Bill Introduced to Help Children with PANDAS and PANS

Long Beach’s new state assembly representative, Josh Lowenthal, has introduced a bill in Sacramento that would bring medical insurance coverage for patients who have PANDAS or PANS. If passed, this law could increase awareness of a diagnosis affecting children up to 13 years old who are typically misdiagnosed; these inflammatory brain disorders can become chronic or life-threatening conditions when left untreated.

This bill would require a health care service plan contract or health insurance policy that was issued, amended, or renewed on or after Jan. 1, 2024, to provide coverage for treatment of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) prescribed or ordered by a provider.

If passed, Assembly Bill No. 907, introduced on Feb. 14, would block those covered to come up with a copayment, coinsurance, deductible, or other cost sharing that is greater than that applied to other similar benefits. It would also stop a plan or insurer from denying or delaying coverage because that person had previously received treatment for PANDAS or PANS, or has been diagnosed with or received treatment for the condition under a different diagnostic name.

The newly elected Assemblymember represents Long Beach, Signal Hill and Catalina Island’s Avalon, as well as large portions of Carson.

Lowenthal, who was sworn into the assembly in December, comes from a family of elected officials who’ve served in Long Beach. Both his parents, Alan and Bonnie, served in the Assembly. Alan had also been a member of the state Senate and had served in Congress for 10 years before retiring in January.

10 States Joining Diagnosing PANDAS/PANS by Passing Laws

As covered in the Beachcomber in December, 10 states have passed laws requiring health insurance companies to cover treatment costs for PANDAS and PANS. These are treatable neuropsychiatric diseases that can cause devastating effects to the brain.

These infections can cross the blood brain barrier, causing an inflammatory response in the basal ganglia. The basal ganglia manages the signals your brain sends that help you move your muscles.

Children with PANS have a dramatic onset of neuropsychiatric symptoms including obsessive-compulsive disorder (OCD) or an eating disorder; symptoms may include depression, irritability, anxiety and difficulty with schoolwork. Those with PANDAS have an acute onset of neuropsychiatric symptoms, specifically OCD or tics (involuntary, purposeless movements). However, PANDAS patients test positive for a recent streptococcal infection, such as strep throat, perianal strep, or scarlet fever. Like PANS patients, they also may suffer from uncontrollable emotions, irritability, anxiety and loss of academic ability and handwriting skills.

Push for State Coverage

Long Beach resident April Ronay has played a big part in moving this forward, along with other activsts in California PANS/PANDAS Advocacy (CalPans). CalPans is a grass-roots group working to have California adopt proposed legislation where children can be accurately evaluated and diagnosed. Ronay has a son who’s a student at Wilson High School and who had been misdiagnosed years earlier and lived through very difficult effects from the disorder.

CalPans says that the right kind of proposed legislation can mean that 90% of these cases will recover with first-tier treatment, including antimicrobials/NSAIDS/corticosteroids; and that an estimated 10-15% of PANS/PANDAS cases will further require IVIG and other second-tier treatments. Intervenous Immunoglobulin (IVIG) is a therapy treatment for patients with antibody deficiencies. It is prepared from a pool of immunoglobulins (antibodies) from the plasma of thousands of healthy donors.

Ronay said that AB 907 is going through a financial review process. It’s scheduled for review by the Health Committee on March 17. If it clears that health committee, then the bill will be sent to the appropriations committee.

Ronay and CalPans are encouraging Californians to write letters of support for AB 907 and to consider reaching out to family, friends and coworkers to do the same. They’re also known in the state capital as Position Letters.

The Assembly Health Committee has implemented a more efficient way of accepting Position Letters. Those wishing to send in their letters should upload them through the Advocate Portal at https://calegislation.lc.ca.gov/Advocates.

Jon LeSage is a resident of Long Beach and a veteran business media reporter and editor. You can reach him at jtlesage1@yahoo.com.