PANS/PANDAS Bill Becomes Law as Advocates Now Seek Advisory Council

Leadership in the California Coalition for PANS/PANDAS was more than thrilled to find out that Gov. Gavin Newsom signed AB2105 into law, which as of the first of the year, went into effect and allows for medical insurance coverage for a condition that can be devastating to children and their family. Assemblyman Josh Lowenthal led the way on the bill being signed into law – including seeing the first version of the bill vetoed by Gov. Newsom and the second version signed into law on Sept. 28, 2024.

While it took a lot of work for California to become the 12th state in the country to enact health equity legislation for PANS/PANDAS, now it’s going to the next level – getting state agencies, medical and mental health professionals and educators, to be well informed and assist in getting the right care for those struck by it.

California Coalition for PANS/PANDAS will be working with National PANDAS + PANS Youth Alliance to have the state authorize a 22-member advisory council on Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal Infections (PANDAS). They’re seeking support for it in the state legislature.

Their mission will be to advise the Governor, the Department of Education, the Secretary of Health and Human Services and the General Assembly on research, diagnosis, treatment and education relating to the condition that can be devastating for children and teenagers and for their families and teachers. Many of these children have been misdiagnosed with dire consequences from the brain inflammation caused by PANS/PANDAS; which is why 12 states have enacted similar legislation and a dozen other states have seen similar bills introduced for this year.

The bill will set out requirements and membership terms at two years. It requires convening the first meeting of the council by October 1, 2025. This council is expected to play a vital role in advising the Department of Health, the General Assembly and the Department of Education on research, diagnosis, treatment and educational issues related to PANS/PANDAS. Twelve states have already established similar advisory councils and implementing this bill will not impose any costs on the state, according to California Coalition for PANS/PANDAS.

Other states have advisory councils in place to raise awareness and improve treatment for those living with PANS/PANDAS. These advocates have been very concerned that physicians, neurologists and psychologists have been misinformed, which will be conveyed in their diagnosis and treatment.

Youth Alliance Humanizes Story

For April Ronay and Shari Strulson, who are both very active in the coalition – while also being mothers of sons living with PANS/PANDAS and teachers, getting the bill into law and taking it to the next level has been demanding and thrilling.

The biggest challenge is getting professionals in pediatric medical care, mental health services and resources, to be well informed on PANS/PANDAS – and to assist in making sure accurate diagnosis is performed and available resources are tapped into. One of the ways they see this happening effectively is through their working relationship with National PANDAS + PANS Youth Alliance.

These are young people who’ve been living with PANS/PANDAS for several years. Some were recognized and diagnosed early in their lives, which gets them on the right medication and treatment and will arrest the worsening conditions. Some were misdiagnosed or had their care dragged out for long periods, which has led to developments such as dramatic changes in personality displayed as obsessive-compulsive disorder (OCD), anxiety, tics or other abnormal movements, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more, according to PANDAS Network.

If you go visit the National PANDAS + PANS Youth Alliance’s Instagram page, you’ll get to learn about some of their powerful stories. Paige Thonus, who lives in Chicago and has been involved in organizing the alliance – and who wants to become a child psychologist – eloquently describes what she’s lived through and why she’s been active.

‘After overcoming my own struggle with PANS, I saw that so many kids slipped through the cracks or struggled to get the treatments they needed. I made it my mission to fight for them because so many people fought for my diagnosis and treatment. Kids should get to live beautiful lives, free from this illness,’ Thonus posted on Instagram.

“These young people are going to share about their emergence from a nightmare,” Strulson said. “They have powerful stories – such as having been placed in a psychiatric hospital and now going to Dartmouth.”

On September 28, 2024, California became the 12th state to enact health equity legislation for PANS/PANDAS, joining eleven other states: Arkansas, Colorado, Delaware, Illinois, Indiana, Massachusetts, Maryland, Minnesota, New Hampshire, Oregon and Rhode Island.

Strulson and Ronay said that even though it’s taken a long time for California to get on that list of states, other states have been inspired by what California has done. It looks like it’s helping to move the legislation forward in several other states – which can happen with other legislative and public policy issues as well.

Getting medical groups to clearly understand the condition and make accurate assessments of the best treatment pathways is requiring a lot of effort, they say.

A statement on this issue by the American Academy of Pediatrics shows that awareness is starting to increase: “While evidence is sparse regarding the causes and treatments of PANS, the symptoms and severity of the condition are very real and painful for families seeking care.”

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