Epilepsy California was created through the collaborative efforts of the three Epilepsy Foundations in California. The active founding members of Epilepsy California include the Epilepsy Foundations of San Diego County and the Epilepsy Foundation of Greater Los Angeles.
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.
SB 161 – Diastat Bill
Epilepsy California has been advocating within the California State Legislature to ensure that school children with epilepsy have access to Diastat in the event of a seizure emergency. Many children throughout the state have been denied access to this life-saving drug or denied access to their appropriate educational setting due to misinterpretations of state and federal law. SB 161 (Huff) would authorize trained non-medical, volunteer school employees to administer Diastat in situations where a nurse is not immediately available. As many in our epilepsy community already know, Diastat is a very safe and easy to use medication. It is approved by the FDA for use by non-medical caregivers such as parents, teachers and other lay people.
Update: On Friday, October 7th, California Governor Jerry Brown’s signed California Senate Bill 161 into law! The bill authorizes volunteer, trained, non-medical personnel in schools to administer emergency medication to students with epilepsy suffering from prolonged seizures. “This is significant progress for the epilepsy community,” said Ann Kinkor, State Advocacy Coordinator for Epilepsy California, “This legislation will help save lives and reduce unnecessary medical risks for children with epilepsy in California schools.” Appropriate emergency intervention at school, such as access to life saving medications like Diastat, is extremely time-sensitive because prolonged seizures can have devastating results including brain injury and death. Epilepsy California, comprised of the three California Epilepsy Foundation affiliates, worked extensively over the past two years with the bill’s sponsor, Senator Bob Huff, and other legislators to help pass the bill. Thousands of parent and friend advocates joined with Epilepsy California and partner organizations, like the Epilepsy Alliance of Orange County, to help see this bill to the end. This would not have happened without the large show of support from the community. Ms. Kinkor, who has three children with epilepsy, thanked officials directly, “First and foremost, we thank Senator Huff for sponsoring this important bill. We also thank Senator Rubio, Senator Lowenthal, Assembly Member Ma, Assembly Member Gatto, Assembly Member Brownley, and Assembly Member Hall for their support.” This issue is not singular to California. The Epilepsy Foundation is aware of multiple situations nationwide where people with epilepsy who are prescribed Diastat have been denied access to school daycare, or school-related activities. With the passage of this law, children in California now have the right to participate in free, appropriate public education in the least restrictive environment. “It’s crucially important to be able to administer appropriate emergency care quickly to anyone suffering an epileptic seizure,” says Dr. Raman Sankar, Professional Advisory Board member of the Epilepsy Foundation of Greater Los Angeles and Chief of Pediatric Neurology at UCLA. “A prolonged seizure that is not treated appropriately and in a rapid manner can result in brain injury,” says Dr. Arthur Partikian, Professional Advisory Board member of the Epilepsy Foundation of Greater Los Angeles and Director of Pediatric Neurology at USC, “and that is why this bill was so important for our children.” To join Epilepsy California and stay updated on advocacy activities in the state, please email your name, email, and home address (with zip code) to RHalliwell@End-Epilepsy.org.
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.
Epilepsy California would love to hear from you. Please feel free to contact Epilepsy California by email or contact your local Epilepsy Foundation affiliate listed below.
2055 El Cajon Blvd. San Diego, CA 92104 (p) 619.296.0161 (f) 619.296.0802 www.epilepsysandiego.org Kathy West, Executive Director Email
SOURCE: WORLD HEALTH ORGANIZATION