CNS Legislative Committee MEETING MINUTES - Wednesday, July 2, 2025

California Neurology Society CNS • July 9, 2025

Concussion awareness, CTE prevention, and epilepsy-related issues, with an emphasis on youth sports safety and transportation access for adults with epilepsy

Wilson Football on grass

Quick recap

The meeting covered various topics related to the California Neurology Society, including board changes, legislative priorities, and advocacy efforts. Discussions focused on creating educational materials and legislation for concussion awareness, CTE prevention, and epilepsy-related issues, with an emphasis on youth sports safety and transportation access for adults with epilepsy. The group also addressed organizational matters such as developing a code of conduct, planning future meetings, and coordinating with other medical associations to strengthen their advocacy efforts.


Summary

Steve Holtz's Resignation and Code of Conduct

Stella and Selim discussed Steve Holtz's resignation from the CNS Board, expressing sadness and agreeing to organize a celebration for him. They considered hosting the event in person but noted logistical challenges. Stella emphasized the importance of a code of conduct to foster inclusivity and improve the organization's image. Selim shared his experience as a legislative advocate and highlighted the impact of CNS's conduct on his professional interactions.


Transportation Access Resolution Status

Stella presented the status of a resolution on expanding transportation access for adults with epilepsy, highlighting the support received from various medical organizations and districts, with only one opposition and two requests for information. Selim suggested creating a consolidated support letter with logos from endorsing organizations to strengthen their case, and Stella explained that the resolution would undergo lobbyist analysis before adoption by CMA. Stella also mentioned the need for Natalia and Selim to assist in addressing potential critiques from lobbyists during the analysis phase.


Youth Football and CTE Education

Selim presented on youth tackle football and concussion/CTE education, sharing resources about current laws and practices. He discussed concerns about separating CTE education from concussion education in legislation and proposed creating a simple fact sheet for CTE information instead of producing a separate video. Stella suggested targeting schools and directly reaching children with CTE education, as the current focus is on youth sports organizations.


Child Brain Development Awareness Video

The group discussed creating a video to educate children about brain development and concussion risks, with Stella outlining three key messages: the brain continues developing until age 25, concussions and repetitive impacts can cause long-term problems, and school performance affects future life outcomes. Selim presented a template for amending existing concussion legislation in California, which the group agreed could serve as a foundation for their efforts. The team decided to first test their video approach by showing it to local schools before pursuing legislative changes, while also planning to research and connect with stakeholders who supported previous concussion legislation from 2012.


CTE Legislation and Youth Sports

The group discusses how to include Chronic Traumatic Encephalopathy (CTE) in legislation alongside concussion and head injury education for youth sports. They consider targeting not just coaches but also athletes and parents with information sheets. Selim raises concerns about singling out CTE, but Steven assures that CTE's high public profile justifies its specific inclusion. The group also debates whether to focus on public schools, private organizations, or both, and considers contacting the American Academy of Neurology for existing guidelines on the matter.


CTE Position Statement Development

The group discussed the need to create a clear and accessible position statement about chronic traumatic encephalopathy (CTE), emphasizing its development over time through repetitive head trauma. Stella and Steven agreed to focus on explaining how symptoms can emerge years after the initial injury, using layman's terms to avoid technical jargon. Johanna suggested creating a one-page summary for the California Neurology Society's website and linking it to ongoing legislative efforts, such as the helmet bill introduced by Assemblyman Valencia. Stella planned to use a recent article as a reference to draft the summary, while Selim highlighted the importance of translating complex information into legislative text to support advocacy efforts.


Football Fatality and Neck Safety

The group discussed a tragic incident where a high school football player died after being kicked under the chin, which led to a discussion about the importance of documenting such cases with supporting evidence like news reports or witness statements. They agreed to seek out a parent or sibling of the deceased player to provide testimony, with Selim suggesting they could find willing participants through concussion organizations. The conversation touched on the broader issue of neck muscle strength and its role in preventing such injuries, with Stella suggesting that weak neck muscles could contribute to whiplash during head impacts.


Youth Football Concussion Safety Legislation

Selim outlined his plan to prepare legislation for youth tackle football and concussion safety, which includes collecting resources, drafting legislation, and building a coalition of supporting organizations. He emphasized the need for clear goals and information to effectively approach legislators and other stakeholders. Stella suggested working on both national and local levels, while Johanna highlighted the importance of being prepared well in advance of legislative deadlines to avoid delays caused by new legislators.


CTE Education Legislation Planning

The group discussed legislation related to CTE awareness and education, focusing on youth football players and their families. Stella emphasized the importance of starting education early, around age 5 or 6, while Robert suggested framing the legislation as protecting football itself from stigma. The team agreed to target all age groups from early childhood through high school, with Selim tasked to prepare draft legislation by February for a year-and-a-half deadline.


Neurology Advocacy and Legislative Priorities

The group discussed several key issues facing neurologists and patients, with Joanna proposing three major legislative priorities over the next year and a half: one for patients, one for doctors, and potentially a third issue. Stella emphasized the need to support neurologists through advocacy and suggested inviting an AI practice guide to speak at a future meeting. The group also discussed challenges with electronic medical records, particularly for neurologists, and Joanna proposed legislation related to urban planning and public health to reduce the likelihood of neurologic diseases. Steven and Stella agreed that fighting Medicare prior authorizations would be a more effective advocacy strategy than focusing on insurance company spending transparency, as it directly impacts patient care and resonates with legislators.


Legislative Planning and AAN Relations

The group discussed legislative updates and the need to file bills by February 21st, 2027. They agreed to pursue legislation on epilepsy, transportation, and other neurology-related issues. Steven, who was planning to retire, agreed to continue helping the organization’s legislative efforts, particularly with its relationship to the AAN. The group also touched on the need for a code of conduct and Stella's role as liaison to the AAN.

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Quick recap The team discussed the financial implications of transportation for people with epilepsy and proposed potential solutions, including allocating a dollar from truck registration towards retraining or local transportation budgets. They also discussed healthcare policies, particularly a bill aiming to align the standards of administering life-saving medicines to people with seizures in adult day centers with FDA standards. Lastly, they discussed the risks of head injuries in children playing tackle football and the potential for introducing a bill to raise awareness about the impact of head injuries on children's brain development. Next steps Selim to send conference information to Sean Porter. Selim to create or coordinate creation of a formal invitation for the legislative reception on May 1st. Johanna to contact Sean Porter about potential legislation sponsorship and discuss the epilepsy transportation issue. Stella to write a letter to the NFL praising them for flag football and encouraging them to promote safety in youth football. Johanna to resubmit the full CMA resolution documents, ensuring all content fits within the submission guidelines. Selim to contact the Governor's office and healthcare representatives to invite them to speak at the May 1st legislative day. Johanna to attend the CMA legislative day on May 21st, arriving the night before. Jeff to attend the CMA legislative day on May 21st. Legislative team to continue pursuing the head injury bill with potential sponsors. Johanna to follow up with Michelle Rodriguez's office about attending the May 1st reception and potentially meeting with the team. Summaries Transportation Funding for Epilepsy Patients Johanna discussed the financial implications of transportation for people with epilepsy, suggesting that those who cannot drive due to their condition should receive a portion of the taxes paid by those who can drive. She proposed a potential solution of allocating a dollar from the registration of 18-wheeler trucks towards retraining or budget for local transportation departments. Steve agreed with Johanna's points about the funding and taxation system, but expressed concerns about the feasibility of taxing truck drivers due to their strong union. The conversation ended with Stella and Nick joining the conversation. Healthcare Policy Discussion and Support Selim, Dr. Stella Legarda, Dr. Joanna Rosenthal, and Steve Cattolica met with Nick, a legislative representative, to discuss healthcare policies. They expressed support for a bill, Assembly Bill 369, which aims to align the standards of who can administer life-saving medicines to people with seizures in adult day centers with FDA standards. They also discussed the possibility of Nick's office giving a talk about the bill at their upcoming conference in Sacramento. Additionally, they mentioned a previous bill, the Levine Bill, which they supported and was recently passed. Addressing Tackle Football Risks in Children Johanna and Stella discussed the risks of head injuries in children playing tackle football, particularly in the developing brain. They mentioned a bill that partially went through last year, which required parents to sign a waiver acknowledging the risks. They also discussed a study by Boston University's CTE Center, which found that 100% of professional football players under 30 had chronic traumatic encephalopathy (CTE). Stella suggested that the National Football League should prioritize long-term brain health in children and proposed a joint resolution between the House and Senate to create an age limit for tackle football, similar to other contact sports. Addressing Head Injuries and Epilepsy In the meeting, Johanna, Stella, and Nick discussed the possibility of introducing a bill to raise awareness about the impact of head injuries on children's brain development and the subsequent challenges faced by those affected. They agreed that the bill should be the primary focus, with a resolution as a fallback option. Nick committed to discussing the idea with his team and superiors, acknowledging the challenge of securing funding in the current budget deficit. The team also discussed the potential for job training programs and transportation assistance for individuals with epilepsy who lose their driver's licenses. The conversation ended with the understanding that the issue is underserved and needs to be addressed. Bill Language and Legislative Session Nick agreed to follow up on the ideas discussed with his team and send the bill language to Stella for support. Johanna reminded Nick of a February 21st deadline for new legislation and asked about the number of bills his department was sponsoring. Nick clarified that they were limited due to the shortened session and the new member's role. Johanna proposed an invitation for Nick's department to attend the legislative session on May 1st and visit the office in the Capitol. Nick agreed to this and provided Selim with the scheduler's email. Steve expressed his appreciation for the bill and the progress it aimed to achieve. State Funding and Project Income Johanna and Stella discussed the challenges of generating income for their projects and the need to approach the state for funding. They also discussed their interactions with the Principal Consultant on the Senate Transportation Committee, Melissa White, who advised them against asking for money, suggesting instead to extend the service to the population. Johanna expressed her belief that they could find a workaround and generate income from the state, while Stella emphasized the importance of presenting their goals clearly and avoiding the perception of asking for extra money. They agreed to continue their efforts and to invite the legislative assistant to a meeting to further discuss their plans. Youth Sports Concussion Prevention Efforts Stella, Johanna, and Selim discussed the committee's legislative efforts, particularly focusing on concussion prevention in youth sports. They agreed on the need for a joint resolution between the House and the Senate to limit contact sports for under-12s, rather than a bill. They also discussed the potential for using the legislation as a bargaining chip with the NFL. Johanna mentioned that she had sent letters to the NFL and other organizations, and Stella suggested writing a letter to the NFL praising their adoption of flag football. The team also discussed the importance of Selim speaking up in meetings, as he has a strong understanding of the legislative process. Lastly, they planned to invite representatives from the Governor's office to their upcoming legislative day. Epilepsy Medication and Transportation Discussion Johanna, Stella, Jeff, and Selim discussed various topics, including epilepsy medication, transportation for epilepsy patients, and potential legislation. Stella mentioned a bill she was involved with last year, which allowed school personnel to administer epilepsy medication to students. Johanna suggested a new approach to claw back some of the money epilepsy patients pay for transportation they can't use. Jeff agreed, stating that it wouldn't cost much for transportation agencies to provide free transportation for epilepsy patients. They also discussed the possibility of bringing the issue to a state level, as opposed to individual municipalities. Selim asked about reaching out to Sean Porter, and Johanna agreed to do so. Lastly, they discussed the upcoming CMA resolutions and the possibility of attending a legislative day on May 21st.
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