The Vietnam War veteran from Northern California had been suffering from seizures for nearly 40 years after military service before he sought out treatment from one of the new VA Epilepsy Centers of Excellence (ECoE) in San Francisco. Clearly, he had post-traumatic epilepsy, said Karen Parko, MD, national director of the ECoE and associate clinical professor of neurology at the University of California, San Francisco, in an interview with Neurology Today.
But when she met the 63-year-old at an Epilepsy Foundation conference two years ago, he told her he refused to seek out care at the VA because he had a deep-seated mistrust of the system. Dr. Parko convinced him to try the ECoE, one of 16 centers in four regions — Northeast, Northwest, Southeast, Southwest — established two years ago by Congressional mandate; he underwent an epilepsy surgery to remove blood vessels and tissue and has been seizure-free since.
“He'd gone years receiving good care [through his employer's insurance] but did not think to go to the VA and was not being offered a surgical option because he lived in Northern California where there is not an epilepsy surgery center and thus many patients are not referred for surgery.”
Changing that stigma about the VA is deeply satisfying, Dr. Parko said. So too, she added, is the mission of the ECoEs — “to offer veterans anywhere in the US the kind of epilepsy care that is usually only available at a level IV epilepsy center,” which includes more complex forms of intensive neurodiagnostics monitoring; extensive medical, neuropsychological, and psychosocial treatment; a complete evaluation for epilepsy surgery; and a broad range of surgical procedures.
We treat 8.3 million veterans at the VA at present, Dr. Parko said. About 85,000 of those veterans are diagnosed with epilepsy or seizures, and about 75 percent of them are 50 years and older, many are veterans with traumatic brain injury (TBI) from their military service in Korea, Vietnam, and even World War II.
Although no numbers are available yet, Dr. Parko said, the ECoEs are beginning to see increasing numbers of returning veterans from the Persian Gulf wars. “Traumatic brain injury is usually a life-long chronic problem,” she said. Epilepsy may not show up right away, she explained, noting that a recent report from the Vietnam Veterans' Head Injury Study showed that about 12 percent of veterans developed post-traumatic epilepsy more than 14 years after their injury.
Outreach and education about the ECoEs is an important initiative, said Aatif Husain, MD, Southeast Region Director of the ECoE and associate professor of medicine (neurology) at Duke University.
“We want to improve the care in the ECoE, but also improve care to the primary care providers, the smaller VA hospitals and the community-based clinics because most of the veterans are not being treated in the large centers — but at the local level by primary care providers.”
Using video teleconferencing, the ECoEs hold live meetings — which are also recorded and available for viewing at any time — to discuss symptoms and therapies for post-traumatic epilepsy and psychogenic seizures, for example. Educating primary care physicians about what to look for and refer — especially given the latency period that may exist with many of these conditions — is one of the program's goals.
In San Antonio, efforts are focused on increasing awareness for patients with TBI, said José E. Cavazos, MD, PhD, site director of the San Antonio ECoE and director of epilepsy at the Audie Murphy Veterans' Administration Hospital. “If individuals do not have a bed partner, for example, they may have seizures at night and nobody would tell them. If they have unexplained injuries in bed or if they have unexplained lapses of time, [they should be aware that] this may represent seizures,” added Dr. Cavazos, who is also director of education and research of the South Texas Comprehensive Epilepsy Center and a professor, clinician and researcher in neurology and pharmacology at the University of Texas Health Sciences Center, San Antonio.
“We are seeing a lot of patients with post-traumatic spells of various types — some of them end up having epilepsy; some of them end up having non-epileptic seizures,” Dr. Husain said. It is “very, very important” to be able to differentiate the two in order to be able to provide better care.
The Southeast ECoE region is spearheading a project to standardize patient histories and notes, “with the hope of creating a database of epilepsy patients that is going to be searchable for certain particulars about an individual's disease” in order to allow large volume review of patients, as well as to improve research opportunities, Dr. Husain said.
The Southeast ECoEs are also trying to improve information technology transfer from studies — mainly EEGs — “transferring the entire picture into the medical record and not just the report,” Dr. Husain said.
Video teleconferencing, Dr. Parko said, is also allowing the ECoEs to treat people at very rural sites. For example, in San Francisco, she said, we see patients from northern California near Oregon, and determine whether or not they need more advanced care — even if there are no neurologists in their area. If it's a relatively well-controlled case, we act as a support for the primary care specialists — to whatever extent they deem necessary, given their level of experience with epilepsy care. Or, she said, if we get somebody who is uncontrolled, “or if we can say right away that it's a focal seizure and this patient might be a surgical candidate, we send him or her down to San Francisco at no cost to get care.
“Every site in the US has the capability to provide telemedicine with video-conferencing and that's our main clinical goal, to have an expert network and care available to everybody everywhere,” Dr. Parko said.
THE BACK-STORY BEHIND THE EPILEPSY CENTERS OF EXCELLENCE
“As early as 1972 the VA recognized the need for VA health centers that specialized in epilepsy,” said John Booss, MD, professor emeritus of neurology and laboratory medicine at Yale University, when he spoke on behalf of the AAN before the Senate Committee of Veterans' Affairs in 2007. Since one of the sequela of TBI are seizures, Dr. Booss wrote in an e-mail to Neurology Today, it seemed the natural basis to advocate for a nationwide system of care for veterans with epilepsy.
The timing, he said, was also appropriate “as the scandalous conditions under which some of the injured soldiers were housed at Walter Reed Army Medical Center had been brought to the public's attention.” While these conditions were not related with the issues at hand — epilepsy and TBI — they did raise “national consciousness of the medical needs of active duty service members and veterans,” he said, which — along with the congressional support — allowed the bill to succeed. (For more information on the passing of the bill, see “The Anatomy of a Successful Campaign”: http://bit.ly/oje3va.)
The next step, Aatif Husain, MD, Southeast region director of the ECoE and associate professor of medicine (neurology) at Duke University said, was a competitive application process requested by congress. In order to apply, each center already had to be a comprehensive epilepsy facility that could network within its region, and could offer comprehensive care and outreach to patients with epilepsy, Karen Parko, MD, national director of the ECoE said.
The VA central office encouraged individual regions to apply — so there are three to five centers within each region, Dr. Husain said. Each region had to have a polytrauma center, where all the injuries — in particular, the head injuries — go initially, in order to “really focus [the ECoE] on post-traumatic epilepsy,” Dr. Husain said.
The centers of excellence were then established with the following goals: to provide the best possible epilepsy care to veterans throughout the US using state-of-the-art diagnostic and therapeutic services, to deliver the highest quality of continuous medical care to veterans suffering from epilepsy, and to promote outreach and educational efforts for both patients and their physicians.
For more information on the ECoEs, visit: www.epilepsy.va.gov/ecoe.asp.