2026 Pennsylvania PANS PANDAS Legislation
For more information, please reach out to Pennsylvania State Leads Bonnie Markowitz and Kathy Rubel.
See below for the Current Call to Action
Resolution directing the Joint State Government Commission to conduct a study on PANS and PANDAS
Resolution Information: Link
I am introducing a resolution directing the Joint State Government Commission to conduct a study on Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), immune-mediated conditions that trigger sudden, severe neuropsychiatric symptoms in children which include obsessive-compulsive behaviors, tics, anxiety, and cognitive decline and often follow infections like strep throat. Affecting an estimated one in 200 children, these treatable disorders can lead to full recovery with prompt antibiotics, anti-inflammatories, or intravenous immunoglobulin (IVIG), yet Pennsylvania families face significant obstacles due to limited specialized providers, frequent misdiagnoses with psychiatric conditions, and inconsistent insurance coverage.
The Pennsylvania Rare Disease Advisory Council (PARDAC) has not issued specific guidance on PANS and PANDAS, and the Commonwealth lacks laws, unlike at least 15 other states, that mandate coverage for diagnosis and treatment. This resolution calls for a comprehensive study of insurance practices, state resources, provider capacity, misdiagnosis impacts, other states’ policies, and recommendations to improve access, education, and support.
The Commission will consult PARDAC, medical organizations, insurers, and advocacy groups, delivering a report with findings and policy recommendations to the Governor and legislative leadership within 18 months. Please join me in cosponsoring this resolution to address the urgent needs of Pennsylvania children and families affected by PANS and PANDAS.
Call to Action
Potential script for legislators
Dear Representative ___________
Please co-sponsor the resolution on PANS/PANDAS.
PANS/PANDAS are misdirected immune responses that trigger brain inflammation, which causes abrupt onset or worsening obsessive-compulsive symptoms, restricted intake of food or fluids, anxiety, depression, suicidality, emotional lability, personality changes, sensory hypersensitivity, cognitive deficits and physical symptoms, including urinary dysfunction and severe insomnia. Common infections like strep throat, COVID-19, walking pneumonia, and flu can trigger PANS/PANDAS. Lyme disease and other tick-borne infections common in Pennsylvania can also trigger PANS.
Symptoms can range from mild to severe. In mild cases, children might function well enough to continue to attend school. In severe cases, symptoms can become life-threatening due to extreme food restriction and/or suicidality. Many children with PANS/PANDAS are diagnosed with a psychiatric illness and prescribed psychotropic medications rather than being evaluated and treated for an underlying infection.
Early and comprehensive PANS/PANDAS treatment is crucial for optimal patient outcomes. Medical intervention within the first year of initial onset often leads to recovery, while a failure to receive timely and appropriate treatment may necessitate more intensive protocols.
Many children in Pennsylvania are not receiving timely diagnoses and treatment and prescribed treatments are often not covered by insurance. Unfortunately, the lack of insurance coverage results in delays or the prevention of critical treatments, exacerbating symptoms and causing devastating, needless suffering and long-term neurologic, cognitive, and psychiatric dysfunction. It is economically prudent to identify and address this illness rather than burden patients and their social, educational, and familial systems with lifelong care. Please support this resolution which calls for a comprehensive study of insurance practices, state resources, provider capacity, misdiagnosis impacts, other states’ policies, and recommendations to improve access, education, and support for children suffering from PANDAS / PANS.
Your support is critical; our family can’t wait any longer for appropriate medical treatment.
(Include your story here)
Please help.
Sincerely,
General Legislative Information
- Legislative Recap – PANS PANDAS Legislation Nationwide
- How Get Started: How to talk to your state representative
- Look Up Your State Representative & State Senator in your district
- ASPIRE Legislative Action Toolkit: Information for Legislators Toolkit
- Legislative Talking Tips
- Legislative Writing Points & Examples: Testimony & Short Form Emails
Previous Bills
HB1803 – 2025
Bill Number & Name: HB1803:An Act establishing the Advisory Council on PANDAS and PANS; and providing for the duties of the Advisory Council on PANDAS and PANS.
Current Bill Status: PA General Assembly
Current Language: Link
Sponsors: COOPER, BRIGGS, JAMES, GAYDOS, STEELE and GILLEN
📣 Call to Action for Pennsylvania Advocates!
Join PA State Leads Bonnie Markowitz and Kathy Rubel for a PANS/PANDAS Advocacy Meeting as we prepare for an important PA Legislative Meeting about HB 1803.
🗓 When: Tuesday, October 21 at 7:30 PM (ET)
💻 Where: Join via Zoom
🔑 Meeting ID: 859 0238 9176
🔒 Passcode: 241397
During this meeting, we’ll review talking points and strategies for the upcoming October 30th virtual meeting with Representative Frankel (via Teams) to discuss PA HB 1803. Representative Cooper, a supporter of the bill, will also attend.
We’ll also set aside time at the end of the Zoom for community support and connection.
📧 If you’d like to join the October 30 meeting, please watch for a separate Facebook post where we’ll collect email addresses. The Teams invite will be shared once received from Representative Frankel’s office.
Let’s come together to make sure Pennsylvania’s voice for PANS/PANDAS patients is heard!
See below for more information on HB103
Gabriella True
