United States Prepares for Onslaught of War-Related Epilepsy

Caroline Cassels

September 28, 2007

September 28, 2007 — With traumatic brain injury (TBI) being the signature wound of the current conflicts in Iraq and Afghanistan, the US government is being asked to establish 6 epilepsy centers of excellence (CoEs) to identify, treat, and monitor the thousands of returning head-injured veterans at potential risk of developing posttraumatic epilepsy (PTE).

Initiated by the American Academy of Neurology (AAN), the Epilepsy Centers of Excellence Act of 2007 is currently before the US Congress and expected to pass sometime in 2008.

The bill was proposed by the AAN in response to concerns from its members that the anticipated onslaught of returning veterans with traumatic brain injury (TBI) who will ultimately develop PTE would outstrip the capacity of the Veterans Health Administration to adequately manage large numbers of such individuals.

"There was a great deal of concern among our members that much of this traumatic brain injury among returning vets was, over time, going to manifest itself in [posttraumatic] epilepsy and that the Veterans Administration [VA] was terribly unprepared for this," Mike Amery, who is the AAN legislative counsel at its Office for Federal Affairs, told Medscape Neurology & Neurosurgery.

Data from the Vietnam War show that 53% of soldiers who survived penetrating head wounds subsequently developed posttraumatic epilepsy, some up to 15 years later, says John Booss, MD, former national director, neurology service, Department of Veterans Affairs, who is also a member of the AAN Legislative Affairs Committee and a volunteer advocate for the proposed legislation.

Unprecedented Numbers of Closed Brain Injury

Dr. Booss told Medscape Neurology & Neurosurgery that in the current conflict, various factors, including Kevlar body armor and helmets, have made penetrating wounds — and specifically penetrating head wounds — much less common.

However, the widespread use of improvised explosive devices (IEDs), also known as roadside bombs, by insurgents in Iraq and Afghanistan, coupled with improved survival, is contributing to an unprecedented number of concussive closed head injuries.

The US government has cited national security concerns for not making an official total of the numbers of returning troops who have been treated for TBI publicly available. However, a position paper published earlier this year by the Brain Injury Association of America estimates that as of March 24, 2007, a total of 12,274 US service members have sustained a TBI in either Iraq or Afghanistan but projects this number "could grow as high as 150,000."

Other estimates assert that 22% of all returning service personnel have some form of TBI, 69% of whom were injured by roadside bombs, rocket-propelled grenades, and other blasts. TBI screening, which began in August 2007 at the National Naval Medical Center, showed 83% of wounded Marines and sailors had brain injuries.

Although the US Department of Defense supports mass TBI screening for all returning troops, currently it does not have the resources or a standardized screening process in place.

Exactly what proportion of brain-injured soldiers will subsequently develop PTE is uncertain, but according to Dr. Booss, it is likely to be significant. He points out that even "mild" TBI can trigger subsequent epilepsy.

"In the civilian sector, the rate of epilepsy from closed head injuries is somewhere just under 5%. In the military, it ranges from about 6% to 14%, but in all candor, at this point we simply don't know," Dr. Booss said.

"What we do know is the [Veterans Health Administration] is not prepared to handle an influx of veterans with TBI, a significant percentage of whom will develop epilepsy. However, this is something we believe this legislation will remedy."

Enormous Research Need

If passed, the bill will establish 6 epilepsy CoEs strategically distributed around the country. Through a competitive process, healthcare facilities affiliated with an academic research center would be invited to submit proposals for consideration by an expert peer-review panel that will assess their scientific and clinical merits.

Under the legislation, each center would receive $1 million per year for 4 years, with a mandate to conduct research, education, and clinical care activities. "This is really just seed money to get the centers started," said Mr. Amery. "The real money will come from grants and the participation of other research institutions and foundations."

According to Dr. Booss, there is an "enormous need" for TBI research with respect to both post-TBI sequelae, including epilepsy, and the psychosocial integration aspects of these injuries.

Many veterans, he said, have masked brain injuries and require systematic screening

Once a world leader in epilepsy research, the Veterans Health Administration saw funding for epilepsy research and care dry up during the mid-1990s as an unintended consequence of a major reorganization of the VA health care system..

"The VA epilepsy centers literally went from a position of international leadership to, in many instances, falling below community standards. As a result, many were shut down or saw services dramatically cut," said Dr. Booss.

Funding Stability Critical

The aim of the current legislation, said Dr. Booss, is to create a permanent, nationally organized hierarchy of care so that no matter where a veteran lives in the United States there will be a network of referral centers affiliated with a regional epilepsy CoE.

According to Mr. Amery, the model for the epilepsy CoEs is based on similar CoEs for Parkinson's disease (PD) and multiple sclerosis (MS) that have been established over the past 4 to 6 years and been successful.

However, there was a potential threat to continued funding with these centers. As a result, last year the AAN, along with other organizations, including the Parkinson's Action Network, the Paralyzed Veterans of America, and the National Multiple Sclerosis Society, successfully lobbied to have legislation passed that would permanently authorize funding.

Dr. Booss said the same must happen with the epilepsy CoEs. "The MS and PD centers of excellence were set up during my tenure [at the Department of Veterans Affairs], but there was no permanence associated with their establishment. We were very concerned that given other priorities, they might be allowed to wither or become victims of cutbacks, so the AAN mounted an effort to put into law permanent authorization of these centers, and the president signed the bill in December 2006," he said

"Funding stability is critically important to attracting the type of high-caliber researchers, clinicians, and educators that will ensure success of these centers. It is my hope that the epilepsy centers will also be permanently authorized by law," he added.

Spillover Effect

Rep. Ed Perlmutter, a Democrat from Colorado and the bill's sponsor, told Medscape Neurology & Neurosurgery that as the father of a young woman with epilepsy he has a personal interest in ensuring the legislation passes as quickly as possible.

A coordinated national approach to TBI and subsequent PTE, said Rep. Perlmutter, will ensure high-quality care for returning veterans. In addition, the mandated affiliation with established research institutions will benefit the larger epilepsy population; it is estimated that 3 million Americans, or 1% of the US population, has some form of epilepsy.

"The research and resulting medical advances will help the men and women who are serving our country and will also be very helpful to the [general] epilepsy population," said Rep.Perlmutter.

For more information visit www.aan.com/go/advocacy.

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