We are working to secure more funding for a cure, support community-based programs for people living with epilepsy, eradicate stigma and discrimination, and protect patient access to medications and treatment.
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Here are the three issues on which we focus our advocacy efforts:
- Secure Greater Funding for a Cure, Better Treatments and Programs
- Improve Access to Medical Care and Treatment
- Stop Stigma and Discrimination Against People with Epilepsy
Legislative and Regulatory Priorities for the 113th Congress
The Epilepsy Foundation will focus on promoting legislation that positively impacts the lives of people with epilepsy and will work collaboratively with Congress, the federal agencies and the White House to implement laws and policies that promote programs that benefit people with epilepsy, provide access to all needed treatment and care, and effectively eliminate discrimination against people with epilepsy.
Legislative & Regulatory Priorities:
Funding for Epilepsy Programs, Research, & a Cure
The Foundation will work with Congress and the White House to support a strong fiscal environment that provides a safety net of programs for people with epilepsy and related conditions. This will be accomplished by reaching out to federal agency personnel, the Office of Management and Budget (OMB) staff at the White House, Congressional Budget Committee Members, and Congressional Appropriators. Our top priority programs for funding increases are:
- Epilepsy research at the National Institutes of Health
- Epilepsy Programs at the Centers for Disease Control and Prevention (CDC)
- Research in the Food and Drug Administration (FDA) and other agencies that include studies on the safety and efficacy of antiepilepsy drugs (AEDs), including bioequivalence research
Access to Care
- Support reauthorization of the Prescription Drug User Fee Act (PDUFA)
- Support the MODDERN CURES legislation – seeking to modernize the drug and diagnostics evaluation and regulatory network (MODDERN) and encourage the development of new, more targeted treatments.
- Ensure the needs of people with epilepsy are met in implementing insurance reforms under the Affordable Care Act.
- Advocate for reasonable access to affordable and quality epilepsy care and treatments in public and private health insurance.
- Support protections that prevent discrimination based on health status in all insurance products, including any provisions that limit access or coverage for pre-existing conditions like epilepsy.
- Support meaningful patient and epilepsy health professional engagement in comparative effectiveness research through the Agency for Healthcare Research & Quality (AHRQ) and the Patient Centered Outcomes Research Institute (PCORI).
Awareness & Ending Discrimination
- Advocate for epilepsy-specific legislation aimed at public awareness about epilepsy and seizures
- Prohibit the use of restraints and seclusion for children with epilepsy in the school setting
- Promote employment opportunities for people with epilepsy including efforts to reauthorize the Rehabilitation Act of 1973 and Workforce Investment Act
- Support reauthorization of the Developmental Disabilities Assistance and Bill of Rights Act.
- Support full implementation of the ADA and other civil rights laws that protect the rights of people with epilepsy
- Support effective enforcement of the Individuals with Disabilities Education Act and the Elementary and Secondary Education Act including full funding for these programs
Note – The Epilepsy Foundation will remain fluid and responsive to new legislation and issues brought forward by Congress and the Administration.
New legislation is reviewed in accordance with policy in the 2013 Government Affairs statement.
Approved by the Board of Directors, November 2012.