Report on Advocacy

The Epilepsy Foundation’s advocacy programs give people with epilepsy and their families a voice, Advocacy also promotes acceptance of the condition by educating national and state-level legislative, executive and judicial leaders. Their understanding helps to ensure fair treatment of people with epilepsy.

In Congress

In 2005, federal appropriations for important epilepsy programs and changes to the Medicare and Medicaid programs took center stage in the Foundation’s advocacy efforts.

Increases were approved in 2005 for the epilepsy program at the national Centers for Disease Control and Prevention and for the NINDS program at the National Institutes of Health. Funding was maintained for the Health Resources and Services Administration’s epilepsy program. Epilepsy Foundation’s advocates played a significant role in these appropriations for epilepsy.

Of equal importance was the Foundation’s success at ensuring broad coverage of anticonvulsants in the new Medicare Prescription Drug Benefit. Based on the recommendations of Gregory Barkley, M.D., and the Foundation’s professional advisory board, United States Pharmacopeia, the official public standards-setting authority for all prescription medications sold in the U.S., refined the categorization of anticonvulsants by dividing antiepileptic drugs into four pharmacologic classes. The Centers for Medicare and Medicaid also announced plans would have to cover "all or substantially all" anticonvulsants under the new Medicare Prescription Drug Benefit.

Additionally, the Foundation testified before the Medicaid Commission on the unique challenges faced by people with epilepsy in accessing needed medications. Barkley provided written testimony to the commission on the issue of rising co-pays for brand name drugs versus generic drugs.

In conjunction with Barkley’s testimony, a report discussing the implications surrounding Medicaid cuts was released by the Epilepsy Foundation and Georgetown University’s Center of Children & Families. The report highlights Barkley’s testimony on the critical source of support Medicaid provides to people with epilepsy, and features the story of Brandie Haughey, a 10-year-old adopted child with epilepsy and other disabilities.

Learn more about
'Kids Speak Up!' 2005

The Epilepsy Foundation's Public Policy Institute and Kids Speak Up! program continued in 2005. It drew more than 250 participants, including 82 children. Representatives from 33 Foundation affiliates were on hand, as were several doctors from the Foundation’s professional advisory board, American Epilepsy Society and the American Academy of Neurology.

In conjunction with the advocates’ visits to Capitol Hill, Sen. Hillary Clinton (D-NY), Sen. Charles Schumer (D-NY), Rep. Neil Abercrombie (D-Hawaii) and Rep. Michael Ferguson (R-N.J.) sponsored  “Dear Colleague” letters to their respective houses of Congress requesting support for increased funding for epilepsy programs and research at the national Centers for Disease Control and Prevention, Health Resources and Services Administration and National Institutes of Health. That bipartisan effort yielded 65 co-signers and enhanced efforts to secure funding for critical epilepsy programs.

In the States

State-level advocacy is just as critical as federal advocacy in helping people with epilepsy receive the best possible medical care. Among the state-level advocacy initiatives undertaken by the Epilepsy Foundation in 2005, the State Advocacy Assistance Fund for Epilepsy (SAAFE) is designed to provide targeted support for state and local advocacy activities that promote access to care. Several Foundation affiliates participated in the SAAFE project in a variety of ways; including holding state advocacy days and ensuring that epilepsy medications are safeguarded against restrictive policies.

SAAFE project success stories include an effort in Florida, where a proposal was made to remove several anticonvulsants from the state’s Medicaid preferred drug list and require prior authorization before the drugs could be dispensed. Advocacy efforts and press coverage helped place most of the anticonvulsants back on the preferred drug list. In Kentucky, a state law did not require any school employee, including a nurse, to administer Diastat in public schools. Legislation was passed requiring public and private schools to have at least one employee onsite trained to administer doctor-prescribed Diastat to students with epilepsy.

Jeanne A. Carpenter Epilepsy Legal Defense Fund

In Memory of Jeanne A. Carpenter,
a lawyer, former Board member and a person

with epilepsy. She was a tireless advocate

for people with epilepsy from the time

she was first diagnosed with the condition

until her untimely passing early in 2003.

Access is the key to fighting discrimination against people with epilepsy – access to the courts and access to attorneys knowledgeable about epilepsy. The Epilepsy Foundation’s Jeanne A. Carpenter Epilepsy Legal Defense Fund, now it in its third year, provides that access.

In 2005, the Fund received approximately 250 requests for legal assistance from consumers and attorneys, a 60 percent increase over 2004. To handle requests, the Fund developed a formal intake and referral system (a website and toll-free phone number) and expanded its network of attorneys. More than 175 law offices now provide pro bono help. There are currently about 100 open cases on which the Fund is providing assistance.

In addition to assisting individuals and attorneys with specific cases, the Fund has undertaken a number of legal advocacy initiatives that address employment discrimination and accidental, yet preventable, injuries and deaths of people having seizures.

Regarding employment, the Fund provided recommendations to the federal agency charged with implementing the ADA employment provisions, and lent financial and litigation support to attorneys working on nationally significant employment discrimination cases, the most notable being those involving the rights of people with epilepsy to work as police officers and firefighters.

An unfortunate development in public safety has been an apparent increase in accidental injuries and deaths of people with epilepsy when first responders have been called to assist with seizures. In response, the Fund provided assistance in cases involving deaths or injuries of people forcibly restrained by EMTs, police or other first responders. The behavior of those hurt had been mistakenly deemed “combative.” To create national awareness of this issue, the Jeanne A. Carpenter Epilepsy Legal Defense Fund has had research done on the subject and has made it available to attorneys throughout the country, as well as identifying counsel to take on significant cases and providing them with case support.

New informational materials, calling for universal adoption of protocols and training requirements to ensure that first responders properly identify and provide treatment to people experiencing seizures, have also been developed. These materials are available at www.epilepsylegal.org.