By Bob Katzen
The Senate approved and sent to the House a bill that would require all health insurance companies to cover the all forms of treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections
(PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS), including the use of intravenous immunoglobulin therapy.
“With the passage of this legislation, children and families struggling with the debilitating impacts of this terrible illness will no longer also have to struggle to access the treatment that they desperately need,” said the bill’s sponsor Sen. Jason Lewis (D-Winchester). “I want to thank my constituent, Sheilah Gauch, and her brave children Abby and Ian who, along with other amazing advocates, made this legislative victory possible.”
PANDAS Network is a group dedicated to improving the diagnosis and treatment of children with PANDAS. According to their website http://www.pandasnetwork.org the disease occurs “when strep triggers a misdirected immune response and results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more.”
Sen. Lewis says that children suffering from PANDAS and PANS often cannot attend school for extended periods of time and their home life is very disrupted. “It is also not unusual for multiple siblings in a single household to be affected, presumably due to the combination of close exposure to infectious agents and shared genetic backgrounds,” noted Lewis. “Emergency room visits are often needed due to sudden aggressive behaviors and psychiatric hospitalization may be required for severely afflicted children.”
“Mild to moderate cases of PANDAS and PANS can usually be treated successfully with antibiotics and nonsteroidal anti-inflammatory therapy, or other medications,” continued Lewis. “But, some children fail to improve with these conventional treatments and require IVIG therapy, which has been recommended since 2017 in guidelines prepared by the PANS Research Consortium. Unfortunately, not all health insurers in the commonwealth will cover IVIG treatment. This forces families to endure insurance denials, appeals, and financial burdens on top of everything else they are already dealing with. This is simply cruel and wrong.”