Epilepsy Empowerment Roundtable Shines a Light on Challenges with Epilepsy

by Lisa Boylan, editor, epilepsyUSA

On the morning before the historic National Walk for Epilepsy, Epilepsy Foundation President and CEO, Eric Hargis, moderated an Epilepsy Empowerment Roundtable at the National Press Club in Washington, D.C. Joined by a panel of leading health care professionals (HCPs), patients, caregivers and celebrities in the epilepsy community, the discussion centered on challenges uncovered by a recent national survey indicating gaps in patient-physician communication, medication-related side effects and low public awareness of epilepsy. The event was co-hosted by National Walk partner Ortho-McNeil Neurologics.

Hargis introduced panel member, Greg Grunberg, star of NBC’s hit series Heroes, noting, “people with epilepsy really need a hero.” Grunberg has tirelessly lent his name recognition to raise awareness about the condition on behalf of his son, Jake, who was diagnosed with epilepsy when he was 7 years old. Other panelists included Epilepsy Foundation professional advisory board members David Labiner, M.D., of the University of Arizona, Mark Spitz, M.D., of the University of Colorado, Georgia Montouris, M.D., of Boston Medical Center, Geoff Pope, cornerback with the Super Bowl Champion New York Giants, Kelly Richards, mother of Carly, an Expressions of Courage art contest winner and epilepsy patient and Caitlin Purcell, a 17-year-old high school student with epilepsy.

In response to the recent survey results, Hargis said, “It’s frustrating because the Epilepsy Foundation is an organization committed to research—committed to bringing new treatment options—and yet people are not always receiving the best care possible.” He cited the ongoing stigma associated with epilepsy, even though it is a common condition that affects more people than Parkinson’s, multiple sclerosis and cerebral palsy combined. He said the mystery, ignorance and fear that surround epilepsy affect every aspect of a person with epilepsy’s life, including interpersonal relationships and employment.

Hargis asked how we could get beyond the stigma associated with epilepsy. Greg Grunberg responded, “It’s all about talking about it.” Dr. Montouris concurred, saying that epilepsy needs to be brought out more in the open in order to eliminate stigma. She said it is important not to “fear epilepsy, but address the situation.” Panelist Caitlin Purcell wanted everyone to know her epilepsy is “not as bad as it seems.” Even so, she said other kids were still afraid of her and scared about what might happen if they were out with her and she had a seizure. She is strongly focused on getting the word out and being honest with her friends about her condition, in the hopes that full disclosure will lead to a better understanding.

Another survey finding revealed that seventy-five percent of patients experience side effects with their medication that have a major impact on their daily lives, but they are not discussing them with their HCPs. The panelists emphasized that patients need to be empowered because having seizure freedom with side effects is not a reasonable tradeoff. Dr. Montouris said, “The patient has to take the role—this is your life, this is your body.” She added, “How many seizures are too many? In my book, one.”

HCPs as well as caregivers and patients all agreed that being your own advocate and being informed about all of the treatment options are essential. All of the HCPs encouraged patients to seek a second opinion if they are not happy with their treatment, and assured them that seeking a second opinion will not hurt the HCP’s feelings; it’s about finding the best treatment for your condition.

In wrapping up the discussion, Hargis asked what was on the horizon in the field of epilepsy. The HCPs encouraged further clinical trials in order to advance new drugs in the pipeline. They also stressed that everyone with epilepsy, regardless of socio-economic status, should have the same access to care. Dr. Labiner noted that as more and more people develop epilepsy at all different ages, people will become more aware of the disorder. He said, “It is a problem that spans the ages.”

After the roundtable, Grunberg and Geoff Pope patiently signed autographs for the kids—and adults—in the audience and posed for pictures. Caitlin Purcell’s father stood proudly on the sidelines watching his daughter mingle with the crowd. He said, “I’m really happy that she gets the opportunity to see she is not alone. I think that’s an important thing for all of the patients with epilepsy to understand—they are not alone. The stigma has got to be overcome.”