A Most Unexpected Path Laid by a Most Unexpected Disease

Dr. Ross Slotten chose family medicine to serve patients from cradle to grave. But, as he was entering practice, the AIDS virus was entering the community where his practice was situated, and he found himself serving patients much closer to the grave than the cradle. 

In June 1981, a few weeks before I began my internship in family practice [at Saint Joseph Hospital in Chicago], the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one. (p.14)

From both the circumstance of time and place he found himself in, and the sense of necessity and compassion that claimed him, Slotten’s professional trajectory unexpectedly shifted away from traditional family medicine towards specializing in AIDS. His interest in AIDS, however, extended to personal considerations, because as a gay man, he was part of the population at risk, and harbored the same anxieties and fears he saw in his patients and throughout his social circles. His patients were principally gay men because of his geographic location in an established gay community and the resulting referral patterns. The book chronicles both his experiences as a physician taking care of gay men with AIDS, and his experiences as a gay man at risk for AIDS. For Slotten, these experiences were not independent of one another, which makes for rich insights on the complexities of both. 

Slotten spent a lot of time at Saint Joseph Hospital because his patients required intense medical support and specialized services. He tells how he and his practice partner pushed for establishing a specialized AIDS unit in the hospital. They bumped up against usual bureaucratic obstacles, plus a few more concerning issues specific to AIDS patients, but they ultimately prevailed. Slotten “was to spend the next fifteen years there, often heartbroken, occasionally inspired.” (p. 109) In contrast to his commitment, he recounts how some specialists he called for help with particular patients refused when told they had AIDS. Those occurrences stuck with him: “I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need.” (p. 108)

With whatever little time he had left for volunteer and advocacy work, Slotten stayed local. He talks about the volunteer-run health clinics where he worked (e.g., the famed Howard Brown Clinic), and the housing facility he helped set up for homeless people with AIDS. He left protesting at the Food and Drug Administration, the National Institutes of Health, and the annual International AIDS Conference to others while he focused on his patients, his studies, his volunteer work, and his own safety.

The 2020s are approaching when Slotten writes about the preceding three-and-a-half decades. As he finishes the book he is still caring for people with HIV, but the horrible complications of AIDS are now infrequent since the availability of effective medications. His practice had been reliably stable and predictable for some time, a circumstance he could only dream of when he first started. That dream ended abruptly just as the book was released on July 15, 2020: Covid was surging.

Moments of Horror, Relief, Calm, and Then…

Slotten’s perspectives correspond with the trajectory of AIDS over the thirty-five years his memoir spans. Particular periods are discernable, beginning when gay men were presenting with illnesses associated with profound immunodeficiency of unknown cause. Another is the time of peak AIDS death and destruction represented by the moment in 1992 when Slotten hears from the Chicago Board of Health, “that no one had signed more death certificates in Chicago than I had.” (p. 122) The next moment arrives at the turning point when highly active antiretroviral treatment (HAART) became available, transforming HIV/AIDS for him “from a universally fatal disease…into a chronic one like diabetes…it was almost beyond belief.” (p. 186) Then the prolonged period of relative calm when AIDS became controllable—even preventable—with Slotten noting during a moment in 2016 that, “It had been almost a decade since I’d cared for someone with advanced HIV infection, and I hadn’t lost a patient to AIDS since 2004.” (p. 202)

The AIDS epidemic is known for and measured by the number of deaths that occurred. Slotten wants us to remember the misery the disease causes.

For those who didn’t experience that terrible time, or who’ve forgotten how terrible it was, let my chapters serve as a warning to the complacent and the ignorant: untreated HIV is as ruthless as any terrorist and as destructive as a nuclear device. (p. 3)

He drives this point home when he recounts the stories of individual patients tortured by Pneumocystis carinii pneumonia, Kaposi’s sarcoma, cytomegalovirus retinitis, herpes simplex infections, cryptosporidium dysentery, AIDS wasting syndrome, AIDS dementia complex, and progressive multifocal leukoencephalopathy among other medical horrors, and who often suffer many at the same time. And, all the while, he had little to offer but his wits and his compassion. 

Both attributes would be called upon again in 2020 as Covid struck. Though those with Covid did not produce nearly the fatality rate of AIDS, not nearly the severe comorbidities of AIDS, not nearly the stigma and prejudice as AIDS, and not any of the governmental insouciance seen with AIDS, it still caused a lot of death, suffering, grief, and misinformation at a time when only supportive care was available. Like AIDS, though, the Covid pandemic was transformed into a manageable syndrome with the availability of an effective vaccine, new antiviral agents, and better clinical management regimens.

Complacency remains a threat to the reemergence of any infectious disease. Indeed, AIDS is reportedly rising in poor and developing countries in 2026 as funding for AIDS treatment and prevention programs has been withdrawn from donor countries, mostly that from the United States. Lessons from Slotten’s book may thus be called upon again.

Notes

Book citation:
Slotten, Ross A. Plague Years: A Doctor’s Journey through the AIDS Crisis. University of Chicago Press, 2020. 224 pages

Plague Years is a good companion to the documentary film, 5B, which reports on how San Francisco General Hospital coped during the early years of the AIDS epidemic, and Rebecca Makkai’s novel, The Great Believers which features the stories of a group of gay men in Chicago also during the early years of the AIDS epidemic.

Dr. Slotten was a guest on an episode of The Clinic & The Person podcast to discuss his experiences during AIDS epidemic as he reported them in his book, and how well they match up with what we see in 5B and read in The Great Believers.

Web image by Medhum.org

Out of the gay rights activism in the 1970s came AIDS activism in the early 1980s. By then, the incidence and severity of AIDS had become evident and caused enough fear to generate social backlash against those with the disease. This, along with federal government insouciance at the time, made it necessary for gay rights activists to extend their remit into advocacy for health care specialization and research advancements for AIDS. The expanded activism was visible on the streets and at governmental research institutions (e.g., National Institutes of Health). Where it was also taking place, and not in such an obvious way, was within certain hospitals.  

San Francisco General Hospital answered the call first in 1983 when it created a special unit for the care of people with AIDS in “Ward 5B.” The unit was in operation through its move in 1986 into Ward 5A to accommodate more patients, and until 2003 when advances in antiretroviral treatment of AIDS made the unit no longer necessary. But throughout, the struggle to maintain and advance the unit medically, socially, and politically persisted. The documentary film, aptly named “5B,” covers the struggles, successes, and failures of the unit, and the activism required of the staff and advocates for its creation and ongoing viability.  

From the Inside 

The story is told from various perspectives through interviews with key figures in the unit’s development and operation, and with archival footage of the unit and AIDS activism in the community. The most prominent among the key figures is Cliff Morrison, a clinical nurse specialist who spearheaded the idea for the unit and then managed it. Several other nurses who served in staff and supervisory positions are also featured. Participating physicians include Paul Volberding, an oncologist at the time who became pivotal in the development of effective HIV treatments, and Julie Gerberding, a physician treating patients on the unit who later became the Director of the Centers for Disease Control (CDC). Lorraine Day, the chief of orthopedic surgery at the hospital when the unit opened, is heard often as an opposing voice. Hank Plante, a local television news reporter, also appears frequently to offer his perspectives on many of the social and political issues swirling around the unit. Among other participants are AIDS activists, volunteers, and family members of unit patients. 

Several storylines frame the documentary including how nurses drove the unit’s inception and then were instrumental in running it. “Nurses were in charge,” said Volberding, admiringly. Interwoven throughout the film are the experiences of the patients and individual nurses, including one nurse who was infected with HIV from a needle stick. “Those nurses were the real heroes,” said one activist.    

Rare is the story, though, about heroes who aren’t confronted with daunting challenges, and thus this documentary includes a storyline involving attacks the unit nurses encountered from inside the hospital. The nurses of this unit practiced in ways they considered safe but not in such a manner that would preclude them from touching patients or require them to don so much protective gear they become unseeable. Nurses and clinicians from other units objected and did not want to be compelled to adopt practices they thought endangered them on the occasions they took care of AIDS patients. The film follows this story through union grievances and public debates to their conclusion, which sided with the unit nurses and their advocates. The spirit of activism among the unit staff was pivotal in fending off the many challenges they faced. 

Keeping in Touch 

The documentary reveals stark juxtapositions that can manifest in the midst of an infectious epidemic, and in particular when an epidemic selects an identifiable group that is unwelcome in mainstream society. Two juxtapositions that stand out are the emotion of love with that of fear, and those who are deemed worthy with those who are considered disreputable. 

No treatments for the HIV infection or for the many horrid and lethal diseases resulting from AIDS were available when the unit opened—it was “a very, very unpleasant death” as one nurse put it. The nurses saw a big part of their role as offering love: “Here you were allowed to love your patients.” They offered it through human touch. Morrison’s view was, “If we can’t save these folks, we’re going to touch them.” To touch the patients in this way required that they balance it with the risk of exposure to infection and still comply with universal precautions. Nevertheless, fear was prevalent—some people were “truly hysterical” according to Gerberding—and it touched off conflict among the health care staff. “People were afraid…we found ourselves attacking each other…everyone was so stressed,” is how Volberding described the situation. This balance is one that is continuously negotiated in health care settings, but it was more pronounced during the early years of the AIDS epidemic, and at San Francisco General, it had to be mediated by hospital and union officials. 

At the time unit opened, and for a long while after, people with AIDS were scorned. The gay lifestyle was linked to the disease and so a view held by many was that the gay community deserved to be struck down by this plague. They were not worthy of all the human resources, technology, and money the disease required. The documentary brings this sentiment to life by showing the actions some people took to prevent getting these patients help, and the actions governments didn’t take to help them. Also shown, however, was how the activism of health care professionals and others in Ward 5B helped to overcome these obstacles. Without it in the case of the unit in Ward 5B, the activism in the streets outside the hospital alone may not have been enough.  

But Then 

These fevers abated some when medical advances produced treatments that obviated the need for AIDS units, and changes in societal attitudes led to more acceptance of gay lifestyles. The next epidemic that targeted marginalized and susceptible groups would determine whether lessons learned from the time of this unit had been incorporated in response protocols. That opportunity came the year this documentary was released in 2019 when Covid struck elderly people first and hardest, and especially those in communal living arrangements.  

Note: 

The documentary was featured on the podcast episode, How Terrible It Was: Three Takes on the AIDS Crisis with Dr. Ross Slotten, which can be accessed here on medhum. In addition to the documentary, the podcast episode included the novel, The Great Believers, and the memoir, The Plague Years: A Doctor’s Journey through the AIDS Crisis were discussed. The author of the memoir, Dr. Ross Slotten, joined the podcast as a guest. 

Title image credit: 
James Steakley, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons 

Documentary information: 
Film title: 5B
Directors: Paul Haggis, Dan Krauss 
Studio: Vertical Entertainment 
Viewing source: Amazon Prime 
U.S. release date: June, 2019 
Run time: 134 minutes  

Trailers from 5B Film

We return to the subject of how terrible the HIV/AIDS crisis was at its peak. The first time (Episode 9) we drew from a memoir, documentary film, and a literary novel. This time we feature the graphic memoir, Taking Turns: Stories from HIV/AIDS Care Unit 371 with the author MK Czerwiec. She created a memoir of her time as a nurse in an HIV/AIDS using the comic medium. Since then, Czerwiec has become a leading figure in Graphic Medicine. We talk to her about the Graphic Medicine field and its many applications, and about the many illustrative and poignant insights her book offers about the AIDS crisis in ways biomedical texts and few of the other arts can do nearly as well.

Links:
Website for Taking Turns: Stories from HIV/AIDS Care Unit 372
MK Czerwiec’s website
Graphic Medicine organization website
Russell Teagarden’s blog piece on Taking Turns: Stories from HIV/AIDS Care Unit 372 in According to the Arts

The Clinic & The Person is a podcast developed by our editor Russell Teagarden to summon or quicken the attention of health care professionals, their educators, researchers and others to the interests and plights of people with specific health problems aided through knowledge and perspectives the humanities provide.

Feature photo by National Cancer Institute