2008 Government Affairs Statement

Posted: October 2008

Nearly three million children and adults in the United States have epilepsy. Epilepsy is defined as 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. The effects of epilepsy vary widely from individual to individual but may create medical, economic and social hardships. Everyone is at risk of developing seizures or epilepsy.

We, the members of the Board of Directors of the Epilepsy Foundation, representing people with epilepsy and their family members, are therefore committed to an effective advocacy program with the legislative, executive, and judicial branches of the federal government. Our goal is to ensure the provision of and access to essential services, the protection of the rights of individuals with disabilities, and to promote the prevention, cure and optimal treatment of epilepsy. Within these broad goals, we dedicate ourselves to a Government Advocacy Program that addresses the following legislative and regulatory issues.

Budget and Appropriations

• Advocate for federal funding for epilepsy research and public health programs within the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA), including the implementation of government programs and activities to address the goals of the 2nd Living Well with Epilepsy Conference.
• Support increased funding levels for epilepsy research and programs at the National Institutes of Health (NIH), the Department of Defense (DoD) and Veterans Administration (VA). In addition, support increased funding for programs affecting people with epilepsy, including those authorized by the following laws: the Workforce Investment Act Amendments of 1998, the Social Security Act, the Rehabilitation Act Amendments of 1998, the Individuals with Disabilities Education Act, the Developmental Disabilities Act and the Children’s Health Act of 2000.
• Support increased funding for the Food and Drug Administration.

Civil Rights

• Support restoration of the ADA to its original intent (ADA Restoration Act), including the full coverage of people who experience adverse action or who need a reasonable accommodation based upon epilepsy. Promote civil rights laws that ensure that people with epilepsy can count on essential civil rights protections.
• Oppose efforts to weaken civil rights protections, including those contained in the Americans with Disabilities Act, the Family Medical Leave Act and the Rehabilitation Act of 1973, by limiting the scope of the laws or the remedies provided under the laws.
• Support legislation that prohibits discrimination based on genetic information (Genetic Information Nondiscrimination Act).
• Strengthen the Federal hate crimes statute by permitting Federal involvement in prosecution of bias-motivated crimes based on a victim’s disability. Support additional funding for states and localities to assist in prosecution of such crimes.
• Protect the rights of people with epilepsy and other disabilities with regard to voting including, but not limited to, assurances of accessible voting machines and voting places and addressing the issue of photo identification for those who do not have a driver license.
• Support availability of attorney’s fees in civil rights litigation.

Disability/Social Security Benefits

• Promote Social Security policy that removes barriers to returning to work, improves the disability determination process and preserves entitlements and benefits.
• Support the recognition of epilepsy as a related consequence of service connected brain injury, and access of veterans with service connected epilepsy and seizures to disability benefits and services for their condition.

Education

• Support implementation and full funding for the Individuals with Disabilities Education Act of 2004, to ensure that the rights and safety of children with epilepsy remain protected and that their needs are addressed. Work to ensure that the needs of children with epilepsy are addressed through the No Child Left Behind Act (P.L.107-110).
• Support the rights of children with epilepsy and seizures to full inclusion in all educational activities and programs whether or not they need such auxiliary services as access to medication and treatment in order to safely participate in such educational activities.

Employment

• Support the reauthorization of the Workforce Investment Act and the Vocational Rehabilitation Act to ensure that the needs of people with epilepsy are being met. Include vendors with disabilities as a hiring preference within the federal government minority contractor preference program. 
• Support employment policies that restore the ADA to its original goals and purposes; promote the use of the federal government’s purchasing power to increase the employment of people with disabilities in the private sector; dramatically increase the number of people with disabilities employed by the federal government; and change federal policies that keep people with disabilities from full employment.

Epilepsy Medication and Treatment Issues

• Promote policies that provide ready access to all epilepsy medications and treatments. Support policies consistent with the Foundation’s policies on drug formularies and mandatory substitution laws. 
• Support policies encouraging pediatric studies of new drugs and the inclusion of women in clinical trials.
• Seek funding earmarked for training and/or issuance of guidance or rules for first responder agencies that would result in adoption of universal protocols and training requirements for first responders.
• Encourage the federal agencies that oversee access to medication and treatment for epilepsy to research and analyze the issue of continuity of medications for epilepsy, and to develop appropriate standards for ensuring such medications are clinically equivalent.

Epilepsy Research

• Support expanded epilepsy research efforts at the National Institutes of Health, National Institute of Neurological Disorders and Stroke and all agencies that may impact epilepsy, including the National Institute for Nursing Research, the National Institute of Child Health and Human Development, and the coordination of research findings and programs related to epilepsy and the brain within the NIH.
• Expand epilepsy research in psychosocial, mental health, behavioral, cost of care, prevention, women's health, aging and other underserved populations, nursing, educational and rehabilitation areas to address these critical needs.
• Support research within federal agencies such as DoD and the VA on epilepsy and seizures as a result of traumatic brain injury.
• Support government policies that ensure the adequate protection of people in clinical trials and work to require that all clinical trials be posted on www.clinicaltrials.gov, including those whose outcomes may be adverse. Promote open access to research information produced with funding from the federal government.
• Support the humane use of animals for medical research.

Driving Laws

• Support affiliate efforts to change their state laws or regulations to more closely conform to the Foundation/American Epilepsy Society/American Academy of Neurology consensus model law.
• Advocate for improvements to the United States Department of Transportation rules on commercial driving.

Family and Community Support

• Support legislative and regulatory efforts to expand access to respite care and family support programs at the federal and state level.
• Support legislation and funding that would enable states to increase the wages and benefits paid to direct support professionals who provide care to individuals and families with disabilities in community settings.

Health Care

• The Foundation supports a universal health care system that ensures the availability of and access to appropriate and affordable health care for all children and adults with epilepsy, including easy access to specialty care and all available treatments.
• Promote health care reforms that are consistent with the Foundation’s Health Care Reform Principles, Medicare Reform Principles and Consumer Protection Principles.
• Support efforts to expand health care coverage to the uninsured, including such methods as expansion of programs such as SCHIP, employer mandates and targeted Medicaid expansions that are beneficial to people with epilepsy.
• Ensure that people with epilepsy are protected by all state and federal laws designed to ensure nondiscriminatory access to insurance and health benefits. 
• Oppose efforts to reform Medicaid that limit the entitlements to such insurance or restrict the scope of services.
• Oppose efforts to cut Medicaid benefits and services to people with epilepsy and related conditions.
• Support legislative or regulatory efforts to protect the confidentiality of medical records and the privacy of individuals.
• Support efforts to create electronic medical information systems that protect the individual’s privacy, allow for individual access, and promote the portability of records and information.
• Advocate for improved patient care and treatment by increasing the number and availability of specialists in the field.
• Support efforts to create a national network of VA Epilepsy Centers of Excellence to provide needed diagnosis, treatment and research for service-related epilepsy as a consequence of traumatic brain injury (VA Epilepsy Centers of Excellence Act of 2007).

Organizational

• Encourage government policies which strengthen the ability of voluntary, nonprofit organizations to provide essential services. Such policies include continued preferential treatment for nonprofit postal rates; tax policies that encourage charitable giving; and fair policies overseeing lobbying activities. Support government policies that promote the transparency and accountability of voluntary organizations, without adding undue burdens to or violating individual constitutional rights.
• Oppose efforts to limit nonprofit advocacy.

Prevention

• Support laws requiring mandatory use of motorcycle and bicycle helmets and highway safety programs such as reasonable speed limits and seat belt laws.

These activities define the current areas of interest of the Legal and Government Affairs Committee and the Government Affairs Department staff. Within these parameters, and subject to the restrictions and definitions of the Tax Reform Act of 1976, the Foundation will work to promote federal government activities beneficial to persons with epilepsy. As unanticipated issues arise which require prompt action by the Foundation, the Chair, President and Chief Executive Officer and Chair(s) of the Legal and Government Affairs Committee (in consultation with the Executive Committee when possible) will act in accordance with the established goals, objectives and policies of the Epilepsy Foundation. The Board of Directors shall be advised of such actions at the earliest possible time.

Approved by the Board of Directors, November 2007.