Reporting and Reactions From Forty Years Ago: Part I

For a small but significant period of time, Randy Shilts’ name and the HIV/AIDS pandemic were inextricably linked, which makes it difficult to write his biography without re-telling at least some of the disease’s history. In early drafts of my book, I included a great deal more information about June 1981 and the months that followed, when the response to what was then called “gay cancer” was still in its infancy, even though Randy was not yet covering it. In order to keep the book focused on Randy’s lived experiences, I decided to cut these sections from the manuscript, but saved them in case they would be useful for other purposes. In the coming week, to recognize 40 years’ passing since the first reported cases of HIV/AIDS, I’ve decided to re-purpose these excerpts, which focus on the halting, uncertain period before the full scope and severity of the pandemic was apparent.

Some of the people mentioned in these passages would feature prominently in And the Band Played On, while others received comparatively less recognition for their efforts. In adjusting to post-vaccination life in the age of COVID-19, re-reading this history has helped me to reflect on just how difficult, yet innately human it is, to struggle with a “new normal” when forces beyond our control make life as we’ve known it impossible (or impractical) to continue living as we had before. The excerpt that follows is the first in a three-part series, which examines the early understanding and reporting on AIDS, as well as how people reacted to it as events were unfolding.

Excerpt #1: A Pneumonia That Strikes Gay Males

Pneumocystis Pneumonia — Los Angeles

In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy- confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection.

The diagnosis of Pneumocystis pneumonia was confirmed for all 5 patients antemortem by closed or open lung biopsy. The patients did not know each other and had no known common contacts or knowledge of sexual partners who had had similar illnesses. Two of the 5 reported having frequent homosexual contacts with various partners. All 5 reported using inhalant drugs, and 1 reported parenteral drug abuse. Three patients had profoundly depressed in vitro proliferative responses to mitogens and antigens. Lymphocyte studies were not performed on the other 2 patients.

– Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, June 5, 1981:

“That’s kind of peculiar.” The subject of the report immediately caught the eye of David Perlman, who’d recently returned to his science and medicine beat at the San Francisco Chronicle after temporarily serving as City Editor. “I’ve never heard of that.” David made a phone call to his go-to source on communicable diseases, the venerable Dr. Selma Dritz at the city health department, and paid her a visit that same afternoon. “And she said yes, she’s had five similar cases show up in San Francisco,” he recalled, “and she was [also] puzzled by them.”

Perlman’s brief report appeared the next day, tucked in alongside a Page 4 profile of the San Francisco Gay Men’s Chorus’s first nationwide tour. “I didn’t even think it was all that important,” he reflected, “because I didn’t even put my byline on the story.” The report took note of the CDC’s suggestion that sexual contact may have played a role in transmission, given that all of the cases involved homosexual men. Still, all anyone knew for sure at this stage was this: pneumocystis carinii was a common bacteria, which didn’t make healthy people sick. An illness like this was more likely to be found in patients with severely depleted immune systems, like cancer victims.

At this point, members of the gay press had about as much knowledge of the medical mystery as their contemporaries in the mainstream news media. As recently as mid-May, New York’s Dr. Lawrence Mass – no stranger to gay men’s health concerns – had penned a brief article in the New York Native downplaying rumors of an exotic new gay disease, a claim that the MMWR report now seemed to contradict. At the end of June in its special Gay Freedom Day edition, the San Francisco Sentinel made note of the strange cases of pneumonia with a five-paragraph summation that added comparatively little new information to David Perlman’s earlier article.

One week later, the MMWR issued another startling release: the skin cancer Kaposi’s Sarcoma, a condition usually seen in older men of Eastern Europe or younger men of equatorial Africa, had now been diagnosed in 26 gay men in New York and California. On that very same day, the New York Times went to press with its first story on the issue: “Rare Cancer Seen in 41 Homosexuals.” The strongest commonalities, journalist Lawrence Altman noted, were patients’ high and frequent numbers of sex partners – upwards of ten different men per night, around four nights per week – and the use of amyl nitrates (“poppers”) during sex. Most of the patients, he noted, were men still in their twenties, thirties, and forties. The strange outbreak of bruise-like lesions on their bodies, along with a growing number of pneumocystis carinii pneumonia cases, pointed toward a medical mystery that experts were just beginning to notice: what was causing these otherwise healthy men to become so sick?

At the end of July, the first news article of significant length or depth appeared in the New York Native. Over several dense pages, Larry Mass laid out a methodical examination of possible explanations for so-called “gay cancer,” the causes for which, he reasoned, could be narrowed down to either hereditary or environmental factors. Noting that the current wave of cases differed from “typical” Kaposi’s Sarcoma victims found in Eastern Europe and Africa, he ventured one possible explanation: a common link to Cytomegalovirus, which was common in the histories of all the patient subgroups so far. From the very beginning, the issue of immunosuppression seemed unavoidable, but again, Mass cautioned, any number of genetic or environmental factors can cause the body’s defenses to weaken. There wasn’t nearly enough evidence yet to determine what was the cause, or how widespread the problem might be.

“In addition to diagnostic and treatment considerations,” Mass wrote, “preventive implications are unavoidable. At this time, many feel that sexual frequency with a multiplicity of partners – what some would call promiscuity – is the single overriding risk factor for developing infectious diseases and KS.” Yet, because it wasn’t clear whether certain persons were inherently more susceptible to these diseases than others, recommendations on exactly what precautions to take around hygiene, limiting partners, or using barriers like condoms remained difficult to make with complete confidence.

“Obviously, the ‘somethings enjoyable’ are all coming under scrutiny as possible factors, since it is largely, but not exclusively our sexual activities that set us apart from heterosexual people,” Dr. Robert Bolan, a co-founder of Bay Area Physicians for Human Rights, noted in the Bay Area Reporter’s first gay cancer story. “No clear associations have emerged as yet between specific sexual activities or number of partners and any of these conditions.” For the time being, he continued, there was no evidence of an epidemic, although in the coming weeks, the number of reported cases would likely go up. For now, the work was only beginning. Doctors and researchers needed more time to study the evidence, meaning this was a moment not for panic or presumption, but measured caution and concern.

Source Notes

Past issues of the Morbidity and Mortality Weekly Report are archived online. The specific issues referenced in this piece can be found here and here.

Reflections by David Perlman come from our in-person interview at the San Francisco Chronicle on March 17, 2016.

Information and direct quotes from the June 6, 1981, San Francisco Chronicle were retrieved from the University of Minnesota Microfilm Collection.

Information from the July 3, 1981, New York Times was retrieved from the Times’ online archive.

Information and direct quotes from the June 26, 1981, San Francisco Sentinel were retrieved from the San Francisco Public Library Microfilm Collection.

Information and direct quotes from the July 27 – August 9, 1981, New York Native were retrieved from the University of Minnesota Jean-Nikolaus Tretter Collection.

Information and direct quotes from the August 13, 1981, Bay Area Reporter were retrieved from the BAR’s online archive.