Children from Cities and Towns Across America Tell U.S. Congress About Their Personal Battles with Epilepsy

3/22/2004

From: Peter VanHaverbeke of the Epilepsy Foundation, 301-918-3772; Mary Johnson, 414-771-0917

WASHINGTON, March 22 -- Children with epilepsy and their families will converge on Capitol Hill on Tuesday, March 23 to seek support from their Senate and House representatives in their battle with epilepsy and its disabling impact on their daily lives.

The primary message of the 40 children, who range in age from seven to 16, is that Congress can help secure a better future for them by assuring access to employment, and to federally funded assistance programs and services, and to public accommodations, and to basic rights which are now being threatened by erosion of the Americans with Disabilities Act (ADA). Families will call for support of measures to restore civil rights protections weakened by federal and state court decisions that question whether epilepsy is a disability, and therefore, whether it is covered under the ADA at all.

The visits with congressional representatives are part of the Epilepsy Foundation's "Kids Speak Up" program, a grassroots campaign to help children with epilepsy and their families make their voices heard in the halls of Congress. The program is supported by an educational grant from Abbott Laboratories. About 200 fellow epilepsy advocates attending the Foundation's annual Public Policy Institute will join the children during the three- day program.

"Kids Speak Up amplifies the voices of children with epilepsy so they can be heard in the halls of Congress. It gives congressional leaders a better understanding of the real struggles children have in dealing with epilepsy. And, most importantly, the program gives these children a chance to play a role in creating a brighter future for themselves," said Tony Coelho, chair-elect of the board of directors of the Epilepsy Foundation and a person with epilepsy.

"For people with epilepsy and their families, access to quality, affordable health care is critical to living with this serious chronic disorder," said Eric R. Hargis, president and CEO of the Epilepsy Foundation. "The 'Kids Speak Up' program is an important step in raising Congressional awareness of the serious medical and social issues facing children with epilepsy. In addition to shoring up the ADA, we're calling for expanded support for the epilepsy public health agenda being carried out by the Centers for Disease Control and Prevention, and the Health Resources & Services Administration."

In fact, the need for Congressional and overall general public awareness of epilepsy has never been greater. A recent survey by the CDC, published in the November issue of the medical journal Epilepsia, found that while nearly one-third of over 4,000 adults surveyed know someone with epilepsy, only about 40 percent of them are knowledgeable about the disorder and only half say they know what to do if someone has a seizure. "Epilepsy is a huge problem that will take the combined efforts of the voluntary, business and government sectors to resolve. The "Kids Speak Up Program" is one step in that direction," Hargis said.

Epilepsy, which is marked by recurrent seizures, is the most common neurological disorder in children and affects 350,000 people under the age of 17. Despite modern therapy, which includes daily medication that works for some, about 1 million people continue to have seizures or significant side effects from treatment. A study published in 2000 showed that epilepsy costs the nation more than $12.5 billion a year.

The Epilepsy Foundation is a nonprofit organization with the goal of ensuring that people with seizures are able to participate in all life experiences; and which works to prevent, control and cure epilepsy through research, education, advocacy and services.

Abbott Laboratories is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals, nutritionals and medical products, including devices and diagnostics. The company employs more than 70,000 people and markets its products in more than 130 countries. Abbott introduced Depakote(r) (divalproex sodium) in the U.S. approximately 20 years ago. In 2002, Abbott received FDA approval of Depakote ER (divalproex sodium extended-release) tablets for the treatment of complex partial seizures and simple and complex absence seizures in adults with epilepsy. In 2003, Depakote ER was approved for the treatment of complex partial seizures in isolation or in association with other types of seizures and simple and complex absence seizures in children, ages 10 and above, with epilepsy.