HR 528 — A Resolution directing the Joint State Government Commission to conduct a study on pediatric acute-onset neuropsychiatric syndrome and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.

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3413 THEPRINTER'S GENERALNO. ASSEMBLY OF PENNSYLVANIA HOUSE RESOLUTION Session of No.

3635 THE GENERAL ASSEMBLY OF PENNSYLVANIA HOUSE RESOLUTION Session of No.

WILLIAMS, MAY 14, 2026 REFERREDAS TOREPORTED FROM COMMITTEE ON HEALTH, MAYHOUSE 14,OF REPRESENTATIVES, AS AMENDED, JUNE 17, 2026 A RESOLUTION DirectingDirstudy theon Jointpediatric Stateacute-onset Governmentneuropsychiatric Commissionsyndrome toand conduct<-- a pediatric autoimmune neuropsychiatric disorders associatedndassociated with streptococcal infections.

and WHEREAS, A comprehensive study is necessary to address gaps in awareness, resources, insurance coverage, provider capacity 20260HR0528PN3635 - 2 - and policy in order to better support affected patients and 20260HR0528PN3413 - 2 - families across this Commonwealth;

20260HR0528PN3635 - 3 - (7) Any other information that the Joint State 20260HR0528PN3413 - 3 - Government Commission deems necessary for the completion of the study;

20260HR0528PN3413DIRECTING -THE 4JOINT -STATE GOVERNMENT COMMISSION TO CONDUCT A <-- STUDY ON PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME AND PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS ASSOCIATED WITH STREPTOCOCCAL INFECTIONS.

WHEREAS, PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME (PANS) AND PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS ASSOCIATED WITH STREPTOCOCCAL INFECTIONS (PANDAS), A SUBSET OF PANS, ARE CONSIDERED IMMUNE-MEDIATED DISORDERS THAT MAY BE TRIGGERED BY DIFFERENT INFECTIONS, INCLUDING STREPTOCOCCAL 20260HR0528PN3635 - 4 - INFECTIONS, AND THAT MAY CAUSE SUDDEN AND SEVERE NEUROPSYCHIATRIC SYMPTOMS, INCLUDING OBSESSIVE-COMPULSIVE BEHAVIORS, TICS, ANXIETY, RESTRICTED EATING, MOOD SWINGS AND COGNITIVE DETERIORATION;

AND WHEREAS, THE AMERICAN ACADEMY OF PEDIATRICS CLINICAL REPORT ON PANS NOTED THAT PANS IS DIFFICULT TO DIAGNOSE DUE TO THE LACK OF DISEASE-SPECIFIC BIOMARKERS, STRONG EVIDENCE FOR PATHOGENIC CAUSES OR CONSENSUS ON TREATMENT;

AND WHEREAS, THE AMERICAN ACADEMY OF PEDIATRICS NOTED THAT THE EVIDENCE BASE FOR PANS ENCOMPASSES MULTIPLE SUBSPECIALTIES, INCLUDING CHILD AND ADOLESCENT PSYCHIATRY, PEDIATRIC RHEUMATOLOGY, PEDIATRIC NEUROLOGY, PEDIATRIC INFECTIOUS DISEASES, PEDIATRIC IMMUNOLOGY AND DEVELOPMENTAL-BEHAVIORAL PEDIATRICS;

AND WHEREAS, THE TRUE LIFETIME PREVALENCE OF PANS AND PANDAS IS NOT KNOWN, AND DIFFICULTY IN DIAGNOSIS MAKES IT DIFFICULT TO ESTIMATE THE NUMBER OF INDIVIDUALS AFFECTED;

AND WHEREAS, SOME PROVIDERS BELIEVE THAT EFFECTIVE TREATMENTS FOR PANS AND PANDAS, INCLUDING PSYCHIATRIC AND BEHAVIORAL INTERVENTIONS, ANTIBIOTICS, ANTI-INFLAMMATORY THERAPIES AND INTRAVENOUS IMMUNOGLOBULIN, CAN LEAD TO FULL RECOVERY;

AND WHEREAS, A LIMITED NUMBER OF HEALTH CARE PRACTITIONERS IN THIS COMMONWEALTH HAVE SPECIALIZED TRAINING IN THE DIAGNOSIS AND TREATMENT OF PANS AND PANDAS, WHICH MAY CREATE BARRIERS TO TIMELY AND APPROPRIATE CARE FOR AFFECTED PATIENTS AND FAMILIES ACROSS THIS COMMONWEALTH;

AND WHEREAS, INSURANCE COVERAGE FOR PANS MAY NOT COVER ALL PREFERRED TREATMENTS;

AND WHEREAS, TWENTY-TWO STATES OFFER SOME INSURANCE COVERAGE FOR PANS AND PANDAS, AND AT LEAST 15 STATES HAVE ENACTED LAWS 20260HR0528PN3635 - 5 - REQUIRING COVERAGE FOR DIAGNOSIS AND THERAPIES, INCLUDING INTRAVENOUS IMMUNOGLOBULIN;

AND WHEREAS, A COMPREHENSIVE STUDY IS NECESSARY TO ADDRESS GAPS IN AWARENESS, RESOURCES, INSURANCE COVERAGE, PROVIDER CAPACITY AND POLICY IN ORDER TO BETTER SUPPORT AFFECTED PATIENTS AND FAMILIES ACROSS THIS COMMONWEALTH;

THEREFORE BE IT RESOLVED, THAT THE HOUSE OF REPRESENTATIVES DIRECT THE JOINT STATE GOVERNMENT COMMISSION TO CONDUCT A STUDY ON PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME AND PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS ASSOCIATED WITH STREPTOCOCCAL INFECTIONS IN THIS COMMONWEALTH;

AND BE IT FURTHER RESOLVED, THAT THE JOINT STATE GOVERNMENT COMMISSION, IN CONDUCTING THE STUDY, EXAMINE ALL OF THE FOLLOWING:

(1) WHICH INSURERS, IF ANY, CURRENTLY COVER OFFERED TREATMENTS FOR PANS AND PANDAS, INCLUDING PSYCHIATRIC AND BEHAVIORAL INTERVENTIONS, DIAGNOSTIC TESTS, ANTIBIOTICS, ANTI-INFLAMMATORY MEDICATIONS AND IMMUNOMODULATORY THERAPIES, INCLUDING INTRAVENOUS IMMUNOGLOBULIN.

(2) INSURANCE COMPANY DECISION MAKING REGARDING COVERAGE FOR TREATMENTS OF PANS AND PANDAS, INCLUDING THE JUSTIFICATION FOR COVERAGE DECISIONS.

(3) AN ESTIMATE OF THE NUMBER OF HEALTH CARE PRACTITIONERS WHO TREAT PANS AND PANDAS ACROSS THIS COMMONWEALTH, INCLUDING PEDIATRICIANS, NEUROLOGISTS, RHEUMATOLOGISTS, IMMUNOLOGISTS AND PSYCHIATRISTS WITH RELEVANT EXPERTISE.

(4) THE ESTIMATED LENGTH OF TIME BETWEEN THE ONSET OF SYMPTOMS AND A DIAGNOSIS OF PANS.

(5) LEGISLATIVE AND POLICY ACTIONS TAKEN BY OTHER STATES TO ADDRESS PANS AND PANDAS, INCLUDING INSURANCE MANDATES, 20260HR0528PN3635 - 6 - MANDATED PROVIDER EDUCATION, AWARENESS CAMPAIGNS AND ADVISORY COUNCILS.

(6) RECOMMENDATIONS FOR LEGISLATION OR POLICY CHANGES IN THIS COMMONWEALTH TO IMPROVE APPROPRIATE DIAGNOSIS, TREATMENT ACCESS, INSURANCE COVERAGE, PROVIDER EDUCATION AND SUPPORT SERVICES FOR PANS.

(7) ANY OTHER INFORMATION THAT THE JOINT STATE GOVERNMENT COMMISSION DEEMS NECESSARY FOR THE COMPLETION OF THE STUDY;

AND BE IT FURTHER RESOLVED, THAT THE JOINT STATE GOVERNMENT COMMISSION, IN CARRYING OUT THE STUDY, CONSULT WITH STATEWIDE MEDICAL ORGANIZATIONS, INCLUDING THE PENNSYLVANIA MEDICAL SOCIETY AND THE PENNSYLVANIA CHAPTER OF THE AMERICAN ACADEMY OF PEDIATRICS, PEDIATRIC PROVIDERS, INCLUDING CHILD AND ADOLESCENT PSYCHIATRISTS, PEDIATRIC RHEUMATOLOGISTS, PEDIATRIC INFECTIOUS DISEASE EXPERTS, PEDIATRIC IMMUNOLOGISTS, DEVELOPMENTAL- BEHAVIORAL PEDIATRICIANS AND PEDIATRIC NEUROLOGISTS, NATIONAL EXPERTS IN PANS, INCLUDING THE STANFORD IMMUNE BEHAVIORAL HEALTH/PANS PROGRAM, HEALTH INSURERS THAT OPERATE IN THIS COMMONWEALTH, RARE DISEASE ADVOCACY GROUPS, INCLUDING PANDAS/PANS PARENTS OF PENNSYLVANIA, THE PANDAS PHYSICIANS NETWORK AND ASPIRE, THE ALLIANCE TO SOLVE PANS AND IMMUNE- RELATED ENCEPHALOPATHIES, AND HEALTH CARE ACCESS GROUPS, INCLUDING THE PENNSYLVANIA HEALTH ACCESS NETWORK, TO DEVELOP EVIDENCE-BASED RECOMMENDATIONS FOR INCLUSION IN THE STUDY REPORT;

AND BE IT FURTHER RESOLVED, THAT THE JOINT STATE GOVERNMENT COMMISSION ISSUE A REPORT OF ITS FINDINGS AND RECOMMENDATIONS TO THE HOUSE OF REPRESENTATIVES NO LATER THAN 18 MONTHS AFTER THE ADOPTION OF 20260HR0528PN3635 - 7 - THIS RESOLUTION;

AND BE IT FURTHER RESOLVED, THAT, UPON ISSUANCE OF THE REPORT REQUIRED UNDER THIS RESOLUTION, COPIES OF THE REPORT BE TRANSMITTED TO THE DEPARTMENT OF HEALTH, THE INSURANCE DEPARTMENT AND THE ORGANIZATIONS CONSULTED IN THE STUDY.

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