SAN DIEGO—The Institute of Medicine’s (IOM) report, “Epilepsy Across the Spectrum,” has led to several new epilepsy initiatives at the US Department of Health and Human Services (HHS), according to Assistant Secretary for Health Howard Koh, MD, MPH.
The report “asked us to coordinate better on areas like data surveillance and research, [to] advance educational efforts for the public and for professionals, and, very importantly, [to] improve access to appropriate care,” Dr. Koh told Neurology Reviews.
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 66th Annual Meeting of the American Epilepsy Society.
The CDC Conducts Monitoring and Promotes Self-Management
Several HHS agencies have already made progress. In November 2012, the CDC updated its epilepsy epidemiology statistics for the first time since 1994, a “direct result” of the IOM’s call for further research, Dr. Koh said.
The new analysis estimated that about 4.1 million US children and adults have epilepsy and that about half of adults with active disease had seen a neurologist or epileptologist in the previous year—an indication, perhaps, of inadequate care.
“The 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, “the first ever video contest campaign aimed at supporting newly diagnosed individuals with epilepsy and their families,” said Dr. Koh. Through the campaign, the epilepsy community is sharing its experiences, educating others about the condition, and providing encouragement. “In this way, we want to break down the social isolation that often, tragically, comes with a diagnosis,” Dr. Koh commented.
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 has created a network called Managing Epilepsy Well, whose members work to improve the quality of life of people with epilepsy. In addition, the agency’s WebEase webinar, the Program to Encourage Active, Rewarding Lives (PEARLS), and the Using Practice and Learning to Increase Favorable Thoughts (UPLIFT) program use Internet-based, telephonic, and in-person approaches to enhance self-management and treat the comorbidities of patients with epilepsy.
In 2013, the CDC will develop a monitoring system for Sudden Unexplained Death in Epilepsy (SUDEP) while the FDA works with several groups to identify risk factors for SUDEP. HHS is taking steps to identify all relevant controlled studies of anticonvulsants in SUDEP and to add the information to a previous meta-analysis of trials, noted Dr. Koh. In addition, the NIH is funding research on SUDEP.
The FDA Promotes Drug Development, HRSA Focuses on Access to Care
In addition to its work on SUDEP, the FDA is engaged in several other epilepsy-related collaborative efforts. The agency is investigating whether adult epilepsy drug outcomes can be extrapolated to children to speed pediatric drug development, and it is seeking to establish protocols for head-to-head bioequivalency testing of generic and branded epilepsy drugs.
HHS is establishing benchmarks and conducting monitoring through its Healthy People 2020 program “to make sure that people are getting access to appropriate care,” said Dr. Koh. The program, which is more than 30 years old, pursues 10-year initiatives to achieve its science-based objectives for improving Americans’ health.
The IOM epilepsy 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. The program has helped children and families create seizure action plans and has promoted public and professional education, noted Dr. Koh. The initiative also has developed online materials for parent support groups.
Telemedicine has been a major HRSA theme, especially in projects in Michigan, Nebraska, and West Virginia. “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 four to six months to two to four weeks,” Dr. Koh said.