I think of the years from 1982 until the late 1980s as the "dark years" of my medical career. The growing monster of the AIDS epidemic did not allow me ever to fully separate from my work.
There was little time for anything but taking care of very sick patients. Their pain, suffering, and fear were unimaginable. It is difficult to describe the intense emotional stress and frustration that a physician or healthcare provider feels in caring for large numbers of desperately ill and usually terrified patients. Working alongside Cliff Lane, MD, Henry Masur, MD, and me were a group of talented and committed nurses, fellows, residents, and other health professionals who shared our burden and without whom we never would have been able to provide the patients with the extraordinary level of care they needed.
We did not know the cause of the disease, and we certainly did not have a cure. It felt as if we were putting Band-Aids on a hemorrhage. We had drugs that treated the opportunistic infections, but no sooner was one infection treated than others appeared that were ultimately killing the patients. The disease progressed relentlessly despite our best efforts. The median survival of our patients was 9-10 months, which means that half of them would be dead within that time.
On any given day, our ward on the eleventh floor of the Clinical Center had a dozen or so such patients. I was trained for many years to be a healer, and during this period I was healing no one.
The only saving grace in that experience was the inspiration we felt witnessing the courage and dignity of our uniformly young patients throughout the unthinkable ordeal to which they were subjected. Our patients usually remained in the hospital for extended periods before they either died or left for facilities such as hospice, and we physicians and nurses got to know them well. Watching them suffer and ultimately losing them weighed heavily on us, as it similarly did on my physician-colleagues and friends who were caring for the growing numbers of AIDS patients in hospitals in New York City, Los Angeles, San Francisco, and other large cities. We often compared notes by telephone and in visits to each other's medical centers, and our experiences were identical.
Even today, I get flashbacks of scenes in the rooms of patients that gripped me then and evoke strong emotions in me more than 40 years later. One scene in particular among many, many others comes back to me often.
After we had tried almost all available and ultimately inadequate interventions, including bone marrow transplantation and multiple lymphocyte infusions, on our first ward patient, Ron Rinaldi, his condition slowly deteriorated. Nonetheless, he remained cheerful under the circumstances. His immune system was practically destroyed, and he was prey to a number of opportunistic infections. One particularly difficult infection was cytomegalovirus, which can attack a number of organ systems such as the gut and the retina of the eye, leading to compromised vision.
We had been attempting to treat Ron for cytomegalovirus infection with available drugs such as acyclovir (Sitavig); however, the only way to stop the progression of the disease is to reconstitute the immune system at the same time as directly treating the cytomegalovirus infection. But we had no way of reconstituting his immune system. The lymphocyte infusions and bone marrow transplant that he had received from his twin brother had failed.
Ron was such a likable fellow that Cliff and I looked forward to speaking to him on the twice-daily formal rounds we made on our patients. I would walk in and stand by his bedside. He would say, "How's it going, Dr. Fauci? Nice to see you."
Only one day on evening rounds, Cliff and I walked in; I approached Ron's bed and smiled at him. He looked straight at me and said, "Who's there?" It was as if someone had stuck a spike in my chest. Ron had gone completely blind.
The cytomegalovirus, despite treatment that was obviously inadequate, had literally chewed up the critical sight elements of his retina from the time we had made morning rounds to the time we walked into the room that evening. I constrained my emotions as Cliff and I comforted him about this devastating outcome, although he said to us he expected that this would happen because he had been gradually losing vision over the previous weeks.
We left and finished our rounds. I went back to my office around the corner and down the hall from the patient ward, just out of sight of my team, and burst into tears. I was not just deeply shaken and saddened; I was profoundly frustrated and angry. Ron would soon die.
This is just one such story. I could not fully appreciate it at the time, but for us there were to be hundreds and hundreds of similar stories right here on our ward.
I had experienced grief before. I lost my mother to cancer when I was 24, and I knew how it felt to lose someone whom I loved deeply. But the loss we were experiencing now was different by several magnitudes. It was chronic, pervasive. I had gone into medicine because I wanted to serve people, and as a clinician it was my job to heal patients, to find solutions, to pull them back from impending disaster. It was something I was very good at. I am also an optimist by temperament. Now, as wave upon wave of men, often in their twenties and thirties, were handed a death sentence, none of my training or temperament provided a bulwark against that horrible, inevitable outcome.
Helpless was the only way to describe it, as if we were battling an unseen enemy in a war zone -- an enemy that was steadily overtaking us. But the physicians, nurses, and healthcare providers on our team could not give up. Burnout was not an option. The patients needed us, and even though we could not cure them, we could offer them what we had -- clinical skill, empathy, and excellent care. We had to stick with it and we did. And except for the occasional moment of uncontrolled grief such as when I learned that Ron Rinaldi had lost his sight, all of us who worked on the ward with these patients had to stuff away our feelings of loss, day after day, just to be able to carry on.
Those feelings can be stuffed down for only so long. Today, when I flash back to that time, tears spontaneously well up. I have read about post-traumatic stress disorder, and I am sure that in this very specific area, I have it. And I am not alone. I know from speaking to many of my colleagues who were in the trenches of AIDS during those years that they have had similar feelings. But what we went through was nothing compared with the suffering of our patients and their families.
Anthony Fauci, MD, is the former director of the National Institute of Allergy and Infectious Diseases (NIAID), and advised seven presidents on HIV/AIDS and many other domestic and global health issues. This piece was excerpted from Fauci's new book, , published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House LLC. © 2024 by Anthony S. Fauci.