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.
Copyright, Truthout. May not be reprinted without permission.
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.
No comments:
Post a Comment