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Young Pushes for PANDAS Coverage Legislation

The bill seeks to help families whose children suffer from the neurologically-damaging disorder
April 20, 2021
Bob Young News

Today, State Rep. Bob Young (R-Green) gave his first sponsor testimony on legislation he introduced under House Bill 189, which requires insurers and Medicaid to cover the PANDAS and PANS. The onset of the disorders or syndrome typically begins with children between the ages of 3-12. Young spoke to the legislation during the House Health Committee.

“As legislators, we are all here to serve and do good work,” said Young. “This is an opportunity to help Ohio children and families. Please do not let Ohio fall behind other states concerning insurance coverage for PANDAS. Also, passing HB 189 will designate Oct. 9th as ‘PANDAS and PANS Awareness Day’ in Ohio to hopefully shed light on this syndrome.”

The childhood disorder, most commonly known as PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections or PANS: Pediatric Acute-Onset Neuropsychiatric Syndrome, affects approximately 1 in every 200 children each year.

During the hearing, while Young acknowledged multiple treatments are available, years’ worth of health payments only hurt families and the children with the eventual diagnoses.

“As many of the parents you will hear from can attest, getting to the right diagnosis can take years. Thus, families are stuck going down end roads, trying medications and therapies for the symptoms of PANDAS only to have the side effects of those create worse havoc on their bodies and minds. And all the while, the root of the problem is simply growing worse. My belief is the long-term cost is much greater to insurance companies and society having these children go untreated,” Young added.

Young outlined his objectives within the bill as follows:

1.       Requires health insurers in the state of Ohio to cover medical treatments/procedures for children with PANDAS/PANS, considering the patient’s quality of life (short- and long-term) in order to provide the most effective and expedient pathway to providing lasting remission for these patients. This includes:

  • a.          Diagnoses clinically made by pediatricians, family doctors, psychiatrists, rheumatologists, internists, immunologists, and others, will be acknowledged.
  • b.      Treatments covered are to be based on clinical best practices and current research, as practiced by recognized national condition experts and centers of excellence. Most treatment modalities outlined in medical literature for PANDAS/PANS include, but are not limited to, anti-microbials, anti-inflammatories, steroids, IVIG, plasmapheresis, and immune-related medications, as determined by the severity of the case.
  • c.     Timely authorization for treatment coverage is critically needed. A standardized, fast-path, minimally burdensome prior authorization process should be established. The protracted denial and appeal process of insurance coverage delays treatment, and it puts children at risk of further decline and potential long-term disability.

2.       Creates an annual PANDAS/PANS awareness day to be recognized by the state of Ohio.

Currently, House Bill 189 has five cosponsors, including bipartisan support. Today was the first hearing for the bill, and it now awaits further action within the House Health Committee.