Advocacy in Epilepsy
At Epilepsy Alliance Louisiana, our vision is to create a world where epilepsy does not inhibit people from reaching their full potential.
Why Advocacy Matters:
Advocacy plays a crucial role in turning this vision into reality. Through raising awareness, advocating for policy improvements, and amplifying the voices of those living with epilepsy, we work to build a more inclusive and supportive world for individuals and families impacted by epilepsy.
Legislation Championed by Epilepsy Alliance Louisiana
Seizure Safety in Louisiana Schools
HB 914 was sponsored by Rep. Raymond Crews and Sen. Franklin Foil and was passed in 2022. It allows for children with epilepsy and seizures to have a seizure action plan at school, and it requires bi-annual training for all school personnel working with children with epilepsy and seizures (including school nurses and bus drivers).
Police Training and Epilepsy Designation
SB 236 was sponsored by Sen. Franklin Foil and Rep. Tehmi Chassion and was passed in 2024. It requires law enforcement to be trained in Seizure First Aid and Safety and will allow people with epilepsy to include a seizure designation on their driver's licenses or ID cards. This designation is intended to help law enforcement or other first responders better assist people with epilepsy. The designation can be removed at any time.
How does EAL support individuals?
Epilepsy Alliance Louisiana supports individuals and families in advocating for themself or children related to issues at school, work, and in the community. Our team is here to provide guidance and support to ensure that those living with epilepsy have access to the resources and accommodations they need.
If you have any questions about advocating for yourself or someone you care for, please contact our Client Services Team.
State Level Advocacy Efforts
In addition to the legislation mentioned above, Epilepsy Alliance Louisiana (EAL) actively engages in state-level advocacy by providing oral and written testimony and sign-on support for policies and legislation that improve the lives of people with epilepsy. Some of our recent efforts include:
- Updates to the LDOE School Nurses Handbook
- Step Therapy Reform Act – 2023
- PBM Reform – 2024
Our Executive Director, Amanda Mitchell, wrote an opinion editorial in support of Senator Jimmy Harris's SB 347, a bill aimed at requiring Pharmacy Benefit Managers (PBMs) to share savings with Louisiana patients. The letter was featured on NOLA.com, and you can read it below.
