Patient Advocacy Groups Meet Institute of Medicine Report on Epilepsy with Increased Commitment
As a coalition of organizations dedicated to people living with epilepsy, their families and caregivers, we praise the Institute of Medicine's (IOM) landmark report examining the enormous public health burden of epilepsy.
The IOM recommends:
- The collection of comprehensive data to obtain a more complete understanding of the public health burden of the epilepsies
- Improving access to patient-centered care that meets the complex range of physiological, psychological, cognitive and social needs of people with epilepsy
- Improving access to community resources and quality of lifefor people and families living with epilepsy
- Promoting better public awareness and understanding of epilepsy; and
- A strategic focus on health studies that will lead to better treatment options, including preventions.
Epilepsy—often misunderstood and misrepresented in the public discourse—has now been examined and analyzed in a way that will help focus our collective work on behalf of epilepsy patients and families. A full-scale evaluation has been long-overdue. The IOM findings make a strong case for the government to expand its unique and considerable role in addressing the public health burden of epilepsy.
The IOM report recognizes epilepsy as a spectrum of disorders that involves more than 25 syndromes. Seizures vary in frequency and severity, and exact a toll on quality of life that affects not only people with epilepsy, but also their families and communities. Acknowledging the complexity of the disorder and the extreme variances in its impact will lead to a better outcome for all who are affected. Epilepsy knows no boundaries—it can strike at any age and across all socio-economic classes, races and ethnicities.
This coalition of advocacy groups also endorses the discussion in this report concerning the inadequate federal funding for biomedical research in epilepsy as compared to other neurological diseases. At least 1 in 26 Americans will develop epilepsy at some point in their lifetime, and prevalence may be increasing. The risk of sudden death in people with epilepsy is over 20 times greater than in the general population--people with poor seizure control being at greatest risk. We join the IOM in the hope that research will focus increasingly on cures, in addition to improved therapies in order to prevent mortality and other costly consequences of epilepsy.
We are optimistic that all organizations committed to making life better for people with epilepsy, in both the private and public sector, will galvanize across 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 to patients, the general public and health care practitioners.
Citizens United for Research in Epilepsy (CURE)
Epilepsy Foundation (EF)
Finding a Cure Against Epilepsy and Seizures (FACES)
Preventing Teen Tragedy (PTT)
Rasmussen’s Encephalitis (RE) Children’s Project
Tuberous Sclerosis Alliance (TSA)
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These organizations were co-sponsors of the IOM Report. They are members of Vision 20/20, a cooperative group of more than 20 consumer, health professional, and advocacy organizations concerned with the broad spectrum of seizure syndromes and disorders known as the epilepsies. The group’s primary interests are improving epilepsy awareness and understanding and the advancement of basic and clinical research to prevent, treat, and cure this serious medical condition. Vision 20/20 members provided public testimony before the Institute of Medicine’s independent Committee on ”The Public Health Dimension of the Epilepsies”.