As organizations that advocate for those affected by epilepsy, two CRD clients, the National Association of Epilepsy Centers (NAEC) and Tuberous Sclerosis Alliance (TSA), joined together, along with several other provider and patient advocacy organizations and the U.S. Department of Health and Human Services and its public health agencies in sponsoring a study by the Institute of Medicine (IOM) on the public health dimensions of the epilepsies. On March 30, 2012, IOM released its final report on the topic, “Epilepsy Across the Spectrum: Promoting Health and Understanding.”
The project, which commenced more than 18 months ago resulted in a comprehensive review of epilepsy – one that had not been done since the mid-1970s. At the outset, NAEC and TSA made the decision to contribute financially to the study to assure that it got off the ground. Then, throughout the past year and a half the organizations presented testimony at the IOM’s three public hearings that focused on surveillance, healthcare access and education and public awareness.
Such a study truly shows the power and worth of patient advocacy organizations. Partnerships between organizations and the federal government are just one way in which CRD Associates is able to work with clients to achieve their public policy and government relations goals.
The study’s findings highlight the high rate of epilepsy in the US and the burden it places on individuals and families. Epilepsy is defined as a spectrum of more than 25 seizure syndromes affecting more than 2.2 million Americans. The disorder is characterized by unpredictable seizures in which the brain produces sudden bursts of electrical energy that can interfere with a person’s consciousness, movements and sensations. Seizures differ widely in type, cause, severity, and treatment.
The study’s recommendations focus on the need for improved surveillance data; enhanced prevention and screening for epilepsy and its comorbid health conditions; greater education of primary care providers as well as patients and families; and improved public awareness to eliminate the stigma felt by those living with epilepsy. It identifies the many gaps in epilepsy knowledge, care and education and provides a roadmap for both the private sector organizations involved in epilepsy and for Federal agencies to move forward.
With the report in hand, the real work begins as NAEC and TSA work with HHS and Congress to see that the report’s recommendations are evaluated and implemented.
NAEC is an association of over 170 level 3 and 4 epilepsy centers, which provide an interdisciplinary and comprehensive approach to the diagnosis and treatment of epilepsy and seek to control or at least reduce the frequency of seizures and side effects for patients. The report recognized that too many individuals with refractory epilepsy suffer for too long before being referred to more advanced levels of care for definitive treatment.
The Tuberous Sclerosis Alliance is the world’s largest patient advocacy organization dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a genetic disorder that can cause tumor growth in all of the body’s vital organs, and can result in epilepsy and autism.
Senior Vice President
Mark Vieth, Senior Vice President contributed to this post.