John W. Swann, PhD, scientific director of the Gordon and Mary Cain Pediatric Neurology Research Foundation Labs and professor in the department of pediatrics and neuroscience at Baylor College of Medicine in Houston, TX, is the president of the American Epilepsy Society (AES). His special interest — seizures in the developing brain — began around the time his first child was born.
“Reading about catastrophic childhood epilepsies during the day and going home to be with my infant daughter at night profoundly affected me,” he told Neurology Today in a telephone interview. “I knew how devastated I would have been if my child had one of those epilepsies.”
Dr. Swann, who earned his PhD from the University of Maryland in 1974, does research on developmental differences in focal seizures of the temporal lobe, particularly the CA3 subfield of the hippocampus. His lab is studying long-term alterations in the physiological properties of individual cells and patterns of connectivity produced by early life seizures. The ultimate goal is to identify the molecular basis of chronic epileptic conditions — knowledge, he said, that could lead to drugs that prevent the formation of epileptogenic neural networks.
Today, children with intractable epilepsy still keep him inspired as a professor and as the president of the AES. He spoke with Neurology Today about his career and the organization he leads.
TELL US A BIT ABOUT YOUR INVOLVEMENT IN THE ORGANIZATION PRIOR TO BECOMING PRESIDENT
For the past 20 years, I have served continuously on AES committees — as a member or chair — as well as on the board of directors. I became president of the AES this year. The officers of the AES Executive Committee work together closely and conduct weekly conference calls. So by the time the AES president takes office, he or she is familiar with the operations of the society and the challenges and opportunities that lie ahead.
WHAT ARE THE TOP THREE OR FOUR ISSUES AFFECTING YOUR MEMBERS?
There are many issues. Right now the concerns getting our most vigorous attention are: 1) the use of generic versus brand-name anticonvulsants; 2) the unrecognized consequences of traumatic brain injury in Iraqi and Afghanistan war veterans — particularly post traumatic epilepsy; and 3) the state of funding of the NIH. We are concerned about the diminishing support of biomedical research in the US, and we want to foster the training of physicians and scientists in underdeveloped countries in neurology and particularly epileptology.
YOU MENTIONED THE ISSUE OF GENERIC VERSUS BRAND-NAME ANTICONVULSANTS. WHAT IS THE AES DOING ABOUT THIS?
Our Access to Continuity of Supply Task Force is developing a clinical research protocol for comparing the effectiveness of generic and brand-name anticonvulsants in a relevant patient population. We hope the results will be considered by the FDA in developing future policies on this issue.
Dr. Mike Berg and his task force have been working with the FDA to develop a research protocol, and the task force has recommended that the AES endorse the AAN Position Statement of November 2006, “Coverage of Anticonvulsant Drugs,” which was endorsed by our board of directors. [The AAN position paper opposes generic substitution of antiepileptic drugs without the knowledge and consent of the treating physician and patient (Neurology 2007;68:1249–1250).]
WHAT IS THE AES DOING ABOUT TBI AND EPILEPSY AMONG VETERANS?
As you know, traumatic brain injury is the official ‘signature wound’ of the Gulf War, and we anticipate that many of these returning veterans with TBI will develop epilepsy. But this can take months to years to develop.
Our Operation Giveback Task Force, which is spearheaded by Dr. Marc Dichter, has developed a position statement to support funding for the Epilepsy Centers of Excellence within the VA system. Our board of directors recently approved this statement and we plan to publish it in epilepsy journals and distribute it to members of the Committee for Veterans Affairs in the House of Representatives. We hope this will influence legislation to increase support for these centers, many of which exist but have been unfunded for some time
We hope these centers provide improved epilepsy care for veterans, and that they will work with epileptologists in academic centers outside the VA system to further enhance patient care.
YOU ALSO MENTIONED NIH FUNDING ISSUES AS A PRIORITY FOR THE AES. WHAT IS THE ORGANIZATION DOING ABOUT THIS?
I just finished my tenure as chair of an NIH study section and it is discouraging to know that fewer than 10 percent of the grants we review will be funded and that many important research programs will not be funded because of diminishing NIH support. As AES president, I co-chaired the NIH Conference “Curing Epilepsy 2007: Translating Discoveries to Therapies,” which demonstrated how far we have come in a seven years since the first conference in understanding the mechanisms responsible for epilepsy.
Using this conference as a springboard, I have been giving talks to patients and families of children with epilepsy who were visiting Capitol Hill. This was one of a series of activities, called Kids Speak Up!, sponsored by the Epilepsy Foundation's Public Policy Institute in April 2007. Together with physicians and scientists, the kids and their families visited the senators and congressman and asked for increased funding for epilepsy research.
The AES has also established an Advocacy Committee. AES members are alerted to critical legislation regarding NIH funding and other issues relevant to epileptology, and are asked to e-mail and call members of Congress requesting support for this legislation. We will be committed to continuing this active role in advocating for increased NIH funding.
WHAT IS THE AES DOING ABOUT PHYSICIAN TRAINING IN UNDERDEVELOPED COUNTRIES?
Unfortunately, in many countries basic services, including anticonvulsant medications, are unavailable or available only sporadically. The AES has begun a new and important partnership with the North American Commission of the International League Against Epilepsy (ILAE) to work on this issue, and to develop training programs for physicians from these developing countries.
Among programs, we're trying to get physicians from other countries to attend our annual meeting in the US and, when possible, remain for a month or longer to work with a physician at one of our medical centers. We feel that establishing a long-term “one-on-one” working relationship between a physician from a developing nation and a mentor in the US and Canada is a fruitful way to “grow” epilepsy treatment internationally.
We are also developing a program that would send AES physicians and groups of physicians to underdeveloped countries for extended periods where they would teach, train, and work alongside physicians in these countries to improve patient care. These programs are underway or in the later stages of development. Jeff Noebels chairs our International Affairs Committee and he is working closely with Sam Weibe, chair of the North American Commission for ILAE, on these programs.
WHAT ARE THE MOST DIFFICULT CHALLENGES FOR YOUR MEMBERS?
The difficult challenge is finding the best ways to treat people with epilepsy — treating not only their seizures but also the psychological and cognitive problems that can accompany seizures. For many individuals, our current anticonvulsants work well to control seizures, but unfortunately, not every person with epilepsy is aided by these drugs. The challenge is to find new treatments and therapies. This is where basic, translational, and clinical research comes in. This is an enormous scientific challenge but we are making significant progress.
WHAT DO YOU SEE AS YOUR BIGGEST CHALLENGE TO LEADING THE AES, AND WHAT DO YOU WANT TO BE YOUR BIGGEST ACCOMPLISHMENT?
Everything we do requires money. Currently, corporate sponsorship for the AES has diminished significantly due in large part to many anticonvulsant drugs going off patent. Thus, we are being forced to reinvent the way we do business. We have a new committee infrastructure in the AES to meet these challenges. We are committed to maintaining the services we provide to our members and this requires a very close re-examination of the services we provide and adjusting our strategic plans to meet our goals with reduced resources.
THE AES 61ST ANNUAL MEETING IN PHILADELPHIA IS NOV. 30 THROUGH DEC. 4. CAN YOU GIVE US A PREVIEW OF HIGHLIGHTS FOR THE CONFERENCE? WHAT WILL BE NEW THIS YEAR?
The theme for this year's meeting will be the interactions between the clinician/scientist and the basic scientist: How we learn from each other and how discoveries made by each can help direct the work of the other. The AES annual meeting serves our diverse membership of epilepsy nurses, psychiatrists, neurologists, child neurologists, and basic scientists. The meeting provides opportunities for members of each of these sub-disciplines to meet, share information and experiences, and most importantly, to share and learn about the recent advances in other sub-disciplines. Our meeting is always well attended by clinicians and scientists from all over the world. For more information about the AES and the annual meeting, visit www.aesnet.org.