SPRINGFIELD – Patients with PANDAS and PANS have historically faced challenges receiving the health care coverage they need through insurance plans. An initiative led by State Senator Laura Fine would ensure patients are able to access all necessary treatment for these conditions without facing barriers from insurance companies, closing current loopholes some insurers are utilizing to not cover essential care.

“Without proper treatment, PANDAS and PANS can be debilitating diseases,” said Fine (D-Glenview). “This measure will make this essential treatment more accessible for patients, helping them recover and improve their quality of life.”

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) occur after an infection, most commonly a strep infection. Brain inflammation occurs when the body’s immune system mistakenly attacks healthy brain cells, leading to autoimmune processes that affect central nervous system function. An affected child generally has a sudden, dramatic change in personality, displayed as symptoms of obsessive-compulsive disorder like anxiety, tics or other abnormal movements, personality changes, sensory sensitivities, restrictive eating and more.

PANDAS and PANS patients have historically experienced difficulties receiving consistent coverage for their health care needs by insurers. The General Assembly has been working to make this necessary care more accessible, and in 2017 passed Charlie’s Law to require group or individual policies of accident and health insurance to cover treatment costs of PANDA/PANS treatments.

However, patients still face barriers from insurers to receive prescribed treatments. Under Charlie’s Law, insurers are only required to cover one intravenous immunoglobulin treatment for PANDAS or PANS patients instead of the medically necessary amount. This leaves many patients unable to have these further treatments covered by their insurers.

Senate Bill 101 would amend the Illinois Insurance Code to ensure that no accident or health insurance denies or delays coverage or a medically necessary treatment because the patient previously received any treatment, or the same or similar treatment, for PANDAS or PANS. This means that more patients can access this vital treatment for their condition, which can significantly reduce symptoms and even reverse PANDAS.

Senate Bill 101 passed the Senate on Wednesday, March 29. It now goes to the House for further discussion.