SAN DIEGO – The Institute of Medicine’s report, "Epilepsy Across the Spectrum," has led to several new epilepsy initiatives at the U.S. Department of Health and Human Services, according to Assistant Secretary for Health Howard Koh.
"I want to assure you that since the day this report came out we have been meeting regularly to review what our department has done and what we can do [to] make these recommendations come alive," Dr. Koh said at the annual meeting of the American Epilepsy Society.
Dr. Howard Koh
Several HHS agencies have already made progress. For instance, in November the Centers for Disease Control and Prevention (CDC) updated its epilepsy epidemiology statistics for the first time since 1994, a "direct result" of the Institute of Medicine’s call for further research, he said.
The new analysis estimated that about 4.1 million U.S. children and adults suffer from the condition, and that only about half of adults with active disease have seen a neurologist or epileptologist in the preceding year – an indication, perhaps, of inadequate care.
"CDC is going to take these [measurements] on a regular basis over the next decade. These data help us compare health status, comorbidities, and risk factors [with] the general public, [which] is absolutely vital," Dr. Koh said.
The CDC also partnered with the Epilepsy Foundation to launch the "Now I Know" national epilepsy media awareness campaign which, among other things, invites patients to share their experiences and advice on Facebook.
Also, "we are trying to advance the concept of self-management for people with epilepsy," which is a major IOM theme, Dr. Koh said. The CDC is working with several universities on the issue and has also helped launch a free self-management program on the Epilepsy Foundation’s website called Web-Ease.
The Food and Drug Administration is fully engaged in collaborative efforts, too, Dr. Koh said, including working with several groups to identify risk factors for Sudden Unexplained Death in Epilepsy (SUDEP), to explore if adult epilepsy drug outcomes can be extrapolated to children to speed pediatric drug development, and to establish protocols for head-to-head bioequivalency testing of generic and branded epilepsy drugs, including lamotrigine.
The IOM report – published in March 2012 – also emphasized the need to improve pediatric epilepsy care in rural and underserved settings. That task has fallen to the Health Resources and Services Administration (HRSA), which has been working on the issue since 2003, Dr. Koh said.
HRSA’s Project Access tracks epilepsy outcomes for children in underserved areas and helps ensure that they have proper insurance coverage, community services organization, referral agreements, and adult-care transfers when needed.
Telemedicine has been a major theme, especially in demonstration projects in Michigan and Nebraska. "Preliminary data" from those efforts "indicate families are spending less time traveling to reach specialty care [and that their] average wait for neurology visits has decreased from 4-6 months to 2-4 weeks," Dr. Koh said.
The National Institute of Neurological Disorders and Strokes, one of the National Institutes of Health, is on board too, issuing grants to study the effects of diet on epilepsy and whether or not it’s safe to take epilepsy drugs during pregnancy, among other research concerns, Dr. Koh said.