ELC Policy Agenda

The Epilepsy Leadership Council (ELC) is a coalition of more than 60 professional societies, patient advocacy organizations, and governmental agencies working together to improve the lives of people living with the epilepsies, seizures and related disorders (epilepsy). The ELC was created in response to the 2012 Institute of Medicine Report, Epilepsy Across the Spectrum: Promoting Health and Understanding. 

The nonprofit members of the ELC support the policies outlined below that will increase awareness and reduce stigma and discrimination; fuel research and innovation leading to better treatments and ultimately, a cure; improve surveillance, data collection and prevention activities; and improve access to care. In all areas, ELC supports policies that will reduce health disparities and promote health equity in the epilepsy community. 

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: 

• Education and awareness of the epilepsies to reduce the stigma associated with epilepsy including by increasing membership in the Congressional Epilepsy Caucus. 
• Increased funding for the Center for Disease Control and Prevention's (CDC’s) Epilepsy Program, which has surveillance and data collection efforts and implements public health research and prevention activities to improve the health and well-being of people with epilepsy.
• Protection and enforcement of rights for people with the epilepsies, including through the American with Disabilities Act and other civil rights laws related to accessibility, education, employment, transportation and non-discrimination in health care. 

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 access to high-quality, comprehensive health coverage and protecting private and government health programs vital to people with epilepsy including but not limited to Medicaid, the Children’s Health Insurance Program (CHIP), Medicare, TRICARE, the VA, and the patient protections required by the Affordable Care Act. 
• Increased funding for the VA Epilepsy Centers of Excellence (ECoE), a national network of treatment centers that provides specialty care and state-of-the-art diagnostic and therapeutic services to our nation’s veterans with epilepsy and seizure disorders, as well as outreach, education, and research.
• Public and private payers to remove insurance barriers related to step therapy, quantity limits, burdensome prior authorization requirements, narrow networks, and other barriers that delay or impede access to the services and treatments necessary to diagnose and treat epilepsy and its co-morbidities. 
• Care models that address geographic barriers to care, including maintaining expanded access to care via telehealth and non-emergency medical transportation. 
• Access to the full range of FDA-approved treatments used for epilepsy including by maintaining Medicare’s Six Protected Classes Policy. 

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 but not limited to: expediting diagnosis; preventing epilepsy and its progression; improving treatment options—particularly for those with few or no effective treatments; understanding and preventing adverse effects of epilepsy including Sudden Unexpected Death in Epilepsy (SUDEP); understanding and treating common comorbidities of epilepsy such as mental health challenges; improving quality of life for affected individuals and their caregivers; and advancing toward a cure for the epilepsies.  In general, ELC advocates for funding for research that aligns with the research benchmarks discussed during the NINDS Curing the Epilepsies meeting. 

ELC advocates for: 

• Increased funding for epilepsy-related research at federal agencies and programs, including but not limited to programs at the National Institutes of Health (NIH), Department of Defense Congressionally-Directed Medical Research Programs (CDMRP), and the Department of Veterans Affairs (VA).
• Continued activities of ICARE, the Interagency Collaborative to Advance Research in Epilepsy, which seeks to coordinate research activities at the NIH, other federal agencies, and the research and patient advocacy communities. 
• Research to support and develop well-designed, scientifically rigorous, controlled research trials on any cannabis-based products that have potential to have positive benefits in the treatment of resistant epilepsy.
• Increased funding for the Food and Drug Administration to continue to fuel innovation and increase approved treatment and device options for people with the epilepsies.
• Protection of the Orphan Drug Act to facilitate innovation and development of treatments for the rare epilepsies.
• Policies that support coordination and clinical trials that use patient-important outcomes and endpoints as well as increase the diversity of participants in clinical trials so that trial participants reflect the population of individuals who will receive the treatment. 
• Quality improvement programs and activities that enable people with epilepsy to receive high-quality care from their providers. 

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 the CDC’s Prevention Research Center (PRC) program, which supports implementation of public health and prevention activities to improve the health and well-being of people with epilepsy.
• Expanded national surveillance of the epilepsies, such as data collection through the Behavioral Risk Factor Surveillance System (BRFSS), the National Health Interview survey, the National Survey of Children’s Health and the National Neurological Conditions Surveillance System. 
• Funding for data modernization efforts at the CDC to improve our nation’s public health data infrastructure.