ATLANTA – State Representative Karen Bennett (D-Stone Mountain) today announced that the Georgia House of Representatives passed House Bill 1484 on Tuesday, March 15. HB 1484 would authorize a three-year pilot program to help diagnosis, treat and provide outreach for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) and Pediatric Acute Onset Neuropsychiatric Syndrome (PANS).
“This legislation is a good first step to providing much needed resources to combat this disease,” said Rep. Bennett. “After several years of working with child care advocates and families of children with PANS/PANDAS, I am happy to see that my colleagues in the Georgia House of Representatives recognize the need to study and provide solutions that will help children who contract these diseases and their families.”
This legislation would create a three-year pilot program in the State Employee Health Benefit Program to provide insurance coverage for the diagnosis and treatment of PANS/PANDAS. The bill would also authorize outreach efforts to pediatricians and pediatric subspecialists in the state to help them understand how to identify, diagnose, treat and appropriately code for these disorders.
This three-year pilot would begin in 2024 and help treat up to 100 individuals annually by using intravenous immune globulin therapy and other methods. The Georgia Department of Community Health would work with a patient advocacy organization to create outreach and educational resources for the eligible population and pediatric providers. Starting at the end of the program’s first year, the department would submit an annual report to the House and Senate Health and Human Services committees to include extensive details to evaluate the program’s effectiveness.
Since 2018, Rep. Bennett has lead efforts and worked closely with affected families to address this issue through legislation. She sponsored legislation that created the 2019 House Study Committee on PANS/PANDAS. In this study the committee found that patients and families face barriers for treatment due to medical providers being unfamiliar with these diseases, and unreliable medical coverage by insurers is the most significant hindrance for families. Rep. Bennett co-sponsored HB 1484, which was brought forward following the recommendations of this study committee.
PANS/PANDAS are post-infectious illnesses that cause a sudden onset of a variety of neuropsychiatric symptoms including Obsessive Compulsive Disorder (OCD), tics and/or avoidant-restrictive food intake disorder (ARFID). The Southeastern PANS/PANDAS Association (SEPPA), a Georgia-based nonprofit patient advocate organization, estimates that roughly 13,000 Georgia children are affected by these illnesses.
When left untreated, PANS/PANDAS symptoms can require expensive treatments, such as intravenous immune globulin (IVIG) therapy. PANS/PANDAS can cause academic regressions, behavioral issues at school or a total inability to attend school. Behavioral challenges at home can significantly disrupt family life and make it more difficult for both parents to continue to work.
For more information on HB 1484, please click here.
For more information about the study committee’s work, please click here.
Representative Karen Bennett represents the citizens of Districts 94, which includes portions of DeKalb and Gwinnett counties. She was elected to the House of Representatives in 2012 and currently serves on the Code Revision, Economic Development & Tourism, Health & Human Services and Regulated Industries committees.
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