Lowenthal Brings Back Pans/Pandas Bill After Governor Vetoes It

Long Beach’s state assembly representative, Josh Lowenthal, earlier this month introduced AB 2105 [Editor Note: Corrected from AB 2015 in the print edition] in Sacramento. It would provide health insurance coverage for an inflammatory brain disorder that can become chronic or life-threatening conditions to children when left untreated – and which is typically misdiagnosed by doctors.

Governor Gavin Newson in October vetoed AB 907, a similar bill that was introduced by Lowenthal and passed by the Assembly and state Senate. It would have provided coverage for the treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) prescribed or ordered by a provider.

If passed and signed by the governor, AB 2105 would increase awareness and treatment of a diagnosis affecting children up to 13 years old who are typically misdiagnosed and incorrectly treated. These inflammatory brain disorders can be devastating for children and their parents, with healthcare insurance failing to cover heavy financial costs to families.

Gov. Newsom’s veto statement said that AB 907 creates a disease-specific mandate, it contains provisions duplicative of existing laws, and it removes the medical necessity requirement. Newsom wrote that the medical necessity requirement is a standard condition for health plans in determining coverage of specific services.

In the month prior to the veto, state Insurance Commissioner Ricardo Lara had written a letter to Gov. Newsom, asking him to sign the bill into law. AB 907 would have ensured that individuals and families who are confronted with these debilitating symptoms and potentially permanent neurological damage would not experience unnecessary delays in treatment that can lead to these disastrous and tragic outcomes.

Some children need stronger immune treatment such as Intravenous Immunoglobulin or IVIg. A typical delay in receiving treatment due to coverage denials from healthcare insurance companies for PANS/PANDAS is usually measured in months, if not years, Lara wrote in the letter.

Gov. Newsom vetoed all of the bills that added mandates to coverage in October. Concern has been expressed in Sacramento that hefty campaign contributions that had been made by UnitedHealth and Blue Shield of California have made the governor biased and more supportive of healthcare insurance companies.

Eleven states in the U.S. provide coverage for PANS/PANDAS medical treatment. California and nine other states are considering PANS/PANDAS legislation this year. These other states are Idaho, Georgia, Maine, Michigan, New York, Pennsylvania, Tennessee, Virginia, and West Virginia.

Working with Supporters

Overturning a governor’s veto is extremely rare in California. Lowenthal and his staff knew that the bill would have to be reintroduced in 2024.

State Senator Lena Gonzalez, a Democrat representing the southeast Los Angeles area including Long Beach and Lakewood, played a key role in getting the first bill through the state legislature last year. Lowenthal worked with Gonzalez on negotiating amendments to the bill as it moved through the legislative process. Gonzalez, who this month was named majority leader of the state senate, will be involved in getting AB 2105 through to the governor this year, as well.

Brian Mineghino, District Director for Assemblymember Lowenthal, is confident that the bill can be worked out in the legislature and approved by the governor.

“We are going to reintroduce the bill and continue to engage Governor Newsom and his staff on this issue. We are hopeful that with continued dialogue and engagement from all stakeholders, the bill will be signed,” Mineghino wrote in an email.

Mineghino says that the Lowenthal team expects Insurance Commissioner Lara to play a supportive role in getting AB 2105 through this year.

What Californians Can Do

Letters of support for California Assembly Bill 2105 can be submitted to the Assembly Health Portal at https://calegislation.lc.ca.gov/Advocates/

CalPans, a grass-roots group that’s working to have California adopt the proposed legislation where children can be accurately evaluated and diagnosed, encourages Californians to visit that website and submit support.

Long Beach resident April Ronay has been very active on gaining this support. Ronay has a son who’s been a student at Wilson High School and who had been misdiagnosed years earlier and lived through very difficult effects from the disorder.

Ronay says that CalPans will probably be testifying in front of the Assembly Health Committee sometime around March 7th.

CalPans and other advocates around the country have been working to educate legislators and the general public about the devastating impact of PANS/PANDAS.

That impact includes parents having to leave work to care for a sick child, eventually having to go on family and medical leave; families could end up selling their homes to pay for the expensive medication; they may also have to move in with family and file for bankruptcy. The children may have been sent by their school into special education services, which would not be necessary if they’d been medically treated properly; or they’ve been kept out of school as their conditions worsened. Lack of medical treatment can cause permanent physical and mental health issues for these kids, meaning that they lose their childhood and take permanent disabilities into adulthood.

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