What HIV/AIDS Taught Me About Pandemics: A Clinician’s Perspective

As the surge in cases of COVID-19 in Massachusetts occupies us day and night, I sit with my 22-year-old patient to discuss the guarded prognosis of his newly diagnosed brain tumor. I have this complex, heavy-hearted, and nuanced discussion with my overwhelmed patient while he is alone, his fiancé and mother sitting at home, barred from entering the hospital due to the COVID-19 crisis, and the thought occurs to me: “I’ve been here before.” I was a medical student and trainee in San Francisco during the AIDS epidemic. I reflect on the first patient I was called upon to pronounce dead of AIDS, lying alone in his hospital bed because his family had disowned him for being gay. Alone for distinctively different reasons, yes, but alone nonetheless. Many overarching themes, cultivated during the struggles of the AIDS epidemic, can help us navigate the practical and ethical challenges of the ever-changing and tumultuous COVID-19 pandemic, all in the service of the safety and well-being of staff, patients, and communities.

The most poignant common theme of the AIDS and COVID-19 pandemics, then as a trainee and now as seasoned physician, has been the overwhelming anxiety fueled by uncertainty. In the 1980s, we heard conflicting information regarding HIV and AIDS. Was HIV transmitted through sweat? Through saliva? Through casual contact? Did we need to wear gloves when examining our HIV-positive patients, or was wearing gloves merely contributing to the stigma surrounding the disease? Now, frightened staff administer treatments to COVID-19–positive patients and ask, “Is a surgical mask adequate to keep me safe? Is it safe to hold my newborn when I come home from work? Are my seasonal allergies in fact COVID-19? Will we run out of personal protective equipment before my shift tomorrow?” Thirty years ago, we were empowered, despite ubiquitous uncertainties, to unite in the service of a common cause, due in large part to the transparency of our leaders. From senior residents on general medicine inpatient teams to hospital leaders and local agencies, many had the insight, integrity, and fortitude to openly discuss the limitations that accompany developing information; they explicitly acknowledged the ever-changing recommendations and recognized the distress associated with the unknowns. The visceral recollection of the fear I felt as an intern scrubbing in for an emergency appendectomy for a patient with AIDS, as I worried about my 2-year-old son and soon-to-be born daughter, has reminded me of the ceaseless importance of candid, authentic, and transparent communication.

Another theme to emerge, as we band together to care for each other and our patients, is the isolation that pervaded the AIDS crisis and now permeates the COVID-19 pandemic. As an intern, most of my admitted patients had AIDS and were terrified by the meaning of their fulminant adenopathy or the new purple patches on their feet. And just as often, they arrived alone. I witnessed the pain and isolation that comes from having been abandoned and stigmatized. The communities that embraced them and sat by their bedsides in hospice could only partially compensate for the shame imposed upon them by society. The isolation of patients with AIDS is a theme not dissimilar to the abandonment and neglect the underserved must be feeling as they encounter further inequities in their attempts to access acute and critical care in the COVID-19 era.

In our clinic, it was only weeks ago that our waiting rooms were filled with families and friends holding hands, supporting unsteady gaits, and whispering words of comfort. Now, our patients come in alone for their daily radiation treatments and are greeted by staff wrapped in protective gear that belies their warmth and compassion. As providers and staff make do with these new rules of order, we cannot help but think of the many patients on hospital floors above fighting COVID-19 infections, perhaps dying alone. As in the AIDS crisis, and now more than ever, our patients’ physical isolation from their loved ones magnifies the importance of our healing touch and compassionate presence.

Yet another aspect of the AIDS crisis that resonates with the COVID-19 era is the challenge of the ethical dilemmas and the need for moral leadership. Despite a wealth of scientific evidence demonstrating their efficacy in curtailing transmission of HIV, a federal ban on needle exchange programs was instituted, propelled by ideological beliefs that equated these programs with tacit endorsement of illegal drug use. In 1988, when my medical school clinical rotations began, discussion of the ethical underpinnings of needle exchange dominated many conversations, from grand rounds to evening on-call deliberations. Acknowledging and balancing conflicting interests hit very close to home. In the early morning hours of a long night on call, I was asked to assist with a surgery for an HIV-positive patient. I was terrified. I would assist, of course, but to what risk was I exposing myself and my unborn daughter? The acknowledgment and validation of those fears by my team then showed me how vitally important it is for us to extend that same respect and compassion to each other and to our patients now.

As chair of a radiation oncology department, I see with increasing clarity how the privilege of training in medicine and learning to become a healer during the AIDS crisis has shaped my approach to leadership through the COVID-19 crisis in invaluable ways. As COVID-19 patients present to us with cancer diagnoses requiring radiation therapy, we are faced with decisions regarding whether to delay or interrupt their radiation until their infection resolves or to continue their oncologic care. Do we delay their radiation, potentially diminishing their likelihood of cure, or do we proceed, potentially exposing our frontline staff to COVID-19 infection? As we struggle with such decisions within departments and among colleagues, as we consult Infection Control to help us assess the true risks, as we engage bioethicists to help us consider all perspectives, I recall, again and again, my experience as an intern scrubbing in at 4 AM. We ultimately chose to continue with radiation treatment for our first COVID-19–positive patient, but only after acknowledging the weight of this decision, with transparent discussion of risks and with affirmation of the concerns and fears expressed by our frontline staff. When stakes are highest, risks greatest, and interests least congruent, leaders must lead by example, shielding their staff while incurring risks as much as feasible.

As HIV changed the national discourse and perception of gay people, might COVID-19 highlight inequities in our society and lead to greater social change? As HIV was an antihierarchical disease, perplexing new and seasoned doctors alike, spawning the brand-new specialty of HIV medicine on the shoulders of young physician-activists, will COVID-19 shift the current stratifications of health care? As HIV spurred federal research funding and multinational partnerships, will COVID-19 inspire a renewed commitment to multilateral collaboration and cooperation? The many parallels between the AIDS crisis and the COVID-19 pandemic, those lessons learned that inform our choices now, are themes we must apply to everyday health care. I hope, as we care for our patients, support one another, and lead our departments and institutions, we remain mindful of our need to consider the anxiety of uncertainty, the pain of isolation, and the weight of the moral and ethical struggles we will undoubtedly continue to encounter.