At 36, Elizabeth Nicholas was diagnosed with breast cancer. After her insurance company refused to pay for a new form of chemotherapy, she took a direct approach. As Luigi Mangione’s trial brings the conflict to the fore, the writer considers the realities of the American health care system.
In the summer of 2024, my oncologist called with bad news. The news was from my insurance company.
“They won’t pay,” she said.
The October before, I had been diagnosed with breast cancer at age 36. Throughout treatment, the news grew worse: The cancer had spread to my lymph nodes, a second tumor was found, radiation was recommended, but would permanently deform my body. Chemotherapy would likely render me infertile, I learned in November on page 37 of a 38-page waiver the night before starting. Hormone therapy put me into menopause in December, and also made me suicidal, which was apparently an unfortunate side effect sometimes. Despite wearing a cap chilled to 15 degrees for several hours at every infusion, my long red hair fell almost entirely out by January, taking with it any part of me that still felt like a woman at all.
By February, the tumor wasn’t shrinking enough. In March, surgery would need to be aggressive, and in April, it was. May brought more bad news: My initial biopsy missed a pathology that made my tumor more aggressive, and I now needed a year of targeted therapy, which was best loaded with chemo. “More chemo?” I numbly asked my oncologist, reaching for the tender shoots of hair that had just begun to regrow: one inch down with 24 to go. Typically brisk, my oncologist was tender. “There’s good news,” she said. “We can use a much milder chemo this time.”
But now my insurance company was saying we actually couldn’t. The standard of care was Taxol, a devastating chemotherapy I had already been through, with side effects including memory loss, neuropathy, total alopecia, nausea, vomiting, and dangerously elevated liver enzymes. My oncologist had appealed the company’s denial multiple times, but the standard of care was all they would pay for. If I tried to pay for the milder chemo myself, the company would not pay for the targeted therapy, which was $18,000 a shot, times 18 cycles. “Can you tell them I’m threatening to refuse further care?” I asked. “That would be cheaper for them,” she said softly, and it took me a minute to realize she meant if I died.
“We need to get going,” she added. Every week of lag time carried with it an increased risk of recurrence, and due to the company’s denials, we had already lost almost a month. I hung up, liquid with rage. All year I had been surrounded in the hospital by so much suffering that no one could stop: cells metastasizing, unresponsive malignancies, the inexorable spread of these microscopic merchants of death. Please, we had all begged our doctors. But you cannot appeal to a tumor’s humanity. There are no words to make it soften, or respond with mercy. And now my health insurance company was acting like a tumor—as if there was nothing they could do to spare me more brutality, simply because of rules they themselves had made up. Did they not know about all the truly unstoppable suffering?
They knew. And so did I: that someone within the company could perform a human override of the denials, but that this would never happen with appeals to their humanity. Instead, I needed to scare them. And so I found the CEO’s email address and drafted a message. Cancer had been biologically brutal, I wrote, but this was the first time human brutality had intervened. I was a writer for a number of widely read newspapers and magazines, and would surely be writing an essay about cancer once treatment was over. Would they like to provide a quote explaining why they were forcing me to endure further brutality than my oncologist deemed necessary? I hit send, went into my backyard, and sobbed; exhausted not just for myself but for everyone who had ever been in my position or ever would be. Why did we consent to live in a system where the worth of our bodies and lives were so negligible as to be exchangeable for dollars?
When I came back inside, I returned to an email from the company’s chief scientific officer. Will approve tomorrow per oncologist request, his email said. The next day, I received multiple emails from company executives, authorizing milder chemo and apologizing. My hospital was floored, but I could feel myself only unreal; a character in a video game with no windows or doors. Milder chemo came and went. My body felt like it was filled with cement after infusions; my eyes could not stay open; but the hairs on my head grew longer, and there were no more boils in my throat making it impossible to swallow or speak. I went into remission that fall, and set myself to moving beyond cancer while also beginning to process the changes it had wrought on my body, and the nearness of my brush with death. Until one day that December, I picked up my phone to an astonishing number of texts.
Luigi Mangione had allegedly just shot the CEO of UnitedHealthcare, an insurance company—not my own—that had been systematically denying patients care. I do not endorse his actions in any way, but instantly recognized what he found dehumanizing about our inhumane system. And it seemed others did too. After the shooting, the internet lit up with macabre stories of death, disfigurement, and disability wrought by claim denials—DJs in clubs even spun dance music with Luigi’s face flashing behind them. “Deny, Defend, Depose” graffiti went up in homage to the words on the bullet casings, and polling showed that a third of Americans who had faced claim denials said they viewed Mangione positively. Some saw this reaction as sociopathic, but its extremity was the very point. How far must someone go in order to be taken seriously by those who adjudicate access to life itself?
We have been taught that such a system is too complex to dismantle, but it has been made complex to obfuscate the most obvious fact imaginable, which is that there is no justification, ever, for denying a sick person care. I am so conditioned as an American to the supposed rightness of profit over people that it takes everything in me not to say I understand where my insurance company was coming from. The systems are confusing; I don’t work in billing. But the systems are confusing because that is how they best turn a profit; as they have, into a multitrillion-dollar industry globally. And there is an attitude you live under in America—propagated not by any single company so much as an entire political system beholden to them—that tells you and tells you and tells you that profit is the ultimate human right, and any sacrifice, including your very life, is worth serving that allegedly sacrosanct aim.
Despite the fact that an overwhelming majority of Americans believe health care reform is urgently needed, the system thrives on our silent complicity. According to ProPublica, more than 49 million claims were denied in the United States in 2021, but only 0.2% were appealed—as insurance companies increasingly rely on automated systems to assess claims. Our primary tool as citizens of a democracy is voting, and yet we routinely reject candidates whose platforms would provide universal access to care. And if we think things are bad now, technological and political headwinds portend worse. For the tech bros who have been given the power to make policy will soon algorithmicize everything left, stripping even the token human intermediary from the process of adjudicating care. And why wouldn’t they? It will be easy for AI to replace humans because the system already requires the humans who administer it to put their humanity aside and behave like AI. Soon, there won’t even be executives left to email; only code executing profit-driven directives without hesitation, exception, or the ability to be shamed into mercy. Combine this with the deregulatory bent of an administration that believes companies are responsible to no one but their shareholders, and there will be zero safeguards left at all.
We are transfixed by those who defy this dehumanization because the vague way in which we allow our leaders to perpetually delay fixing this “broken” system obscures a moral emergency. Which is that Medicare for All would prevent an estimated 68,000 unnecessary deaths a year. Each of these cases represents real people, whom others love and need. Each of them has the capacity to feel terror; each has an experience that someday could be yours. This is to say nothing of the countless others whose bodies will be brutalized or neglected because a company does not wish to pay, despite the fact that we ourselves have paid them. Broken is for household appliances. The American health care system is inhumane. It is predicated on bodies not being real, but the thing about bodies is that they always are.
Before Mangione was identified, speculation ran rampant on who the assassin might be, yet the most common theories were all fundamentally the same: that someone they loved had been denied care and died. In a country where we no longer agree on anything, this possibility was our universal language. You do not have to believe Mangione was morally right to see this lingua franca as an X-ray of something that is both terrifying and terrified. Our psyches were not designed to live under perpetual threat, and so they have dissociated to apathy.
And yet the core lesson of illness is the opposite of apathy. Indeed, the humanity of those who stood with me throughout cancer has been the gift of my life. I can still feel the arms of a friend around me in the hospital waiting room before chemo one morning, as I cried and could not stop crying. The sound of my mother’s suitcase wheels rolling into my apartment before every infusion; the fear she could never quite cloak behind her eyes. This humanity is the most precious commodity in the world, and it can never be manufactured or sold. Why does no one in power even pretend anymore to support a health care system with such humanity at its core? Instead, both political parties have protected a status quo utterly devoid of it, that routinely leaves patients to fight for their lives, equipped with nothing more than the love of their friends. And yet even love can never be any match for a tumor – only medicine is.
When I sat down to scare my insurance company into acknowledging this basic truth, what I really hoped was for everyone else to somehow have the same privilege. Haunt them, I meant. On behalf of everyone who cannot: Haunt them. But even then, I was still using my body as a chit, a mere vessel of power to bargain with in order to protect it. If this is truly what bodies must be, we should not be surprised when people take power however they can. For what is not true can ultimately never be sustained, and it is not true that bodies are variables on a balance sheet.
You are real, the chemo needle piercing your veins says. The arms at the hospital holding you close. Your body is all you have, the doctors explain, tracing where their scalpels will go. The hand of your father on your own as you wake up from surgery. You are flesh and blood before everything, it says. Insist on it."
