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.

PRIOR PRINTER'S NO. 3413 PRINTER'S NO. 3635
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No. 528
Session of
2026
INTRODUCED BY COOPER, BRIGGS, PASHINSKI, STEELE, STRUZZI,
BRENNAN AND C. WILLIAMS, MAY 14, 2026
AS REPORTED FROM COMMITTEE ON HEALTH, HOUSE OF REPRESENTATIVES,
AS AMENDED, JUNE 17, 2026
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.
WHEREAS, Pediatric acute-onset neuropsychiatric syndrome
(PANS) and pediatric autoimmune neuropsychiatric disorders
associated with streptococcal infections (PANDAS) are immune-
mediated disorders triggered by many different infections, such
as streptococcal infections, which cause sudden and severe
neuropsychiatric symptoms, including obsessive-compulsive
behaviors, tics, anxiety, restricted eating, mood swings and
cognitive deterioration; and
WHEREAS, The true lifetime prevalence of PANS and PANDAS is
not known and frequent misdiagnosis makes it difficult to
estimate the number of people affected; and
WHEREAS, Effective treatments for PANS and PANDAS, including
antibiotics, anti-inflammatory therapies and intravenous
immunoglobulin (IVIG), can lead to full recovery if administered
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promptly but patients often experience limited or delayed access
to these treatments because of inconsistent insurance coverage
and a shortage of knowledgeable health care providers; and
WHEREAS, The Pennsylvania Rare Disease Advisory Council
(PARDAC) serves as an advisory board to the General Assembly and
other State and private agencies that provide services to or are
charged with the care of individuals with rare diseases but has
not yet issued specific resources or recommendations on PANS and
PANDAS; 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 creates significant barriers
to timely and appropriate care for affected patients and
families across this Commonwealth; and
WHEREAS, Patients affected by PANS and PANDAS are frequently
misdiagnosed with primary psychiatric disorders such as
obsessive-compulsive disorder, attention-deficit/hyperactivity
disorder, oppositional defiant disorder, Tourette's syndrome,
autism spectrum disorder, avoidant or restrictive food intake
disorder, anorexia, major depressive disorder, generalized
anxiety disorder or bipolar disorder, which leads to delayed
treatment and prolonged suffering; and
WHEREAS, There are no State laws that mandate insurance
coverage for PANS and PANDAS treatments, unlike 22 states that
offer some insurance coverage and at least 15 states, including
Illinois, Massachusetts, Virginia and California, that have
enacted laws requiring coverage for diagnosis and therapies such
as IVIG; and
WHEREAS, A comprehensive study is necessary to address gaps
in awareness, resources, insurance coverage, provider capacity
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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 treatments
for PANS and PANDAS, including diagnostic tests, antibiotics,
anti-inflammatory medications and immunomodulatory therapies
such as IVIG.
(2) Existing resources provided by the Commonwealth
regarding PANS and PANDAS, including any initiatives, funding
or guidance from PARDAC.
(3) An estimate of the number of health care
practitioners who treat PANS and PANDAS across this
Commonwealth, including pediatricians, neurologists,
immunologists and psychiatrists with relevant expertise.
(4) The most common misdiagnoses for PANS and PANDAS and
the impact of those misdiagnoses on patient outcomes.
(5) Legislative and policy actions taken by other states
to address PANS and PANDAS, including insurance mandates,
mandated provider education, awareness campaigns and advisory
councils.
(6) Recommendations for legislation or policy changes in
this Commonwealth to improve diagnosis, treatment access,
insurance coverage, provider education and support services
for PANS and PANDAS.
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(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 PARDAC, Statewide medical
organizations, such as the Pennsylvania Medical Society and the
Pennsylvania Chapter of the American Academy of Pediatrics,
national experts in PANS, including the PANS Research Consortium
at Stanford, health insurers that operate in this Commonwealth,
rare disease advocacy groups, such as PANDAS/PANS Parents of
Pennsylvania, the PANDAS Physicians Network and the Alliance to
Solve PANS and Immune-Related Encephalopathies, and health care
access groups, such as 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
this resolution; and be it further
RESOLVED, That copies of this resolution be transmitted to
the Department of Health, the Insurance Department and the
organizations consulted in the study.
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.
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
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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
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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,
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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
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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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