Legislative Advocacy
Advocacy Priorities for the 118th Congress
Our Policy Agenda 2023-2025 (118th Congress)
Increasing Awareness of the Epilepsies and Reducing Stigma and Discrimination
Despite it being estimated that more than three million Americans and 65 million people worldwide live with epilepsies, epilepsy is relatively unknown. The lack of awareness has resulted in a disproportionately small percentage of funds being allocated to the epilepsies. There is also significant stigma associated with epilepsy and people with the epilepsies unfortunately face discrimination in many aspects of life including employment, education, and access to healthcare.
ELC advocates for:
- Educational awareness of the epilepsies to reduce the stigma associated with epilepsy including by increasing membership in the Congressional Epilepsy Caucus
- Increased funding for the Centers for Disease Control and Prevention’s (CDC’s) Epilepsy Program to support capacity-building programs for state health departments, health research and prevention activities
Access to Care
People with the epilepsies need access to affordable and comprehensive health insurance coverage and needed medical care in a timely manner. Accordingly, the ELC opposes all barriers that impede access to care to epileptologists and epilepsy centers and the diagnostic tools, drugs, devices, surgeries and other treatments they recommend for epilepsy and its co-morbidities.
ELC advocates for:
- Improved Medicare access to neurologists, surgeons, and other treatments they recommend for epilepsy and its co-morbidities
- Improved Medicaid access to care that ensures access to epileptologists and epilepsy centers
- Improved access to medically necessary specialty care under CHIP, Medicare, TRICARE, VA, and ACA protections
- Increased funding for VA Epilepsy Centers of Excellence (ECoE) to provide specialized diagnostic and therapeutic services
Research and Innovation in Epilepsy
Given its prevalence and significant impact on their daily lives, children and adults with epilepsy and their caregivers deserve epilepsy research to be prioritized by the federal government. ELC advocates for more research and innovation in epilepsy to advance basic science, translational, and clinical research that fuels many important areas including: expediting diagnosis; preventing epilepsy and its progression; improving treatment options; understanding and preventing adverse effects including SUDEP; understanding and treating common comorbidities; improving quality of life; and advancing toward a cure.
ELC advocates for:
- Increased funding for epilepsy-related research at federal agencies including NIH, DoD CDMRP, and VA
- Continued commitment to CARE (Congressionally-Directed Advance Research in Epilepsy) to coordinate research activities
- Increased funding for FDA to fuel innovation and expedite review and treatment approval
- Research funding that aligns with benchmarks from NINDS Curing the Epilepsies meetings
Surveillance, Data Collection and Prevention Activities
Expanded surveillance and prevention activities will improve the health and well-being of people with the epilepsies and their families. ELC encourages all stakeholders – federal and state governments, epilepsy provider data collection efforts including learning health systems, and patient advocacy organizations – to work together to achieve better understanding of the incidence and prevalence of the epilepsies, and the causes of and effective treatments for the epilepsies and their co-morbidities.
ELC advocates for:
- Increased funding for CDC’s Prevention Research Center (PRC) program to support implementation of health and prevention activities
- Expanded implementation of epilepsy-related systems including National Health Interview Survey and National Survey of Children’s Health
- Funding for data modernization efforts at CDC to improve data collection methods
Ways To Get Involved
Here’s a list of our current legislative priorities.
Patient Advocacy Groups
This federal initiative increases NIH funding for epilepsy research and expands clinical trial infrastructure. By accelerating treatment innovation and diagnostic development, we move closer to improved therapies and ultimately, a cure.
CURE Epilepsy Research Act
This legislation improves insurance coverage under Medicaid and Medicare, expands specialized epilepsy centers nationwide, and reduces barriers like prior authorization that delay essential medications and specialist care.
Access to Care Initiative
This initiative funds seizure first aid training in schools and workplaces, supports public awareness campaigns, and provides resources for healthcare providers to better serve and respond to the epilepsy community.
Access to Care Initiative
This initiative funds seizure first aid training in schools and workplaces, supports public awareness campaigns, and provides resources for healthcare providers to better serve and respond to the epilepsy community.
Access to Care Initiative
This initiative funds seizure first aid training in schools and workplaces, supports public awareness campaigns, and provides resources for healthcare providers to better serve and respond to the epilepsy community.
Access to Care Initiative
This initiative funds seizure first aid training in schools and workplaces, supports public awareness campaigns, and provides resources for healthcare providers to better serve and respond to the epilepsy community.
Epilepsy Caucus Toolkit
Get Started with the Toolkit
Advocating for members of Congress to join the Congressional Epilepsy Caucus
A robust Congressional Epilepsy Caucus is key to achieving so many of our advocacy goals so we hope that all ELC members will take action to build the Caucus membership. This toolkit has everything you need to get started – an FAQ, tips and tricks for requesting and holding meetings with Congressional staff, sample emails and action alerts, etc.
Click here to get free access to the toolkit.
Share this Congressional Epilepsy Caucus Position Paper (as of October 2024) at the end of your visit or as a follow up.
Tell us about your planned outreach and how we can help by completing this short form.
Learn more about federal advocacy by viewing the Advocacy Webinar Series.