2003 Government Affairs Statement

Epilepsy affects one out of every one hundred children and adults in the United States. Epilepsy is defined as recurrent seizures and can develop at any time of life. Everyone is at risk of developing seizures or epilepsy. Epilepsy can stem from a variety of causes including head trauma, brain tumor, stroke, infection, and poisoning. The effects of epilepsy vary widely from individual to individual but may create medical, economic and social hardships.

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 the eradication of epilepsy.

Within these broad goals, we dedicate ourselves to a Government Advocacy Program that addresses the following specific legislative and regulatory issues. Priority activities for the Foundation for the coming year have been highlighted with an asterisk.

Awareness

Advocate for a Congressional resolution to dedicate November as Epilepsy Month.

Budget and Appropriations

Advocate for increased National Institutes of Health (NIH) funding of biomedical, psychological, and social research to prevent, control, and treat the effects of epilepsy in individuals and their families. Work to expand funding for epilepsy research within the National Institute for Neurological Disorders and Stroke (NINDS) and to ensure coordination of research findings and programs related to epilepsy and the brain within the NIH. Monitor progress on the NINDS benchmarks for epilepsy cure and treatment.

Advocate for significant increases in funding for the epilepsy program at the Centers for Disease Control and Prevention, to reach a goal of at least $25 million by 2010. Advocate for funding for the Health Resources and Services Administration to implement the Children’s Health Act of 2000.

Support increased funding levels for programs which provide vital support to people with epilepsy including the programs authorized by the following laws: the Workforce Investment Act Amendments of 1998, the Social Security Act, Community Based Family Resource Centers, the Family Support Act, the Rehabilitation Act Amendments of 1998, the Individuals with Disabilities Education Act, the Developmental Disabilities Act. Oppose entitlement reform proposals which would adversely impact programs serving people with epilepsy and other disabilities.

Civil Rights

Promote effective implementation and enforcement of civil rights laws. Work to educate legislators, civil rights organizations, and the judiciary and law enforcement agencies on epilepsy related civil rights issues. Oppose legislative or regulatory efforts to weaken the Americans with Disabilities Act, the Rehabilitation Act Amendments of 1998, the Family Medical Leave Act and other legislation offering important civil rights protections to people with epilepsy.

Work with the Access Board to implement the changes in the regulations regarding strobe light fire alarms.

Support legislation that prohibits discrimination based on genetic information.

Support legislation to amend the American’s with Disabilities Act to address recent court decisions, which have not been beneficial to people with epilepsy and other disabilities.

Identify and target specific civil rights issues that other disability organizations are working on and work jointly with these advocates with a view towards a greater impact with Congressional leaders.

Disability/Social Security Benefits

Support efforts to increase usage of private nonprofit providers in the rehabilitation of recipients of social security benefits. Endeavor to improve and increase work incentive programs for recipients of SSI and SSDI. Oppose efforts to narrow the definition of disability. Oppose efforts to cut cash benefits to eligible individuals and families and efforts to time limit benefits.

Education

Support full funding and the reauthorization of P.L. 94-142, the Individual with Disabilities Education Act, to ensure that the rights and safety of children with epilepsy remain protected and that their needs are addressed.

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. Support proposals to increase services to people with epilepsy and promote choice and accountability within the system. Identify federal funding streams, which can support local employment programs serving people with epilepsy.

Epilepsy Research

Support government policies which ensure the adequate protection of people in clinical trials and the humane use of animals for medical research.

Support innovative legislation that will increase bio-medical basic and clinical research funding through trust funds, additional authorizing legislation or other means.

Support funding for epilepsy research in psychosocial, behavioral, cost of care, prevention, women's health and other underserved populations, nursing, educational and rehabilitation areas to address these critical needs.

Driving Laws

Support affiliate efforts to change their state laws or regulations to more closely conform with the Foundation/American Epilepsy Society/American Academy of Neurology consensus model law.

Epilepsy Medication Issues

Support affiliate efforts to change their state laws or regulations to more closely conform to the Epilepsy Foundation’s statement on mandatory substitution of anti-epileptic drugs. Work with the FDA to modify their views on switching medications.

Oppose efforts to limit the availability of the full range of epilepsy medications through restrictive drug formularies and other methods.

Monitor FDA/HHS regulatory policies as they pertain to the availability of anti-seizure drugs, including the required notification to the FDA and physician and consumer organizations when a manufacturer is planning to withdraw a drug from the market, and re-importation legislation and regulations. Continue to support policies encouraging pediatric studies of new drugs and the inclusion of women in clinical trials and respond to issues as they develop.

Support the inclusion of an affordable prescription drug benefit for all Medicare beneficiaries that is part of a nationally administered standard benefits package, and that conforms to the Foundation’s position on drug formularies and mandatory substitution.

Family Support

Support legislative and regulatory efforts to encourage states to develop family centered support programs in each state.

Support passage of the Lifespan Respite Care Act of 2002 that establishes a federal grant program to encourage states to create and enhance state and local respite care programs.

Support reauthorization of the respite provisions contained in Child Abuse Prevention and Treatment Act.

Health Care

Support health care reform policies which ensure access to appropriate and affordable health care for all children and adults with epilepsy. Support efforts to expand coverage to the uninsured through expansions of employer mandates and other proposals. Oppose efforts to reform Medicaid by eliminating the entitlement or restricting the scope of services. The Foundation's Statement of Principles will guide our advocacy efforts in this area.

Support the Family Opportunity Act that allows middle-income families of children with severe disabilities to gain access to Medicaid for their children.

Support legislative or regulatory efforts to protect the confidentiality of medical records and the privacy of individuals, in particular, following the impact of Health Insurance Portability and Accountability Act of 1996 (HIPAA) guidelines.

Support the development of strong and enforceable health care consumer protection legislation.

Support state level reforms designed to improve access to health care including expansions of the State Children's Health Insurance Program (SCHIP), Medicaid expansions and other efforts to assist the uninsured and underinsured.

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. Oppose efforts to limit nonprofit advocacy.

Prevention

Encourage the growth of the Centers for Disease Control and Prevention epilepsy program in order to promote a public health agenda, implement the recommendations for the Living Well With Epilepsy Conference and provide funding to states to develop epilepsy prevention and education programs as described in the Children’s Health Act of 2000.

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 Epilepsy Foundation Board of Directors November 17, 2002