News Release

Epilepsy guidelines will improve treatment and access

Current treatment often relies on 10-year-old data, excludes newer drugs

Peer-Reviewed Publication

American Medical Association

SAN FRANCISCO--New guidelines released today by the American Academy of Neurology and the American Epilepsy Society aim to educate physicians about options to treat their patients and provide patients with epilepsy an improved quality of life, according to Eric Hargis, president and CEO of the Epilepsy Foundation, a voluntary health organization representing 2.5 million Americans with epilepsy.

"Prescribing patterns for epilepsy in general neurology have not changed significantly for the past 10 years, although in that time many new treatment options have been approved," Mr. Hargis said. "Epilepsy is not a one-size-fits-all disorder. The new guidelines will help physicians select the correct treatment based on their individual patient's needs." Mr. Hargis spoke today at an American Medical Association media briefing in partnership with the American Academy of Neurology (AAN) and the American Epilepsy Society at the AAN's annual meeting in San Francisco.

In an attempt to contain costs, Medicaid, Medicare and private insurance companies use drug formularies to assess the amount they will reimburse patients covered under their plans. The formulary drugs are supposedly selected by the health plan based on safety, efficacy and cost. When patients use formulary drugs, they pay less for their medications. But this system does not always guarantee the best treatment.

"The older medications are the cheapest, so these are the ones that tend to be covered under formularies," Mr. Hargis explained. "It is a dollars and cents issue. But if a patient has one seizure because of being on the wrong medication, it can cost thousands in terms of emergency room visits, loss of job or injury."

Another problem faced by people with epilepsy is the "fail first" policy of some insurance plans--try formulary drugs first and if these fail, prescribe the newer, more expensive drugs. "Again, one seizure can cause a cascade of life-altering events," Mr. Hargis said. "Patients may have their driver's licenses revoked and because of the stigma associated with the disorder [a seizure can be a visually frightening event], they may well lose their jobs. Unemployment is at least 25 percent among people with epilepsy."

"Although epilepsy is the oldest medical condition known to humankind, it is still surrounded by mystery, ignorance and fear," Mr. Hargis said. "For example, in a survey of 20,000 U.S. teens, 50 percent thought it was contagious, 50 percent thought it was a mental illness and two thirds stated they would not date a person with epilepsy."

Defining the efficacy of treatment in people with epilepsy can be tricky, Mr. Hargis noted. Treatment decisions have often been based on seizure control alone and not on the patient's quality of life. "If a patient is put on a certain medication and has a significant reduction in seizures, that's great," he explained. "But if that person is also walking around in a fog or can't go to school or can't work or has memory problems because of the medication, then that's not treating the patient, that's only treating the seizures. It's important that everything that is going on in the patient's life be clinically evaluated."

"For the past 10 years general neurologists who are not seeing a large number of people with epilepsy may have found that a certain drug works well and it then becomes the drug of choice," Mr. Hargis said. "The problem is it might be the best drug for only 70 percent of their patients. Epilepsy is a very individualized condition and it is often said that its treatment is as much art as it is science. These guidelines will boost both the art and the science. "

"The guidelines also give new urgency to the need to expand coverage of all epilepsy medications," Mr. Hargis concluded "Treatment decisions for epilepsy need to be made by informed physicians in partnership with their patients and not by Congress, HMOs [health maintenance organizations] or insurance companies."


Media Advisory: To contact Eric Hargis, contact Peter Van Haverbeke at 301-918-3772 or pvanhaverbeke@efa.pvh. On the day of the briefing, call the AMA's Science News Department at 312-464-2410, the AAN Press Room at 415-978-3521, or email

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