The following excerpts are from Chapters 7 and 8 of The White Bonus: Five Families and the Cash Value of Racism in America. I am sharing them in light of the December 3 murder of Brian Thompson, the CEO of UnitedHealthCare, one of the nation’s largest health insurers. An October 2024 Senate Majority Staff Report found that the company’s shift towards automated claim processing accompanied an increase denials of some care.
Chapter 7: My Childhood
Chapter 7 traces the story of my family’s battle against insurers on behalf of my mother, Charyl McMillan, who died in 1993, 9 years after sustaining a traumatic brain injury in a car accident.
Forty days after my mother died, the Michigan Court of Appeals ruled that the insurer–who had refused to cover her care, resulting in poor care, health, and death—should have covered her care.
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Forty days later, the Michigan Court of Appeals issued a final ruling on my mother’s insurance case. It had been bouncing between judges for more than two years. The court ruled that my mother was entitled to no-fault benefits.
That meant my mother could have stayed at the first home, Total Therapy, after all. It meant she could have moved to a better one, or maybe, even, gotten funding to stay at home with us. It meant she never needed to go to that first nursing home, where they beat the patients and she got pneumonia and needed a tracheostomy and lost the ability to speak. It meant the last two years never needed to happen.
During the era in which my mother became sick, people with power in America were beginning to use economics to analyze health care in a new way. When my mother was a child, in the 1960s, it was unusual to talk about “cost-benefit” and “cost-effectiveness” in health care; only six or seven journal studies a year used that phrasing. In 1990, more than 250 studies used that language. This makes some sense: With the creation of Medicaid and Medicare in 1965, the government needed to ensure it was paying reasonable rates for the health care it now covered. But “cost- benefit” has come to warp care, with insurers and medical groups increasingly measuring success not by care given but money made. It has made it easier to think of human bodies as costs, and to forget that they belong to people. It has made it easier to be cruel.
This sleight of hand has a long history in America. Its taproot stretches back to the enslavement era, where intricate data tables scrib- bled in ledgers chart how much value a human, worked until ragged, can create from a cotton field, and how little they can be fed to create it. In studying the records of enslavement-era hospitals in the South, historians Jonathan Pritchett and Kevin Lander found that plantation owners withheld care from enslaved children and the elderly enslaved, who, as commodities, were considered the least valuable. The same enslavers spent money freely to cure prime-age enslaved males, who commanded higher prices. “Owners cared for slaves when it paid to do so,” they write. Enslavers only sent the enslaved to doctors, in other words, when the financial benefit outweighed the cost.
The suffering and health of the enslaved were not part of the calculation. My country has learned to feel moral outrage about one man claiming ownership of another. We don’t yet acknowledge this “practical” rationale of cost and benefit, which American society increasingly applies to almost everything, for what it usually is: apathy and cruelty justified with numbers.
In the end, the two-year delay in my mother’s insurance case benefited the lawyer, whose fees were covered by the settlement—and who, by winning the legal argument, broadened the pool of viable cases in the area of law in which he practiced. It benefited the families who came after us, because it set a precedent for coverage in future cases. It benefited the insurer who ran out the clock on my mother’s life and had no future obligations.
It did not benefit me. I do not think it was worth the cost.
Chapter 8: Barb Nathan Katz
Chapter 8 details the story of Barbara Nathan Katz, an IHOP server outside Dallas. She could not afford the health care plan IHOP offered. Texas refused to expand Medicaid to childless adults. Uninsured, Barb did not get health care, and did not know it when she became diabetic.
In 2015, she went into ketoacidosis and died.
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Nobody saw Barb’s death coming: not her husband and not her coworkers at the International House of Pancakes. Not the manager at the senior apartments and not the girl at the front desk. Not her cousin, who invited her to family gatherings. And definitely not her three sisters. If anything, the sisters figured it would be Barb’s husband, Mike, who’d go first.
Barb and Mike had been married more than thirty years by then. When the couple had first married, back in 1983, nobody had liked Mike much. He seemed crabby and materialistic, and generally obnoxious, but these objections felt small. They were the kinds of things you’d make do with—not big enough to make anyone suggest calling off the wedding. Mostly, the family was just glad Barb, who’d had an especially challenging childhood, had found someone.
They began to worry more after the wedding. Mike began calling Barb’s father, asking for money. Then Barb started calling to ask. Anita, the oldest of the four sisters, remembers her father saying that Mike would be startlingly direct. He would say things like, “I married your daughter, so you should send me money.” Once sent, the money vanished. Then another call came. Mike and Barb also asked her cousins for money, and they asked her sisters. Eventually, the sisters tried to persuade Barb to leave Mike, but she would not. So here they were: Anita, Debbie, and Miriam—all well into middle age, all worrying over Barb.
They told themselves that the only thing left to do was wait. At first, they hoped for a crisis, wanted Barb to lose her patience and finally accept Miriam’s invitation to come live in Rochester, New York. Then, more grimly—and more honestly—they settled in to wait for Mike to die. It wasn’t a crazy thought; he’d told them he had diabetes and heart failure. Once he passed on, they could reclaim Barb. Maybe she could even have some joy in these last decades of her life. They assumed she had more time.
Then someone from the senior apartments called Miriam and said that Barb was gone. The sisters hadn’t realized that to have more time, you had to have a stable life; you had to have health insurance and see doctors regularly. The three sisters, who’d done all right for themselves, same as their parents had, were the kind of people who had more time. Barb was not.
It was a couple of months before the sisters knew how Barb had died. What the last days and weeks had been like. Why she hadn’t been to the doctor. How the abuses she endured from Mike mixed with trauma and poverty and the fear of medical bills, all of it metastasizing into a paralyzing fear that kept them from calling an ambulance. The story they learned was so grim that, when Mike died three years later, it took a conscious effort to feel relieved instead of avenged.
After Barb was gone, their loss was breathtaking. So was the guilt they felt.
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The intervening chapter traces Barb’s life and death, at 63, of ketoacidosis at home, as well as America’s history of allowing racism to make public programs, including health care, less generous and more punitive. It notes that Barb did not have health insurance and did not know she had developed diabetes.
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It’s easy, with Barb’s story, to dwell on all the things she and her family could have done differently. What if she’d had a mother who knew how to help her learn, or who didn’t lapse into rages? What if her sisters had gathered around her and lifted her up from the beginning? What if she had not married Mike? What if Mike hadn’t been so irrationally obsessed with money and status? What if, what if, what if.
There are other things we in America could dwell on. What if Wilbur Mills and LBJ had ignored the employers, health insurers, and medical systems and built a public health care system in the interest of America’s people, instead of brokering a deal with companies looking to profit? What if Congress had ignored the demands of the National Restaurant Association in the 1990s and had instituted a living wage for everyone, even for servers, instead of freezing the tipped minimum at $2.13? What if Texas had expanded Medicaid instead of fighting it? What if, what if, what if.
For Barb, what ended up mattering was not what if, but what was: a life without health insurance because she could not fathom paying its cost. Given the contorted obsession both Barb and Mike had with money by the end of their lives, I am not sure that if Barb had been insured, she would have gone to the hospital. She would have needed insurance that was both good and affordable for that.
Even for the insured, medical decisions are often a thinly veiled calculation between the risk of bankruptcy and the risk of death. Plans that are affordable insure us only against full bankruptcy each year, not that we can afford the care we need. In the end, the only unmitigated beneficiaries are the companies selling the “product” of health insurance and the providers—medical groups and hospitals—who are paid for the care insurance is intended to cover. By 2018, health insurance stocks had outperformed the S&P 500 by 106 percent, largely because government spending under the Affordable Care Act had increased their profits.
My best guess is that even if Barb had bought the insurance that IHOP offered, health care could have cost her nearly $9,000 a year. Jobs like Barb’s usually come with insurance plans similar to the bronze plans on the affordable care marketplace. Using that as a ballpark figure, if Barb had been insured, her annual premium bill would likely have been around $2,300, given her household income and the affordability standards of the ACA. She would have paid that in monthly installments, and she would have paid pay full price for care beyond an annual checkup until she met her deductible—a figure that, in 2015, was around $5,300 for the cheapest marketplace plans. After that, insurance would have reduced the per-item cost of her care, but she likely would have another thousand dollars in bills before she hit her out-of- pocket maximum and no longer had to pay. At the end of each year, the calculator would reset, and she’d begin to pay again.
There are only three ways out of this nightmare of unpredictable insurance in America. You can be wealthy enough to pay for medical care entirely out of pocket, confident that you can afford any bill that arrives. You can age into Medicare, where costs to patients are modest and predictable. Or you can prove you are poor enough to get Medicaid, where federal law typically limits clients’ total health care costs to 5 percent of household income. These are not perfect systems, but they offer something our privately run plans do not: care without the panic of debt.
That is probably why a survey of 149,290 Americans found that people who use Medicaid and Medicare report more consistent access to care, and less medical debt, than do people insured through private plans. Being insured through IHOP or the marketplace, with private insurance, then, would not have saved Barb from the panic. To escape the panic, Barb’s best bet would have been Medicaid. Yet even that would have been fraught. To stay insured, she would have needed to prove she deserved care, again and again, through paperwork that was nearly endless and rarely intelligible. She would not have had time to look at the bigger picture.
Most white Americans of all classes, I think, do not look at the bigger picture. If we did, we might see this obsession with deserving for the distraction that it is. We might see that when we fight over who deserves what, we often make assumptions about race. We assume that we, as white people, deserve our government’s help without question. We assume that Black and brown Americans need to prove they deserve that same help. If we looked at the bigger picture, we might see how our willingness to subject Black and brown people to this test has morphed into a culture so accustomed to it that, now, we are increasingly subjected to it ourselves. We might see how much we lose by picking a fight over who deserves what, again and again, instead of fighting, together, to say we all deserve to have enough.
That’s another way of saying that racism here has never really been about color. It has always been about power.
But white Americans have held tight to the myth of deserving, reflecting that ugly lesson we have learned. We have listened to leaders who said the safety net was not for us. We have dismissed the fact that these leaders are often bankrolled by the same companies who benefit, massively, from this fractured, punitive, and expensive system. We believed that asking the poor to prove their worth was reasonable because we assumed they would mostly be Black. We told ourselves it was reasonable because we did not believe it would happen to us. Our error has become easier to see as the safety net, made thin and flimsy by racism from the start, has turned to raggedy threads beneath us. That companies turn a profit at every step along the way only adds insult to this injury.
Nobody with a body that needs care can claim to be an impartial observer of this problem. I certainly cannot. My mother had a body once, and when her country asked her to prove she deserved the help that would keep her alive in it, she failed. So my country took her, and so my family, and so my heart. America took and it took, and it took.
I would be a fool to think it is done.
So would you.
Excerpted from THE WHITE BONUS: Five Families and the Cash Value of Racism in America by Tracie McMillan. Published by Henry Holt and Company. Copyright © 2024 by Tracie McMillan. All rights reserved.
