I don’t remember the airline or the destination. It was one of thousands of forgettable flights I’ve boarded in the past thirty years, a conglomerated blur of conferences and lectures and interviews and research meetings, patients, family, and students, all mingled with exhaustion and illness and hope. I’m pretty sure I was in an aisle seat toward the back because my upgrade didn’t come through. I know that I was on my way to give a lecture and that I had one tedious task to do in-flight: reviewing the biography that would be used to introduce me.
If you are a would-be comic—which I am—you can read only so many straitlaced descriptions of yourself before you’re itching to punch things up. The introduction that had been sent for my approval, like most of them, dutifully listed the basics: He teaches medicine, he does research, he runs a clinic. Held an endowed chair here, published papers there, distinguished this and honorary that. It was all very suitable for your typical medical audience: suitable, and boring. I sounded boring. I felt boring.
To break the monotony, I thought that I might incorporate a few more facts. “Dr. Michael Saag tells long stories that he finds charming, and he makes short movies in his spare time.” Or, “He’s known to burst abruptly into song—generally a Broadway show tune or a Marx Brothers classic—with no provocation, and to perform lustily in inappropriate settings, sometimes on key.” Perhaps even “When not engaged in HIV/AIDS research, Dr. Saag is a part-time barber.” (I do cut my sons’ hair in our home’s basement salon, which is complete with a lighted barber pole and posted Shoppe Rules. Rule no. 6: “Mirrors are not allowed in the Shoppe at any time.”)
I’ve amused myself on more than one occasion with strategies by which to jazz up these introductions. But one reason would-be comics are “would-be” is that they lack courage. I’ve never dared do it. I’ve considered replacing my straight lecture with a mix of lecture-and-shtick, half research and half jokes, just to see if anyone notices. More recently, I’ve fantasized about supplanting my scholarly lecture with a full-throated rant about the failures of the US healthcare system—not particularly funny, perhaps, but certainly less boring.
For pre-scripted introductions, I always stop short and just edit what they sent me. I sink Walter Mitty-like into my airline seat, playing only the role of the tired, overbooked nomad I have become, and I do the minimum necessary to keep the introduction honest. Okay, it’s accurate if uninteresting: check. I skim the packet for place and time of lecture: check. I take one more look at my balanced, benign lecture: in order, check.
Typically, this is the moment when—despite my best intentions of grabbing a beer or a nap—I let myself wander off into almost-thought. I try to recall why I went into medicine: what motivated or deluded me, what I imagined and expected. I think about how, over three decades of unparalleled advances in science and healing, so much about practicing medicine seems to have gotten worse. Medical professionals’ time with patients has decreased while the workload has increased. The cost of patient care has risen by almost every measure, while insurers appear to profit more and help less. On any given day, I’m barely holding it together enough to see patients, write proposals, attend university meetings, guide research, teach, mentor, and spend a few minutes with my wife. When the children were younger, I swear that my daughter used to call me “Uncle Dad.” And I’m not uncommon. I’m typical of the women and men in my field.
By the time I’ve ruminated my way to this lament, I no longer feel like a comic. I’m now a critic, or maybe the author of a scathing op-ed. What infuriates me is that America is so rich in medical know-how, human resources, technology, and good will that, with relatively few adjustments, it could be home to the best healthcare in the world. Could be.
I have a speech I give mostly while holding the steering wheel. It’s all about how to make American healthcare the envy of the world. I give it while driving to the clinic early in the morning, before the frustrations of the day have brought me down. If I’m still delivering my masterpiece as I pull into the parking lot outside the lab, I already know what my team of colleagues would say if they heard my brilliance: “Mike’s got his magical thinking going today.” I see Bonnie’s rolling eyes and Jim’s knowing grin as they catch me at it. Only when I exasperate them beyond all human limits do they actually say what they otherwise merely think: “You’re pretending that the impossible is within reach, Mike, and that because you can imagine it, it’ll happen. Life and medicine don’t work that way. Stop it!”
I like magical thinking. I grew up in a family that saw magic in the “sixth sense” of my great-aunt Florence, fondly regarded as the family’s good witch. She was a southern lady in touch with another world, with an inexplicable knack for foreseeing or affecting events. She accepted this reality as happily as she responded to the only name by which the adults ever referenced her, “Flo Honey” pronounced as one word: Flohoney.
Throughout my medical career, colleagues have complained—sometimes in colorful terms—that it would take a magician to pull off the goals I set for our work together. Maybe. But my reigning belief is that aiming high is reasonable, even fun. Saying we’re going to achieve what hasn’t been achieved before is a perfect objective for research; otherwise, why do it? Saving a life that would otherwise be lost is a mandatory hope for a physician. Looking to change a procedure that doesn’t work, or a policy that results in patients dying—this isn’t “magic.” It’s necessary. It’s why we’re here. It’s what gives us meaning.
Maybe I whine about prespeech introductions because they make me feel like everything’s been done that’s going to be done, at least by me. “Dr. Saag has published … taught … participated … led …” My life is recast in the past tense. And the script of my life is converted to a fairy tale because no one wants to tell the unvarnished truth: “Dr. Saag has embarrassed himself as he’s failed … stumbled … ignored … whined …” In fact, I don’t live in the past, and my past is as littered with false starts as it is with happy outcomes. Research isn’t a steady march to genius; it’s a trial-and-error process that frustrates your best guesses and only occasionally rewards your instincts.
In the end, the achievements and the flops add up to what’s been done. What I’d really like to think is that we stand on what we’ve done to reach for what’s ahead, that the past is only our footstool. And what this does for me—this “standing on the shoulders of our past” thinking—is launch me out of the here-and-now and into the world as it should be. Once there, I look around, smile, and say to myself, “Yeah, this is right. This is what we should be doing. This is it.” When I return from such visits and share my convictions about what I’ve seen, that’s when my colleagues’ eyes start rolling.
During my thirty years slugging it out in the US medical system, all sorts of things I believed to be certainties have turned out not to be even close. I went to the University of Alabama at Birmingham (UAB) expecting to become a cardiologist, and instead I stumbled into an entirely different specialty, infectious diseases. I imagined settling into a private practice where work hours would leave time for friends, football, a marriage, and a family. My imagination had not factored in the events of June 5, 1981, when the US Centers for Disease Control reported eight cases of unusual opportunistic infections in gay men, and I happened to be where that mattered. In time, the “gay cancer” first described came to be known as Acquired Immune Deficiency Syndrome, caused by the Human Immunodeficiency Virus. I couldn’t then have imagined that brawling with HIV and knocking out AIDS would become my life’s passion.
Months passed, then years, and with time I found myself chasing an elusive cure—or, if not a cure, at least something to slow the suffering and dying—all the while watching as the pandemic killed people I’d come to know and love. What we needed to do, it seemed to me, was so clear, so simple: We just needed to stop the virus. If we knew how to stop the virus, we could stop the terror, the wasting, the dying.
Thirty-some years later I think I was right about what needed to be done in an ideal sense: The virus should be stopped. By now, science has given us the tools to stop the virus. But in the real world where my patients live and my colleagues work, medicine hasn’t been able to end the plague, because knowing how to keep someone alive doesn’t necessarily or magically morph into public policy that keeps them alive. They don’t need to die of a disease we can manage, but they do. They’ve been dying for more than thirty years. They are dying as I write this sentence. They’ll die before you finish reading this page.
I came into medicine believing that we—my fellow professionals and I—would care for people based on need, not on finance or public opinion. I was wrong. I came in believing that drug companies developed drugs to help people, independent of what the market would support. Wrong. I thought health insurance companies felt a responsibility to provide just as much benefit for their policyholders as for their shareholders. Wrong again. I originally suffered something more than magical thinking; I was possessed by naïveté.
Over the years, the naïve elements in my thinking have largely been beaten out of me. I’ve been schooled as a witness to withering illness and excruciating death, some as an immediate consequence of policies intended only to save money, not lives. I’ve been disciplined by caring for hundreds—perhaps by now it’s thousands—of people dying of a disease that their insurers balk at covering and their parents dare not mention to friends. In my world, when we’re winning, we’re still going broke. And when we’re losing, our patients are treated like twenty-first-century lepers: Their family puts “cancer” in the obituary because they don’t want the shame of saying plainly that my patient died of AIDS.
If I’ve lost my innocence, I still haven’t lost my optimism. Even in the darkest corners of the AIDS pandemic, I’ve seen flickers of the coherent, compassionate medical system that all of us want and deserve.
It isn’t only in my Walter Mitty world that I see colleagues’ heroism, patients revived, and hope justified. I’ve seen ordinary people put their lives on hold and come together to advocate and care for those who suffer, as well as to bury those who die. They did it without asking who would pay. They only wanted the suffering to stop and, when it could only be stopped by death, they—we—leaned on each other until the grieving eased.
I’ve watched parents (especially mothers), partners, and spouses care for those who are dying, compensating for their lack of medical training with the incredible power of love. They gave up sleep and sometimes careers, risked their own financial ruin, and devoted themselves to another human being who was dying. It didn’t get them bonus points or angel’s wings; it got them exhaustion. And sometimes, I’ve seen people do it twice.
I’ve seen the stinginess of institutions overcome by the self-sacrifice of individual nurses, passionate social workers, devoted admissions staff, and honest doctors. I’ve seen patients, medical professionals, and community advocates bound by such commitment to one another that they’re not just what industry jargon calls a “medical home”—they’re a bona fide medical neighborhood.
When I rehearse all of this, even in the back of a stuffy jetliner, I’m pulled back toward the reality that healing is possible. I may have boarded the flight with my optimism running on fumes, but remembering these remarkable colleagues revives me. It’s why I keep packing up my magical thinking and getting on these planes: to lobby the policymakers, to give pep talks to fellow researchers, to teach new generations of practitioners. It’s why I gather stories from America’s medical neighborhoods and share them in my lectures, my movies—and now, for the first time, in a book.
Riding airplanes, I’ve met a lot of people who genuinely believe that America is well served by the existing healthcare system. If that’s really been their experience, then as Carol Linn (one of my nurses) would say, “Bless their hearts.” But if their granddaughter contracts cystic fibrosis and they are short of cash; if their son is diagnosed with diabetes and they had saved money by buying a low-cost insurance plan; if they become unemployed and uninsured and suffer the usual fate encountered by those ineligible for Medicare—for these, my nurse reserves another saying: “God help ’em.” They are, whether they know it or not, on their way to bankruptcy.
What makes magic “magic” is doing a trick that everyone knows has to be a trick; it’s impossible. No one can drive a sword through an occupied box and not hit some flesh and bone. Nobody can levitate on cue or draw rabbits from empty hats. But when we see with our eyes what we know with our brains isn’t possible, we ooh and aah and call it magic.
The real magicians, it turns out, are the insurance companies and politicians who claim that we have “the best healthcare system in the world” right here in the U. S. of A. This is where we should be oohing and aahing. The magic is that some of us believe this! My nonmagical thinking reminds me that in fact, the United States has an infant mortality rate twice as high as that of Sweden and Germany, as well as a maternal mortality rate twice as high as the United Kingdom’s and seven times higher than Australia’s. Is it “best” to rank far behind other developed nations, such as Japan and Denmark, in physician visits per capita? Or well behind France or Switzerland in per capita days of hospital treatment? If America’s system really was the best, would a US patient facing renal failure be one-half to one-third less likely to get a kidney transplant than a patient in Spain or Canada? The magicians have convinced us that we’re best. We’re not.
Here’s an item that someone in my audience always believes I’ve made up; it’s too outlandish to be true. Sorry, but it is true: Two-thirds of personal bankruptcies in the United States are precipitated by medical bills that can’t be paid, even among those with insurance. In fact, most of the bankruptcies occur among those who have health insurance. There just wasn’t enough insurance.
The US healthcare system is far and away the globe’s leader in one category: cost. Americans’ average per-person cost for healthcare each year? Nearly $8,000, compared to less than $5,000 for our neighbors across the border in Canada. Those out-of-pocket payments you cough up for care? They’re two or three times what your German or French counterparts pay. And the procedures and drugs you need to maintain your health, everything from a heart bypass to a dose of cholesterol-lowering medicine to a doctor’s office visit? They’re more expensive—usually significantly more—in the United States than in other developed countries. Even an insurance trade association’s survey of medical services and products around the globe concludes that US costs sit atop every major category measured in every single developed nation. To add insult to injury, as the cost of US healthcare keeps escalating, the dollars are increasingly going into corporate profits, not into the pockets of patients, families, or caregivers.
As out of whack as this is, the most maddening truth about our healthcare system is that despite my zany magical thinking, we don’t need magic to fix it. Providing affordable, appropriate care to all Americans is not at all impossible. It’s unquestionably within reach. Unquestionably. No magical thinking needed. A common sense application of what we already know can get us there.
Every second of every hour of every day, the leadership of the United States chooses not to do it, and we all participate with them in their decision. We choose not to save that child’s life or that woman’s eye or that man’s career or that family’s future. The choice is made before the child or the woman shows up for care, because they show up too late, owing to lack of access to care. We who know better go mute when the syndicate dominated by insurance lobbyists and those elected on their money obscure the truth. We make these choices quietly, so no one quite notices. We use fancy language—try “cost prioritization” or “resource allocation”—to obscure the harsh truth: We are choosing who gets treatment and who gets ignored, who will live and who will die, not by virtue of their illness but on the grounds of what insurance they have (or don’t have) and what annual income they can confirm (or can’t). These factors control access.
Honestly, this is not magical thinking. It isn’t whining about our past or lamenting our present. It’s the unhappy and unnecessary truth. For those who think otherwise, well, “bless their hearts.”
And for those who are already learning these truths through experience? “God help ’em.”