My mom was a waitress. A single parent, she took great pride in saying to her kids, “I work. I put food on the table. We don’t need help.” While we struggled, she never sought out welfare, working double shifts to get by. But the truth is, we did get help: We were absurdly fortunate to be just poor enough to qualify for Pennsylvania Medical Assistance — Medicaid — and it saved us from medical poverty.

In 2000, when I was 14, I was diagnosed with anorexia nervosa. At 5-foot-4, I weighed in at 92 pounds, my organs were failing, and I required immediate in-patient care. My pediatrician sent me to a residential hospital in Philadelphia, one of the only ones in the state staffed to treat eating disorders. Each day that I spent there cost more than $2,000, totaling $60,000 before I could be released.

A year later, when I was 15, I needed gallbladder removal, an emergency procedure that would have cost us $17,000 had Medicaid not covered the bill. Then, during the week of my high school graduation, my appendix ruptured, another random surgery with a steep bill of $20,000. All told, within five years, my teenage medical expenses would have cost my family more than $100,000 without Medicaid  —  or the entirety of what my mother earned in 10 years.

Working in food service, my mother never earned more than $15,000 a year. There’s no way on earth she could have paid for those bills. No way.

While in college, I was kicked off of Medicaid when I turned 20 years old, and I was fucking terrified. All the time. Overnight, I became a member of uninsured America, living off a college student stipend of $3,000 a year.

Knowing full well the sticker price for basic procedures — how much a midnight trip to the emergency room “just to make sure” can cost — I could never explain to my peers how fortunate they were to take their health care for granted. I could never explain to my college boyfriend how lucky he was to be able to just go see a doctor whenever he wanted or needed  —  and likely the best doctors his parents could find in the state of New York. He never quite understood the panic I felt at every upset stomach or why I didn’t participate in the sports I had loved in high school for fear of blowing out my knee or my elbow. Or why my ongoing fits with chronic neck pain weighed over my head like a black cloud. Why I had to go so long without seeing a dentist. Even why I couldn’t afford birth control pills.

And, yes, I would later learn I suffered from complications I let go completely undiagnosed and untreated while in college. But them’s the shakes.

According to the Centers for Disease Control and Prevention, 28 million Americans lacked health insurance last year. The Congressional Budget Office projected that under the American Health Care Act narrowly passed by the House of Representatives, 23 million more Americans would be uninsured by 2026. The Senate plans to vote on an updated version of the bill in the next week. Many politicians from both parties insist this is not an affordability crisis but a massive lapse in personal responsibility.

I have been astonished by the insensitivity and ignorance demonstrated by those whose employment it is to enact health care policy. Soon-to-be former Utah Congress member and House Oversight Committee Chair Jason Chaffetz went on CNN’s New Day to defend the American Health Care Act, and he had this to say: “Americans have choices. They’ve got to make a choice. So rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own health care.”

Only in the absurd scenario in which millions of Americans develop the odd habit of freebasing their smartphones could this argument make any sense. At $800 retail value, a new iPhone costs next to nothing compared to the high premiums and deductibles many Americans face.

It’s not just Republicans who don’t get it. When the Obamacare bill passed in 2010, Vice President Joe Biden called it a “big f–king deal.” In 2013, Senate Minority Leader Nancy Pelosi called the rocky rollout of the market exchanges implementation “fabulous.”

But for the millions of uninsured who would remain uninsured through the Obama administration, the Affordable Care Act ultimately did little to make care affordable. For those trying to get by without insurance they were no better positioned to afford, the self-congratulation among Democrats only rubbed salt in their untreated wounds.

Obamacare universalized the expectation of insurance, not the provision of care. While it provided subsidies, for too many people these proved woefully inadequate to cover the typical costs of premiums, copays, and deductibles. It did not require coverage of dental care, and though it did require some mental health coverage, it was often insufficient.

Worse, it posed a new tax on the working class: the ludicrously named “individual shared responsibility payment,” a $695 penalty for the crime of being unable to afford private insurance. Many blue-collar men I know begrudgingly paid what they called the “Obama tax,” not because they preferred to be uninsured but because the penalty was cheaper than any market premium available to them.

For people who never experienced a gap in insurance, the fear of medical poverty is hard to appreciate. Today I’m a graduate student at Harvard and have, at least for now, incredible health insurance. Amazing. I have access to world-class doctors at very little cost. I have the privilege of yearly physicals, eye exams, and dental checkups. I make sure my blood tests, cholesterol, and weight are perfectly in line with every medical standard. I floss. And every month when I pick up my prescriptions, I am relieved to know I pay a $62 copay for drugs that would cost me without insurance more than $500 a month.

But I still remember how it feels not to have this privilege. Living in America without insurance brings with it the kind of fear that makes you avoid taking the bus because you fear catching a cold, which might turn into a respiratory infection, which could then become a stubborn pneumonia requiring an overnight hospital stay, which can cost the equivalent of several months’ rent.

Because when you’re already skipping medications to feed yourself, every cough threatens such morbid calculation.

I fear I may never escape the fear of medical poverty. In 2011, through no fault of her own, my mother lost her job as a manager when the Borders bookstore chain shuttered, stranding her as a woman in her late 50s without insurance or emergency savings. She would spend the next 18 months searching for a job that would again offer her medical coverage. Our evening phone calls always began with a silent prayer on my side that no new pains had emerged in the night, cascading into fears of cancer, heart disease, and diabetes — or what I called mom’s constant threat of a “diacancer” attack. With years left before she qualifies for Medicare, I live in fear her again losing her job and finding herself a diacancer attack away from complete insolvency.

But this problem strikes everyone, not just the middle-aged. In 2012, two years after the Affordable Care Act became law, my 30-something roommate’s insurance lapsed. For months, she languished between enrollment periods. And while she searched for a new plan that she could afford on her income of exactly zero dollars as a graduate student, she expressed a familiar anxiety. She feared she might any day be struck down by some random malady and forced to add a mountain of medical debt on top of her already sizable student loans. Like me, she let things go untreated, suffering much in silence. Every night in the kitchen as we bid each other good night, I’d make a faint-hearted joke celebrating her making it through another beautiful day without an appendectomy.

I originally wrote this piece about medical poverty as a blog entry in 2012, in that apartment, inspired by her anxiety. With five years to reflect on it, I am saddened to admit that little of our collective situation has improved. Like thousands of other millennials, I organized for Bernie Sanders, hoping that his promise of Medicare for All would resonate with anyone who knew what it meant to be living under the very real terror of medical poverty, unable to afford even Obama’s subsidized insurance. But instead, we were dismissed, told by the winning candidate not to get our hopes up because a single-payer solution would “never, ever happen.”

For years, working-class families have been screaming that they cannot survive under a for-profit system that seemingly only works for insurance and pharmaceutical executives. They demand not tax cuts for the rich or deprivation for the poor but a health care system that works for everyone. But to hear representatives from both parties talk about why the poor aren’t insured, you’d think they were listening to an entirely different America than the one I know. You might think, as I do, that they aren’t listening at all.

Holly Wood is a socialist feminist and a PhD candidate in sociology at Harvard University.

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