On my Mind: What's Next?

To all those who do not know me, let me introduce myself as your new Editor-in-Chief of Epilepsy.com. My name is Joseph I. Sirven, M.D. and I recently took over the editorship from Dr. Robert Fisher who will still remain active on the site with various initiatives. I am a practicing epileptologist at Mayo Clinic in Arizona. As I survey the amazing amount of work that my predecessors have put into the content on Epilepsy.com, the question arises, what should you expect from my tenure for the next two years? Perhaps the best way to answer that question is to consider the current state of epilepsy care in 2010.

In 2008, the U.S. Centers for Disease Control and Prevention (CDC) published an important document entitled Epilepsy Surveillance among Adults---19 States, Behavioral Risk Factor Surveillance System, 2005. MMWR Surveillance Summary, August 8, 2008/57 (SSO6); 1-20. This analysis was based on results from a random-digit dial telephone survey of U.S. adults over the age of 18 conducted by the CDC. These adults did not necessarily have epilepsy, but were asked questions pertaining to epilepsy in at least 19 states. This random dial system is used to track what is ongoing in the United States for various disease conditions and this was one of the opportunities for epilepsy to register on those surveys so as to obtain a brief snapshot of what is happening in epilepsy care at that point in time.

The study found that about 1.65% of adults from 19 states reported that they had been told by a doctor that they had epilepsy or a seizure disorder. Among adults with active epilepsy who reported recent seizures, 16.1% reported not currently taking their epilepsy medications and 65.1% reported having had more than one seizure in the past month. Among adults with a history of epilepsy, 23.7% reported cost as a barrier to seeking care from a doctor within the past year. A total of 34.9% of adults with active epilepsy with seizures reported not having seen a neurologist or an epilepsy specialist in the previous year. Adults with epilepsy were more likely to be physically inactive, and more likely to smoke. All in all, despite the number of therapies available to Americans with epilepsy, a large proportion of people continue to suffer for a variety of reasons and it tells us that so much has left to be done in order to truly help those afflicted with this condition.

How can Epilepsy.com help?

The role of Epilepsy.com’s parent foundation, the Epilepsy Therapy Project is to foster new innovative treatments and get those treatments to the U.S. marketplace sooner than later. Therefore, my role as I see it over the next two years is to further the vision of Epilepsy Therapy Project and help highlight those areas where new treatments may come to market sooner to help individuals. You will see a number of slow evolutionary changes that will occur over the course of the next two years that will help to achieve this mission. We want to help promote new effective therapies and we want to get these treatments to market. Yet we also want to identify those areas of epilepsy-related problems that are not being addressed by the therapeutic marketplace.

Therefore, I plan to implement the following changes:

• Our columns will emphasize therapy and innovation.
• We will look to expand our list of medical contributors to help us disseminate information from the numerous areas of expertise at our disposal from our volunteer board.
• We will make the site easier to use.

Hopefully, by accomplishing all of these above you will find an indispensable web site, providing information to professionals, patients or anyone that is interested in this condition. We hope to roll out information in a number of various platforms, including apps and other electronic means by which people obtain their information.

From this, we hope that this will truly help inspire innovation, education and, research that will ultimately end the scourge afflicting 1.65% of the U.S. population. Please join me over the next several years as we hope to make all of this a reality.

Please join me in welcoming new members of the Epilepsy. com staff. Brian Lavelle is our new webmaster and Christopher Douglas is our new project manager. We welcome them into our community.