinflammation, long-term disability, and unnecessary reliance on emergency services, inpatient hospitalization, special education systems, and public benefits.
Families and adult patients are frequently forced to pay out of pocket, deplete savings, or forgo treatment entirely, resulting in inequitable access to care based on financial means rather than medical necessity.
The Solution
Mandated insurance coverage for PANS/PANDAS ensures that medically necessary, physician-prescribed care is accessible and reviewable under clear standards rather than categorically excluded. Insurance mandates allow coverage determinations to be based on medical necessity, peer-reviewed evidence, and clinical judgment, rather than blanket denials. This approach supports timely treatment, improves outcomes, and reduces long-term costs associated with delayed or inappropriate care.
Precedent
Aetna has recently updated its medical policy to recognize PANS and PANDAS and allow coverage when defined diagnostic criteria and medical necessity standards are met. This demonstrates that coverage can be implemented responsibly and reviewed using clear, evidence-based standards. However, reliance on a single insurer’s policy results in inconsistent access and inequity across states, plans, and age groups. Mandated insurance coverage is necessary to ensure equitable access to care for both pediatric and adult patients, regardless of insurer, employment status, or geography.
Insurance coverage for PANS and PANDAS has also been established through legislation or policy in multiple states. Coverage exists in at least the following states: Arizona, Arkansas, California, Colorado, Delaware, Georgia, Idaho, Illinois, Indiana, Kansas, Louisiana, Maryland, Massachusetts, Minnesota, New Hampshire, Oregon, Rhode Island, Tennessee, Virginia, and Washington. Coverage type and scope vary by state and insurer. These actions reflect growing recognition that early and appropriate treatment reduces long-term disability, educational disruption, and strain on public systems.
The Current Coverage Reality
- Health insurance companies often deny coverage for prescribed treatments for PANS and PANDAS, including IVIG and other immune-based therapies.
- Denials occur even when treatments are medically indicated and prescribed by qualified specialists
- As a result, patients may endure months or years of misdiagnosis or incomplete treatment.
- Delayed treatment increases the risk of ongoing neuroinflammation and long-term disability.
- Families are often forced to choose between financial hardship and medically necessary care.
An Invisible but Urgent Problem
- Delayed access to appropriate, insurance-based care increases suffering and worsens outcomes.
- The true number of individuals affected by PANS and PANDAS is unknown due to underdiagnosis and misdiagnosis. The lack of nationwide data collection obscures the scope of need.
- Limited clinician education and inconsistent insurance coverage delay identification and treatment.
Prevalence
The true number of individuals affected by PANS and PANDAS is unknown due to underdiagnosis and misdiagnosis, and the absence of nationwide data collection further obscures the scope of need. Available prevalence research suggests the condition may affect approximately 1 in 11,765 children ages 3–12, though this likely underestimates the true prevalence, and incidence in adults has not been systematically studied.
Cost Impact
An analysis conducted by the Virginia Board of Insurance estimated the cost of mandated insurance coverage for PANS and PANDAS at $0.0046 per member per month, or less than half a cent. This finding demonstrates that coverage does not represent a meaningful financial burden to insurers or employers. While cost estimates vary by state, Virginia’s analysis is consistent with actuarial findings in other states that have evaluated similar mandates, showing minimal impact when spread across the insured population.
Treatment Reality
- Not all patients with PANS and PANDAS require high-cost treatments such as IVIG or other immunomodulatory therapies.
- Many patients improve with early identification, treatment to address underlying triggers, immune dysregulation, and appropriate psychiatric support.
- Insurance coverage enables clinically appropriate, individualized care rather than crisis-driven and more expensive interventions.
The Cost of Inaction:
How Failure to Mandate Coverage Harms Patients, Families, and Public Systems
Medical Costs of Inaction
- Early identification and appropriate treatment of PANS and PANDAS often result in less costly interventions that may only be needed for a limited time.
- Delayed or denied care leads to repeated emergency visits, unnecessary hospitalizations, prolonged psychiatric treatment without immune evaluation, and a higher chance of intensive or lifelong interventions that do not address the underlying neuroimmune disease.
- Police, emergency responders, and crisis services are often involved as symptoms escalate.
- Symptom management replaces recovery-focused care, extending costs over years.
Risk of Long-Term Disability
- Delays in diagnosis and treatment increase the risk of persistent symptoms into adulthood.
- Delayed care leads to permanent neurological, cognitive, or functional impairment, resulting in lifelong dependence on public services for some patients.
- Missed treatment windows can turn a treatable illness into a lifelong disorder.
Educational System Burden
- Delayed or denied medical care frequently prevents students from accessing the curriculum, causing educational disruptions that may persist for years but are often avoidable with timely treatment.
- Most students require formal accommodations, such as 504 plans and IEPs.
- Many need prolonged homebound or hospital-based instruction
- Some require outplacement, specialized tutoring, or alternative educational settings.
Economic Impact on Families and Public Systems
- Many families require at least one parent to stop working or reduce employment to provide full-time care.
- This loss of household income reduces tax revenue and economic participation, and may require unemployment benefits or family leave.
- Families frequently sell homes, deplete savings, incur substantial debt, and exhaust retirement accounts, including 401(k)s, permanently eliminating future financial security.
- Many families exhaust their retirement savings, including 401(k) accounts, eliminating future financial security.
- Adult patients may be unable to sustain employment and may ultimately rely on disability benefits.
Disparities and Inequity
- Lack of mandated coverage disproportionately harms low-income and marginalized families.
- Access to care depends on finances rather than medical necessity.
- Delayed diagnosis and poorer outcomes reinforce existing racial, economic, and educational inequities.
Human Cost
- PANS and PANDAS can cause severe neuropsychiatric symptoms, including OCD, restricted eating, anxiety, aggression, and suicidality.
- Delayed diagnosis and treatment can erase a child’s childhood, which cannot be recovered.
- Loss of childhood often alters adult trajectories, affecting education, employment, relationships, family formation, and independent functioning.
- Family systems are profoundly disrupted, and siblings frequently experience secondary trauma.
- Caregiver burden is exceptionally high and comparable to other severe chronic neurological conditions.
- Death by suicide has occurred among affected individuals and, in some cases, their parents.
- Deaths have also been reported due to severe medical complications associated with the illness, including those secondary to anorexia.
Legislative Rationale
- Legislative action is needed to prevent avoidable suffering, disability, workforce loss, and long-term public expense.
- Failure to mandate care delays care, worsens outcomes, and shifts long-term financial and human burdens onto families, schools, emergency systems, and public services.
- Failure to mandate insurance coverage for PANS and PANDAS does not reduce costs. The cost of inaction is higher than the cost of care.
Gabriella True
