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Why Health Care Isn’t Just About Insurance

As Epilepsy Awareness Month winds down, let’s take on the class-based obstacles to seizure management.

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.

Help us Prepare for Trump’s Day One

Trump is busy getting ready for Day One of his presidency – but so is Truthout.

Trump has made it no secret that he is planning a demolition-style attack on both specific communities and democracy as a whole, beginning on his first day in office. With over 25 executive orders and directives queued up for January 20, he’s promised to “launch the largest deportation program in American history,” roll back anti-discrimination protections for transgender students, and implement a “drill, drill, drill” approach to ramp up oil and gas extraction.

Organizations like Truthout are also being threatened by legislation like HR 9495, the “nonprofit killer bill” that would allow the Treasury Secretary to declare any nonprofit a “terrorist-supporting organization” and strip its tax-exempt status without due process. Progressive media like Truthout that has courageously focused on reporting on Israel’s genocide in Gaza are in the bill’s crosshairs.

As journalists, we have a responsibility to look at hard realities and communicate them to you. We hope that you, like us, can use this information to prepare for what’s to come.

And if you feel uncertain about what to do in the face of a second Trump administration, we invite you to be an indispensable part of Truthout’s preparations.

In addition to covering the widespread onslaught of draconian policy, we’re shoring up our resources for what might come next for progressive media: bad-faith lawsuits from far-right ghouls, legislation that seeks to strip us of our ability to receive tax-deductible donations, and further throttling of our reach on social media platforms owned by Trump’s sycophants.

We’re preparing right now for Trump’s Day One: building a brave coalition of movement media; reaching out to the activists, academics, and thinkers we trust to shine a light on the inner workings of authoritarianism; and planning to use journalism as a tool to equip movements to protect the people, lands, and principles most vulnerable to Trump’s destruction.

We urgently need your help to prepare. As you know, our December fundraiser is our most important of the year and will determine the scale of work we’ll be able to do in 2025. We’ve set two goals: to raise $150,000 in one-time donations and to add 1,500 new monthly donors by midnight on December 31.

Today, we’re asking all of our readers to start a monthly donation or make a one-time donation – as a commitment to stand with us on day one of Trump’s presidency, and every day after that, as we produce journalism that combats authoritarianism, censorship, injustice, and misinformation. You’re an essential part of our future – please join the movement by making a tax-deductible donation today.

If you have the means to make a substantial gift, please dig deep during this critical time!

With gratitude and resolve,

Maya, Negin, Saima, and Ziggy