A partnership between the local Epilepsy Foundations in California
Source: Centers for Disease Control and Prevention
Epilepsy California was created through the collaborative efforts of the Epilepsy Foundations in California.
Epilepsy California is the recognized, unified voice of people with epilepsy throughout California. We are pro-active in developing a statewide epilepsy agenda, and advocate within state government and state agencies for public policy which ensures the rights of people affected by epilepsy to fully participate as contributing members of their communities.
Epilepsy California represents 1 million people in California with epilepsy and their family members. One in every 10 Americans will experience a seizure during his or her lifetime. Every three minutes a new person is diagnosed with epilepsy.
Epilepsy is defined as neurological condition characterized by recurrent seizures and can develop at any stage of life; children and the elderly are particularly affected. Epilepsy can stem from a variety of causes including head trauma, brain tumor, stroke, infection, neurodegenerative disorders including Alzheimer’s disease, genetic predisposition, and poisoning. Epilepsy remains a formidable barrier to leading a normal life by affecting employment, education, and every day life. Even one episode will result in the loss of one’s driver’s license, leading to a loss of transportation that may result in the loss of employment—a situation that is detrimental to a family’s well-being and stability.
On February 6, 2020, Assembly Member Levine, Assembly Member Blanca Rubio, and Senator Umberg introduced the Seizure Safe Schools Act (AB 2116). This bill will improve the care of students with epilepsy in schools by ensuring:
1. Prescribed FDA-approved medications are administered to the student with epilepsy
2. Students have a seizure action plan in their file and that the action plan is properly distributed to any school personnel responsible for the supervision of the students
3. School personnel and students to be trained in seizure recognition and response using the Epilepsy Foundation training materials.
Contact Assembly Member Patrick O’Donnell, Chair, Assembly Education Committee by 5 pm, Monday, March 9.
1. Call the office of Assemblymember O’Donnell at (916) 319-2070. Introduce yourself, communicate your connection to epilepsy, that you are in support of Seizure Safe Schools Act (AB 2116), and ask that this important bill be heard and voted upon in the Assembly Education Committee Hearing on March 18th.
2. Spread the word on social media! Below, please find some suggested messaging for you to copy and paste on Twitter, Facebook, and Instagram.
Twitter: @AsmPatODonnell improve the care of students with epilepsy in California by supporting Seizure Safe Schools Act (AB 2116). #EndEpilepsy #SeizureSafeSchoolsAct
Facebook: Please support #SeizureSafeSchoolsAct @AssemblymemberPatrickODonnell. AB 2116 will improve the care of students with epilepsy and seizures in schools by ensuring the administration of FDA-approved medications prescribed to treat seizures; requiring students to have a seizure action plan in their file and ensuring that the action plan is properly distributed to any school personnel responsible for the supervision of the students; and that school personnel and students to be trained in seizure recognition and response using the Epilepsy Foundation training materials. #EndEpilepsy #SeizureSafeSchoolsAct
Instagram: Please support #SeizureSafeSchoolsAct @asmpatodonnell. AB 2116 will improve the care of students with epilepsy and seizures in schools by ensuring the administration of FDA-approved medications prescribed to treat seizures; requiring students to have a seizure action plan in their file and ensuring that the action plan is properly distributed to any school personnel responsible for the supervision of the students; and that school personnel and students to be trained in seizure recognition and response using the Epilepsy Foundation training materials. #EndEpilepsy #SeizureSafeSchoolsAct
Your voice will continue to be needed – stay informed and updated on next steps. Please sign-up to join us as an advocate.
To learn more about Seizure Safe Schools Act, please visit leginfo.ca.gov.
Access to Epilepsy Medication and Treatment
It is essential for all people with epilepsy to have ready access to quality care that appropriately suits their individual needs. Epilepsy California must ensure a full range of medication and treatment types are available to those that require any level of care.
To help prevent breakthrough seizures, Epilepsy California strongly encourages notification and informed consent of both patient and physicians before changing or replacing a patient’s medication in any way. Antiepileptic drugs (AEDs) are very precise and establish a delicate balance for each individual with epilepsy. Any slight change to medications can cause breakthrough seizures. Because the therapeutic window is often very narrow for people with epilepsy it is critical that each individual have access to the medication that provides the best outcome for them.
Access to Seizure Rescue Medications
Individuals with prolonged or clustered seizures sometimes are prescribed an emergency seizure rescue medication to be administered by a caretaker. Current State laws and regulations are not consistent and prevent children in schools and adults in residential care facilities from receiving the medication. Epilepsy California seeks to work with State education and health groups to develop a life-saving plan that will support our students and our resident adults.
Due to the varied nature of epilepsy, Epilepsy California opposes across-the-board seizure-free requirements, and endorses individualized evaluations of ability to drive. California remains one of six states that currently requires mandatory physician reporting. Epilepsy California will continue to support efforts to change state laws or regulation to reverse mandatory reporting.
Epilepsy California promotes the expansion of civil right laws to ensure that people with epilepsy have essential protections from discrimination based on disability in any part of life, including the workplace.
SOURCE: WORLD HEALTH ORGANIZATION