Operation Giveback: Giving Veterans the Care They Need and DeserveAn Interview with Marc A. Dichter, MD, PhD

Marc A. Dichter, MD, PhD, is Professor of Neurology and Pharmacology, University of Pennsylvania School of Medicine. His areas of expertise include: seizures and epilepsy, epileptogenesis, status epilepticus, neuroprotection, neural injury, and neurotoxins. Dr. Dichter received his MD from the New York University School of Medicine and trained in neurology at the Harvard Longwood Neurology Program. He has held a fellowship from the National Institutes of Health, NINDS. Dr. Dichter is past president of the American Epilepsy Society and has published extensively.

Caring for Our Veterans with Traumatic Brain Injury and Developing Epilepsy

Operation Giveback came about through a confluence of interests that I developed recently. On the one hand, professionally, I have been involved with the problem of epilepsy for years. In addition, I have been particularly interested in the problem of trying to prevent epilepsy after a known risk factor, such as Traumatic Brain Injury (TBI). This is an area of extreme importance and one which has been somewhat neglected by the field until recently. There is now much more experimental research in this area and the beginnings of interest in the clinical domain as well.

I currently have a grant from the Department of Defense to do a pilot clinical trial to look at preventing epilepsy after TBI. I feel strongly that there is no way we will ever make progress in this area unless we develop appropriate clinical trial methodologies. I reasoned that if animal experiments were to develop methods for preventing epilepsy, it would take us 5 to 10 more years to demonstrate whether that works in people. That’s a very long time. We need to know what kinds of paradigms to use and what experiments would be useful.

So with the defense department supporting a pilot clinical trial, and building on the prior experiences of epilepsy prevention trials at the University of Washington, we can begin to work out many of the problems inherent to this kind of clinical research.

A second reason for my interest in Operation Giveback is a result of the current political and social climate around us -- recognition of what is going on in this country and the world with regard to the wars in Iraq and Afghanistan. It is clear that there are a lot of soldiers coming back from the war zones with very significant head injuries. In fact, the two “signature” wounds from these wars are TBI and limb loss. And one of the consequences of TBI is epilepsy.

In the midst of all of this, my sense is that only about one percent of the persons in our country are actively engaged in the war (that is, the soldiers and their families). The rest of us, sad to say, seem more interested in carrying on a normal, uninterrupted life than making any social, economic or other sacrifices to support those fighting for us. Our concern for the returning wounded young people should transcend any specific feelings one has about the reasons for being in Iraq or Afghanistan in the first place.

So it seemed to me that it was time to rectify the situation a bit. The thing that I know about is epilepsy, and so I knew I could do something about epilepsy. It was a natural fit for me to think about how to help make sure that none of the returning veterans, who may develop epilepsy after TBI, fall through the cracks in the medical system and fail to get appropriate medical care. I wanted to be certain they received the kind of care that they clearly deserve.

Support from the AES

With my thinking about the issue of epileptogenesis, from both the experimental science and clinical perspectives, and my interest in the plight of the returning brain injured war veterans, it made sense for me to try to devote some of my personal time to finding solutions to the problem of post-traumatic epilepsy and ways to help returning veterans at risk for developing it.

I recognized that I could not do this myself and needed the engagement of a larger community that provides epilepsy care. As a former President of the American Epilepsy Society (AES), an organization to which I am still closely tied, I thought that seeking their support was the ideal way to go about this, hoping that this concept would “catch on” with my colleagues in the epilepsy community. I went to the AES and presented my thoughts about Operation Giveback and provided a somewhat detailed plan about how such a program could be developed and implemented. I asked them to support this as an organization and help develop the infrastructure to go forward. They recognized the importance of the issue and set up a task force, which I head, to explore ways in which the epilepsy professionals within our community can become more involved.

Creating resources and education

I wanted Operation Giveback participants to become involved on a voluntary basis in order to demonstrate our commitment to this issue. Also, I was aware of the possibility that other neurological and professional medical organizations might pick up on our lead and join us. There are clear needs among many of these veterans for other specialists, such as those in the neurocognitive community, in psychiatry, in rehabilitation, and in prosthetic devices. If professionals in those communities see our program as a potential model and participate, that will be good. In any case, we in the epilepsy community will try to do our part.

The first effort was to put together a task force of epilepsy specialists at the Veterans Affairs (VA) hospitals to determine how we could support their efforts. Additionally, we are supporting efforts within the VA medical system to have more resources available and provide good educational opportunities so the veterans would understand what was happening if they began having seizures.

One of our first accomplishments was to develop educational material designed for the veterans and their families. These were posted on the AES website in the form of questions and answers about TBI and post-traumatic epilepsy. We provide guidance on how to recognize seizures, what kind of medical attention may be needed, etc. It is particularly important to reach the veterans directly because the seizures may begin months to years after the TBI, a time when many people are out of the service, and because seizures may be subtle and difficult to recognize.

We also recognized that the most effective target for education of this kind would be the prospective patients themselves, their families, and the primary care providers with whom they are likely to interact. Thus, another objective of the Operation Giveback Task Force is to determine how best to reach all of these individuals and make them aware of our concerns and of the educational material we are trying to make available to them. Part of this may be accomplished by a more active public information program that we will start soon.

We also created a slide set that could be used by epilepsy care providers to educate other professionals, whether inside or outside of the VA medical system, about posttraumatic epilepsy diagnosis and treatment. This will be made available via the AES website for anyone involved in trying to train other providers. We are also trying to add more screening for seizures to the ongoing TBI screening questionnaires used by the VA in the assessment of returning veterans who have experienced TBI.

Easy access to care

Next, the AES developed a position paper indicating our support for expanded resources within the VA medical system for epilepsy diagnosis, treatment and research, especially with regard to posttraumatic epilepsy. Members of the Operation Giveback Task Force have also volunteered to help develop educational materials about posttraumatic epilepsy with their colleagues in the VA medical system.

The AES is looking at ways to develop support for expertise and necessary facilities within the VA medical system and will advocate for breaking down some artificial and not-very-helpful barriers. An example of the kinds of barriers we’d like to see disappear relates to referral patterns for people within the VA with complicated epilepsy. For example, as I understand it, someone in Cincinnati who develops seizures may need to go to a VA hospital in Wisconsin, quite a distance away, instead of the nearby University of Cincinnati Epilepsy Monitoring Unit, for further evaluation. In Philadelphia, the University of Pennsylvania has a contract with the VA so that some of the veterans – though I don’t know how many -- may get help and receive sophisticated diagnostic monitoring and treatment within their community. It would be nice if this model existed all over the country.

We are seeking to create a more coordinated mechanism on a national level in which a veteran can get help close by rather than being shipped significant distances across the country. Right now there are some economic and bureaucratic problems that the system needs to address and we are trying to identify these issues. The members of Operation Giveback Task Force, and the AES leadership and membership, want to help ensure that our VA hospitals receive the resources they need to better handle the expected influx of returning veterans with TBI and who may later develop epilepsy. We want to insure that those who served the country are receiving the care they need and deserve.

Reviewed by Steven C. Schachter