A secret scream rings through America. It rings down the sterile fluorescent hallways of our hospitals. It rings over our rural towns and our Native reservations. It rings through our prisons, the bellies of our great American cities. It rings in our farms and our fields, our streets and our sewers, our bodies and our blood, and we are cursed to never hear it clearly until, at last, we realize it has been our own mouth screaming, and we are lost. A child born today inherits in that secret a new American squalor, the skeletal remains of the American cities, the bleached bones of the American suburbs. This secret is a birthright of continual exploitation, pumped for labor and drained of cash and then punished for the resulting suffering—punished for being hungry, punished for being sick, punished for being pregnant, punished for being poor, punished for being black or brown, for being queer, for being unlucky, for being.
At the base of that suffering is lodged a little truth, like a knot in the stomach: in America, sickness makes you poor; and poorness makes you sick.
This is a book about that relationship, and why it happens, and why it’s unnecessary and what we can do to fix it. The cosmic whirling of God’s great slot machine has not determined that some people are fated to suffer while others flourish. We have the resources to take care of everyone, and yet we refuse to do so. Your medical debt and medical bills are unnecessary, but we have chosen to make them necessary. These are structural problems with structural causes, and many of them share roots in how we pay for healthcare.
This is a book about healthcare and health finance. They are different. Healthcare is anything that helps you stay safe and healthy. It is a kind of freedom from, and within, your own body. Health finance is the method by which we, as a country, pay for that freedom, and by which we decide who gets to have it, and who doesn’t. Healthcare is more than what happens to you in the hospital. Healthcare is whether your home makes you sick or your food makes you sick or your environment makes you sick or whether you have enough money to afford the things that keep you healthy. In America, the structure of corporate health finance has convinced us that some people deserve healthcare, and some people don’t.
This is a book about that corporate health finance—about private insurance and private insurers. For a half century, they’ve convinced us that they are the only things that keep us—that could ever keep us—from the utter financial ruination of illness. They’ve sold us different inadequate insurance plans and persuaded us that this is a form of great liberty, while chipping away at our freedoms for profit, and holding our bodies and our children’s bodies hostage.
This is a book about single-payer healthcare, a health finance model in which we pool our abundant collective resources to provide healthcare to all people. It is a common model across the world. As we will discuss in this book, we have the potential not just to enact a single-payer program in America but to build the greatest healthcare program among any so-called developed country.
Here is my profession of faith:
I believe beyond any doubt that single-payer is demonstrably sound and eminently feasible. I believe a properly ambitious and well-structured single-payer program will do more than any other American social program of this generation to soothe the burns, to resuscitate the spirit, to nourish the moral will of the American people. I believe it will loosen the loathsome manacles of American health finance: an exploitative institution that profits by plundering from us our own bodily autonomy and that anchors a larger exploitation, that holds those whom we love as captive leverage to guarantee our servitude to abusive employers or domestic partners—to those who seek to dominate us both in the office and in the hospital.
I believe this nation owes its people, whose labor has created its rich banquet, the safety and agency of healthcare. I believe this healthcare is greater in scope than that which happens upon an operating table. I believe that housing, food, income, and more—the components of basic human dignity—are healthcare, and I believe our work is that of striving toward justice for all people; and I therefore believe—I have to believe—that single-payer healthcare is our moral imperative. Single payer is our tool. Single payer is our weapon. Single payer is our first step. But single payer, on its own, is not the goal.
This is a book about health justice.
Healthcare is personal. So I want to start this book personally by introducing two friends of mine, Steve Way and Kyle Kolich. They’re two guys about my age (I’m 30) who live in north New Jersey. They’re sweet, gentle people and probably the most charismatic pair of friends I’ve met in my entire life. They make me laugh until my face hurts, and we like watching pro wrestling together. They’re also being utterly broken by our American health system, and it’s keeping them from living their lives.
Steve has muscular dystrophy. The muscles and tissues that hold his body together are eating themselves. He’s doing pretty good, all things considered. He beat his original life expectancy of 18 and now probably has a long life ahead of him.
Steve needs a wheelchair to move and a ventilator to help him breathe. He also needs help getting dressed, going to the bathroom, eating, and other everyday functions. His family takes care of him, but Steve doesn’t want to be dependent on his parents for his whole life. He wants to move in with his girlfriend. But Steve can’t afford to hire a private personal medical assistant 24/7. I mean, who could?
In many parts of the United States, if you can’t receive care at home, you have to live in a nursing home (or an SNF, a skilled nursing facility). Nursing homes are private institutions for people who can’t live on their own, like people with disabilities and senior citizens with advanced medical needs. But many people do not want to live in a nursing home. Caregivers are massively overworked and deeply underpaid, and the result is often shallow, loveless care, with high rates of medical negligence. Nursing homes have been caught bribing judges to reduce their medical malpractice lawsuit damages, sending their own corporate officials to run for office (who then make it harder to file a malpractice case), or hiring their own lawmakers directly as employees.1 These are not good prospects for someone who needs medical care, nor for someone who wants to be permitted to live freely instead of being imprisoned in a warehouse. “Nursing homes are where [people like me] go to die,” Steve says.
Because Steve wants to avoid all of this, he needs Medicaid. Medicaid is an insurance program, funded jointly by federal and state governments, for people who don’t make much money and people with disabilities. Medicaid pays for much of Steve’s healthcare, and also a home-health budget, which he can use to pay home-health aides to come over a set number of hours a week and assist him around the house. Home-health aides help Steve move, cook, clean, refresh his meds, and stay healthy. They mean he can lead the life he wants to, like all of us do.
But not all state Medicaid programs pay for home health, and few of them pay for it in the same way. Paid or not, the work must be done. For most of his life, Steve’s family, especially his mother, has pitched in to take care of his health needs. Being able to receive care at home makes Steve incredibly lucky.
Getting Medicaid to pitch in took a long time. A few years ago, after a lot of phone calls, paperwork, appointments, and waiting, New Jersey Medicaid approved Steve’s request for home-health funding. Some people hire external home-health aides using Medicaid, but Steve was able to use this money to hire his mother so she could be compensated for some of her help. This took some of the sting out of her not being able to work as many hours as she might otherwise like to outside the house. Then came Kyle.
Kyle and Steve’s friendship started before they were born: Kyle’s mom and Steve’s dad have been friends since middle school. Kyle and Steve started hanging out and writing sketch comedy together sometime between high school and college.
Kyle decided to go to acting school in New York, then met his wife and settled in Astoria, Queens. A year later, his back gave out while he was putting groceries into the bottom shelf of his refrigerator. The injury kept him from his bartending jobs for a week, which (as most working people know) is a devastating amount of money to lose out on. It happened again—another back injury, another wageless week. Then things got complicated.
Kyle contracted parvovirus in his knee, which meant he racked up a substantial amount of medical debt and missed more work. While he was recovering, his wife, Rivera, a Canadian citizen who had just received her working papers after months of being prohibited from working in the United States, developed a kidney infection and had to be rushed to the emergency room. More medical debt—major medical debt. A mountain of debt that just about exhausted everything Kyle and Rivera had, and then some: a total bulldozing that took only six months from start to finish.
So Kyle and Rivera moved in with Kyle’s parents back in Jersey to save up money and pay off their debt. Since he lived just down the road, Kyle spent more time at Steve’s. This was good. They got to hang out, and Kyle would help Steve, meaning Steve’s mom got a break. One day, Steve turned to Kyle and said, “Man, you already help me take a shit. You might as well get paid for it.” Steve reallocated his home-health budget to hire Kyle, who now was paid to take care of his friend.
That’s a charming plot point. But it keeps getting worse. Both Steve and Kyle are getting squeezed in different ways by American health finance.
Steve has to fight for every hour of home health he gets. Originally, Medicaid approved him for 35 hours of paid home health. Steve needs much more than 40 hours of home health. He needs more than 50 hours of weekly home health. He’s a person, not a nine-to-five construction job.*1 After years of negotiating, that budget slowly rose—to 36, to 37, to 38. Eventually it was raised to 40, but nobody told Steve about it, and once he found out from an unrelated encounter with the Medicaid office, the payments weren’t retroactive.
To qualify for this home-health budget, a nurse comes to Steve’s house every four months. Her job is to confirm that Steve is “still” disabled. Both she and Steve understand that this is a useless interaction: Steve weighs maybe 45 pounds sopping wet—he’s not getting out of that wheelchair. But Medicaid wants to make sure he’s not trying to scam them, so he has to go through this process over and over and over again. Miss an appointment, mess up, or get the paperwork wrong, and Kyle doesn’t get paid.
Kyle needs this money to pay off his medical bills and, maybe one day, move back to Queens. He, too, would prefer not to live with his parents for the rest of his life (and his wife, I presume, would certainly enjoy a break from the in-laws). But Kyle is only paid 11 bucks an hour. He’s not even getting Steve’s full 40 hours a week, since Steve allocates part of his home-health budget to his mother and girlfriend, so they get essential compensation for the time they spend with him while Kyle wasn’t around.*2 Kyle ultimately had to take a second job in retail just so he could get health insurance—there’s a shortage of home-health providers in America, driven in part by how low the wages are, and people can’t even take care of their friends or loved ones without being punished for it.
And speaking of wages: Steve is a substitute teacher. I’ve never seen him teach, but I’ve seen him speak, and he’s good at it. If Steve wants to stay out of a nursing home, however, he is not allowed to work as many shifts as he’d like. The state of New Jersey has decided that home health is only subsidized for people…who make less than $2,000 a year! If Steve works more than a few shifts in a month, he becomes ineligible.
Here’s what this means: Steve has to hope he can keep jumping through incredible bureaucratic hoops if he wants to stay alive. People who want to help Steve are forced to drop out of the job market and receive appallingly low wages just so the person they love doesn’t die. Steve’s family has been punished by Medicaid, because two of its members, both Steve and his mom, can’t work, even though they both can and would like to.*3 And Kyle isn’t paid enough to pay off his own medical debt. Kyle has to choose between taking care of his friend and having his own health insurance. Nobody is happy. My friends are being hosed. All the reasons for it are arbitrary and degrading.
This anecdote isn’t meant to show how particularly unlucky Steve and Kyle are. They’re not. They’re regular unlucky. This is the American healthcare system working as normal: this is just what happens if you’re sick, or injured, or have a disability, or are poor, or are black or brown. The disability community uses the phrase “temporarily able-bodied” to describe people presently without disabilities. It’s a good term. No matter how healthy you are now, eventually something—a car you’re driving, a car you’re not, a slippery surface, a genetic mutation—won’t break your way. When that happens, you usually end up in debt, in a hospital, or trapped at home.
The problem isn’t that Steve and Kyle are unlucky. The problem is that to avoid their fates, you have to be extremely lucky.
Healthcare is personal, micropersonal even, because it happens both to us and within us. We’ve all felt hassled or harassed by contemporary American healthcare and health finance. I happen to know a little more than most people. In 2014, I wrote code to help find people to enroll in the Affordable Care Act (ACA) in Florida, Georgia, and Texas—all “Medicaid gap” states, in which folks fell in the gulf between ACA and Medicaid eligibility—and knocked on doors to talk to people in Orlando. There, I spent most of my time meeting people who just didn’t qualify for the ACA because their states didn’t expand Medicaid. They were too poor, or they were the wrong kind of poor. This broke my brain a little—how could these elected officials refuse to expand Medicaid and thus actively harm a lot of their constituents? Couldn’t the ACA still work somehow? It was so big and complicated! What was insurance, anyway? How can we make it work for everybody?
To learn more, I took a job in the insurance industry, building little tools for nurses to look at a map and learn who had diabetes and who didn’t, thinking the ACA could work if it just had the resources it needed.
I was wrong, humiliatingly wrong, absolutely wrong without fail, and this book is my attempt at penance.
I wanted to know more about these needs; I wanted to learn more about the brutal delta between the fantasy and the reality. I read papers, I read books, I did all the nerd shit, but that’s not enough to really understand how healthcare needs manifest. Health disparity is local. There is a world of difference between health needs in Boston, Birmingham, Brooklyn, and Boise. So I took to the road.
Over the past two years, I’ve driven around the United States in my 2002 Honda CR-V*4 as a healthcare justice speaker. I’ve spoken in almost every continental state, in big cities and small ones. I’ve met people who are fighting to get their communities what they deserve, I’ve met people who are just curious about how insurance works, I’ve met people who are winning major legislative battles, I’ve met people who have had great harm inflicted upon them. It is always the same, every morning on the road: I wake up and drive six hours, get to a new town, give my speech, and answer as many questions as I can. Then somebody walks up to me and shares with me the worst thing that has ever happened to them. I have become a library of the miseries of strangers. It is an honor to be trusted with such personal stories.
Through it all, I have seen such suffering.
I have been welcomed into families thrust into inescapable debt because of complications from pregnancy. I have met the children whose birth caused that debt, the children who were born into that debt, who will carry it all their lives—whose birthright is a tiny pair of manacles, forged within hospital billing departments.
I have sat with widows and widowers, people who watched those whom they love writhe in agony in hospital beds; who, out of love, spent everything they had to try to ameliorate that agony; who failed and who were failed; and who now carry themselves in both heartbreak and poverty.
I have met people who were born into bodies that suffer; I have wept in front of them as they share with me the depth of the dehumanization forced upon them, whose daily existence is a constant blaring reminder that they are not wanted, who are forced to make an occupation out of begging over and over again for basic help.
I have visited wealthy hospital campuses for wealthy hospital patients, virtual islands in the middle of their cities. I have visited the neighborhoods around them—black and brown neighborhoods systematically drained of capital and labor in a dance reminiscent of colonialism, who, too poor to receive care at the hospital, in many cases, made poor by the hospital and its growth and economic power, suffer and die much, much sooner than the people in wealthier neighborhoods just a few miles away.
I’ve visited rural towns and rural counties, where there are few doctors and fewer hospitals, where people watch friends and places slip away, where cratering home prices mean nobody can afford to leave and the job famine means nobody can afford to return, where suicide rates are high and car accidents, so far away from an emergency room, often mean death.
And, over time, I have felt my own body betray me. I have looked in the mirror and seen my own coming crisis. I myself am a sick man, heir to my family’s mental illness, and by it I am bedridden at least a quarter of the year. I have paced miles around my city block fearing the decay of my own temporary able-bodiedness and the wave of punishments—the punishments for the sin of being sick—in which I am eventually going to drown.
But it does not do justice to the people I’ve met to pornographize their suffering. It is insufficient to simply recite a litany of human pain. This book exists thanks to those who shared their suffering with me, in the long, long hope that we, together, can build the world in which nobody need suffer in the way they have.
But why does it happen? Why does American healthcare, which is a savior to so many, crush so many more under its heel? Why do bad things happen to good people—to whom bad things have already happened?
This is a book for people who have felt pushed around, knocked down, or fucked over by the American health finance system. This is a book that will attempt to explain why you can’t afford to go to the doctor, why your doctor can’t afford to see you, and who’s making money off your misery. It is a book for those who see this suffering burned into the mirror, or into the faces of the people they love, and who are sick as hell of the whole thing. This is, I hope, a book for everyone who wants something better.
My aim over the course of this book is to explain why all this came to be and why it happens the way it does. I’ll start with what we got: what co-pays are, for example; what insurance itself is; why healthcare costs increase so steeply; or why the few remaining rural hospitals and clinics close at such an alarming rate. Then, in part two, I’ll talk about both a) what we want instead, which is comprehensive, robust single-payer insurance in America—which you might know as “Medicare for All”—and b) the inadequate options we’re currently being offered.
But that’s only a fragment of our story. In the third part of this book, I’ll discuss how single-payer is only a smaller piece of our larger goal. I want readers of this book to understand that access to insurance only represents a small portion—approximately a fifth2—of the health inequalities in the United States. I want you to understand that most health disparity comes from things like inadequate or unsafe housing, inadequate or unsafe food, lack of income or lack of safety. And I want you to understand that these things don’t just “happen”—people don’t just “happen” to have nuclear waste buried in their backyards; poor people don’t just “happen” to live in crumbling death traps. These things are caused by structural poverty and structural racism, by patriarchal, economic, and racial domination.
Against these monsters, insurance alone is not enough.
So if we hope for a world in which nobody is made to suffer, in which people like Steve, Kyle, you, and me, and everyone we know, can feel safe inside our own bodies—we must expand our vision of the fight. We must conceive of the fight for single-payer as one among many in pursuit of health justice. We must fight the battles to help people who are suffering now, and, with those victories, create the scaffolding of a single-payer movement aimed toward health justice. The history of the fight for health reform tells us that we can afford nothing else.
*1 Jersey’s Medicaid program had just decided that, for Steve, the time beyond 40 hours isn’t worth compensating.
*2 Plus the dozens and dozens of unpaid, uncompensated hours Steve’s girlfriend, mother, and Kyle spend with him.
*3 Though, of course, one’s worthiness of healthcare, shelter, food, or safety shouldn’t be dependent on one’s compatibility with the workforce.
*4 300,000 miles!
A secret scream rings through America. It rings down the sterile fluorescent hallways of our hospitals. It rings over our rural towns and our Native reservations. It rings through our prisons, the bellies of our great American cities. It rings in our farms and our fields, our streets and our sewers, our bodies and our blood, and we are cursed to never hear it clearly until, at last, we realize it has been our own mouth screaming, and we are lost. A child born today inherits in that secret a new American squalor, the skeletal remains of the American cities, the bleached bones of the American suburbs. This secret is a birthright of continual exploitation, pumped for labor and drained of cash and then punished for the resulting suffering—punished for being hungry, punished for being sick, punished for being pregnant, punished for being poor, punished for being black or brown, for being queer, for being unlucky, for being.
At the base of that suffering is lodged a little truth, like a knot in the stomach: in America, sickness makes you poor; and poorness makes you sick.
This is a book about that relationship, and why it happens, and why it’s unnecessary and what we can do to fix it. The cosmic whirling of God’s great slot machine has not determined that some people are fated to suffer while others flourish. We have the resources to take care of everyone, and yet we refuse to do so. Your medical debt and medical bills are unnecessary, but we have chosen to make them necessary. These are structural problems with structural causes, and many of them share roots in how we pay for healthcare.
This is a book about healthcare and health finance. They are different. Healthcare is anything that helps you stay safe and healthy. It is a kind of freedom from, and within, your own body. Health finance is the method by which we, as a country, pay for that freedom, and by which we decide who gets to have it, and who doesn’t. Healthcare is more than what happens to you in the hospital. Healthcare is whether your home makes you sick or your food makes you sick or your environment makes you sick or whether you have enough money to afford the things that keep you healthy. In America, the structure of corporate health finance has convinced us that some people deserve healthcare, and some people don’t.
This is a book about that corporate health finance—about private insurance and private insurers. For a half century, they’ve convinced us that they are the only things that keep us—that could ever keep us—from the utter financial ruination of illness. They’ve sold us different inadequate insurance plans and persuaded us that this is a form of great liberty, while chipping away at our freedoms for profit, and holding our bodies and our children’s bodies hostage.
This is a book about single-payer healthcare, a health finance model in which we pool our abundant collective resources to provide healthcare to all people. It is a common model across the world. As we will discuss in this book, we have the potential not just to enact a single-payer program in America but to build the greatest healthcare program among any so-called developed country.
Here is my profession of faith:
I believe beyond any doubt that single-payer is demonstrably sound and eminently feasible. I believe a properly ambitious and well-structured single-payer program will do more than any other American social program of this generation to soothe the burns, to resuscitate the spirit, to nourish the moral will of the American people. I believe it will loosen the loathsome manacles of American health finance: an exploitative institution that profits by plundering from us our own bodily autonomy and that anchors a larger exploitation, that holds those whom we love as captive leverage to guarantee our servitude to abusive employers or domestic partners—to those who seek to dominate us both in the office and in the hospital.
I believe this nation owes its people, whose labor has created its rich banquet, the safety and agency of healthcare. I believe this healthcare is greater in scope than that which happens upon an operating table. I believe that housing, food, income, and more—the components of basic human dignity—are healthcare, and I believe our work is that of striving toward justice for all people; and I therefore believe—I have to believe—that single-payer healthcare is our moral imperative. Single payer is our tool. Single payer is our weapon. Single payer is our first step. But single payer, on its own, is not the goal.
This is a book about health justice.
Healthcare is personal. So I want to start this book personally by introducing two friends of mine, Steve Way and Kyle Kolich. They’re two guys about my age (I’m 30) who live in north New Jersey. They’re sweet, gentle people and probably the most charismatic pair of friends I’ve met in my entire life. They make me laugh until my face hurts, and we like watching pro wrestling together. They’re also being utterly broken by our American health system, and it’s keeping them from living their lives.
Steve has muscular dystrophy. The muscles and tissues that hold his body together are eating themselves. He’s doing pretty good, all things considered. He beat his original life expectancy of 18 and now probably has a long life ahead of him.
Steve needs a wheelchair to move and a ventilator to help him breathe. He also needs help getting dressed, going to the bathroom, eating, and other everyday functions. His family takes care of him, but Steve doesn’t want to be dependent on his parents for his whole life. He wants to move in with his girlfriend. But Steve can’t afford to hire a private personal medical assistant 24/7. I mean, who could?
In many parts of the United States, if you can’t receive care at home, you have to live in a nursing home (or an SNF, a skilled nursing facility). Nursing homes are private institutions for people who can’t live on their own, like people with disabilities and senior citizens with advanced medical needs. But many people do not want to live in a nursing home. Caregivers are massively overworked and deeply underpaid, and the result is often shallow, loveless care, with high rates of medical negligence. Nursing homes have been caught bribing judges to reduce their medical malpractice lawsuit damages, sending their own corporate officials to run for office (who then make it harder to file a malpractice case), or hiring their own lawmakers directly as employees.1 These are not good prospects for someone who needs medical care, nor for someone who wants to be permitted to live freely instead of being imprisoned in a warehouse. “Nursing homes are where [people like me] go to die,” Steve says.
Because Steve wants to avoid all of this, he needs Medicaid. Medicaid is an insurance program, funded jointly by federal and state governments, for people who don’t make much money and people with disabilities. Medicaid pays for much of Steve’s healthcare, and also a home-health budget, which he can use to pay home-health aides to come over a set number of hours a week and assist him around the house. Home-health aides help Steve move, cook, clean, refresh his meds, and stay healthy. They mean he can lead the life he wants to, like all of us do.
But not all state Medicaid programs pay for home health, and few of them pay for it in the same way. Paid or not, the work must be done. For most of his life, Steve’s family, especially his mother, has pitched in to take care of his health needs. Being able to receive care at home makes Steve incredibly lucky.
Getting Medicaid to pitch in took a long time. A few years ago, after a lot of phone calls, paperwork, appointments, and waiting, New Jersey Medicaid approved Steve’s request for home-health funding. Some people hire external home-health aides using Medicaid, but Steve was able to use this money to hire his mother so she could be compensated for some of her help. This took some of the sting out of her not being able to work as many hours as she might otherwise like to outside the house. Then came Kyle.
Kyle and Steve’s friendship started before they were born: Kyle’s mom and Steve’s dad have been friends since middle school. Kyle and Steve started hanging out and writing sketch comedy together sometime between high school and college.
Kyle decided to go to acting school in New York, then met his wife and settled in Astoria, Queens. A year later, his back gave out while he was putting groceries into the bottom shelf of his refrigerator. The injury kept him from his bartending jobs for a week, which (as most working people know) is a devastating amount of money to lose out on. It happened again—another back injury, another wageless week. Then things got complicated.
Kyle contracted parvovirus in his knee, which meant he racked up a substantial amount of medical debt and missed more work. While he was recovering, his wife, Rivera, a Canadian citizen who had just received her working papers after months of being prohibited from working in the United States, developed a kidney infection and had to be rushed to the emergency room. More medical debt—major medical debt. A mountain of debt that just about exhausted everything Kyle and Rivera had, and then some: a total bulldozing that took only six months from start to finish.
So Kyle and Rivera moved in with Kyle’s parents back in Jersey to save up money and pay off their debt. Since he lived just down the road, Kyle spent more time at Steve’s. This was good. They got to hang out, and Kyle would help Steve, meaning Steve’s mom got a break. One day, Steve turned to Kyle and said, “Man, you already help me take a shit. You might as well get paid for it.” Steve reallocated his home-health budget to hire Kyle, who now was paid to take care of his friend.
That’s a charming plot point. But it keeps getting worse. Both Steve and Kyle are getting squeezed in different ways by American health finance.
Steve has to fight for every hour of home health he gets. Originally, Medicaid approved him for 35 hours of paid home health. Steve needs much more than 40 hours of home health. He needs more than 50 hours of weekly home health. He’s a person, not a nine-to-five construction job.*1 After years of negotiating, that budget slowly rose—to 36, to 37, to 38. Eventually it was raised to 40, but nobody told Steve about it, and once he found out from an unrelated encounter with the Medicaid office, the payments weren’t retroactive.
To qualify for this home-health budget, a nurse comes to Steve’s house every four months. Her job is to confirm that Steve is “still” disabled. Both she and Steve understand that this is a useless interaction: Steve weighs maybe 45 pounds sopping wet—he’s not getting out of that wheelchair. But Medicaid wants to make sure he’s not trying to scam them, so he has to go through this process over and over and over again. Miss an appointment, mess up, or get the paperwork wrong, and Kyle doesn’t get paid.
Kyle needs this money to pay off his medical bills and, maybe one day, move back to Queens. He, too, would prefer not to live with his parents for the rest of his life (and his wife, I presume, would certainly enjoy a break from the in-laws). But Kyle is only paid 11 bucks an hour. He’s not even getting Steve’s full 40 hours a week, since Steve allocates part of his home-health budget to his mother and girlfriend, so they get essential compensation for the time they spend with him while Kyle wasn’t around.*2 Kyle ultimately had to take a second job in retail just so he could get health insurance—there’s a shortage of home-health providers in America, driven in part by how low the wages are, and people can’t even take care of their friends or loved ones without being punished for it.
And speaking of wages: Steve is a substitute teacher. I’ve never seen him teach, but I’ve seen him speak, and he’s good at it. If Steve wants to stay out of a nursing home, however, he is not allowed to work as many shifts as he’d like. The state of New Jersey has decided that home health is only subsidized for people…who make less than $2,000 a year! If Steve works more than a few shifts in a month, he becomes ineligible.
Here’s what this means: Steve has to hope he can keep jumping through incredible bureaucratic hoops if he wants to stay alive. People who want to help Steve are forced to drop out of the job market and receive appallingly low wages just so the person they love doesn’t die. Steve’s family has been punished by Medicaid, because two of its members, both Steve and his mom, can’t work, even though they both can and would like to.*3 And Kyle isn’t paid enough to pay off his own medical debt. Kyle has to choose between taking care of his friend and having his own health insurance. Nobody is happy. My friends are being hosed. All the reasons for it are arbitrary and degrading.
This anecdote isn’t meant to show how particularly unlucky Steve and Kyle are. They’re not. They’re regular unlucky. This is the American healthcare system working as normal: this is just what happens if you’re sick, or injured, or have a disability, or are poor, or are black or brown. The disability community uses the phrase “temporarily able-bodied” to describe people presently without disabilities. It’s a good term. No matter how healthy you are now, eventually something—a car you’re driving, a car you’re not, a slippery surface, a genetic mutation—won’t break your way. When that happens, you usually end up in debt, in a hospital, or trapped at home.
The problem isn’t that Steve and Kyle are unlucky. The problem is that to avoid their fates, you have to be extremely lucky.
Healthcare is personal, micropersonal even, because it happens both to us and within us. We’ve all felt hassled or harassed by contemporary American healthcare and health finance. I happen to know a little more than most people. In 2014, I wrote code to help find people to enroll in the Affordable Care Act (ACA) in Florida, Georgia, and Texas—all “Medicaid gap” states, in which folks fell in the gulf between ACA and Medicaid eligibility—and knocked on doors to talk to people in Orlando. There, I spent most of my time meeting people who just didn’t qualify for the ACA because their states didn’t expand Medicaid. They were too poor, or they were the wrong kind of poor. This broke my brain a little—how could these elected officials refuse to expand Medicaid and thus actively harm a lot of their constituents? Couldn’t the ACA still work somehow? It was so big and complicated! What was insurance, anyway? How can we make it work for everybody?
To learn more, I took a job in the insurance industry, building little tools for nurses to look at a map and learn who had diabetes and who didn’t, thinking the ACA could work if it just had the resources it needed.
I was wrong, humiliatingly wrong, absolutely wrong without fail, and this book is my attempt at penance.
I wanted to know more about these needs; I wanted to learn more about the brutal delta between the fantasy and the reality. I read papers, I read books, I did all the nerd shit, but that’s not enough to really understand how healthcare needs manifest. Health disparity is local. There is a world of difference between health needs in Boston, Birmingham, Brooklyn, and Boise. So I took to the road.
Over the past two years, I’ve driven around the United States in my 2002 Honda CR-V*4 as a healthcare justice speaker. I’ve spoken in almost every continental state, in big cities and small ones. I’ve met people who are fighting to get their communities what they deserve, I’ve met people who are just curious about how insurance works, I’ve met people who are winning major legislative battles, I’ve met people who have had great harm inflicted upon them. It is always the same, every morning on the road: I wake up and drive six hours, get to a new town, give my speech, and answer as many questions as I can. Then somebody walks up to me and shares with me the worst thing that has ever happened to them. I have become a library of the miseries of strangers. It is an honor to be trusted with such personal stories.
Through it all, I have seen such suffering.
I have been welcomed into families thrust into inescapable debt because of complications from pregnancy. I have met the children whose birth caused that debt, the children who were born into that debt, who will carry it all their lives—whose birthright is a tiny pair of manacles, forged within hospital billing departments.
I have sat with widows and widowers, people who watched those whom they love writhe in agony in hospital beds; who, out of love, spent everything they had to try to ameliorate that agony; who failed and who were failed; and who now carry themselves in both heartbreak and poverty.
I have met people who were born into bodies that suffer; I have wept in front of them as they share with me the depth of the dehumanization forced upon them, whose daily existence is a constant blaring reminder that they are not wanted, who are forced to make an occupation out of begging over and over again for basic help.
I have visited wealthy hospital campuses for wealthy hospital patients, virtual islands in the middle of their cities. I have visited the neighborhoods around them—black and brown neighborhoods systematically drained of capital and labor in a dance reminiscent of colonialism, who, too poor to receive care at the hospital, in many cases, made poor by the hospital and its growth and economic power, suffer and die much, much sooner than the people in wealthier neighborhoods just a few miles away.
I’ve visited rural towns and rural counties, where there are few doctors and fewer hospitals, where people watch friends and places slip away, where cratering home prices mean nobody can afford to leave and the job famine means nobody can afford to return, where suicide rates are high and car accidents, so far away from an emergency room, often mean death.
And, over time, I have felt my own body betray me. I have looked in the mirror and seen my own coming crisis. I myself am a sick man, heir to my family’s mental illness, and by it I am bedridden at least a quarter of the year. I have paced miles around my city block fearing the decay of my own temporary able-bodiedness and the wave of punishments—the punishments for the sin of being sick—in which I am eventually going to drown.
But it does not do justice to the people I’ve met to pornographize their suffering. It is insufficient to simply recite a litany of human pain. This book exists thanks to those who shared their suffering with me, in the long, long hope that we, together, can build the world in which nobody need suffer in the way they have.
But why does it happen? Why does American healthcare, which is a savior to so many, crush so many more under its heel? Why do bad things happen to good people—to whom bad things have already happened?
This is a book for people who have felt pushed around, knocked down, or fucked over by the American health finance system. This is a book that will attempt to explain why you can’t afford to go to the doctor, why your doctor can’t afford to see you, and who’s making money off your misery. It is a book for those who see this suffering burned into the mirror, or into the faces of the people they love, and who are sick as hell of the whole thing. This is, I hope, a book for everyone who wants something better.
My aim over the course of this book is to explain why all this came to be and why it happens the way it does. I’ll start with what we got: what co-pays are, for example; what insurance itself is; why healthcare costs increase so steeply; or why the few remaining rural hospitals and clinics close at such an alarming rate. Then, in part two, I’ll talk about both a) what we want instead, which is comprehensive, robust single-payer insurance in America—which you might know as “Medicare for All”—and b) the inadequate options we’re currently being offered.
But that’s only a fragment of our story. In the third part of this book, I’ll discuss how single-payer is only a smaller piece of our larger goal. I want readers of this book to understand that access to insurance only represents a small portion—approximately a fifth2—of the health inequalities in the United States. I want you to understand that most health disparity comes from things like inadequate or unsafe housing, inadequate or unsafe food, lack of income or lack of safety. And I want you to understand that these things don’t just “happen”—people don’t just “happen” to have nuclear waste buried in their backyards; poor people don’t just “happen” to live in crumbling death traps. These things are caused by structural poverty and structural racism, by patriarchal, economic, and racial domination.
Against these monsters, insurance alone is not enough.
So if we hope for a world in which nobody is made to suffer, in which people like Steve, Kyle, you, and me, and everyone we know, can feel safe inside our own bodies—we must expand our vision of the fight. We must conceive of the fight for single-payer as one among many in pursuit of health justice. We must fight the battles to help people who are suffering now, and, with those victories, create the scaffolding of a single-payer movement aimed toward health justice. The history of the fight for health reform tells us that we can afford nothing else.
*1 Jersey’s Medicaid program had just decided that, for Steve, the time beyond 40 hours isn’t worth compensating.
*2 Plus the dozens and dozens of unpaid, uncompensated hours Steve’s girlfriend, mother, and Kyle spend with him.
*3 Though, of course, one’s worthiness of healthcare, shelter, food, or safety shouldn’t be dependent on one’s compatibility with the workforce.
*4 300,000 miles!
