10 / 02 / 2019
  - 06:05:20 AM
PANS/PANDAS Awareness Day
  

Come join patients, families, and health care professionals at the State House as we come together to raise awareness and spread understanding of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). PANDAS/PANS occur when an infection such as strep throat or another infection triggers a misdirected immune response in a child’s body resulting in inflammation of the brain. As a result, some children exhibit life changing and often debilitating psychiatric symptoms that may include Obsessive Compulsive Disorder (OCD), severe anxiety, tics or other abnormal involuntary movements, personality changes, depression, behavior changes, restrictive eating, and more. This illness is devastating to children and their families physically and emotionally, when a seemingly healthy child suddenly becomes ill. While the symptoms alone are disruptive and at times debilitating, obtaining proper treatment is often difficult and financially burdensome. It is common for health insurance companies to deny coverage for life-saving immunotherapy treatments that are often necessary to reset the child’s immune system so they can return to normal everyday life. 

Massachusetts is poised to take an admirable step to minimize the impact of this disease through legislation petitioned by Representative Paul Brodeur and Senator Jason Lewis, An Act Relative to Insurance Coverage for PANS/PANDAS, H920/S613. This legislation would ensure that a full range of treatment options are widely available based on the clinal judgement of the health care providers who serve them, and not the insurance companies.

In honor of PANDAS Awareness Day, the MA Coalition for PANDAS/PANS Legislation together with the New England PANS/PANDAS Association, are hosting an event at the Massachusetts State House on October, 10, 2019. The event seeks to raise awareness of PANS/PANDAS disease and share the impact of this important legislation. The event will feature presentations by medical experts including retired Chief of Pediatrics & Developmental Neuroscience for the National Institute of Mental Health, Dr. Susan Swedo, as well as the Chief of Infectious Disease at Massachusetts General Hospital, Dr. Mark Pasternak. Additionally, PANDAS expert and medical director for New England PANS/PANDA Association Margaret (Peggy) Chapman, APRN, BC will join Dr. Melissa McCormack, pediatrician and PANDAS treatment provider. 

Together we can make a difference! We need your help on October 10th to showour legislature that the Commonwealth supports this life saving bill for our children! Five other states have passed this legislation, let’s make Massachusetts #6! 

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