The Epilepsy Foundation Applauds Landmark Institute of Medicine Report on the Spectrum of Epilepsy
March 30, 2012 - Washington, D.C.-The Institute of Medicine (IOM) released its report, Epilepsy across the Spectrum today. The Epilepsy Foundation, an organization dedicated to people living with epilepsy, their families and caregivers, applauds this landmark report that acknowledges the long-overdue examination of the public health burden of epilepsy, including:
- A better collection of comprehensive data to gain a more complete understanding of the public health burden of the epilepsies
- Improved access to patient-centered care that meets the complex range of physiological, psychological, cognitive and social needs of people living with epilepsy
- Better access to community resources and quality of life for people and families living with epilepsy; and
- A strategic health focus on studies that will lead to better treatment options, including preventions.
The Epilepsy Foundation, in concert with a coalition of epilepsy organizations called Vision 20/20, co-sponsored this study, therefore we have a vested interest in pursuing its recommendations and ensuring the goals and strategies for implementation are both targeted and feasible. We look forward to a strong public response and support a strategic implementation of the outlined recommendations.
At the public IOM briefing on the report today, Epilepsy Foundation Board Chair, Brien Smith, M.D., praised the IOM for delivering a “fantastic and objective report,” and called it a “huge step forward for the epilepsy community.” Epilepsy Foundation Interim CEO, former congressman Tony Coelho, who has epilepsy, commended the report’s attention to the issue of stigma. “For those young people in high school and college, stigma is a huge issue. I appreciate everything you’ve done.”
We are encouraged to find that epilepsy—so often misunderstood and misrepresented in the public discourse—is finally being examined, analyzed and reported on in a way that will intensify our collective work on behalf of epilepsy patients and families. These findings also make a strong case for the government to expand its considerable ability to recognize, address and respond to the public health burden of epilepsy. At least 1 in 26 Americans will develop epilepsy at some point in their lifetime, and prevalence may be increasing.
The IOM report recognizes epilepsy as a spectrum of disorders that involves more than 25 syndromes. In fact, seizures vary in frequency and severity, and exact a toll on quality of life that affects not only people living with epilepsy, but their families and surrounding communities. By acknowledging the complexity of the disorder and the extreme variances in its impact on people with epilepsy, we hope this will lead to a better outcome for all of the groups in the spectrum.
We are carefully reviewing the findings of this report and its recommendations, and we are optimistic that all organizations committed to making life better for people with epilepsy, both in the private and public sector, will galvanize across all disciplines with one goal in mind: to effectively and strategically respond to the real and immediate needs of people with epilepsy and their families and to ensure the best information, care and understanding of the condition are being implemented and portrayed, both to the general public and health care practitioners.