Rage Against American Healthcare

Rage Against American Healthcare

In the United States, sick patients spend hours coordinating, haggling, and sometimes pleading with the healthcare system. Can these frustrations become a source of radical change?

Billing envelopes litter the floor of a shuttered hospital in rural Missouri. (Michael S. Williamson/Washington Post via Getty Images)

Our Malady: Lessons in Liberty from a Hospital Diary
by Timothy Snyder
Crown, 2020, 192 pp.

Medicare for All: A Citizen’s Guide
by Abdul El-Sayed and Micah Johnson
Oxford University Press, 2021, 368 pp.

To fall sick in the United States is to undergo a unique rite of passage. Each sick person discovers the ordeal of trying to get a diagnosis, of attempting to access treatment, and of being extorted every step of the way—of realizing that we do not, in fact, have a healthcare system. Beliefs that the healthy can hold lightly no longer make sense—the belief, for instance, that health insurance will provide. The sick soon learn that insurance, even “good” employer-provided insurance, does not protect them from outrageous bills, and that paying through the nose is no guarantee of timely, humane, or even competent care.

In order to get medical treatment, Americans have to deal with one of the most opaque industries in the world. The 28 million people who do not have health insurance are locked out of affordable care almost entirely. The 50 percent of Americans who get insurance through their employers have little say in the coverage they end up with: the employer chooses the plan, or sometimes a couple of different plans; most employees will never see how any of this is decided, despite the fact it will determine which doctors they can see, the monthly premiums they’ll pay, and the deductible and out of pocket costs that will hit them if they get really ill.

Beyond insurers, the providers themselves—hospitals, doctors’ offices, pharmacies—are exceptionally secretive. Most doctors’ offices cannot tell a patient before they get a treatment how much it will cost; even the doctor can only know that once they send out the bill. That’s because there are no set prices for procedures. Every insurer negotiates their own rates with every provider and passes on a portion of that rate to the patient. That means not only that the cost of care is impossible to predict or plan for; it also means that patients can’t “shop around” as they might in a functional market. You can’t shop around when there are no prices to compare. The bills themselves are notoriously difficult to understand, with lists of often unrecognizable charges. A single visit to the ER may occasion one bill from the hospital itself, plus separate bills from individual doctors and labs. And if you arrived by ambulance, a service that is often not covered by insurance at all, that will be billed separately too.

The patient has a full-time job—on top of being sick, they also have to spend hours coordinating, haggling, and sometimes pleading with each of these entities. It’s the patient’s job to find the right doctor, to research and locate a facility that offers the care they need, to check who is in network or out of network, to chase down test results and schedule follow-up care. Although we talk about a “healthcare system,” the many facilities that provide care are separate companies that have limited communications with one another. Americans spent $812 billion in 2017 on the administrative costs of healthcare—more than the entire U.S. military budget that year—but there is, remarkably, no one at the doctor’s office whose job is to guide the patient smoothly through their treatment.

When the historian Timothy Snyder fell ill at the end of 2019, the dysfunction of American healthcare nearly killed him. In his recent book Our Malady: Lessons in Liberty from a Hospital Diary, he recounts a pattern of neglect in his visits to hospitals over a single month, as his symptoms are dismissed, his medical history goes ignored, and his condition worsens. The disaster of his illness and mistreatment is the starting point for a short, livid set of reflections on healthcare in the United States and how its failures make us less free. The book shares with Abdul El-Sayed and Micah Johnson’s Medicare for All: A Citizen’s Guide the conviction that healthcare is a human right and that we need a new system. Whereas Medicare for All offers a comprehensive survey of the problems with private insurance and puts forward a clear solution—the Medicare for All of the title—Our Malady is a messier, more associative, and philosophical book, more outraged and urgent in its tone but less clear about what exactly is to be done.

The books emerge from two distinct political traditions. El-Sayed and Johnson are both medical doctors who take inspiration from the socialized medicine of the United Kingdom and other single-payer systems, and their guide comes with prefaces from Vermont’s socialist Senator Bernie Sanders and progressive Congresswoman Pramila Jayapal; the authors talk about human rights, and social democratic programs as the way to realize them. Snyder meanwhile is a Yale professor best known for Bloodlands, his reckoning with mass murder in Eastern Europe, and more recently for his anti-Trump polemic On Tyranny. His writings emphasize anti-authoritarianism, and his lens for looking at American healthcare is the struggle between freedom and unfreedom. What is liberty, he asks, in a country where people routinely die from medical neglect?

El-Sayed and Johnson have compiled a thorough set of arguments in favor of universal coverage, and they are detailed and strategic in their assessment of who will oppose it and how to get it passed anyway. But Snyder’s book, with its articulation of revelatory rage—that familiar feeling of coming face to face with injustice, as if you are the first to do so—shows how revolutionary policy could appeal to a broader base.

 

Timothy Snyder’s account of the illness that struck him in 2019 reveals on a granular level just how poorly our healthcare system delivers anything like care. He describes waking up on December 29 achy, coughing, and “seized by tremors.” He was so ill that he had to lie down from the effort of brushing his teeth and in between putting on each item of clothing. His problems had begun while in Germany on December 3, when he stayed overnight in a hospital for abdominal pain. Back in the United States, he was admitted to a hospital in Connecticut to have his appendix removed; a doctor noted lesions on his liver, but no one mentioned it, and he was sent home after twenty-four hours. From there he went to Florida for a vacation and was admitted to a hospital for a third time, with “tingling and numbness in [his] hands and feet”—which should have been a warning sign, but apparently wasn’t, as he was discharged again.

Cutting the trip short, he flew back to New Haven to try the emergency room there for a second time. In a wheelchair by now, he struggled to get medical attention, despite having brought a doctor friend to advocate for him. The first doctor who saw him suggested that he had the flu. The fact that this was his fourth emergency room visit in one month did not register with anyone; nobody realized he’d been operated on at this very same hospital just two weeks earlier. A model patient, he had taken significant administrative burdens upon himself, and arrived that day fully prepared with a “a folder with the printouts and a CD from the Florida hospital” to show the New Haven doctors. They brushed him off, explaining, “We do things our own way.”

So, it appears, they did: “The doctors and nurses could not spend more than a few seconds at a time with me, and rarely made eye contact,” he remembers. “They ran their blood work, forgot the results, misreported them, ran off.” He encountered staff in a state of “permanent distraction,” including while performing procedures. This was his experience while undergoing a spinal tap:

People are much poorer at almost every task when they are close to a cell phone; both physicians had kept theirs turned on and close by. I was hunched over a bed with my face against a wall; I know this because their cell phones rang three times during the procedure. The first was the most memorable. After reinserting the long needle in my spine at a second point, the resident jumped in reaction to her ringtone.

Snyder was in sepsis for eight hours before he was correctly diagnosed with a liver abscess and treated; he spent the next several weeks in the hospital. The story is shocking, the details are horrifying, and yet the central revelation that the system is life-threateningly broken is familiar.

What emerges here is not just the doctors’ failure to diagnose the patient correctly, but the failure to care whether they helped him or not. During his period of hospitalization, Snyder wasn’t treated with the dignity of a human being who was suffering and fearing for his life; the staff wouldn’t put down their phones or look him in the eye. In the system of private care, he wasn’t treated as a valued consumer either—he was more like a commodity, a raw resource from which value was to be extracted in the form of lucrative procedures. He underwent several panels of blood work and two unnecessary spinal taps before anyone looked at his earlier liver scans. Even though he had insurance (the refrain of so many stories about healthcare), he paid several thousand dollars in “unexpected fees”; still in his hospital bed when the bills arrived, he was soon charged late fees. “We would like to think we have health care that incidentally involves some wealth transfer,” he reflects ruefully. “What we actually have is wealth transfer that incidentally involves some health care.”

Synder’s experience also shows how a patient can do everything right and still suffer life-endangering neglect. Snyder, a distinguished academic and skilled rhetorician, was an adept advocate for himself. He was proactive and persistent in seeking medical attention, and he made every effort to alert doctors to his medical history. This wasn’t a case of an unlucky patient encountering a few medical professionals on a bad day. This is how the system is supposed to work. It is hard to read his account and understand the current system as a functioning bureaucracy that can be skillfully navigated. In truth, it is something much more disorganized and dangerous than that.

Not surprisingly then, the emotion that runs throughout his book is a clarifying rage. Ailing and neglected, he begins a hospital diary. “The first words I wrote in New Haven were ‘only rage lonely rage.’” For a patient, anger can be the fire that helps forge a new identity. “The rage helped me see myself,” Snyder writes, “helped my body and mind take on a distinct form after a shock.” But it can also push the patient toward a new political consciousness: if illness imposes uncertainty and makes the patient’s world smaller, then rage provides a spurt of moral certainty and a defiant engagement with the world beyond. Snyder starts to ask why emergency rooms are understaffed; why medicines are cheaper in France, Austria, and Germany; why infant mortality is higher in the United States than in Bosnia and Belarus.

A major question in American politics today is why most of us—anyone who has a sick friend, parent, relative, or has suffered illness themselves—are not asking these questions at every election. Certainly, if we are going to get anything like real healthcare in this country, we are going to need a lot of people to stay very, very angry.

 

Medicare For All offers a more systematic guide to the same gaping problems that Snyder experiences. El-Sayed and Johnson offer instructively specific examples of American drug and procedure prices compared to those in the rest of the world. A CT scan costs $140 in the Netherlands but $1,100 at a facility here. An MRI is $130 is Switzerland but $1,430 here. A day in the hospital costs on average $765 in Australia but $5,220 here. Reel off the sticker prices associated with staying alive in the United States for too long and you start to believe that numbers are meaningless. The charges are completely untethered from reality. In the space of just seven years—between 2007 and 2014—“hospitals raised their prices by 42 percent.”

The Affordable Care Act (ACA) was supposed to rein in the runaway costs of healthcare. An important part of the legislation aimed to do this by limiting the extent to which insurance companies can profit from patients. To that end, it contained a provision that a company must spend at least 80 percent of the money it takes in premiums on medical claims, leaving only 20 percent for running costs and profits. This rule ended up simply leading to higher provider fees and higher insurance premiums. It was in the interests of insurance companies to cover very high claims and then charge higher premiums to pay for them, because 20 percent of a higher total meant greater profits than 20 percent of a lower total. “In the end,” El-Sayed and Johnson write, “the players we rely on to keep prices low are incentivized to keep prices high.”

Like Snyder, El-Sayed and Johnson point out that “the experience of giving and receiving care is eroding” under the current system. Whereas Snyder notices the cell phones that have infiltrated the operating room, El-Sayed and Johnson identify structural reasons for the decline in quality. One is monopoly: 90 percent of hospital markets are highly concentrated. The mid-2000s saw over fifty hospital mergers each year. Consolidation has meant that fewer doctors can work out of independent practices, where they direct their own work. With diminishing influence on the system, doctors now spend nearly a quarter of their time on non-clinical paperwork. El-Sayed and Johnson note the phenomenon of “moral injury,” when clinicians are put in the position of “knowing what a patient needs but failing to meet that need because of barriers in the system.”

The causes of the dysfunction are so many and various that a range of remedies present themselves. As El-Sayed and Johnson patiently acknowledge, it’s not immediately obvious that Medicare for All is the only way to alleviate the crisis. If corporate consolidation is raising prices and making doctors miserable, for instance, why not throw antitrust enforcement at it? This is the conclusion Snyder reaches in Our Malady: “Doctors are the people who are trained in both the science and the humanism of care,” he reasons; we just need to empower them. “Huge medical groups should be broken up by antitrust legislation.” He also proposes that physicians should be appointed the heads of “revived federal agencies tasked with planning for and responding to epidemics” and should take the lead in designing a “system in which all Americans are insured.” Keep all the insurers, keep the private providers, just regulate them to make it all more affordable and accessible.

In a simple, thorough chapter titled “Medicare for All vs the Alternatives,” El-Sayed and Johnson consider this route. Changing the rules of the market, they write, would “likely reduce the prices for some healthcare services at least moderately,” but there are clear limits. Efforts to slow hospital consolidation largely come too late, given that 90 percent of hospital markets are already highly consolidated. But more importantly, it’s a mistake to assume that greater competition between hospitals would lower prices for patients, because patients cannot shop around for healthcare and compare prices the way they can for other goods. For a patient who had “a mechanical heart pump placed after she went into shock in the intensive care unit,” they write, “it didn’t much matter if another nearby hospital charged a lower price for the same procedure.” Meanwhile, it’s not clear that greater competition would lower the prices of prescription drugs, El-Sayed and Johnson explain: “The vast majority of drug spending goes to products that are protected by patents, meaning that direct competition is prohibited by law.”

In their rundown of alternatives, El-Sayed and Johnson also consider building on the ACA, price regulation, a public option, and various versions of Medicare expansion short of Medicare for All. All of these measures would deliver some improvements. Building on the ACA would increase the number of people who get health insurance—though it wouldn’t address many of the problems encountered by insured sick people (like Timothy Snyder). Price regulation means the government could use its power to cap prices—but it wouldn’t get more people insured. A public option would make higher quality health insurance more widely available by allowing people to buy into a big plan, which “may also have more negotiating power than private insurers to rein in prices”—but it would still “retain the consumer choice model of healthcare” rather than enshrining healthcare as a right.

Another option, “Medicare for Some,” would allow people who have employer-based coverage to keep it if they wanted it, or to opt into Medicare if they prefer, ensuring universal coverage. It would benefit from the federal government’s ability to negotiate lower prices. But it would retain the current system’s costly administrative complexity and would still impose out-of-pocket costs on patients. As long as government-provided insurance has to compete with private insurance, a kind of segregation will emerge, where the government ends up insuring the most sick and costly patients, while the private sector gets paid to cover people who are relatively healthy.

Of all these programs, Medicare for All is the only one, the authors write, “that seeks to fundamentally transform healthcare into a public good.” Under Medicare for All, the government would provide health insurance to everyone in the United States. Everyone would be enrolled. No one would have to pay premiums to stay covered or out-of-pocket costs to get care; the program would be funded progressively through taxes. The plan would cover a comprehensive range of benefits, including hospital care, prescription drugs, vision, dental, and hearing. Having a single insurer would bring cost savings in several areas: the size of the program would give Medicare for All the leverage to negotiate lower prices for drugs and care, and it would cut the administrative costs that private insurance companies currently create.

Above all it would mean unburdening sick people from a crushing array of worries. No more bills, denials of care, lack of insurance, or threats of “medical bankruptcy”—a distinctly American term. The patient could focus on recovery.

 

The authors of both books agree that healthcare is a human right, and that access to good medical treatment is a condition of freedom. While El-Sayed and Johnson go about showing this in a practical way, by talking about premiums and copays and networks, Snyder takes a more philosophical approach.

Our Malady is an intensely personal book at its core, and the terms in which Snyder talks about the current crisis are idiosyncratic and a little grandiloquent. “Malaise and malady are good old words, from French and Latin,” he explains. He chose them for their associations with the founding of the American republic and the American revolutionaries who cast off the “national and colonial malady” of British rule. The disgrace of American healthcare, he argues, is a betrayal of American values. “Our malady is physical illness and the political evil that surrounds it,” he writes. “We are ill in a way that costs us freedom, and unfree in a way that costs us health.”

This is true. Lack of access to healthcare is a form of oppression; so is medical debt. I do not fully agree with Snyder or Thomas Jefferson, whom he quotes, that “without health, there is no happiness”: many people with chronic illness would argue otherwise (and, in any case, the best system of healthcare in the world would ensure only universal care, not universal health). Moreover, at some points Snyder imagines that the real scandal of our current uncaring system is that it leaves us vulnerable to authoritarianism: “We are not free when we are sick. And when we are in pain, or when we are anxious about our illness to come, rulers seize upon our suffering, lie to us, and strip away our other freedoms.” That may be, but the focus is surprising when the immediate bodily harm that the system serves up is so apparent. All this points to a larger mystery: why does Snyder’s near-death experience point him back to anti-authoritarianism, rather than toward the social democratic politics of passing Medicare for All?

The words “Medicare for All” are notably absent from his book, and even though Snyder sounds a lot like a Vermont senator when he talks about the billionaires whose wealth has skyrocketed during the pandemic, he doesn’t mention Bernie Sanders, the politician most closely associated with Medicare for All. For many patients, even those moved to righteous fury, Medicare for All is not the obvious solution. Before I read El-Sayed and Johnson’s book, I was not myself convinced it was the only way to fix the American healthcare system; while it was my preferred option, I was, like Snyder, open to the idea that an extra layer of regulation and some of the market-based solutions could also make big improvements. Purely because the system is so broken, I thought that even legislation requiring hospitals to set prices for procedures and advertise them—which could allow patients to shop around and should theoretically lower prices—could make a difference. It was only after reading Medicare for All: A Citizen’s Guide that I changed my mind. El-Sayed and Johnson make clear that those smaller reforms would take nearly the same amount of political leverage as Medicare for All, but each of them would leave major areas of healthcare with their existing problems. And because healthcare reform is so unpredictable—look no further than the unintended consequences of the ACA’s 80-20 rule!—the smaller reforms actually threaten to leave us with still bigger issues down the line. Anything short of single-payer is whack-a-mole.

El-Sayed and Johnson are acutely aware that they need to persuade new readers of these arguments. The coalition against Medicare for All is composed not just of Republicans and big healthcare and insurance companies but also of centrist Democrats who fear that “a major legislative push for M4A would end in failure.” Many physicians have also historically opposed healthcare reform, along with parts of the labor movement and many large employers, who can use benefits to lure and retain employees. Building a broad base of support for Medicare for All will mean looking beyond the left, and making the case for single-payer to voters—and patients—who bring their own political values to the issue.

The anti-authoritarian politics that suffuse Our Malady are promising, because they connect Snyder’s critique of healthcare with a larger popular politics—the anti-Trump resistance politics that has drawn so many liberals since 2016 and made Snyder’s previous book On Tyranny a widely cited best-seller. Over the last five years, millions of liberal Americans have embraced the language of freedom and unfreedom, liberty and tyranny, that Snyder invokes here. During the Trump era, the looming threat was the specter of totalitarianism; in this book, it is the very real conspiracy of health insurers and providers to extract profit from the sick at any costs.

Starting with the raw anguish of being a patient, what Snyder is describing throughout the book is a process of radicalization. If we want real healthcare, we need more liberals to discover a rage against the industry equal to their rage against Trump. And then we need to engage them. They might even start talking about Medicare for All.


Laura Marsh is the literary editor of the New Republic.


Lima