If we are lucky, at least once in life we experience what Plato called “clear light”—a moment in which something powerful occurs, we see it whole in all its dimensions and meaning, and we understand it completely. I’ve always thought that I lived by luck or magic as much as by skill and effort. But while I was a medical student looking at all the optional career paths, I felt stuck. No single road seemed to lead to everything I thought I needed to be both useful and challenged. I found much that I loved in ID, in the lab and the hospital; I didn’t want to give up research or the practice of medicine. But neither did I really see a career path forward. Then in January 1987, in a dusty conference room unlikely to host any great dreams, I experienced clear light. I knew my place in the medical world. It was not a delusion, and it’s unfolded precisely as I saw it: my profession, my practice, my place.
The challenge of the moment, in 1987, was the realization that I wasn’t going to “find” what I had just experienced. My place was clear, but did not yet exist. I’d have to build it myself.
I entered medical school fully intending to be the surgeon who’d fulfill my mother’s ambition for me. Over the next nine years, I changed my mind about surgery; chose cardiology and then discarded it; fell into ID more than chose it, and set course for a comfortable life of ID private practice that never happened.
One of my favorite teachers in medical school was Dr. Julio Melo, a Colombian-born ID specialist who for years was hailed as one of Louisville’s top physicians in his field. Julio wasn’t just a good doctor; he was a good person. At the start of my second year of ID fellowship, I received a call from Julio asking me if I wanted to join him in his practice. No financial buy in; just start working with him as an equal partner. The thought of going home to Louisville, working with one of my favorite physicians, practicing ID in collaboration with many physicians I had known when I was growing up, was hugely attractive. Julio and I agreed I could start in summer 1987. It was my dream come true.
But at the same time I was accepting Julio’s kindness in Louisville, my life was heading everywhere except Louisville. Making two discoveries in the UAB lab with George Shaw and publishing them in NEJM and Nature. Presenting findings at the International AIDS Conference (and making my movie) in Paris. Thriving under the mentorship of Bill Dismukes, who wanted me to be assistant chief of the medical service at the Veterans Administration hospital and help run the UAB house staff training program—a truly tempting prospect, since I loved teaching. I was torn between the opportunities. On Labor Day weekend 1986, I went to Louisville to visit with Julio.
I’m glad I’m writing, because when I try to tell this story face-to-face, I usually choke up.
I planned to meet Julio after Sunday morning rounds at one of the three hospitals his one-man practice served. A few minutes after nine, Julio half-staggered into the doctor’s lounge, looking as tired and overworked as he was. This guy needs a partner, I thought. Feeling guilty even to raise it, I told him my dilemma. I wanted to be his partner in Louisville, but I felt drawn to the lab and patients at UAB. Without hesitation, Julio said, “Mike, there’s nothing better than academic medicine. You owe it to yourself to give it a shot.”
What my mother now says she actually ordained at my birth was not merely that I would be a doctor but that I’d be a “doctor’s doctor,” someone whose opinion other physicians would seek on their most difficult cases. Infectious diseases was a perfect specialty for this, as ID cases are often the most difficult to sort out. Working with Julio, one of the most respected physicians in town, would seal the deal. I would become a pillar in the Louisville medical community and the favored son of the Louisville Jewish community. Didn’t I owe it to my mother to grant her the dream of “my son the doctor” coming home?
You owe it to yourself to give it a shot.
In his unflinching and unselfish response, Julio liberated me to be whatever I wanted to be, my mother’s dreams notwithstanding. Had Julio been caring even a little for himself, he’d have talked me out of it. I’d have listened to his trusted counsel. But he didn’t. On the contrary, he started me thinking full-bore about staying in Birmingham and in academia, a life vision I’d never really imagined.
I knew that I could stay in the lab doing research with George and Beatrice—a comfortable situation, like a water-skier traveling in the boat’s wake. But I’d increasingly realized that I would miss the patients. I loved the interaction with those who came for healing; I loved them not just as “cases” but as confidantes, teachers, friends, partners. The lab was a place to seek knowledge, but the interaction with patients was where the knowledge mattered most. But I’d never imagined a way to stay in the lab and be deeply engaged with patients.
The same time I was being redirected by Julio, an abstract I’d worked on with George was accepted for presentation at a December 1986 hematologists’ meeting in San Francisco, six months past Paris. Hematology didn’t much interest me, but a few days in San Francisco did. San Francisco General Hospital (SFGH) had perhaps the most respected AIDS outpatient clinic anywhere, Ward 86. In 1983, when their team had opened the nation’s first dedicated AIDS inpatient ward, within days it was fully occupied. They were working at the epicenter of the disaster. In a fearful, stricken city, SFGH stood like a lighthouse in a hurricane.
After giving my talk, I spent a day at the hospital with doctors such as the late and still grieved Merle Sande and the brilliant and very much alive Paul Volberding. They’d led the shock troops trying to counter the virus that had attacked the city so ruthlessly. In my mind, I still see their clinic’s “war room” where patients were tracked on a huge whiteboard filled with names. In the upper right-hand corner of the board, someone had drawn a beatific, beaming sun. Carefully lettered under it was a list—often a long list—of the patients who had died that week. It reminded me of TV news scenes when I was growing up in the 1960s, with Walter Cronkite reporting the weekly death numbers from Vietnam.
I was at SFGH for one day. I visited with as many staff members as I could find, including Donald Abrams, Connie Wofsy, Phil Hopewell, John Stan-sell, Michael Clement, John Mills, Mark Jacobson, Julie Gerberding, Allison Moed, and Grace Lusby, stealing precious moments from their intense care for patients. Over and over I asked them the same question—“If you were starting over from scratch, how would you design an AIDS clinic?”—and I took pages and pages of notes. The knowledge was precious. The experience of those people was unforgettable.
I flew back to Birmingham with a notebook full of suggestions, a new model for clinical care and caregivers, and no clear plan of action. The notes wound up in a pile on my desk as patient files began to accumulate. As if overnight, we were facing our own AIDS onslaught. From New York, San Francisco, Atlanta, and elsewhere, people with AIDS-related illnesses were returning home to die in places like Montgomery, Selma, Huntsville, and Dothan (population 125,000), all places that looked to Birmingham for AIDS relief. Local doctors, unprepared to manage patients’ grim, end-state conditions, offered what words of comfort they could and sent their patients to our ER. If they arrived alive, we’d admit them to our hospital and, ideally, offer stabilization and perhaps improvement. But once they were able to be discharged, what could we do? Send them back home? Within days they’d have new symptoms no happier than those they’d suffered earlier, and they’d be heading back to Birmingham. We were running a boomerang business in an epidemic where everyone was dying.
UAB had no outpatient facility, no home healthcare resources, no way to take care of these folks. What we had were some indescribably committed team members who made up for lack of resources with an abundance of courage, intelligence, commitment, and faith. What I’d seen in SFGH I now saw all around me. Overworked and underpaid colleagues cobbled together solutions. Some HIV patients needed blood transfusions and IV medication infusions that took hours to administer; we had nowhere for them to sit or lie while being infused. Jim Raper, head nurse of the emergency department and trauma center, opened clinical space in the University emergency department every night when it was less busy so that we could treat these people. No available staff to work odd hours, weekends, holidays? No problem. Jim Raper came in himself to administer the treatments. As we sat together between charts and coffee one hushed overnight shift, while patients slept as their treatments progressed, Jim told me his remarkable life story.
Raised in northeastern Ohio with five brothers and sisters, Jim spent most summers working on a North Carolina farm for his grandfather, who had fathered twenty children. “Grandpa Raper dedicated his life to running his farm, raising his family, and bringing them through the Depression,” Jim told me with obvious pride. “He knew what hard work was all about, but he made work fun.” Even as a youngster, Jim loved the feeling of being part of a group effort and making things run smoothly. Long before he’d graduated high school he was as dependable as any adult, rising before dawn to milk cows, doing chores, and going to bed in the dark once the livestock were fed. But as a gay youth who sensed the need to one day live openly, “I knew I wasn’t going to end up living on a farm and having a family,” Jim said.
Although Jim dreamed of becoming a physician, his family couldn’t spare money for college, let alone medical school. A high school teacher Jim knew suggested he get a nursing degree while working to pay for it. So for four years, Jim spent his days studying nursing at Ohio’s Kent State University while working forty hours a week on overnight shifts as a hospital emergency room orderly.
With his nursing degree in hand, Jim joined the US Army Nurse Corps, hoping to see the world. He got as far as Huntsville, Alabama, and a posting at the Redstone Arsenal. During three years of active duty, he worked as head nurse of the base hospital’s emergency room while earning a master’s degree in nursing at the University of Alabama at Huntsville. Near the end of his assignment, Jim met Steve, a music teacher and high school band director who was tall, athletic, handsome, and nine years Jim’s senior. After a few months of courting, the two were a couple. In spring 1983, Jim moved to be with Steve in Birmingham, and he applied for work at UAB.
To call Jim’s first UAB job a trial by fire is probably an understatement. As assisting head nurse for the cardiovascular operating room, Jim worked for Dr. John W. Kirklin, an honest-to-God medical giant. At the Mayo Clinic in the ’50s and later as surgery department chairman at UAB, Kirklin revolutionized cardiovascular surgery. He developed and refined the heart-lung machine and used it in the world’s first series of open-heart operations.
Kirklin was as exacting as he was brilliant. Some found him hard, perhaps impossible, to satisfy. I know excellent team members who couldn’t survive more than a month working with Kirklin. Jim Raper worked with him for three years. Asked about what it was like, Jim says simply that Kirklin was “intense.” When UAB needed a new head nurse for its emergency department and trauma center, Kirklin suggested Jim. By promoting Jim for that post, Kirklin brought into my circle a gift I desperately needed and still value beyond words. Jim Raper pursued treatment and resources for our HIV patients anywhere and in any way he could, and he was soon a key partner for all my patient work.
We knew all-night workarounds in the ER and other “solutions” carved out of desperation wouldn’t be sufficient for long. The need was growing, the hospital was searching for a sustainable way to treat people with AIDS, and I remembered the notes from San Francisco buried somewhere on my desk.
On a Thursday afternoon in February 1987, I settled into room 229, a book-lined conference room that doubled as the ID library at the Tinsley Harrison Research Tower, named for the Alabamian who was a twentieth-century pioneer in internal medicine. I remember the silence and the dusty-library smell. I remember taking out my SFGH notes, a yellow legal pad, and a blue ink pen. I started writing and instantly felt as if I needed not to guide the pen, but just to stay out of the way of whatever force was forming the words.
Three hours later—though it seemed, at the time, like fifteen minutes—I had completed a detailed proposal for a UAB AIDS clinic.
Its first few pages made my case. UAB already was doing top-notch infectious disease research, as good as anywhere in the world. We already were seeing patients in great need and, given what we knew and could project about the epidemic, this was just the beginning. Nowhere else in Alabama could you find the capacity or the will to handle what was coming, I wrote. Without brandishing the words “moral imperative,” I made it clear that I believed this was a state university’s duty. UAB couldn’t run away from AIDS. We needed to get out in front, quickly, so we would be ready when it arrived in full force.
Then I described a clinic that could do this, incorporating the best practices I’d seen at SFGH. It would be built around a five-fold mission: patient care, social services support, medical provider education, community outreach, and research. Though all five were needed, what would be critical—and new—would be combining two of them, the patient care and the research. Since this is such a new disease, I argued, every patient could be followed carefully, as if “on study.” In the past I’d seen how research impacted patients; here I argued that every patient was research. Best of all, it wasn’t mere rhetoric. It was necessary, and it was true.
Treating every patient as a research subject would mean entering the data on each patient into a database and following them over time. Since drugs to treat HIV effectively were scarce, we would enroll as many patients as possible into clinical trials of new medications, cutting-edge therapies to which they never would have access otherwise. With this approach, we’d be giving them state-of-the-art treatment, advancing our knowledge as we studied the outcomes—and, not incidentally, paying our bills with money the drug companies would give us to run the trials.
(Pharmaceutical financing was critical to our model, as most of our patients would have neither money nor insurance to cover their care. So long as there were sufficient research dollars to funnel into patient care, we would be financially sustainable. For years, research dollars hid the real cost of treatment and allowed us to avoid the hard realities that insurers were unreliable, public funds were limited, and patients who are agonizingly sick and sliding toward death are, among other things, not inexpensive. We didn’t worry about America’s healthcare system because research money made us an exception to most of the rules.)
Under the proposal, UAB’s clinic would open with two assets the SFGH staff said they wished they had: a database to capture every scrap of information on every patient, and a specimen repository to preserve blood samples. We knew many of our patients would die before we fully understood the disease killing them. But with the contents of the database and repository—in a sense, their bequest to the AIDS fight—we could conduct research and quickly apply what we learned to other patients’ treatment.
I gave the yellow pad to a colleague who typed the proposal (and corrected my spelling, which is lousy to this day). Then I sent it off to the chair of medicine, J. Claude Bennett, with a request for an appointment to discuss it.
An affable man with a gray goatee and a penetrating gaze, Claude was a brilliant scientist: His name was attached to research breakthroughs on genetic coding for protein structure, gene splicing, and monoclonal antibodies. Claude had known me from the time I’d been his chief resident, when he’d encouraged my interest in research, but I suspect he still considered my overture pretty brazen.
I walked into his office prepared for battle and began my pitch. I hadn’t gone three minutes when Claude motioned for me to stop. “We need to do this,” he said in his calm, matter-of-fact way, and he proceeded to explain how the university planned to bring me on faculty and provide clinic space and start-up staff. His parting words to me were “Just try not to run in the red.”
And there it was, like magic. A state-sponsored university in Birmingham, Alabama—this city not long removed from turning dogs on protesters—would create a clinic for the AIDS patients just launching their own civil rights crusade. A second-year ID fellow had asked the big boss for an AIDS clinic and received a yes in three minutes. Within months, we were underway. How could I not believe in magical thinking?
The hospital operated its internal medicine residents’ clinic in a free-standing building located at 1917 Fifth Avenue South. Nestled under the looping exit ramp of a parking garage, it still makes me think of Alvy Singer, Woody Allen’s character in the movie Annie Hall, whose house sits beneath a roller coaster track at Coney Island. The schedule for internal medicine residents left the facility open Thursday and Friday afternoons. To start, UAB administrators said we could have the space for those two half days plus the services of nurses already on the clinic staff. Given the stigma surrounding the disease, I didn’t want people to call it “The AIDS Clinic” because I feared terrorizing neighbors and making patients reluctant to come in. I named it for the street address: the 1917 Clinic. (When asked about the name over the years, I’ve been known to say we were commemorating the launch of the Bolshevik Revolution; occasionally, I’ve been believed.)
Colleagues already working in HIV/AIDS clinics had warned me, “There’s no good way to say, ‘You’re positive’”—no way to give a patient that AIDS test result without it sounding like a death sentence. I understood how they felt, standing there as supposed healers yet having to admit: We cannot heal you of this. But I had one advantage most full-time clinicians didn’t: I was also continuing to work in the lab, where a game-changing discovery might be unimagined one minute and under the microscope the next. I spent one hour with despairing patients but the next on promising science. For me, the lab offset the despair of patients while the patients instilled passion in the lab. I settled on my own way to tell patients their tests results: “You’re HIV-positive—and there are a lot of things we can do.”
On January 28, 1988, a quiet, chilly Thursday afternoon, we saw our first eight patients at the 1917 Clinic. Word spread, we picked up steam, and some 100 patients entered treatment in our first nine months. Nearly all who came stayed for as long as we could keep them alive. We loaded all their information into our new database on a bare-bones computer that I kept at home. We preserved their blood samples in our repository, using a confidential numeric coding system to link patients to specimens, a system that I have kept to this day.
The AIDS care that physicians Sande, Volberding, and their colleagues pioneered at SFGH took a “holistic approach” and acted as a “medical home” before either of those terms became healthcare clichés. To recreate that atmosphere at the 1917 Clinic, we borrowed liberally from their approach. Staffers were trained to be respectful and knowledgeable about the gay community from which so many patients came. Gay and straight community volunteers served as “clinic hosts,” making patients and their loved ones feel welcome, guiding them to resources, and offering a shoulder to cry on or a hug to bring comfort. Some days, our waiting room felt like a group therapy session.
The first few weeks were bumpy. Waiting times were long because so many patients were sick and had complex medical histories. Social services were critical for nearly every patient, particularly those needing to learn how to access medications. Home-based IV medicines were almost indescribably complicated to administer and therefore difficult to get right. And coordination between the providers taking care of patients in the hospital with those of us providing care in the clinic was particularly challenging.
I remember the day an ambulance pulled up to the clinic’s only public entrance. Its attendants unloaded a patient who was more dead than alive and proceeded to roll his stretcher through the middle of our packed waiting room. Relatives who’d brought in other patients nearly gagged. The place fell so silent that you could almost hear the other patients thinking, “That’s going to be me soon …”
We changed protocols after this fiasco so that ambulances could only bring patients through a back door off an alley. But it was a cosmetic fix, because in those early days every patient, and every person who held the patient’s hand as he or she checked in, soon knew that a diagnosis with AIDS was tantamount to a death sentence.
I remember thinking, when I was a fifth grader, that all the great issues facing America—especially race relations—would be settled by the time I was grown. Not so, it turned out. My great issue would be HIV/AIDS, a scientific enigma and medical impossibility wrapped in cultural judgments and social stigma. My goal would be to make a university research-and-treatment center number one in tackling it—something the state would be proud of, like it was proud of ’Bama or Auburn being number one in football.
I didn’t care whether others thought I was delusional or given to magical thinking. I didn’t care, because I had held test tubes holding the secrets that could bring life, and I’d held too many hands of dying patients. In the 1917 Clinic, I had found not just a career but a cause. This mattered.