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Articles and Publications
Unmet Medical Needs for People with EpilepsyNovember is Epilepsy Awareness Month. We asked our board to identify “What are the most important unmet medical needs for people with epilepsy?“ Here are their responses.
| “The greatest unmet need is a drug, device, or procedure that will stop seizures in patients with intractable epilepsy. We have many new drugs available, with many favorable properties, yet no real advance in the number of people who become seizure free. Improvement in seizures is good, but seizure freedom is always our goal.” |
Carl W. Bazil, MD, PhD
Associate Professor, Clinical Neurology
Columbia University College of Physicians and Surgeons |
| “We need treatments (either medications or devices) that can be antiepileptogenic, that is, treatments that are disease modifying. To date, all therapies, except for surgery, treat seizures but do not clearly prevent or alter the underlying process.” |
Gregory Kent Bergey, MD
Professor, Neurology
Director, Johns Hopkins Epilepsy Center |
| “The most important unmet medical need is a cure for epilepsy, regardless of its cause. Although much progress has been made in understanding epilepsy, a cure may still be years away. In the meantime, a pressing unmet need is to develop new ways of selecting antiepileptic drug therapy so more patients realize optimal benefit with the first drug selected.” |
James Cloyd, PharmD
Professor and Lawrence C. Weaver Endowed Chair, Orphan Drug Development
College of Pharmacy, University of Minnesota |
| “The hidden toll of epilepsy - identifying the side effects of medication. Doctors and patients tend to focus on the major problems, such as tonic-clonic seizures, but may fail to recognize the ongoing and over time, invisible, side effects of chronic medications.” |
Orrin Devinsky, MD
Professor, Neurology, Neurosurgery, and Psychiatry, NYU School of Medicine
Director, NYU and Mt. Sinai Comprehensive Epilepsy Centers |
| “One of the biggest unmet needs that we have documented through calls to our Epilepsy Information Service at Wake Forest University School of Medicine is the need for assistance with medical costs, especially medication. There seems to be a growing number of people who are overwhelmed with the cost of the medical care. Even those with insurance are calling concerned at the rising costs of their co-pays. The working poor are most affected.” |
Patricia A. Gibson, MSSW
Assistant Professor, Associate Director, Comprehensive Epilepsy Program
Wake Forest University School of Medicine
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| “One of the greatest difficulties that patients with epilepsy (and their families) have to face is the loss of the predictability of every day life. Such a loss is often dealt through denial which only leads to the development of anxiety and depression symptoms. Helping patients with epilepsy (and their families) "mourn" such loss is an unmet need that patients' families and physicians need to address together.” |
Andres M. Kanner, MD
Professor, Neurological Sciences, Rush Medical College
Rush University Medical Center |
“There is a huge unmet need for the most severe cases of symptomatic generalized epilepsy in which drugs don't work and surgery is not an option. I think diets and neurostimulation (VNS, NeuroPace) can be helpful, but even they don't lead to seizure freedom in all cases. We need continued new and innovative treatments.” |
Eric H. W. Kossoff, MD
Assistant Professor, Neurology & Pediatrics Medical Director, Ketogenic Diet Center
Johns Hopkins Hospital |
| “The willingness of general neurologists, who are not affiliated with a comprehensive epilepsy center, to consider the possibility of epilepsy surgery by a comprehensive epilepsy center.” |
Howard Weiner, MD
Associate Professor of Neurosurgery and Pediatrics
School of Medicine and Hospitals Center, NYU Medical Center |
| “I think the greatest unmet need for children with epilepsy is comprehensive care and evaluation for the child with epilepsy and other neurological or school difficulties. There continues to be a great under-recognition of the co-morbidities that occur in children with epilepsy by physicians, and the importance of proper evaluation. Addressing these often has a dramatic impact on the child’s, and family’s, quality of life. Taking care of the child with seizures who also has ADHD, or migraine, or learning difficulties, or mood disorder, or a sleep disorder requires appropriate assessment which can be challenging in the office setting with short time for patient visits. Individualizing the treatment for the epilepsy and these other diagnoses is critical for the success of treatment.” |
James W. Wheless, MD
Professor and Chief, Pediatric Neurology
University of Tennessee Health Science Center, St. Jude Children's Research Hospital |
Submitted by Rita Watson, MPH: 10/30/07
Edited by Steven C. Schachter, MD
Submitted: 10/30/07 Back to top
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