Lowenthal and Activists Bring Beach Event on PANS/PANDAS

Those attending a public awareness event at the city’s Granada Beach were moved to hear the inspiring – and sometimes tragic – stories about young people who’ve been hit by a medical condition called PANS/PANDAS. On Saturday morning, Sept. 14, Assemblymember Josh Lowenthal and parents from the California Coalition for PANS/PANDAS Advocacy talked about actions being taken to resolve the crisis.

The state bill, AB2105, was led by Lowenthal, who got it through the Assembly earlier this year and worked with the state senate to pass their version of it in late August. Now, they’re waiting for the governor to sign the bill, which was great news for the audience to hear about.

The bill would require a health care service plan contract or health insurance policy issued, amended, or renewed on or after Jan. 1, 2025 to provide coverage for the prophylaxis, diagnosis and treatment of Pediatric Autoimmune Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute Onset Neuropsychiatric Syndrome (PANS). It would have to be prescribed or ordered by the treating physician or surgeon.

Medication used to treat it, such as IVIG, can be very expensive without healthcare insurance coverage and the process can be so lengthy for diagnosis and treatment that the consequences can be devastating for these young people and their families. It usually impacts children up to age 13, but victims of the medical condition could be older than that age.

Susan Newman Manfull, PhD, Founder of The Alex Manfull Fund (TAMF), spoke to attendees about the significant need for public awareness – and educating medical professionals – about the complex and devastating impact of PANS/PANDAS.

Manfull and her husband, William, have made it their life’s work to educate about the disease and to help fund research to find a way to keep future parents from suffering the same heartbreak that they did, which made the creation of TAMF a clear mission for them to carry out. Their daughter, Alexandra “Alex” Manfull, died on Aug. 7, 2018, at the age of 26 from complications of PANDAS.

TAMF has been instrumental in establishing POND Brain Bank at Georgetown University. It’s the world’s only repository solely dedicated to brain tissue from donors diagnosed with PANDAS/PANS and other neuroimmune disorders. The POND Brain Bank was established so that brain tissue would be available for research that will advance clinical understanding of these disorders, according to TAMF.

Waiting to Hear from Governor

In October 2023, Governor Gavin Newsom vetoed an earlier version of the bill, AB907, and other bills that would have increased medical benefits and raised costs for these healthcare insurance providers to fulfill. Concerns were raised that Newsom had received large campaign contributions from a few health insurance companies and was not being open to considering the real impact PANS/PANDAS has had in the lives of young California residents and their families.

Assemblymember Lowenthal’s staff has been in discussions with Gov. Newsom’s staff and with other legislators, about authoring AB2105 to meet the needs of affected patients and healthcare professionals while listening to the concerns of healthcare insurance providers and medical professionals. The Assemblymember has been very hopeful about the bill moving forward this year, Brian Mineghino, a member of the staff for Lowenthal, previously said.

State governing agencies this year have reported minor cost increases for implementing AB2105 if the bill becomes law. The Department of Managed Health Care estimates minor and absorbable costs. The California Department of Insurance estimates one-time costs of $8,000 in 2024-25 for state administration. The Department of Health Care Services anticipates no fiscal impact; and CalPERS does not anticipate a significant fiscal impact.

Audience Cheers for Speakers

Those attending the event on Sept. 14 were able to work on rally T-shirts and posters and to participate in a march championing the efforts to get AB2105 signed by the governor. They enjoyed hearing the speakers and rooting for them.

One of them was actor Harold Perrineau and his daughter Wynter, who was struck with PANS/PANDAS at age three. Perrineau has been known for being one of the leading characters on ABC’s “Lost” series; and he’s now starring in the “From” series on Amazon Prime and other streaming channels. He’s spent much of his time educating the public about the impact PANS/PANDAS is having on children and their families. He was proud to talk about how his daughter has been able to get the treatment she needed. Wynter was just able to participate in a student summer program at Yale University.

Living through it can be hell, she said. “You can have psychotic episodes in the middle of the night,” Wynter Perrineau said.

Lowenthal finished up the speaker presentations acknowledging the city of Long Beach’s tradition of practicing, “compassion in its activism.” He admires parents who’ve gone to Sacramento to testify on the impact of the serious medical condition, which has not been easy for them to do.

“I’m extremely optimistic the governor will sign the bill,” he said.

You can read more about the event and see photos on the Facebook page called CalCoalition for Pans/Pandas Advocacy.

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