I don’t really remember what accessing insurance was like before Obamacare. As a child, I wasn’t paying attention—my family was covered through my dad’s work, and the Affordable Care Act (ACA) became law while I was in college. Because my family had health insurance, I grew up not worrying about how we’d pay for unplanned health events—the sprained ankle that needed an X-ray just in case, a bout of bronchitis that required antibiotics, and most importantly for me, the diagnosis of my bipolar disorder at age fourteen. As an adult, I’ve had the good fortune of a job that offers health insurance benefits. Because I’ve always had coverage through an employer, I’ve never had to worry if my disorder would exclude me from getting insurance, as it did for the millions of Americans with pre-existing conditions before Obamacare.
An estimate from the US Department of Health and Human Services from 2011 calculated that between 50 and 129 million non-elderly Americans have a pre-existing condition. Before the ACA, which made insurance discrimination based on pre-existing conditions illegal, all of those people could have been denied insurance in the private marketplace. During this time, those seeking insurance from private insurers (not through their jobs) could be refused coverage for having a pre-existing condition. These conditions covered a wide range of health problems from diabetes to cancer to mental illness as well as injuries that would require surgery and physical therapy. Basically, you could get health insurance until you actually needed it. Even in the workplace, where employees could more reliably get health insurance through their jobs, an employer might reject a prospective employee if they suspected that the person’s pre-existing conditions might drive up the company’s premiums. If you lost your job, went without insurance for a while because you couldn’t afford it, and then got hired, your new employer could delay the onset of coverage.
Before the ACA passed, the anxiety of not finding a job after college and subsequently not having health insurance weighed heavily on me. Any private provider would refuse to insure someone with bipolar disorder. We’re high-risk, expensive patients; insurers read “bipolar disorder” and think immediately of hospitalizations and medications and psychiatry appointments. Without the assistance of insurance, I knew I wouldn’t be able to afford to pay full price for my treatment. Those medications keep me tethered to reality and steady my moods; they offer a stability that took many years to gain. Remembering my life right around the time my psychiatrist settled on a diagnosis, I shudder to imagine the disastrous effects my job, my apartment, my relationship, my friendships were those symptoms to return.
They started small—or not so small, thinking about it now—with a leaden ball sitting in my chest, right beneath my sternum. Heavier and heavier with each passing day, the weight both unbearable and completely numbing all at once, I looked for an escape through self-mutilation, retreating to my bedroom. Isolated and locked in my own mind, I used the needle of a geometric compass—the dull point leaving long, rough scrapes along my forearm. Once someone noticed the red marks poking out from my sleeve, I ended up in a whirlwind of psychology appointments. But the depression deepened, wrapping its thick, constricting arms around me. My psychologist, recognizing that fantasies of suicide were consuming my thoughts, referred me to a psychiatrist, who prescribed an anti-depressant. It kicked up a mania like an electrical storm, my latent bipolar disorder crackling around me like static.
Bipolar disorder, formerly known as manic-depression, is aptly named. Those with the disorder experience alternating periods on two ends of a dark spectrum: depression—whose paralyzing feelings of hopelessness spread through me like a poison—and mania—marked by racing thoughts, delusions of grandeur, hyperactivity, and euphoria. Usually these two opposites take turns hijacking a patient’s life for months at a time. But in some variants of the disorder like my own, changes in mood can cycle rapidly in a matter of just weeks or even days, known as rapid cycling. One morning after several nights of little sleep, I began cleaning out my entire closet, rushing to pull boxes from shelves and yanking clothes from hangers, convinced I could accomplish the task within a couple of hours. By that evening, I lay on my bed, restrained by my melancholy and surveying the half-empty boxes strewn about, shirts dangling limply like dead fish hung to dry. But through years of diligently taking my medication, going to my appointments, and meticulously tracking my moods in a daily journal, I learned to manage my sleep cycle, detect the warning signs of an oncoming episode, manage the bad days, and celebrate the good ones.
Twelve years have passed, and although my moods have smoothed out, I still have bipolar disorder. There’s no curing it; there’s no leaving it behind. Like the scarring from my cutting, I carry it with me, wherever I go. It’s something I monitor, checking my moods the way someone with diabetes might check their blood sugar. Most days, I’m confident that I can go episode-free for months or even years at a time, but that self-assuredness relies on taking my medications.
The ability to get my meds has come under threat after Donald Trump was elected president: Republicans finally controlled both the executive and legislative branches of the federal government. For eight years, ever since the ACA’s passage, Republicans have promised to repeal it as soon as possible—after the election, they could at long last “repeal and replace” the “disastrous” law. The media speculation became almost frantic, every pundit and expert speculating on what a Republican health plan might include. Some predicted that the protections for pre-existing conditions might be stripped entirely or those patients would be herded into high-risk pools with higher costs and premiums. The barrage of frenetic reports made my heart race. What would happen if I lost my job and had to face that reality that no insurer would take me? Or even if did get roped into a high-risk pool, would I be able to afford my pills?
To get my prescriptions refilled, every month I visit a squat office building tucked into 14th Street to see my psychiatrist, Dr. Weiss. He’ll greet me, his small eyes twinkling under thick black-rimmed glasses and shining bald head, and we will review how I’ve been the last month, discuss any medication changes, and schedule an appointment for next month. He’ll send the prescriptions electronically to be delivered by my insurer’s mail-order pharmacy. Through insurance, I pay about $25 for a 90-day supply of all these drugs combined. For retail price, I’d pay anywhere from $249 to $347. Before we even enter his office, I pay him a $20 copay for the 10- to 20-minute visit. If I didn’t have health insurance, it’d cost me around $600. Even then, it’s unlikely an office would let me make an appointment without an insurance card in my hand—the magic pass into the world of health care.
Without insurance, the medications and appointments each month would cost almost as much as my rent, which already comprises a sizable portion of my income. Even in a high-risk pool, coming up with the money could be a true hardship. Without my medications, the metal ball would settle once again in my chest, followed by night after night of insomnia and racing thoughts. My skin would grow jumpy and irritated; I’d want to crawl out of my own skin, like caffeine jitters that won’t stop. I could spin in circles in my desk chair at 2 AM, my mind brimming with impossible possibilities, only to crash the next day in a fit of despair.
Watching the drama unfold in the news, I feel like I’m standing on the precipice of a vast horizon, watching as the sun sets on the protections I’d taken for granted. The bill that was released earlier this month after frantic anticipation, the American Health Care Act, will continue to protect those with pre-existing conditions, but the bill has been declared “dead on arrival” by both conservatives and liberals alike. What a new draft—if one even comes along—might look like remains murky. In the midst of uncertainty, I’m staring into the dusk, not knowing when night will fall or what it might bring.