Epilepsy Foundation of America

The Epilepsy Foundation, also Epilepsy Foundation of America (EFA), is a non-profit national foundation, headquartered in Landover, Maryland, dedicated to the welfare of people with epilepsy and seizure disorders.

Mission Statement: The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through service, education, research, and advocacy.

Primary goals include advocating for better treatment options, aimed at no seizures and no side effects. The Foundation recently adopted a mantra that all its programs, services, and educational activities are designed so that "not another moment is lost to seizures."

The Foundation was established in 1968 and now has a network of over 60 affiliates.

The Epilepsy Foundation came into existence as the result of a merger of the the Epilepsy Association of America and the Epilepsy Foundation in 1967. It has since been joined by the National Epilepsy League. Programs included educational, counseling, referral, and employment assistance. In addition the Epilepsy Foundation has advisory and youth programs, training grants and programs.

The Foundation has a comprehensive website highlighting the organization's programs, services, advocacy, and affiliate network. In addition, the Foundation publishes a magazine, EpilepsyUSA, six times a year.

The Foundation has a significant partnership with the Centers for Disease Control and Prevention. This partnership provides education to youth and seniors with epilepsy. While epilepsy's onset can happen at any time of life, it is most likely to occur in the young and the old.

Over the last few years, celebrities such as Amy Lee of the Grammy-winning rock band Evanescence, Greg Grunberg (star of NBC's Heroes), Pittsburgh Steelers star Alan Faneca, and Senator John McCain have worked with the Foundation to get the word out about the need to raise awareness of epilepsy and end the stigma and misunderstanding that is still prevalent in our society about people with seizures.

On Saturday, March 31st, 2007, on the National Mall in Washington, DC, the Foundation held their first "National Walk For Epilepsy", sponsored in part by Ortho-McNeil Neurologics. Over 5000 people participated and the event raised one million dollars to raise awareness and fund research.

Controversy
According to the Wall Street Journal, the Foundation, with its local affiliates, has been lobbying for state laws in 25 states that would prevent pharmacists from substituting generic epilepsy drugs for brand-name drugs unless the pharmacist had written consent of the physician or patient. The pharmaceutical industry has also been lobbying state legislatures for the change, and working with the Foundation.

The pharmaceutical industry spent $8.8 million in state campaign contributions in 2006. In its annual report, the Epilepsy Foundation reported that it got $500,000 to $999,999 from GlaxoSmithKline, and $100,000 to $499,999 from each of Abbot Laboratories and Johnson & Johnson. Representatives of four pharmaceutical companies sit on the Epilepsy Foundation's board, as does Billy Tauzin, head of PhRMA, which gave $25,000 to $49,999. The Foundation denied that pharmaceutical funding had anything to do with its support of the laws.

Generic drug substitution is significant, according to the Journal, because 4 major branded drugs, with $5 billion revenue last year, will be going off-patent by 2010. (The 5 best-selling drugs are Topamax, Lamictal, Lyrica, Keppra and Depakote.) Pharmacists can now substitute generics, because every generic drug, in order to be approved, has to demonstrate that it is equivalent to the branded drug.

The Epilepsy Foundation received anecdotal reports of patients experiencing seizures and side effects after switching drugs, and tried to convince the FDA in 1999 that there was a problem, but the FDA decided there was no evidence. In 2006, the Foundation convened a committee of medical experts, and its own experts also found no evidence. Nonetheless, the Foundation recommended that doctors be required to give permission to switch to generics.