A FATAL MISCONCEPTION
THEINTERNET CAN TAKE YOU to some strange places. Ever since a new strain of the coronavirus emerged in Wuhan, China, and spread through the world killing millions, we’ve seen just how weird—and how real—our online lives can get.
In early 2020, Covid-19 punctured the digital realm, already rife with “misinformation,” a term for falsehoods spread in earnest, and disinformation, which describes lies maliciously designed to manipulate people. Covid-related misinformation and disinformation caused real-world ripple effects that formed a toxic tsunami rivaling the emerging pandemic in speed and scope. Donald Trump, then the president of the United States, dismissed scientists and spread social media hype around unproven “cures” such as hydroxychloroquine, over and over again. In the US and around the globe, some elected officials followed suit, feeding sickness and false narratives with each misguided post.
As we doomscrolled our way through extended lockdowns, unhealthy information spread across online communities like a noxious gas wafting over a battlefield. Left-leaning new-age influencers took militant stances against Covid-19 vaccines, while veteran right-wing conspiracy theorists injected new anti-mask sentiment into old tropes of sinister cabals that secretly run the world. Off-beat uncles became insufferable former Facebook friends. Antivax spouses threatened to leave their partners should they get the jab—because their “sources” on Instagram claimed the vaccines would poison children who had yet to be conceived.
Socially distanced and working from home, I gobbled up every rumor I found. Not because I believed them, but because I couldn’t look away. The more I read, the more I became convinced that the internet can’t only take you to strange places. It can take your life
In the summer of 2020, the former Republican presidential primary candidate Herman Cain died after testing positive for Covid. His passing captured the public’s attention because he had downplayed the pandemic’s risks and attended a Trump rally unmasked in Tulsa, Oklahoma, shortly before being hospitalized. The apparent link between misinformation and Cain’s death galvanized an online movement that set out to showcase similar stories of cause and effect,
most notably in a Reddit community named /r/HermanCainAward, which chronicled people’s descent into Covid denialism and their subsequent deaths. “I should have had my shots. My wife had hers. She kept telling me to get mine. I’m going to die, aren’t I?” one man told a doctor, in a post published on the Reddit forum. The patient died alone in an intensive care unit three days later. Americans had proven their susceptibility to misinformation and disinformation in profound and visible ways. Thanks to the internet, we could see their journey to sickness and preventable deaths. They weren’t mere data points in a survey. Some people scoffed at those who believed misinformation, but I viewed them differently. They were victims. They had tried to make sense of a bewildering pandemic, and disinformation producers had led them astray. Maybe the dead even got their information from a close friend who considered sharing a conspiracy theory helpful. Misinformation’s victims were trying to take control of their health. They did what they thought was right. If only a reliable source had won their trust.
Me as a doctor in training in the early 2000s at George Washington University.
Conspiracy theory and conjecture weren’t new in medicine at all. Anyone who’s ever worn scrubs could tell you that. By the time Covid came along, I had been a physician for nearly two decades. Although it had been years since I stopped practicing rheumatology full time in favor of corporate roles, I continued to teach medical school students at the University of Miami and treat patients at a clinic for people with low incomes, primarily Haitian immigrants, in Miami. After spending my pandemic year on the internet, I noticed misinformation creeping into my real-world patient encounters.
One young man, in particular, stood out. He looked healthy enough. He was smart and established in his career. But he said he felt awful all the time. When he proudly ran down the list of vitamins, herbal supplements, and energy drinks he consumed daily, I explained how that might have harmed his health. He was surprised, like he expected me to confirm that this twisted cocktail he built while cruising the internet would boost his immune system, as if he were taking a proactive step doctors only wished every patient would mimic.
Despite misinformation’s destructive grip on patients and the clinicians who treat them, I hardly registered its stubborn presence in the clinic until it became impossible to ignore. Soon, I doubted whether I had spent a single day as a physician without bumping up against a falsehood that jeopardized patient health.
“You’re in big pharma’s pocket, so of course I’m not going to take my meds.”
“I heard smoking weed cures cancer. Is that right, doc?”
“I’ve done my research, and it’s pretty clear that vaccines cause autism. Polio and measles aren’t really problems anymore, anyway.”
Misinformation was more than a side effect of our new smartphone-obsessed, social media–saturated culture. The internet in the age of Covid only complicated a challenge no one seemed prepared or eager to solve. In healthcare, we didn’t consider it systemic. It was an individual, patient-by-patient challenge. It was public health’s problem, no matter how underfunded state and local agencies were. But all that changed when the pandemic struck
and more people started paying for their ignorance and healthcare’s inaction. Reflecting on my clinical career, I came to understand that misinformation had been with me—been with us all—from the start. Unless the healthcare system did something about it, the problem could be with us forever.
MY PATIENT WAS DEAD before we even met.
Not by clinical standards, of course, but by that gut feeling that comes with experience—one every physician comes to know after spending enough time at the threshold of life and death. The patient, Jerome, was still breathing when I entered his room. He struggled to move, enshrouded by the stark white hospital bed sheets, his clavicles jutting upward from his frail, wasting body. It was the early 2000s in Washington, DC. I was young, but I had seen enough to perform the rapid-fire calculations that led me to an inevitable conclusion: Jerome didn’t have much time.
He had developed a severe case of coccidioidal meningitis, a fungal infection that preys on people with compromised immune systems. Fungus isn’t supposed to grow on your brain like it does on bread, but brain cell by brain cell, Jerome’s infection spread, debilitating him as it went. It might take days, weeks, or months, but meningitis would consume him.
I was an ambitious and dedicated intern working as many as 100 hours a week and regularly spending 24- to 48-hour shifts on call at George Washington University Hospital. I obsessed over doing whatever I could to help my patients walk out alive and well. So I held out hope I would find a lifesaving data point that everyone else had missed, something that could reverse Jerome’s condition. I analyzed his CT scans and his chart and met with attending physicians. But my investigation only confirmed my suspicions: He was dying because he had AIDS. Patients with the virus often developed coccidioidal meningitis, in what’s called an “opportunistic infection.”
Jerome came to the ER in an ambulance after a public seizure, which prompted a stranger to call 911. His case was typical for DC during that era. Just a few years older than me, Jerome was a
Me and my dad, in front of the George Washington University Hospital, where I did my residency and fellowship.
20-something Black man from a rough neighborhood, where hard drugs, governmental neglect, and the HIV/AIDS crisis had ravaged the community for more than two decades. He was a frequent flier— one of many patients from the nearby low-income neighborhoods, where access to preventive care was scant, who ended up in our hospital a lot. I had seen tragic endings for too many patients like Jerome in my brief time as a medical resident. Still, I always found a way to press on, to preserve hope. Was it optimism or naiveté? All I knew was that the energy seemed to drain out of me as I stood near Jerome. Everything I learned during my training—my whole life—now seemed futile in this quiet, dimly lit room.
I understood Jerome’s condition, but I had to dig deeper before I could treat him. I pepped myself up to fire off a long list of questions to a man who could hardly think—a man whose brain was inflamed by fungus. As I approached, I avoided eye contact to manage my own emotional discomfort. He avoided eye contact because his coccidioidal meningitis caused photophobia, an intense sensitivity to any sort of light, including the faint fluorescent rays that
sneaked their way from the hallway into the hospital room. Jerome couldn’t have looked at me if he wanted to.
We were both upset. Who wouldn’t be? Jerome was young, but instead of preparing for a future and a family, he lay decimated in a hospital bed. I was a young doctor who suddenly felt like some hardened veteran.
When I asked him about his life, Jerome found the strength to speak with his eyes firmly shut. He had grown up in a rough neighborhood, with a tight social circle, and he had just come off a scorched-earth adolescence. I asked him if he used drugs. Yes, he injected heroin, but he didn’t do it every day, he told me. Then I dug into his sexual history. Not long ago, Jerome said, he was a charmer with plenty of girlfriends. Then I asked him whether he used condoms. “Sometimes,” he responded, “sometimes not.”
I realized Jerome collected risk factors like kids catch colds. Although he used clean needles, he never considered that condoms might defend his body against the virus that was killing him.
“Dr. G,” he said, “no one told me I could get AIDS. I thought you had to be gay to get AIDS. I’m not gay. This can’t happen to me.”
The shriveling man before me looked much older than his age, but I pictured a fuller, vibrant version of Jerome laughing at a family barbecue or flirting his way across a dark, crowded bar as music blared. Before this, he was healthy. No medications or allergies. His family history of disease didn’t raise any red flags. The more Jerome talked, the clearer it became that he shouldn’t have developed a terminal disease before his 30th birthday. But he had—and it was all because of a wild misconception.
At the time, Jerome’s confusion about how he got HIV didn’t strike me. When you’re in the trenches treating people who were raised with the world’s ills bearing down on them, it’s common to hear rumors passed off as fact and to see illusions turn deadly. I didn’t know it then, but Jerome’s insistence that he couldn’t have been infected with HIV because he had never had sex with a man would echo through my mind for the next 20 years. It will probably stick with me for the rest of my life. It’s impossible to forget a man on his deathbed pleading with his doctor to explain
how a sexually transmitted infection could have cut him down in his prime.
It was also impossible for me to know then that quashing misinformation would become a core reality of life as a physician, as common as discussing a diagnosis.
JEROME WASN’T OUR only frequent flier with AIDS. He wasn’t unique in making a fatal misconception about the spread of HIV. He was merely the latest victim in a sprawling blaze of misinformation around the virus, which had been burning since 1981, when public health experts began researching a mysterious illness harming gay men across the United States. A generation later, amid the height of Covid, I decided to scour academic databases for anything that might shed light on HIV/ AIDS and its ties to misinformation. I wanted to find out what had influenced Jerome.
Before the CDC coined the term “auto immune deficiency syndrome,” better known as AIDS, a group of researchers called it “GRID,” or gay-related immune deficiency, due to the unfounded belief the disease was inherently tied to homosexuality. It wasn’t until 1983, two years after HIV blew up, that CDC investigators confirmed the virus could also infect women, signaling the burgeoning global epidemic could spread through heterosexual hookups. Not long after, AIDS appeared in children. That finding further muddied the waters, prodding some scientists to infer that casual contact—perhaps a hug, a handshake, or a passing hello— could catapult the contagion from one unsuspecting person to the next. Toward the end of 1983, scientists and public health officials gained a greater understanding of HIV and AIDS, publicizing how the virus spreads, rebuffing rumors, and issuing guidance for healthcare workers. But the world was only beginning to comprehend what we were up against.1
Our early failure to understand the HIV/AIDS crisis was in part a product of science in motion: A new disease pops into public consciousness, epidemiologists make mistakes as they scramble to make sense of it, some journalists publish half-baked reports,
and the public pays the price of not knowing. But HIV’s rise also activated some of our worst impulses. In the early 1980s, the Lancet published a hypothesis letter that connected AIDS to a variant of African swine fever virus, with hardly any evidence to support it. During the casual contact scare, the Journal of the American Medical Association and other prestigious medical journals appeared to back the dubious claim.2 Our brightest minds didn’t shy away from floating theories that would fuel misinformation.
Eager for answers and eyeballs, reporters jumped on the story, sometimes at the risk of the truth. News outlets published thousands of HIV/AIDS stories. In 1983, a Newsweek science writer for instance, elevated terrifying claims of spread via close contact.3 The worst coverage targeted gay men—the community suffering most—as culprits and plague rats worthy of ridicule and attack. At the dawn of the epidemic, a physician writer who later became a prominent AIDS activist dismissed the idea of a deadly emerging disease, in the first ever US piece on the crisis.4 NPR journalists recently pointed to this story as a catalyst to the following current of HIV/AIDS misinformation, drawing parallels to the Covid-19 pandemic. “As often happens, when science is searching for the answers and formulating hypotheses, attractive theories get elevated to facts prematurely,” the reporters wrote. “And even after they’re disproved by solid scientific studies, the public may not get the news—the wrong ideas persist—and if it’s convenient, politicians may exploit the misunderstandings.”5
Politics and bigotry certainly came into play. The Soviet Union turned the uncertainty surrounding AIDS into a global conspiracy. To sow anti-American sentiment, the Soviet Union launched a disinformation campaign that painted the growing epidemic as an American biological weapon unleashing fury in much of the developing world, including Asia and Africa.6 The information smokescreen evolved and mutated for years. Wherever it went, oppression and death followed. In just one example, South Africa’s president, Thabo Mbeki, embraced AIDS denialism and implemented disastrous policies that experts estimate caused 330,000-plus people to die prematurely and 35,000 births of infected babies in just five years.7
Of all the snafus that tainted public understanding of the rise of HIV/AIDS, who was getting sick—and healthcare’s horrible history of serving them—might have done the most harm. Black people and LGBTQIA+ people had already endured centuries of abuse and discrimination from medicine, science, and academia. The media had also wasted far too much ink on ruthless, racist ideas. When HIV arrived, distrust ran rampant in marginalized communities, and for good reason: The healthcare system was skeptical of, if not outright hostile to, diverse people. Why, then, would they trust healthcare?
Black newspapers covered the HIV/AIDS epidemic and the government agencies charged with managing it through a critical lens. Most often, the skepticism was warranted. But in some cases, skepticism turned to cynicism. Some publications spotlighted theories around AIDS as a plot to wipe out Black Americans. In others, the coverage hyped up unproven drugs as magical cures. Falsehoods spread through Black neighborhoods.8 By 2015, the American Journal of Public Health published an article linking historical distrust and early misconceptions about HIV transmission to misinformation that persists today.9
My makeshift literature review was eye-opening, but I needed a perspective from someone who was there. As a chief medical officer of Salesforce, I worked with Abner Mason, the founder and CEO of a culturally focused patient engagement company the organization had invested in. He had spent years successfully advocating for the US to step up its fight against HIV/AIDS at home and abroad. Around the time I was treating Jerome in DC, Abner was celebrating the passage of a law commonly known as the Global AIDS Act, which secured billions of dollars to address the crisis in Africa. He helped push it through, both as a member of George W. Bush’s Presidential Advisory Council on HIV/AIDS and as the head of the AIDS Responsibility Project. I wanted to know what Abner recalled about misinformation’s relationship with the virus from the outset.
As a student at Harvard University, Abner, a gay Black man, had heard about a new disease called GRID that was killing people like him. After he graduated, activists and patients began protesting for access to promising treatments before they had earned FDA
approval. Abner joined a gay political advocacy group that pressured Congress to act. “Because it was purely portrayed as a gay men’s disease, it didn’t come up in conversation with people who weren’t gay,” Abner recalled. “It was like, ‘That’s over there, and it’s not over here.’ That’s what I remember, that it just wasn’t talked about, and I think that was a mistake.”
By 1990, Abner and his fellow advocates influenced Congress to pass the Ryan White CARE Act, one of the first major pieces of legislation to address HIV/AIDS in the US, named for a teenager who died from the disease after a tainted blood infusion. Political maneuvering required HIV/AIDS leaders to educate and sway lawmakers who themselves had fallen for misinformation. As the epidemic raged through communities of color, the catastrophic effects of rumors and lies became even more personal to Abner and his family. “I had cousins who passed away from AIDS. One was gay, but the other one was not. He was married, and in his case, it was recreational IV drug use,” Abner said. His cousin wasn’t an everyday addict, but an occasional user with a decent job, like my patient Jerome. “I even remember the family not believing it— not wanting to believe it— and it was just a tremendously terrible thing for my family. He infected his wife, she had a baby, and the baby was infected.” The woman survived, but she lost her husband and baby to AIDS. “It was a really tough thing on my family, and there was an unwillingness to acknowledge that he had HIV until the wife and baby got it. It was kind of hard to ignore that.”
In the 2000s, Abner launched a nonprofit geared toward reducing HIV/AIDS stigma in Mexico’s workplaces. He would walk into a plush office, sit across from the CEO of a multinational company, and deliver his pitch. More times than he can count, Abner received a whispered response. “That’s a disease for poor people. Our employees are professionals. It’s not a disease anyone in our company would get.” After some prodding, the CEO would eventually come to terms with, or admit they already understood, the reality: HIV/AIDS could and did affect their colleagues.
Years of uncomfortable conversations, botched media reports, and deaths led Abner to a conclusion: “Disinformation grows in the dark.” In fact, only after President Bush and Congress allocated billions of dollars to combat HIV/AIDS internationally in 2003 did Abner see the stigma and misinformation begin to let up. “It happened almost like switching on a light.”
Soaking in Abner’s story, I thought of Jerome. He was dying before my eyes, on the verge of joining the 700,000 Americans who would pay the ultimate price to HIV/AIDS by 2021.10 Back then, no one bothered to measure or even guess misinformation’s complicity in their deaths. Now, we’ll never know just how many of those people would have lived or avoided infection altogether had healthcare only helped them discover the truth.
EVERY DOCTOR HAS a moment like I did with Jerome. “I thought you had to be gay to get AIDS.” We might not register its significance right away, but its gravity eventually pulls us toward this harsh truth: Misinformation kills.
Before we watch our misinformed patients meet their end, there is suffering—for the patient and their loved ones, and for their care teams. Good people bear unspeakable pain and regret, beginning their sentences with “If only” and “I wish I had known.” Good friends and family members cry at the bedside. Good doctors wonder why they ever chose to enter medicine.
When Jerome fell for misinformation, he perpetuated a cycle that would ultimately pose a risk to my own health. After I dug up what little I could about his family history and performed a physical exam, it was time to confirm the diagnosis with a lumbar puncture, or spinal tap, to gather cerebrospinal fluid from his spinal canal. It meant I had to insert a needle so large and thick that it felt more like a knife wound than a pinprick to his wasting body. “This needle is going to go right through this guy,” I thought. No matter who the patient was, the “LP” was always a daunting procedure, but Jerome’s HIV-positive status amplified my anxiety levels. His viral load was high. What if I made a mistake? I was only in training. A small
slip of the needle, and HIV could have entered my bloodstream. I might never meet another partner. I might never have children.
I pushed those thoughts aside and donned my personal protective equipment. Jerome got into position, and I administered a local anesthetic for the coming pain. Slowly and steadily, I pressed the long, hollow needle into his lower back, measuring his cerebrospinal fluid pressure and withdrawing the liquid. Nearly an hour passed as I focused on the task. The clock ticked on. Jerome faced away from me while his ribs protruded from his body, vulnerable and in pain. More focus, more time, more fear.
The spinal tap was over. It felt like I had fallen into and crawled out of a trance. I was relieved. Jerome fared well, and I avoided infection. But depending on how long he survived, Jerome would undergo several additional lumbar punctures.
And for what? Nothing would keep him from dying. As a medical resident, I was there primarily to learn. But what insights could I gather from this story, playing on repeat? Did either Jerome or I really need to go through this? How was I serving him as my patient?
As he was dying under my watch, a sick irony unfolded. The origins of HIV/AIDS were no longer so mysterious, and although infected people continued to die, science developed more effective treatments with each passing year. If NBA star Magic Johnson could get HIV and live a happy life, why couldn’t Jerome? And if we knew safe sex averted most potential infections, what did we really have to worry about?
Yet, in neighborhoods across the world, myths surrounded HIV and AIDS. In marginalized communities like Jerome’s, wider distrust in the healthcare system meant some Black people still viewed the epidemic as a conspiracy targeted against them, which hindered efforts to educate people about prevention.11 But as time went on, more people began to get a basic understanding of HIV/AIDS and how to prevent it.
I didn’t know it then, but the truth was outplaying misinformation because of the many public health campaigns, some official and others from grassroots activists, that experimented with one strategy after the next, desperately searching for what might work. In the
1980s, a group of gay rights activists, led by Ben Gardiner, an early technology adopter, used an online forum to combat HIV/AIDS misinformation circulating in San Francisco. In one of its earliest forms, the internet proved helpful in crowdsourcing public health information and experiences from patients.12 For its part, the federal government, through the CDC and other organizations, had invested untold sums in targeted public health campaigns. Celebrities went on TV to push for preventive practices while after-school specials entertained and informed younger audiences. Billboards went up, advertising experts poured money into magazines and newspapers, and HIV/AIDS became standard subject matter in some states’ school health classes. Nonprofit organizations hit the pavement to rein in rumors and distribute condoms. Health systems and clinicians did their part to transmit the truth. As the science matured, so did the press coverage.
It had taken our best efforts, but we had at least begun to manage HIV/AIDS misinformation. We earned the right to be optimistic. In DC, however, Jerome was losing any hope he had left.
A few days after the first lumbar puncture, I returned to Jerome’s room to repeat the procedure. But when I opened the door, he wasn’t there. A nurse told me Jerome was upstairs, on the top floor, in the psychiatric ward. After he and I had parted ways, Jerome began experiencing hallucinations. That can happen when fungus feasts on your brain.
The psychiatric ward made everything harder. In an isolation room, Jerome didn’t have a typical hospital bed, and I lacked proper nursing capacity. Neither of us had enough space. Even so, I had a job to do. I positioned Jerome, numbed his lower back, and prepared the long needle for insertion. It was painful for Jerome and uncomfortable for both of us. One grueling hour later, and we were done.
Over the next month, Jerome and I worked our way through spinal taps and heartbreaking conversations. From the outset, I knew he was destined for hospice, but a flicker of faith kept us from taking that step. After six weeks, it was time.
Before we moved Jerome into end-of-life care, I promised to help him get in touch with some estranged family. Few, if any, members of the social circle that contributed to Jerome’s misconceptions of HIV/AIDS came to say goodbye. But his father showed up. I still recall Jerome’s reaction.
“Dad, I just want you to know,” Jerome said, “I’m not gay.”
He didn’t reflect on his life. He didn’t acknowledge he was dying. He was only embarrassed.
And Jerome’s father? He couldn’t have cared less about Jerome’s sexual identity.
“I’m sorry,” his dad said. “I’m so sorry.”
Jerome died less than three months later. I wondered what went through his mind as he neared the end. Was he still embarrassed? Was he still confused?
I didn’t know. I only hoped he didn’t die in vain—that his father would return home and spread the truth: Anyone can get HIV. Anyone can die from AIDS. It was the kind of wish doctors make when we realize our patients are slipping away. It was a hope I held on to for too many years, through too many deaths, without anything to show for it.
JEROME
DID NOT need to die young and alone in the hospital. As I recall his passing all these years later, it still breaks my heart. His death was too high a price to pay for a young physician to understand the painful consequences of misinformation. It’s one thing to see and feel misinformation’s deadly power as a citizen, who might lose a friend down the conspiracy theory rabbit hole or watch in vain as their elected leaders spout lies and half-truths. It’s another to be a physician charged with caring for patients in an environment where misinformation reigns. As doctors, it’s our duty to understand and empathize with patients who have swallowed the snake oil, and then try to correct course. We’re the ones who have to compete with and clean up the messes made by con artists and zealots. We’re the ones who break the news to heartbroken loved ones, holding their hands and offering our condolences. It’s tedious, macabre work. But managing misinformation’s effects is part of the physician’s job.
