Nora Leitner, 12, takes her morning medications while her mother Kina, right, looks on at their home in Yardley, January 21, 2007. The medications Nora takes are designed to control her epilepsy. (Photo: Ryan Donnell / The New York Times)
In the past year, I spent approximately $5,128 to suppress my neurons from spontaneously firing at odd angles across my left temporal lobe, setting off waves of ethereal light and frantic convulsions, delivering a shadowy vision of my own death or a long-buried memory from childhood, knocking me to the ground in the midst of a workday and profoundly disrupting my life.
I live with epilepsy, a disorder that takes as many lives as breast cancer every year and increases one’s chances of sudden death by 24 times, compared with the general US population. Fortunately, I also live with decent insurance.
Had I lacked that coverage, my last year of treatment would’ve cost me tens of thousands of dollars. For a person with more severe epilepsy, that number could skyrocket into the hundreds of thousands, greatly exceeding most Americans’ range of affordability. The Affordable Care Act doesn’t eliminate the problem: Because 26 states have rejected Medicaid expansion, many of the poorest people are left in the lurch - or the emergency rooms, where they’re usually treated in a hurry, without follow-up. A post-seizure ER check-in simply won’t do the trick for epilepsy patients, who need a consistent, monitored regimen that will prevent them from having seizures in the future.
Moreover, plenty of folks who have insurance still miss the epilepsy treatment boat. Paying $5,128 is rough on my bank account. But for many, that sum - steep copays plus high-priced brand-name drugs - could mean forgoing adequate treatment, endangering their health and their survival.
Epilepsy’s socioeconomic disparities aren’t confined to the issue of health insurance. Even poor people who have insurance are likelier than higher-income people to have epilepsy, and their seizures are more likely to go uncontrolled. Recent research indicates that African-Americans with epilepsy are also at higher risk. Although high-quality medical treatment for all would mark an immense step toward epilepsy progress, drugs, doctor’s appointments and surgeries clearly aren’t the only variables in the recovery equation.
This reality hit home for me in December 2012. In the wake of a car accident, my seizures re-erupted, rendering me neurologically scrambled, headache-ridden and barely able to leave the house. Although I underwent a flurry of tests resulting in a boosted prescription (which I was able to fill thanks to my aforementioned decent insurance), it became clear that I also needed to re-evaluate the way I led my life. At this point, I was sleeping about three and a half hours per night, and spending most of the remaining 20.5 hours biting my nails over a vast inventory of problems, both real and imagined. Stress and intense worrying can trigger seizures, especially when the worrier is beset with fatigue. Consequently, after some inward squabbling, I took a several-weeks-long medical leave from work.
During that leave, I was able to retain my benefits and was guaranteed a job upon my return. Meanwhile, I adjusted to my new medication regimen, confronted my seizure triggers head-on, modified my diet, and slept, and slept, and slept. Gradually, my flare-ups eased.
For stress-related conditions like epilepsy, true recovery requires mental and physical space. This is especially true for people living in poverty, for whom severe psychological strain tends to be the norm. (An author of a recent Princeton study on the topic told The Washington Post, “Picture yourself after an all-nighter. Being poor is like that every day.”) Structural racism, too, has been widely shown to take a palpable physiological and psychological toll. In a recent, highly publicized study in Sociological Inquiry, five times more black participants as white participants experienced emotional stress, and six times as many experienced physical stress.
The very poor also suffer a “sleep disparity”: They’re much less likely to get a good night’s rest. Sleep deprivation, in turn, increases vulnerability to seizures. Most low-income people, of course, can’t reduce their hours or take time off to recuperate - especially if they’re forking over extra cash for essential medication and treatment. Sleep, relaxation, nutritious food and time to think aren’t covered by any insurance plan.
November is National Epilepsy Awareness Month. Periods of time named after medical conditions tend to evoke images of 5k walk/runs and color-coded campaigns aimed at striving for a “cure.” (Purple is epilepsy’s color, and I am sporting it right now.) We race for cures for HIV, breast cancer, brain cancer, diabetes, ALS, sarcoma, epilepsy ... you name it.
But we should also think deeply about who benefits from those cures, once we cross the finish line. I wouldn’t have been able to take on the challenge of confronting my seizures in the past year without the advantages of a savings account, an acceptable insurance plan and a very understanding workplace. As Epilepsy Awareness Month winds down, let’s resolve to expand our definition of “awareness,” taking on the class-based obstacles to seizure management - the persistent disparities that block the path toward lasting health for all.
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Maya Schenwar is Truthout’s editor-in-chief and the author of Locked Down, Locked Out: Why Prison Doesn’t Work and How We Can Do Better. Follow her on Twitter @mayaschenwar.
Previously, she was a senior editor and reporter at Truthout, writing on US defense policy, the criminal justice system, campaign politics, and immigration reform. Prior to her work at Truthout, Maya was contributing editor at Punk Planet magazine. She has also written for the Guardian, In These Times, Ms. Magazine, AlterNet, Z Magazine, Bitch Magazine, Common Dreams, the New Jersey Star-Ledger and others. She also served as a publicity coordinator for Voices for Creative Nonviolence. Maya is on the Board of Advisors at Waging Nonviolence.