Last week marked the 30th anniversary of the first reports of a cluster of cases of pneumocystis pneumonia in gay men in Los Angeles. While I’ve recently heard a number of reflections on these early years, I’ll focus on a topic that I haven’t seen covered: how AIDS transformed training – including my own – and what the emergence of AIDS taught me about innovation and, yes, opportunism.
In early 1982, I was a 3rd year student at Penn on my first medicine ward rotation. One night, my team admitted a young gay man with a bizarre story: progressive wasting, spiking fevers, profound dyspnea, and diffuse infiltrates on his chest x-ray. The next morning, I presented the case to my attending, David Goldmann. Having just read reports of a similar illness galloping through urban gay communities, at the end of my presentation David said gravely, “This thing” – the disease didn’t yet have a name – “is changing the way we practice medicine.”
When I arrived at UCSF in 1983 to begin my internal medicine residency, it didn’t cross my mind that this decision would guarantee that my training would be dominated by this new scourge. In 1985, as a third year resident, I jotted down some of my reflections in an essay. It began:
Like many of today’s interns and residents training in San Francisco, New York, and Los Angeles, I have cared for many more patients with Pneumocystis carinii pneumonia than pneumococcal pneumonia, more patients with Kaposi’s sarcoma than breast cancer, and more patients with cryptocococcal meninigitis than meningococcal meningitis… This realization has prompted me to consider the impact of AIDS on medical residency training.
I sent this paper, entitled “The Impact of AIDS on Medical Residency Training,” off to the New England Journal of Medicine. Of course, this was a naïve and hubristic thing for a resident to do, but I really didn’t know any better. A few weeks later, while on the wards at the VA, I received a page for an outside call. “Hi, this is Dr. Marcia Angell,” said the voice on the other end. “I’m an editor at the New England Journal. We really liked your article but we’ll need a few changes before we publish it.”
My initial feeling of elation was rapidly eclipsed by one of doom. Oh God, I thought, they want a national survey, or a double blind study, or something similarly impossible for a resident whose daily ambitions centered mostly on answering pages and catching a few winks. “OK, send it to me and I’ll do what I can,” I said, my voice filled with resignation. “No, that won’t be necessary, we can handle the changes over the phone.” And then she asked me to approve some completely benign editorial tweaks. “OK, we’re good to go,” she said cheerily, and hung up. The article came out in theJournal a few months later.
(Parenthetically, that experience left me with the delusional belief that the life of a faculty researcher involved simply sending articles to the New England Journal and the like, fixing the syntax, and reveling in the glory. I’ve never had anything close to that experience since, and I’m quite certain that I never will.)
Thinking back to those early days of AIDS, the memories remain vivid, albeit undoubtedly selective. My colleagues and I knew we were working in an era that would go down in the history books. But having experienced other short-lived infectious brush fires, like Legionnaire’s Disease (whose epicenter was a couple of miles from my college dorm in Philadelphia), most of us believed that this new disease would similarly extract its terrible toll and then move on, like a tornado. None of us in training then could have imagined that the disease would still be with us three decades later.
What are my dominant memories of those early days? I remember that my colleagues and I were scared out of our wits that we would catch the disease – particularly in those first crazy days when we had no idea how it was spread. I remember the panicked faces of my fellow residents when one after another was stuck with needles from AIDS patients and each became convinced that he or she would soon die. A particularly scary moment came in 1983, when one of our favorite pulmonary attendings was stuck with a needle from a patient who had both AIDS and active hepatitis B – and he soon turned yellow from active hepatitis. The fact that he remained HIV negative (the test came out in 1985, the year his story was published in the NEJM) was one of the first reassuring indications that HIV was not nearly as transmissible as we had feared.
Of course, I also remember the anguish and futility we felt as we moved dozens of young men – virtually all in their 20s and 30s – to the intensive care unit for a few dismal days or weeks that served as high tech prelude to a near-certain death. As a relatively sheltered heterosexual suburbanite, I was able to distance myself from the first cohort of patients, many of whom were promiscuous, flamboyant gay men who frequented the bathhouses of the Castro district nightly, engaging in sexual encounters whose descriptions and frequency made me blush.
Soon that first cohort died off, and the patients became harder to see as “Other” – they were young men in the primes of their lives, who worked in accounting or advertising, and who lived down the street. I recall being extraordinarily impressed by the stoicism and grace of so many of the patients. Ultimately, my efforts at denial and distancing became ineffective. In my NEJM article, I wrote this:
Interns and residents in internal medicine learn quickly to deal with terminally ill patients. Elaborate defenses are constructed to soften the inevitable blow. It is often not difficult for a resident to accept the death of an elderly patient with widely metastatic cancer as a welcome reprieve from suffering. In other cases, intellectualization, peer support, and even gallows humor are used. Dealing with AIDS patients stretches these defenses to their limits. Not in recent memory have so many relatively young, previously healthy people died so quickly, with caregivers seemingly powerless to influence the eventual outcome.
While I clearly recall the emotions of overwhelming sadness and palpable fear, I also remember the excitement and the sense of opportunity. While I say this with a measure of shame – how could one’s emotions in the face of hundreds of deaths of young people be anything but horror? – I’m convinced that this is a normal reaction when a young person finds him or herself in an extraordinary time and place, even one defined by unspeakable tragedy. Many of my contemporaries responded to this opportunity in amazing ways.
The late Merle Sande had just arrived at San Francisco General Hospital a few years earlier to run the medical service. A nationally known infectious disease expert and a man of boundless energy and charisma, Sande saw in AIDS a once-in-a-lifetime chance to build a new care model, and he did: bringing together teams of doctors, nurses, counselors, and patient advocates to create the world’s first inpatient and outpatient AIDS units. (In many ways, these multidisciplinary units became models for palliative care services andgeriatric ACE units.) A young oncology fellow, Paul Volberding, decided to devote himself to the disease after seeing dozens of patients with KS. Paul became the first director – just after finishing his fellowship – of these AIDS units, and would soon become the nation’s preeminent clinical AIDS expert.
One of my co-residents, a gay physician named Mitch Katz, watched as this new epidemic ravaged his own community. He became politically active and chose to devote himself to improving public health. Last month, he became health commissioner of Los Angeles, after a successful decade-long tenure in the same position in San Francisco.
Another resident, a couple of years my senior, saw the panicked faces of her colleagues after they were stuck with needles from AIDS patients and began to study the risks of such sticks, develop prevention strategies, and organize the nation’s first needlestick program, all as a resident and chief resident. And that’s how Julie Gerberding, who ran the CDC from 2002-2009, got her start.
One of my other residents saw cases of Kaposi’s sarcoma and lymphoma, and decided to devote herself to a career in oncology. Struck by how limited the pipeline of new drugs for cancer was, she switched from a private practice oncology job into a career in drug development, ultimately rising to the position of president of Genentech. Two years ago, that physician, Susan Desmond-Hellman, became UCSF’s ninth chancellor.
My contributions were more modest, but were similarly transformative for me personally. After caring for scores of patients with pneumocystis pneumonia who died terrible deaths after being intubated in the ICU, I began to wonder whether we were doing the right thing by taking them there. The year was 1984, and I went to the library (remember libraries?) to see what was known about the outcomes of AIDS patients in the ICU.
Finding nothing, I entered the ICU at San Francisco General Hospital one day and asked the head nurse whether the unit kept a log of ICU admissions. Sure, she said, and she handed me a dog-eared, elementary school notebook with page after tattered page of inked entries in ruled columns. I created a log of AIDS patients admitted to the ICU for PCP and respiratory failure, went to medical records to pull their dusty charts, and began to review them, entering the data into this contraption that had been introduced earlier that year: a Macintosh computer. Its 128K memory was overtaxed by my spreadsheet, which contained about 20 clinical and demographic measures on each of 80 or so patients (“Please Insert Excel Disk 2!” barked the maddening alerts).
One day, when I was sitting in the ICU nurse’s station plowing through the log, a faculty intensivist named John Luce spotted me and asked me what I was doing. After I told him, he said, “That’s interesting. Phil Hopewell and I were thinking about doing the same thing.” Thus began a collaboration that ultimately produced most of the early literature on the outcome of AIDS patients in the ICU. This path later led me to be selected by Volberding to help him and others run the International AIDS conference in 1990, which in turn piqued my interest in the politics of AIDS and health policy more generally, an interest that culminated in my first book. My career since then – hospitalists, patient safety, quality – has merely been an extension of what I learned in those early days of AIDS.
I recently ran into my friend Arnie Milstein, one of the nation’s leading thinkers in health policy. Last year Arnie took a position at Stanford to lead a new center to promote clinical excellence. He began by creating a multidisciplinary post-doctoral fellowship, designed to bring together folks from engineering, psychology, business, and medicine to develop new delivery models in healthcare. “Do you take any older folks into the fellowship?” I asked. The answer was no. “It’s been clearly shown that most of the transformative changes in industries come from the minds of 20-35 year old people,” he said.
Milstein is right. My experience in those dizzying early years of AIDS taught me that young people are extraordinarily good at seeing opportunities that others miss – because they’re not shackled to old ways of thinking, because they don’t already have overflowing plates, and because they have Opportunity Antennae that, like telomeres, begin to fray as they age. While I doubt that there will be another pandemic like the one caused by HIV anytime soon – I certainly pray not – I do trust that today’s students and residents are out there looking for other opportunities to put their optimism, energy, and agility to work. Beyond the acquisition of core skills and professional formation, I see this opportunity-seeking as the central job of trainees, just as the central job of mentors and supervisors is to highlight these opportunities and then, mostly, to stay out of their way.