OLYMPIA – Imagine for a moment, a young child going to bed one night perfectly happy and healthy, then inexplicably waking up the next day with raging emotions, involuntary obsessive-compulsive disorder, tics, eating restrictions, anxiety, loss of speech, and more.
This is the terrifying experience of families of children with PANDAS/PANS, two rare pediatric neuroinflammatory disorders that can occur when a child’s immune system begins mistakenly attacking the brain, typically in response to an infection.
Treatments for PANDAS/PANS is based on severity, with antibiotics and anti-inflammatories utilized as first line approaches. If those approaches fail, advancement to treatments such as IVIG may be recommended. It is estimated that only 10-20% of those with PANDAS/PANS will require intervention with IVIG. However, insurance often denies IVIG, causing families to go bankrupt as they try to privately pay for treatment or helplessly standby watching their child suffer.
“When my child’s neurologist prescribed IVIG for PANS, we were shocked to learn that IVIG could be denied,” said Brynn Blanchard of Bainbridge. “Families shouldn’t have to delay care, fight through appeals or move to another state like Oregon or California just to access appropriate medical care for a very sick child.”
Sponsored by Rep. Tarra Simmons (D-Bremerton), House Bill 2196 is aimed at filling several gaps in medical coverage in treatment for these disorders.
“I’ve gotten to know some of the families in my district experiencing this,” said Simmons. “People are taking out second mortgages and jeopardizing their careers and marriages to get their kids the treatment they need. Meanwhile, their kids are being expelled from school, ending up in psychiatric care, and placed on a pipeline to prison. We can and should fix this.”
House Bill 2196, a bi-partisan bill, mandates that health care providers cover IVIG treatments once other options have been exhausted.
“Washington Medicaid covers IVIG treatment for PANDAS/PANS once specific criteria have been met,” said Dr. Niran Al-Agba, a board-certified pediatrician who treats PANDAS/PANS patients in Silverdale. “Passing this bill would even the playing field for families with commercial insurance coverage, who presently, must either pay out of pocket or forego this treatment when nothing else has been effective.”
More than a dozen states have already recognized the need for this type of coverage. It’s time to ensure Washington’s children can get the recommended care they deserve.
Public testimony on HB 2196 is being heard virtually and in-person in the House Health Care & Wellness Committee on Friday, January 16 at 8AM.
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