All by myself, with no one to tell me anything different, I’ll never grow up. I like this about myself, a lot, even if I don’t want my university president or august audiences to know. In my head, I’m fourteen years old, innocent in my thinking, exuberant and hopeful.
Or if not fourteen years old, then eighteen years old at most, like the college freshmen in a play I started writing when I was at Tulane. Called House of Doors, it was a terribly earnest play and a deep one. I won’t spoil the ending for you, in case I become a published playwright in retirement. But in Act One, the students are running excitedly through a huge, magical house, opening the doors to dozens and dozens of rooms.
The scene’s fairly transparent message is that options are limitless; everything is possible. I wrote it this way because that’s how I want life to be. The tragic reality that everything is not possible is something that I rail against, to this day. Resisting such reality is my way of fighting cynicism—which is, after all, only frustrated idealism.
I admit that my idealism has taken some hard knocks during my career in AIDS medicine. It seemed like an honorable part that we scientists were playing, discovering new ways to tame disease. I expected that if we did our part, the other players in this enterprise—politicians, regulators, insurers—surely would do their part, building on our discoveries to expand and improve healthcare.
Such great expectations. But, in many ways, so little progress.
In the 1980s, we had one overriding question: How do we stop the dying? In the 1990s, we had an answer: antiretrovirals. Decades later, we still have the damned question: How do we stop the dying? We succeeded at the science, and we brought the science to medicine, but it wasn’t enough—because nobody has succeeded at fixing the system that embraces both science and medicine. (Were it not for the Ryan White program—a Band-Aid, not a systemic fix—more than 60 percent of the patients with HIV would go without treatment.) I appreciate ironic plot twists as much as the next guy, but this one is getting old: snatching defeat from the jaws of victory, transforming success into failure.
Does anybody really believe that in America, home to some of the most gifted and inventive thinkers on the planet, we can solve healthcare’s medical mysteries but not its procedural or economic ones? I’m not buying it.
If Beatrice Hahn could clone and sequence the newly discovered AIDS virus, then somebody can clone the most patient-friendly, cost-effective approaches to healthcare delivery and propagate them nationwide. If the 1917 Clinic’s EMR data could prove that early, comprehensive treatment dramatically reduces healthcare costs, then somebody can adapt and apply that approach to illnesses and patient populations nationwide.
Simplifying the system for patients, reining in costs, improving provider performance, moderating the influence of the pharmaceutical and insurance industries—every one of these objectives can be achieved. But only if we all step out of our separate fiefdoms and our precious profit centers and work collaboratively.
It’s time for all parties in this debate to account for what they bring, or fail to bring, to this flawed system. Because people keep falling through the cracks in it, and try as we might, we don’t pull them all out alive.
Accessing healthcare in America today is so complicated that at one time or another, almost every one of us will need an advocate, a knowledgeable guide, to get through aspects of it. Why is this situation allowed to persist? Either the system should be made navigable for everyone who has to use it—or those at the top should admit that they don’t want it to be. They like it as it is, even if their favorite theme is, “It’s too complicated for us to change.”
If every patient, including the most vulnerable, can’t move through America’s healthcare system without expert assistance, then that’s what must be provided. A whole new category of personnel must be built into the system expressly to explain its arcane aspects and help consumers navigate them. These navigators will be valuable to any patient but absolutely indispensable for patients who are disadvantaged by infirmity, age, or lack of education. And in the coming years, we’ll need ever more of them as the aging baby boomer population experiences more chronic illness and as healthcare becomes more technologically advanced, specialized, and fragmented.
Patient care is fragmented in major ways. Individual aspects of a patient’s health are regarded one at a time instead of as a continuum, a whole. Then aspects of a patient’s care are parceled out among many different providers. The further we move into the twenty-first century, the less we are likely to find a provider who thinks longitudinally about a patient’s whole story. Increasingly, providers look at chiefly (or only) whatever complaint the patient showed up with today, trying to make that go away today. In many cases, we do this because we lack the time, resources, and perspective to address a complaint within the context of everything going on with the patient.
Perhaps the best—and most scary—example of how we’re cementing this fragmented approach is found in the training of physicians today. When I went through training, all patients who came into the hospital on my day “on call” were admitted by me. I followed them every day; when it was time for them to go home, I discharged them. I was their doctor. To accomplish this continuum of care I had to work 90 to 100 hours per week, but I did.
Nowadays, owing to fairly radical changes in house staff (medical resident) duty hours, a physician in training cannot stay in the hospital more than fourteen consecutive hours, must have eight hours between shifts, and cannot work more than six days without a day off per week. On the surface this sounds both reasonable and humane. For the medical resident, it is.
But when these rules are implemented, it’s common—even the norm—for a newly admitted patient to be worked up by one doctor, handed off to another the next morning, to still another in the late afternoon, and covered overnight by yet another. It is uncommon for the same person who admitted the patient to discharge them home. No one knows the patient as a person; each of us know their immediate need and our immediate response.
My son Harry, who as I write is a first-year resident at NYU Medical Center, went through his first seven weeks of training without following a single patient from admission through discharge and without either handing off the patients’ daily care to someone else or picking the patient up from a colleague who admitted them first.
This story is not unique to NYU. Rather, every training program is experiencing the same phenomena. One month recently when I was attending physician on the medical service at UAB, 68 percent of the patients admitted to my service were initially admitted by someone not on my team. This means that a night-float resident did the initial workup and handed off the patient to someone on my team the next morning.
The reason for restricting duty hours is to minimize fatigue, with an eye toward minimizing errors made by tired residents. But my question is: How many errors are generated now owing to handoffs? In terms of the provider, I fear that the quality of care can’t help but be affected by a lack of continuity and familiarity with a patient’s case, not to mention the alarm from the patient and family’s perspective of not having a clue who their primary doctor really is.
Do you know what the most common question is among patients in the hospital today?
“Who is my doctor?”
The sad reality is that this is a symptom of our health delivery system careening into fragmentation and chaos. Providers are more and more becoming shift workers who check in at 0700 and check out at 1700 hours. This may work for nonprimary care services like the emergency room, pathology, or radiology—but it endorses discontinuity and lack of ownership of the patient’s full experience by the primary provider. We are teaching our new doctors how to hand off, not how to hold on. And these are the providers who will be taking care of me as I get older. Not a comforting thought.
A related problem, according to Shannon Brownlee, is that “Our medical workforce is upside down.”
Long one of the most respected US journalists covering healthcare and medicine, Brownlee now heads the health policy program at the nonpartisan New America Foundation. In a 2012 article in The Atlantic magazine, Brownlee noted that, “Most developed countries have many more primary care docs than specialists. In the United States, it’s the reverse, with nearly two specialists per primary care physician. Not coincidentally, those other countries’ populations are also healthier than ours, and they stay that way while spending less on medical care. There’s no reason to keep paying academic medicine to produce more specialists than we need, while millions of Americans don’t have a regular primary care doctor.”
The proliferation of specialties and subspecialties further raises the risk of fragmentation. By increasingly staffing the system with specialists who work either in just one aspect of medicine or in one medical service location, we insure that a patient’s care will be delivered by a greater number of practitioners, none of whom are expected to know all the patient’s medical needs or full medical history.
I’m a specialist who works with hundreds of first-rate specialists every year, so it’s not specialization per se that I’m questioning. It’s the movement toward crossbreeding medical specialization with a sort of factory model. It reminds me of what occurred in the US auto industry. In the early days of auto production, cars were made one at a time by teams of craftsmen who had a bumper-to-bumper understanding of the finished product. Then in 1913 came the assembly line. From then on, many workers would have fleeting contact with each car. They became knowledgeable about parts, not cars. The factory model does the same for patient care: Caregivers know charts, not patients. It might make it faster or more efficient for institutions, but it absolutely makes it less personal and less coherent for patients.
The fastest-growing medical specialty in the United States is hospital medicine—that is, the training of so-called “hospitalists” to provide general medical care to patients while they are in the hospital. Increasingly, a primary care physician (PCP) will refer a patient to a hospital medicine practice when the patient is admitted. The practice’s hospitalists will care for the patient throughout the stay, ostensibly in consultation with the patient’s PCP and other specialists. Then upon release, the patient is returned to the care of his or her own PCP and specialists.
Early in the 1990s, the use of hospitalists was touted as a way to increase care quality by having providers with inpatient expertise working full time in the hospital. But it also was promoted as a way to decrease healthcare costs, and that may have been its most seductive trait.
According to the original concept, the hospitalist was to be part concierge, part advocate, part ringmaster. He or she was to know all the ins and outs of the hospital, including staff strengths, then create the right teams to surround and care for each patient. But as it has worked out in most US facilities, hospitalists rarely have time to organize or deliver such coherent care in concert with the PCPs or specialists on whose behalf they are seeing the patients. So the hospitalist, too, becomes more a shift worker than a continuity-of-care provider—just one more character in an ever-changing cast of practitioners who, under those circumstances, cannot possibly follow individual patients and circumstances comprehensively.
In many cases, soon after hospitalists were put in place, their role was redefined, whether or not they wished it (and whether or not this was openly stated). Hospitalists came to operate almost as part of the business office; it fell to them to try to make each patient at least a revenue-neutral creature and, better, a profit center. One of my colleagues tells of a large Midwestern hospital where the first task of the hospitalist when he or she came in for a shift was to find out which expensive pieces of medical machinery and which high-dollar-billing staff members were not fully allocated for the coming six to ten hours. If they established that some resources would not be in constant use—i.e., not making money for the hospital every minute of every hour of every day—then they were encouraged to look for patients who might fill the open spots in those dance cards.
Most of the time when patients get tests, treatments, or care that’s unnecessary, duplicative, or excessive, it’s because their many providers haven’t communicated enough with each other to head off such foul-ups. The delivery of unnecessary healthcare services is part of the reason the United States has higher healthcare spending but a less healthy population than other countries, according to healthcare expert Brownlee, author of the book Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer.
“The way to fight waste is by reorganizing the way doctors and nurses and hospitals provide care,” Brownlee said in a 2008 Reader’s Digest article. “There are models out there of high-quality, low-cost care, and they include some of the most trusted names in medicine: the Mayo Clinic, Kaiser, and Intermountain Healthcare. These programs have a primary provider coordinate all the care. They understand that twenty-first-century medicine is a team sport. They also put a premium on analyzing the best available evidence and then ensuring that their doctors follow it.” The savings from this kind of reform would be significant, according to Brownlee: “Cutting out even half of the unnecessary health care in this country would be enough to cover every citizen who is now uninsured.”
I would never say that hospitalists are bad doctors. They go through the same kind of training as other MDs and are fully committed to providing their best service while in the hospital. Nor would I argue that having 24/7 hospital-based doctors is, on its face, a bad idea.
But if the use of hospitalists initially was seen as a way to enhance patient welfare, over time I believe it has become a way chiefly to enhance financial margins. That is probably the chief reason that hospital medicine practices have grown so rapidly and why so many hospitals foot the bill to entice hospitalists to work in their system. In 2003, hospitalists were in only 29 percent of hospitals, but by 2009 they were in 58 percent of all hospitals and in 89 percent of hospitals with 200+ beds, according to their professional organization, the Society of Hospital Medicine.
Put another way: If you spend a few days in a good-sized hospital anywhere in America today, there’s a very good chance that “your doctor” will be someone (or a series of someones) that you’ve never laid eyes on before. This doesn’t increase anyone’s chances—yours, the doctor’s, or the hospital’s—for patient-centered medicine with great outcomes. And by great outcomes, I mean patients getting consistent (nonhandoff), appropriate, cost-effective care, staying only as long as necessary, and not needing readmission because they were sent home prematurely.
Perhaps a majority of physicians feel frustrated by the healthcare system today. A good number find enough satisfaction because of the personal wealth it brings them. They focus less on whether they get joy out of the work day to day and more on how much money they can make. I like material things, too, but I’ve always fought the notion that the acquisition of things is the purpose of my career.
It would help if the US health system assured not just fairness in access and coverage for patients, but fairness in reimbursement for providers. I don’t see any reason a cardiovascular surgeon gets paid ten times more than an internist. They’re all equally replaceable; if one were to die, you’d find another. And in what Brownlee rightly calls the “team sport” of modern medicine, it could be argued that PCPs—family practitioners, internists, pediatricians, OB/GYNs, nurse practitioners—are the most valuable players in the system.
If I were czar and could magically transform the financing of US healthcare, I would pay the same number of “tickets” to a surgeon as to an internist. Why? Because today a patient (or insurer) pays $4,000 an hour for a twenty-minute cataract procedure, but $180 for a consultation with an infectious disease provider when they’re in intensive care with a life-threatening infection. How did we get so out of balance?
Not reimbursing fairly for work done means that some healthcare providers are abused by The System and that others are unfairly rewarded.
Say you’re my patient and you need something from me for which I can’t bill anyone—a letter to bolster your insurance claim, or a “prior authorization” request so you can get a medicine you need. I think it’s important to your health and it’s my professional, moral duty as your doctor, so I’m going to do what needs doing. Unpaid. And while I know prior authorizations do save money in any system, we need to find another way to do it properly, fairly.
Currently, The System banks on my behavior, and I mean this literally. Insurers and hospital leaders count on providers doing what’s necessary to meet patients’ needs even if they don’t get reimbursed. Every single day, The System earns interest on the dollars it is not paying for those providers’ services. It makes profits on our backs by not paying us for what we do to keep our patients whole. Our good will is the safety net that catches folks as they fall through the cracks of our diseased healthcare delivery system. And each time we do “the right thing” to serve the patient, we are bailing out The System. It’s abusive. And we not only put up with it; we enable it.
Even if healthcare providers feel shafted by those who hold power over us—in government, academia, corporate medicine, the insurance industry—most of us try to do right by our patients. To borrow a lyric from soul legend Curtis Mayfield, we just “keep on keepin’ on,” no matter what. It’s a point of professional honor, moral certainty, and probably self-respect.
I know that’s what Laura Secord does. Laura is a free-spirited child of the ’60s who attended college in Berkeley, California, when it was the hippie movement epicenter. She’s an exceptional poet who loves the color purple; her house is painted purple, and every day she wears something purple, which sets off her flowing, curly blonde hair. Laura is a very spiritual person, in touch with what she calls the “mojo” of the universe—and so she writes and performs under the name Mojo Mama.
Laura’s generosity and warmth make her a great nurse practitioner. At the 1917 Clinic, she works with me on Wednesday afternoons; she sees patients as their primary provider, then I meet with the patients after Laura checks them out to me. Laura has been a guardian angel to some of our longtime patients, like Jenny.
Remember Jenny, whom I introduced a few chapters back? That “kind man” that she met in 2000 became her husband, and for a while it looked like both her HIV and her personal life were under control. But that didn’t last. She got back into substance abuse. She lost a home to foreclosure, and she and her husband were fighting.
Jenny is a “dichotomous” patient: She’s either on or off. When she is on, she takes her medicines regularly, shows up for her appointments, smiles easily, excels at her job, and is genuinely happy. When she is off, she takes medicines when she remembers, misses appointments, is tearful, may get fired from work, and is mostly unhappy. On the personality spectrum that my psychiatrist friend Glenn Treisman described, Jenny is at the feeling-driven, live-for-today end.
When I’ve rounded with Glenn in his clinic at Johns Hopkins, I’ve heard him tell patients like Jenny, “You know, when we were born God gave us certain attributes, including our feelings. When you were born, you got a ‘double scoop’ of feelings!” Patients are delighted that Glenn “gets” this about them, so they’re willing to hear what he says next:
“Because of your ‘extra scoop,’ when you feel good, you feel extra good. But when you feel bad, you feel extra bad, and it is harder for you to tolerate feeling bad than most other folks. So here’s how it plays out: Picture yourself on a bus on a narrow road winding along on a high mountainside. Who do you want driving the bus? You or your feelings? If you are driving, you can take the curves and navigate your way down the mountainside. But if your feelings are driving the bus, they are going to drive you and the bus off the cliff.”
When Jenny is driving the bus, she is fabulous, in control, very functional. But when her feelings take over the bus, she begins drinking, becomes less responsible, and ends up going off the proverbial cliff. In summer 2010, Jenny and her husband divorced; a few months later, she was fired from her job. And that, says Jenny, “is where it all went downhill. I couldn’t afford COBRA [the short-term extension of insurance coverage that employees can buy after a job loss]. I wasn’t married so I couldn’t get on a spouse’s coverage; I was too old to be under my parents’ insurance and too ‘well-off’ to be on Medicaid. I had no income, no health insurance, and no savings. So I worked whatever temp job was offered and borrowed from parents and friends. I went to shelters for meals, I got on food stamps, I prayed … and I stayed reliant on the 1917 Clinic.”
As providers, Laura and I can tell immediately who’s driving Jenny’s bus. In bad times, Laura will get Jenny’s urgent calls. “I’m in trouble, I’ve run out of medicines.” “My boss is about to fire me because I’ve missed too much work.” “I got into a fight with my boyfriend.” Laura returns all calls promptly, including Jenny’s, often after hours. Laura doesn’t get paid extra to make the calls, or fill out paperwork to get patients the medicines they need.
Even when Jenny had insurance, gaining access to medicines she needed wasn’t easy. We could get the antiretroviral medicines as they were covered by her insurance. But several of her other medications were “nonpreferred,” which means the insurance company did not negotiate the low price with the company that made the drug we wanted; rather, their deal is with another company that makes a similar product. In some cases, the drugs are similar enough that we can simply prescribe the insurance company program’s drug. But in other cases, we determine that the nonpreferred or “nonformulary” drug is a much better choice for a given patient—and this leads to trouble.
In such cases, the 1917 Clinic has to have one of our providers help the patient apply for a prior authorization (PA) to use the nonformulary drug. This process is not only disruptive and anxiety-producing for the patient, it is costly to our clinic and our staff. To figure out that a drug is nonformulary, determine whether the formulary drug will work instead and, if not, find out where to file the PA request, actually complete the paperwork, and then track and manage the outcome is a grueling, lengthy process. It’s also totally uncompensated.
We became so frustrated with these experiences that Jim Raper took on a project of tracking the time he spent filling out PAs and analyzing the cost to the clinic. We published the findings in a paper in the journal Clinical Infectious Diseases in 2010. After examining two years’ worth of PAs, Jim determined that going through the process for a PA cost us on average about $42 per prescription in terms of his time filling out the forms—and that’s without considering the dollar value of the time if he had been able to spend it doing other things, like seeing more patients.
Our journal paper concluded, “Although evidence supports that PA reduces third-party expenditures, it significantly delays medication accessibility for patients and imposes high costs that negatively impact operating margins for health care providers.” In short: PAs save insurers money—success for them!—but cost the clinics time and money and slow our patients’ access to essential meds, unquestionably a failure for our patients.
Early in 2012, Jenny emailed me this:
I’m just a simple girl with no unrealistic dreams. I just want to work hard, be healthy, be able to keep my townhome and my used 2007 Ford Edge and live a long time with my four-year-old cat named Charley, who is the love of my life. I hope 2012 is better, but for now, I’m scared, even terrified, of losing everything I have (up to and including my life). I turned 41 last December, and I just hope that since half my life is over that before I leave this world, I wake up just one day—just one—and can say, “Today, I’m happy.”
A year later, in early 2013, Jenny sent an email recapping another tough year. The law firm would not put her on full-time status with benefits, and she could not afford the $500 a month that private insurance cost. She was “in the wrong crowd” again, with drugs and drink. She was in debt to the IRS, had filed for bankruptcy, and her bid to refinance her townhome was denied on Christmas Eve. “I prayed for a fresh start” Jenny wrote—and on Christmas Day, she got a phone call: “A friend of mine who recently moved to Pennsylvania to work called me and asked if I wanted to start over and move in with her.
“I packed, drove 18 hours straight with a U-Haul, and arrived at her house at 10:00 p.m. on New Year’s Eve. It was the bravest thing I ever did voluntarily … I will miss you all dearly and hope that one day I will see you again, but I know it will probably be a long time. I will keep you updated with my status because I feel like we are all family. Sorry to have not had time to say good-bye in person …”
Jenny has enrolled at her local AIDS clinic and is seeing a new ID doctor there. We have forwarded her 1917 Clinic records. Her new doctor has written letters to help her qualify for aid and disability there, her email said: “Also, if any of you could write letters for me about my issues over the year, I may need them …”
Nobody compensates Laura or me—or Jenny’s new providers—for the time we spend on letters, calls, and emails, trying to keep patients from going off the cliff. Sometimes their problems are their own demons. Sometimes the problems are caused by forces beyond their control, or even by the devilish complexities of The System that’s ostensibly there to help them.
I’ve hung on to these emails as a reminder of the importance of listening to patients like Jenny. The controlling institutions in US healthcare today have concluded that it’s not important—at least not important enough to be compensated. We do it anyway because these people matter and, if we can, we’re going to improve their odds of success. Just that simple.
In Monty Python’s Spamalot, one of my favorite Broadway musicals, there’s a song called “All for One.” The last two lines, Slightly less for people we don’t like/And a little bit more for me, too often summarize how the American people think about each other. It’s really a sad commentary. For a while after the videotaped police beating of Rodney King sparked the 1991 Los Angeles riots, people earnestly quoted King’s plaintive line, “People, I just want to say, can we all get along?” But lately I’ve heard it quoted cynically, as a punch line in situations where people have no intention of trying to compromise or seek consensus.
It’s a question worth asking another way: Why can’t we get along? What is it that’s keeping us from seeking the common good on something as integral to life as achieving and sustaining good health? Why are we getting in each other’s way so much? I see the energy expended by people working their asses off trying to do the right thing for other people—the healthcare workers who are just jury-rigging or patching together solutions so people don’t fall through the cracks of a fractured system. But they’re all working independently; nobody is pulling it all together.
We need to rally around a common vision and work together for the betterment of healthcare. We need to behave as if we’re in an honest-to-god medical neighborhood, where we all can feel comfortable, where we nurture each other. I don’t have the magical formula to make that come to pass—but I know that demonizing those who don’t think like me, or dismissing others’ opinions out of hand, won’t get us anywhere.
We have the tools available to cure many ailments and manage many that we can’t yet cure—but we can’t use the tools because The System has cut off our hands. As currently structured, it expects the healthcare providers to be shock absorbers who provide whatever’s needed, whether compensated or not. The System expects providers to do this until we’re stretched to our limits and beyond, to the point of burnout.
Before, in the darkest days of the AIDS epidemic, the burnout among my colleagues came from watching so many people die. Now the burnout is because we’re watching The System consciously, intentionally fail—abdicating responsibility and trusting that providers will make up for The System’s failures. By acting as an indentured servant to the health insurance companies, I am keeping them profitable—and, therefore, motivated to keep The System (not) working as it is.
Worse, I know I’m actually better off than a lot of the really overburdened, heroic providers toiling in America today. As so often happens in my life, I got lucky. I came into the field before things got this desperate. I have contacts. I have contracts. I have some professional standing earned by years and years in these trenches. So I’m protected—or can protect myself, and maybe my team—from some of the worst effects of belt-tightening or imposition of irrational rules.
Other healthcare professionals almost certainly share my insights, frustration, and rage. But many don’t have the same job security, so they can’t freely express what they are facing and feeling. Some of the most valiant providers I know—who put sweat, tears, time, and their own cash into keeping patients alive—can’t afford to be seen criticizing The System, the insurance industry, the government, or other entities with control over their livelihoods. I can.
The crazy currents of life can carry a person from digging postholes in Kentucky to making movies in Paris. Perhaps it’s timing that determines fate, as when a new doctor works his first shift hours after a deadly “mystery disease” is first reported. A common enemy can turn strangers into allies, as research teams worldwide log countless lab hours, cheering each breakthrough and cursing each setback. In the history of AIDS, the tide began to turn as one researcher’s eureka moment built on that of another. Finally, we had it in our hands to halt the virus’s advance and salvage so many lives.
Riding the whirlwind of an epidemic left little time to be what I also was: a husband, a father, a son. While I was conducting research and tending to patients, who was tending the home fires? Amy Weil Saag. Day after day, she was the tireless, primary parent while I, working or traveling, was secondary. I owe her for this, big time. I also owe her for believing—and for assuring our children—that while I love my work a lot, I love my family more.
I’ve made many movies featuring Amy, Andy, Harry, and Julie, some of which they’ve allowed me to show in public. I could easily write an entire book about each of them, but for various reasons—from being shy to being overscheduled—I doubt any of them would sit still for it. I asked to interview each of them for this book, and promised them final say-so over passages that concerned them.
When Amy became pregnant in 1982, we each felt the typical parent-tobe mixture of elation and panic. Things seemed fine until the sixth month when, while we were on a vacation cruise, we lost the pregnancy. Amy was heartsick, guilt-ridden (without reason), and left wondering if we would ever have children. Though I tried to summon some professional detachment, I was hurting, for Amy and myself.
That would be our only pregnancy that didn’t end in joy. In 1983, Andrew Weil Saag was born, a “buster” from the day he was born, yet kind, sensitive, and always insightful beyond his years. Three years later, we gave him a brother, Harry Switow Saag, named after Papaharry, a name he has more than justified in spirit and smarts. And five years after that—fulfilling both Amy’s and my hope to have a daughter as well as sons—came Julie Diane Saag, the fair princess with a mountain’s worth of common sense and heart.
Now that the kids are grown, I see the impact Amy has had. They all share a trait bred into generations of Weils and Saags: a desire to give back to the community. In Judaism, it’s called tikkun olam, “repairing the world.” Beyond that, each of the kids is quite different from the others, even in terms of the second trait we consider a family birthright: a highly active sense of humor.
Andy says one of his earliest memories, from when he was about two, was of roughhousing with me, as we often did. I was holding him by the arms, swinging him boisterously through my legs and into the air. It was great fun until his right shoulder dislocated, and we had to take him to the emergency room to get it manipulated (painfully) back into the socket. Today, Andy charitably says that episode “kind of epitomizes life in our family: a combination of fun times and goofiness juxtaposed with seriousness when necessary.” For my part, I’ll always remember feeling stricken that I had hurt him, and a little embarrassed to face the ER staff as a Doctor Dad who didn’t know better than to play that boisterously and didn’t know how to fix the problem once it materialized.
Andy was a football star in high school, a pursuit I memorialized during his senior year in Under the Helmet, a “week in the life” movie of his team as it prepared and played a rival squad. Andy started college as a premed major “for no good reason other than the fact that my dad was a doctor,” he says now. A few brutal organic chemistry classes changed his mind; he ended up majoring in psychology, and later earned both a law and an MBA degree. He’s a real estate and consumer finance attorney at a fine Birmingham law firm. His wife, Brittany Benamy Saag, is a part-time internet marketing executive and a part-time nanny. She married Andy in 2010 despite his eccentric family; we love and thank her for that.
Julie and Harry say Andy is “the leader” of the three kids. They also say Andy is the “parents’ favorite.” Like most parents, Amy and I don’t feel we have favorites. Andy has not been deposed on this question.
Harry is the middle child, a position that’s shaped his perspective on the rest of the family. “I often felt like I got the short end of the stick,” he says, and responded by “being too hard on my sister and nagging my brother too much. I was the overachiever, always trying to best myself, and probably more stubborn than either my brother or sister. The stubborn overachiever who didn’t know when to shut his mouth.”
Harry does have strong opinions and is not afraid to voice them. I wouldn’t quarrel with most of his appraisals; I second what he says about his mom, and am grateful for what he says about me. In Harry’s view, “My mom is a rock. She has been the one holding down the fort, putting up with my dad’s extremely busy schedule, and understanding that he had to be that busy because of the work he was doing. I think my mom’s cooperation and understanding has allowed my dad to be as successful as he has been. As for my dad, all three of us have said that he’s a good father but a great friend, with the right level of hands-off approach to let us be our own people.”
I recapped Harry’s high school football career in a movie titled Under the Helmet, Redux (because nobody else appreciated the title I wanted to use, Under the Jockstrap). Harry explored lots of career options, with summer jobs at a law firm and on Capitol Hill as well as at the 1917 Clinic. Then, as he puts it, “I decided to hedge my bets and go into premed. I think part of my choice was seeing how much my dad enjoyed his job, seeing the energy there.” Harry became a first-year House Officer (resident) at New York University after completing his medical degree at UAB. He’s interested in many areas of medicine, but he likely will find some way to merge his interests in patient care with his strong affinity for healthcare financing and policy work.
I traveled so much when the kids were young that, to explain it at their level, Amy would sometimes point to airplanes flying overhead and tell them I might be on board. One day when Julie was a toddler and the two were outdoors, Julie spotted a plane, waved her tiny hand at it and said, “Hi, Daddy!” As Amy recalls it now, “On the one hand it was funny, but it also was telling.”
Despite all my absences, I had no trouble staying close to my sons because we enjoyed a lot of the same sports and activities. But I didn’t relate as easily to Julie. Despite having two older sisters, I was pretty clueless about Girl Things. Both Julie and the boys tell me that she figured this out early, and decided that to find common ground with me, she had only one recourse. Since I couldn’t get to her, she got to me. And she still does.
“I know songs from all the big Broadway musicals, I can recite parts of many Broadway plays, and I basically memorized all the Austin Powers movies,” Julie says now. “That was my way to get my dad’s attention and for him to connect with me, through his love of music, theater, and movies. There’s this long, elaborate song from Ragtime, I’ve been able to do the whole thing by heart since I was about eight years old—and he laughs every time.”
When Julie says, “I guess I can ‘thank’ my dad for my sense of humor,” you can hear the quotation marks around the word thank as if she toyed with saying blame. “Where my brothers are more sarcastic and clever, I have more of the goofiness my dad has and the silliness,” she says. “Though I don’t have that to the extreme my dad has, because he can be too much.”
In my defense, I say “too much” is a matter of perspective. Julie says she can give plenty of examples—like when I was escorting her onto the Mountain Brook High School football field to be crowned homecoming queen.
“All the other dads escorting the homecoming court were in nice suits, looking like they were going to a wedding,” she recalls. “My dad walked me onto the field and he had on a sport coat and he was wearing a fricking baseball cap—and he tosses it in the air in front of everybody in the stands, to get people to laugh.
“But then, at my bat mitzvah, I was expecting him to give a goofy speech—he was quoting the Disney movie Aladdin, saying ‘Beeee yourself ’ where the genie turns into a bee—and he started to cry in front of the entire congregation. I was just dumbfounded.”
When Julie was considering career paths, she says she looked for “something exciting like my dad did every day, and something meaningful like my mom did as a teacher.” Today Julie is a special-needs teacher at a suburban Atlanta school, working with students who have physical and developmental disabilities. “We do the silliest, goofiest things—I never go a day without laughing,” she says. “Where some people might think it’s intimidating or difficult to work with special-needs kids, I see it as a positive; they really make the job fun.”
If unbridled optimism were an inherited trait, I’d like to claim Julie got it from me. I do know that we reinforce that spirit in each other. “My dad would rather be happy than sad,” Julie says. I’d say the same about her. She’s the one I’ve put in charge of getting the inscription I want carved on my gravestone—a lyric, of course, from the musical Spring Awakening: “I Don’t Do Sadness.”
Behind all of this is the unspoken reason I wasn’t broken during the worst passages of my career. It isn’t optimism. It’s that, at the end of every day, there was Amy and our family.
I joke that if I awoke to find my home on fire and I had only moments to escape, I’d wake my wife … so she could help carry out the films I’ve made. Amy is such a good sport that she wasn’t offended the first time I told this joke (or the scores of times since). But she also knows the truth behind my foolishness. Amy is my better half in every sense of that phrase. Calmer, kinder, steadier than I am; more resourceful, more patient, more unselfish. She is cheering section, sounding board, and wailing wall; tonic, refuge, and anchor. And she’s smart.
Amy is a phenomenal mother who calls raising our children “the best job I’ve ever had and ever will have.” She is an accomplished community leader who has headed almost every Jewish organization in Birmingham, and who volunteers out of gratitude for all she has received in life. I could pretend Amy has been too busy and fulfilled in this work to notice my many absences all these years, but that’s not true. It’s more that she has made a considered choice about what she calls “Michael’s journey” in HIV/AIDS medicine.
“I’ve never questioned if Michael is the right person for me, or questioned us as a couple,” Amy says. “It’s more like, can I handle what I call ‘married single life’? You look around and see other people doing just typical things with their husbands, taking walks, going to movies, going out to dinner. And with Michael, we do those things but they’re rarities, they’re planned activities that we have to work at doing. We have friends who joke that the secret to our thirty-six years of marriage is that we’ve only been around each other for twenty of them, because of how much Michael is away.
“I realized once Michael started this journey that he was basically devoted to it. Not to the exclusion of a family—he wanted it all, he wanted to have the family while still fulfilling what he felt was his purpose on this earth. So I had to make a decision early on as to how I was going to handle it. I could slip into that mentality of, ‘Woe is me, I don’t have my life partner doing things with me,’ and let that tear the family apart. Or I could be the cheerleader and be supportive. I had to reach a place with myself where I said, ‘This maybe isn’t the way I envisioned my married life, but this is the way it’s going to be because he has to fulfill this purpose.’”
How can I account for Amy, what she’s given to our children, to me, to my patients and my research and my dreams? Maybe magic. Maybe grace.