Junkies,Queers,and Babies: Persistence and Updating of the Category AIDS Through Silencing and Puncturing of the Moral Boundary

Oral histories

Our primary data source was 103 oral histories provided by 96 medical professionals who participated in the early AIDS epidemic. We used oral histories collected by historians and sociologists at three institutions: Columbia University, the University of California San Francisco, and the National Institutes of Health (NIH) Historical Office. These oral histories provide rich accounts of how medical professionals thought about, understood, and categorized the disease—cognitive processes that are often invisible from official records, statistics, and publications. Table 1 includes an overview of these oral history collections.

Medical articles

To mitigate potential retrospective biases in the oral histories and gain further insight into the process of categorizing the disease, we collected and analyzed academic articles published between 1981 and 1985 in four major medical and scientific journals: Morbidity and Mortality Weekly Review, The New England Journal of Medicine, The Journal of the American Medical Association, and Science. ¹ Due to the difficulty of identifying AIDS-related articles published before the label AIDS was created in 1982, we manually examined the titles and abstracts of all articles published in the four journals between 1981 and 1983. We identified 370 AIDS-related articles published across these journals.

Media data

To gain insight into how broader audiences discussed knowledge and theories produced by medical professionals, we collected an additional 589 articles written about AIDS published in The New York Times between 1981 and 1985. Using knowledge gained from the oral histories and medical articles, we searched using the keywords “Kaposi,”“Pneumocystis,”“immunodeficien*,”“immuno-deficien*,”“immune deficien*,”“gay cancer/pneumonia/disease/syndrome,” and “homosexual” to identify articles written about the epidemic before the term AIDS became official.

Congressional hearings

To understand the federal response to the epidemic, we collected congressional records, using the same keywords as those used for the media data. In total, we collected 62 congressional hearings. We also collected reports that included funding information produced by the Office of Technical Assessment, a now-defunct congressional arm that was responsible for providing unbiased analyses of complex scientific and technical issues.

Secondary sources

To deepen our understanding of the context, we extensively read secondary sources and watched documentaries and video recordings. We used intertextual references (Kahl and Grodal, 2016) to compile our list of these sources. We mitigated potential biases in non-academic accounts by triangulating them with our primary data sources of medical articles, media data, and congressional reports. Table 1 lists our main secondary sources.

Stage 1: Initial question and empirical observations

We began our data analysis with the initial grand tour question (Spradley, 1979) of how medical professionals in the United States constructed the category AIDS during the initial stages of the epidemic. First, we created a chronological timeline of key events and began coding our oral histories with particular emphasis on the demographics of patients encountered by doctors (e.g., “gay man,”“drug user,”“woman,”“hemophiliac,” etc.) and on whether doctors included or excluded these patients from the emerging category. Since the early epidemic lacked an official label, we also tracked the evolving labels used over time, drawing from both our oral histories and archival data (e.g. “gay cancer,”“gay-related immunodeficiency”). We were quickly intrigued by the initial categorization of the emerging epidemic as a “gay disease” and how medical professionals categorized patients whom they viewed as anomalies—that is, those who did not fit their initial understandings of the emerging category.

Stage 2: Initial working hypotheses

In light of these initial observations, we generated a set of working hypotheses about the categorization dynamics (see Figure 1). For instance, the frequent omission of female and pediatric patients by medical professionals, coupled with the frequent mentions of moral meanings infused into the category in our oral histories data (e.g., “The public was not very supportive of this disease or this segment of the population. . . . People were saying that this was God’s way of saying gays should not be doing this,” Dr. Quinn, oral history), led us to posit the working hypothesis that “anomalies are categorized based on moral meanings.” In contrast, our observation that a small number of medical professionals included hemophiliacs in the category early on, coupled with references to causal theories in our medical archival data, spurred us to generate the working hypothesis that “anomalies are categorized based on causal theories.” Considering numerous accounts of resistance to updating in the oral histories, we also posited that “persisting moral meanings spur resistance against the updated category schema.” At this point, we revisited the literature on categorization and realized that examining categorization processes based on moral meanings and causal theories held significant potential to extend the existing literature (Durand and Paolella, 2013).

Stage 3: Focused coding

The initial working hypotheses guided our focused coding process to track core constructs. We tracked changes in the category’s moral meanings and causal theories, with particular attention to how medical professionals persisted in or updated their prior understandings in the face of anomalies. For instance, we pondered why drug users barely challenged either the moral meanings or the causal theories of the emerging category (e.g., “People were saying [about drug users] ‘maybe these are really gay men that are selling themselves to get drugs,’” Dr. Curran, oral history), while babies with similar symptoms disrupted both the moral meanings and causal theories (e.g., “no one wanted to believe that . . . this sort of filthy disease could occur in children,” Dr. Oleske, oral history). Specifically, through triangulation between oral histories and medical articles, we pinpointed the concrete moment when the CDC discontinuously updated their causal theory (see Phase 3 in our Findings section). During this stage, we came to realize that different social groups engaged in category persistence and updating at different points in time.

Stage 4: Initial mechanisms and a new salient puzzle

The focused coding led us to develop several initial mechanisms of category persistence and updating (see Figure 1). For example, we developed the code “dismissing” (e.g., “I remember there was a woman who clearly had AIDS. There were no women reported. [Her case] sat on the shelf for about two years,” Dr. Grossman, oral history) as an important mechanism that spurred persistence. We also coded for “constructing an alternative causal theory” (e.g., “In this week’s MMWR [Morbidity and Mortality Weekly Review], there will be an article describing three AIDS patients with hemophilia, and we think this makes it look very much like it is a virus that is transmitted in the blood,” Dr. Curran, oral history), which linked this code to category updating. Among others, the code “silencing” (e.g., “The stories just weren’t coming out on the gay syndrome. . . . Editors were killing pieces. They didn’t want stories about gays,”Shilts, 1987: 99) emerged as an important mechanism of persistence. At this point, we iterated back to the categorization literature and realized that it has often characterized category contestation as overt and explicit discursive conflicts (Jones et al., 2012; Grodal, 2018), which made the silence occurring in our setting theoretically more salient.

We then began coding to identify when and by whom the category was updated or persisted. We observed that a small, core group of medical professionals revised the causal theory of the category relatively early in the process and began advocating for others to update the category as well. We labeled this core group the vocal minority. In contrast, a larger number of peripheral actors displayed resistance to updating the category, forming what we termed the silent majority (Cattani, Ferriani, and Allison, 2014; Hsu and Grodal, 2021). This perspective brought forth a new salient puzzle: despite the abundant evidence supporting the updated causal theory of AIDS, why and how did the silent majority persist in their initial understanding of the category?

Stage 5: Additional data collection and analyses

Our archival data at this stage were skewed toward the categorization process within the vocal minority who had left extensive paper trails. In contrast, exposing persistence and silence within the silent majority was empirically challenging because these actions tend to not leave a paper trail. To address this methodological issue (Grodal, Anteby, and Holm, 2021), we collected extensive additional data, such as media articles, congressional reports, and various secondary sources, including journalistic investigations and video recordings. We also identified government reports to track federal funding allocated to AIDS during our study period (U.S. Congress, 1985; see Table 1 for an overview of the data).

We devised three analytic strategies to shine light on silencing and persistence: (1) comparative analysis: we highlighted the degree of silence by contrasting media coverage of the AIDS epidemic with that of another epidemic, Legionnaires’ disease, whose scale and fatality rate were comparable to those of AIDS in the latter’s early days; (2) temporal analysis: we tracked temporal trends in media attention, using New York Times articles to see how the extent of silence surrounding AIDS changed over time (see Phase 5 of the Findings section for details); (3) observations of micro-interactions: we analyzed video recordings of federal and state government officials to examine the prevalence of silence in contexts where the topic of AIDS should have been relevant. Using these rich data, we conducted coding for the micro-interactions that occurred after questions about AIDS were raised, focusing on whether these questions were adequately addressed or disregarded.

Stage 6: Final theorization of mechanisms and phases

By incorporating the initial mechanisms that we identified in Stage 4 and new insights gained from the additional data collection and analyses in Stage 5, we finalized the temporal map of events and formulated the final mechanisms that drive category persistence and updating. Figure 2 shows the temporal map of events. We then sequenced the mechanisms into a theoretical model that illuminates the process of proto-category formation, category persistence, and category updating. Table 1A in the Online Appendix provides an overview of the mechanisms identified along the temporal phases.

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Figure 2.

Temporal Map of Events

Drawing from the insights gained through these analyses, we structured each phase of our Findings section as follows: we begin by describing anomalies that challenged the existing category schema, outline the mechanisms driving persistence and updating within different social groups, and then present the consequences of persistence and updating for resource allocation.

Shelving anomalies

From around 1978 to early 1981, medical professionals began to encounter heterogeneous groups of patients suffering from anomalous symptoms that did not fit existing medical categories. For example, Dr. Rubinstein recalled, “I fell upon the first patient with AIDS in 1978 . . . The baby had a lot of bacterial infections, huge lymph nodes, and a very high serum gamma globulin level, which was very unusual for a six-week-old baby.” Likewise, Dr. Calabrese recalled his amazement when he first saw a patient with inexplicable symptoms: “I still remember the first case of a young man who came to Cleveland and was literally covered with Kaposi’s [purple skin lesions]. . . . He had no less than 11 opportunistic infections. The whole picture of this, just strange, unusual, kind of other-worldly; I was struck by the gravity of the whole thing.”

Initially, medical professionals did not recognize any patterns among the individual cases. The symptoms included skin cancer, pneumonia, wasting, dementia, and swollen lymph nodes, while the patient demographics spanned infants, women from impoverished communities, young men in big cities, and undocumented immigrants. For example, Dr. Quinn saw a female patient with Pneumocystis pneumonia at the National Institutes of Health in January 1981. Although he and his colleagues were intrigued by the patient, Dr. Quinn stated that they “did not pursue the case further,” saying, “who knows what she [the patient] had.” Such cases were “lost to follow-up, nothing was left [to pursue].” These cases were regarded as isolated and inexplicable, from which a pattern could not be drawn. Medical professionals thus shelved these anomalies in the back of their minds without realizing the need to create a new category.

Generating the category schema by grouping salient anomalies

The initial categorization process was triggered when, around May 1981, a small group of medical professionals began to spot a pattern among a few anomalies that existing medical categories did not explain. In early 1981, dermatologists in San Francisco and New York City realized that they were observing the occurrence of Kaposi’s sarcoma, an extremely rare skin cancer that causes purplish lesions, in multiple homosexual men. Dr. Conant recalled,

The [Kaposi’s sarcoma] patients were, from the moment they were diagnosed, very visible. . . . The first of April of 1981, I learned through Jim Groundwater, who was a dermatologist here in town [San Francisco], that Alvin Friedman-Kien was seeing cases in New York. . . . So I called him, and he told me that, yes, they were seeing Kaposi’s sarcoma, and that it was very interesting.

Simultaneously, a group of physicians in Los Angeles spotted the occurrence of Pneumocystis pneumonia in five homosexual men and submitted a case report to the CDC. This bacterial infection was extremely rare, and it killed young, previously healthy patients at a rapid pace. In June 1981, the CDC released a case report in its main periodical, Morbidity and Mortality Weekly Review, which became the first report of the epidemic (Gottlieb et al., 1981).

As Kaposi’s sarcoma and Pneumocystis pneumonia co-occurred in multiple patients, the CDC quickly organized a small task force on this new potential epidemic. This trigger event spurred medical professionals to group the salient anomalies and create a proto-category.

Generating the category schema through infusing moral meanings

Quickly, a schema pertaining to the proto-category arose, emphasizing one salient feature: the patients’ homosexuality. The earliest labels for the proto-category contained the term “gay,” such as gay cancer, gay pneumonia, gay syndrome, and later, gay-related immunodeficiency (GRID). For instance, Dr. Ammann admitted, “I’m embarrassed by it now, but if you go through my research notes and reprints, the early ones have ‘gay syndrome’ written across them.” Dr. Conant recounted,

The disease wasn’t called AIDS in the beginning. It was called the gay cancer, and then a few months later became known as GRID, gay-related immune deficiency syndrome. . . . gay cancer, it was a uniformly fatal disease, and it was the wrath of God being visited on these men, . . . being punished for this behavior.

In 1981, homosexuality was still a divisive and provocative topic that evoked strong moralizing emotions such as disgust among the general public (Herek, 2004). Homosexuality had been removed from the American Psychiatric Association’s official list of mental disorders only in 1973, and 29 states in the United States still had so-called sodomy laws outlawing sexual acts between persons of the same sex. In general, homosexuality was largely considered a morally deviant form of sexuality (Eskridge, 2008; Tilcsik, Anteby, and Knight, 2015) and remained an undiscussable topic (Adut, 2005; Tebble, 2011). The proto-category AIDS was, thus, infused with stigmatized moral meanings that placed it outside the moral boundary of what was deemed worthy and discussable (Douglas, 1966).

Generating the category schema through constructing a causal theory

Only a very small group of doctors and public health officials paid attention to the emerging proto-category and tried to identify a cause for the disease. Most early hypotheses revolved around the salient feature of homosexuality. For example, Dr. Dritz and her team thought,

Maybe some chemicals in the gay community are suppressing the immune system. So we began to look at the environment. All the gays—generalizing, of course—had plants in their house. What do you use on your plants? Plant food, plant chemicals, bug sprays . . . What do you use to get a high? We sent two of my men into the Jaguar Bookstore and the Ambush, and they bought “poppers” under the counter.

In the earliest phase, as Dr. Levine said, “most investigators believed that the cause was something restricted to the gay population and it probably was a drug or a toxicant,” not a viral or infectious agent. An editorial published in The New England Journal of Medicine stated,

These salient features have emerged: The patients are typically young homosexual men, most of whom live in large cities and many of whom use drugs . . . Why this group? . . . So-called “recreational” drugs are one possibility. (Durack, 1981)

In other words, medical professionals constructed causal theories referencing gay men’s lifestyle to explain the rise of the proto-category.

Persistence of the category schema through silencing

By August 1981, less than three months after the first report, a total of 107 cases and about 50 deaths from the mysterious disease had already been reported (Associated Press, 1981). However, this new epidemic received extremely limited media attention, compared to other past epidemics of similar size and fatality rate. For example, when Legionnaires’ disease befell 182 American veterans and killed 29 of them in 1976, it immediately garnered nationwide attention, with The New York Times running five front-page articles within a week from the onset. In contrast, the same newspaper ran only three short back-page articles about the “homosexual epidemic” throughout 1981, “setting the tone for non-coverage nationally” (Shilts, 1987: 99). Table 3 shows the stark difference in media attention between Legionnaire’s disease and AIDS over a similar time span. The media’s silence meant that most medical professionals and broader audiences were either unaware of the epidemic or viewed it, as Dr. Ziegler noted, “not worth going after.” Only a very small minority of medical professionals paid attention to the proto-category.

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Table 3.

Comparison of The New York Times Coverage of Legionnaire’s Disease and AIDS Within the First Four Months of Outbreak

Period of Comparison		Legionnaire’s Disease	AIDS*
		Aug–Dec 1976	Aug–Dec 1981
The magnitude of the epidemic outbreak	Deaths by the end of the year	29	90–100
	Cases by the end of the year	182	160–180
	The rate at which the caseload was increasing	The no. of cases sharply decreased after a one-time event.	The no. of cases was exponentially increasing.
Newspaper coverage	First article in New York Times	Front page, center-top, written by a New York Times journalist(115 ill, 20 deaths)	Page 9, center-bottom, copied from other news source (AP news)(107 ill, about 50 deaths)
	Number of front-page articles	11	0
	Number of articles	54	4
Government awareness	The White House was aware of the outbreak	Yes	No

*

The labels “Legionnaire’s disease” and “AIDS” did not exist in the very beginning of those epidemics. To identify the early media articles that reported the outbreaks, we used search words such as “flu-like disease” and “legionnaire” for Legionnaire’s Disease, and “Kaposi,”“Pneumocystis,”“immunodeficien*,”“immuno-deficien*,”“immune deficien*,”“gay cancer/pneumonia/disease/syndrome,” and “homosexual” for AIDS.

The state of the category schema

The initial state of the category schema involved prototypical features (abhorrent and fatal symptoms such as Kaposi’s sarcoma and Pneumocystis pneumonia), stigmatized moral meanings (a disease among homosexual men), and causal theory (a disease caused by gay lifestyle), creating coherence surrounding the category. Silencing emerged as a dominant reaction toward the proto-category from the majority of audiences, including most medical professionals.

Consequences for resource allocation

This powerful moral marginalization resulted in a dearth of resources allocated to dealing with the proto-category. A congressional report shows that no federal funding was allocated to the epidemic during this period (U.S. Congress, 1985). Figure 3 shows the trends in federal funding for AIDS and in media coverage during our period of study from 1981 through 1985.

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Figure 3.

Trends in Media Attention and Federal Budget for AIDS

The CDC was the only federal agency that paid attention, along with a few individual doctors who were in direct contact with patients. Back then, however, the CDC was a low-status, resource-deprived institution geographically isolated in Atlanta. According to Dr. Dritz,

CDC’s job was . . . if there’s a case of malaria in Louisiana, you go out there and clean it up. That’s why they’re down in Atlanta in the first place, because that was the place where malaria and the other deep South diseases were focused. CDC wanted to move to the Washington area, but they weren’t permitted to.

To examine the emerging epidemic, the CDC had only a few young doctors and a very small amount of resources from their internal budget.

Anomalies challenging the category schema

In December 1981, medical professionals began to spot a new set of anomalies, such as intravenous drug users, Haitian immigrants, heterosexual women, and infants, that were difficult to explain by the existing category schema. While these anomalies aligned with the schema of the proto-category along the prototypical dimension (symptoms), they misaligned with the category schema along the dimensions of moral meanings and causal theories. During this phase, most medical professionals maintained the category schema’s existing moral and causal dimensions, without updating, through three mechanisms: attributing features, dismissing anomalies, and silencing.

Persistence of the category schema through attributing features to anomalies

When encountering anomalies, medical professionals often tried to fit them into the existing causal theory of GRID. For example, when physicians reported GRID-like symptoms in male heterosexual drug users (Masur et al., 1981), many assumed that these drug users were either gay or had engaged in gay sex. Dr. Curran, who was the head of the CDC task force, explained:

[Masur et al. (1981)] reported drug users . . . People were saying, “Maybe these are really gay men that are selling themselves to get drugs.” . . . It was hard to demonstrate that it was occurring in other groups [besides gay men] initially.

The inclusion of male heterosexual drug users in the category did not require major revisions to both the moral meanings and causal theory of the category. Drug users were an equally if not more marginalized group, making it easier to attribute characteristics to them. The category schema persisted by most medical professionals attributing features to the anomalies to fit the existing dimensions.

Persistence of the category schema through dismissing anomalies

When it was difficult to attribute features to anomalies to fit the category schema, such as when medical professionals encountered GRID-like symptoms in women and children, these professionals simply dismissed the anomalies altogether. For example, Dr. Piot recounted,

Yes, we were seeing women. . . . But we hadn’t completely internalized the thinking that this was the same thing we were seeing [in gay men] because there seemed to be such a dogma that this was a gay disease . . . they called it GRID.

Dr. Rubinstein, a pediatrician, recalled, “No one else began even to think about pediatric AIDS. ² In 1981, we caused a lot of turmoil whenever we even hinted that such a syndrome may exist. In a meeting [of the American Academy of Pediatrics] . . . when I raised my hand and spoke about children, everyone pooh-poohed it.” Overall, dismissing anomalies was a powerful mechanism through which the initial category schema persisted.

Persistence of the category schema through silencing

A strong moral boundary continued to separate AIDS patients from the general public. In early 1982, there were over 120 reported deaths, including heterosexual drug users, women, and children. Nevertheless, the media was still silent, and editors rejected articles written about the subject (Nelkin, 1991). Slowly, the small minority of medical professionals and concerned individuals began to think that the stigmatized moral meanings were behind the public’s puzzling silence. Representative Waxman, from California, held the first hearing on the disease in Los Angeles, in which he said,

I want to be especially blunt about the political aspects of Kaposi’s Sarcoma. This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated-against minorities. . . . There is no doubt in my mind if the same disease had appeared among Americans of Norwegian descent or among tennis players rather than among gay males, the responses of the government and the medical community would have been different. (“Kaposi’s Sarcoma and Related Opportunistic Infections,” 1982)

Despite these early voices, the majority of the public and medical professionals remained unaware of and silent about the epidemic.

The state of the category schema

At this stage, anomalies appeared that aligned with the prototypical features but were dissonant with the proto-category’s moral meanings and causal theory. Despite this contradiction, attributing, dismissing, and silencing were used to maintain the initial coherent category schema among both medical professionals and the general public.

Consequences for resource allocation

A congressional report shows that no federal funding was allocated to the epidemic during this period (U.S. Congress, 1985).

Anomalies challenging the category schema

In mid-1982, CDC investigators received a report about two heterosexual hemophiliac patients who showed GRID-like symptoms. Hemophilia is a hereditary disorder in which blood does not clot, meaning that the patients rely on blood products to survive.

Vocal minority: Updating of the category schema through constructing a new causal theory

The general public may not readily associate hemophiliacs and gay men, but the infectious disease specialists at the CDC knew there was a common link between the two: hepatitis B. Within this core group of doctors, the news of the two hemophiliacs almost immediately evoked an alternative causal theory for the proto-category: that the disease, akin to hepatitis B, might be caused by a virus that spreads through sex and blood. Dr. Curran recounted,

Dr. Bruce Evatt, the head of CDC’s hematology group, announced at a task force meeting, “There is an old man with hemophilia from Florida who had Pneumocystis and who died.” I said, “What?” We were all thinking blood—it was going to be in the blood supply if it were caused by a virus like hepatitis B. . . . But not everybody wanted to believe this.

The virus hypothesis immediately emerged as the most promising causal theory among the small group of CDC doctors, catalyzing a sudden seismic shift in their understanding of the category. In particular, they recognized that this had implications for dismantling the moral boundary between the category and the mainstream population: anyone could contract the disease, similar to hepatitis B. This meant that the disease could potentially evolve into a widespread public health crisis affecting broader populations.

The small number of doctors who updated the category’s causal theory began feeling a greater urgency to raise their voices about the epidemic. Slowly, a vocal minority began to form, which, beyond the CDC, included a few primary care doctors, patient groups, and public figures. This vocal minority also began to criticize the widely circulated label GRID, which eventually faded out. Around September 1982, the CDC adopted the more neutral label AIDS, which then became the category’s official label. The creation of the label AIDS was an important step in solidifying the updated category schema among the vocal minority. The proto-category GRID fell out of use, giving way to the more institutionalized category AIDS.

Vocal minority: Updating of the category schema through neutralizing moral meanings

The updating of the category’s causal theory was facilitated by the vocal minority’s ability to neutralize the stigmatized moral meanings associated with AIDS. For instance, many members of the CDC task force on AIDS had prior experience dealing with infectious and sexually transmitted diseases among marginalized communities, which fostered non-judgmental attitudes among these members. For those without such prior experiences, they neutralized the preconceived moral meanings through direct engagement with patients. For example, Dr. Sherer described his experience:

In the very beginning the most important thing you could do was to just be there, and not be freaking out that a person has or is suspected of having HIV, or that they’re gay, or that they’re transsexual, and that they work at nights in a club, and so they’re on estrogens, and all this other stuff. I mean just to be in a non-judgmental setting.

In other words, when an alternative theory emerged, the doctors who had already been neutralizing the moral meanings of the epidemic were able to swiftly update the causal theory.

Silent majority: Persistence of the category schema through silencing

This drastic shift in the category schema among the vocal minority had little impact on the moral meanings associated with the category in the minds of the silent majority. The media’s silence continued, and much of the general public remained unaware of AIDS despite the fact that it had killed about 200 people and infected many more. The silence around the growing AIDS epidemic was also prominent among government officials and policymakers. For example, in October 1982, a journalist asked the first question about AIDS in a White House press briefing (Calonico, 2015). Deputy Press Secretary Larry Speakes answered the question in the following dialogue:

This exchange exemplifies how the category schema persisted through silencing. The strong moral meanings spurred most people within the silent majority to dismiss the epidemic.

As of late 1982, the caseload of AIDS patients was exponentially increasing, encompassing patients from diverse demographic groups. The updated virus-centered causal theory implied that the nation’s blood supply was at risk. In July 1982, the CDC organized a meeting with blood bankers, the FDA, the NIH, and gay communities to raise concerns about blood safety. However, this attempt was met with deep skepticism and silence from most of the invited stakeholders. Dr. Francis recalled that the blood banking industry and other government officials thought that “the CDC [was] fabricating a disease for a budget increase.” The meeting fizzled out, without success.

The state of the category schema

Two divergent yet internally coherent versions of the category schema emerged in a vocal minority and a silent majority. The vocal minority updated the schema by putting more weight on the updated virus-centered causal theory while neutralizing moral meanings and accepting diverse patients and symptoms, whereas the silent majority maintained the initial stigmatized moral meanings and the profound moral boundary between AIDS patients and mainstream society. The vocal minority’s voices were still extremely feeble.

Consequences for resource allocation

Federal funding requested or allocated to the epidemic in this period remained nonexistent (U.S. Congress, 1985). In the entire fiscal year 1982, the CDC had no budget specifically earmarked for AIDS, having to reallocate funds from its other activities to investigate the disease. This caused a serious constraint in its ability to fight the epidemic. For example, in 1983 Dr. Francis, at the CDC, wrote,

The inadequate funding to date has seriously restricted our work and has presumably deepened the invasion of this disease into the American population. . . . We are again understaffed and underfunded. . . . In this vast and wealthy country, there must be a way to get $10–20 million immediately for this disease.” (Quoted in Shilts, 1987: 232)

The silent majority’s category persistence obstructed diffusion of the updated understanding of the disease and severely hampered the allocation of resources.

Anomalies challenging the category schema

In December 1982, San Francisco’s public health authority identified an infant who had developed AIDS-like symptoms and died at the age of 20 months after receiving blood transfusions (Schmeck, 1982). The investigators traced all individuals linked to the baby’s blood transfusion and found one donor who turned out to have AIDS. The unequivocal link and the fact that the patient was a baby—who was assigned moral meanings of purity and to whom no one could attribute the causal theory of “gay lifestyle” or “drug use”—made the case a salient anomaly.

Vocal minority: Spread of the updated category schema

The case of the baby prompted more members of the scientific community to accept the updated causal theory of the category centered on a blood-transmitted virus (Check, 1983). In May 1983, two articles reporting AIDS in children were published in JAMA (Oleske et al., 1983; Rubinstein et al., 1983). Dr. Ammann stated, “when pediatric AIDS and AIDS in women came up, suddenly you could see how the basic scientists, the ‘mouse’ doctors, started listening.” In May 1983, a team of French scientists at the Pasteur Institute even isolated a new type of retrovirus from one AIDS patient, which would be later known as HIV (Barré-Sinoussi et al., 1983). ³ Although at the time it was disputed whether the virus they had isolated was, indeed, the disease’s causative agent (CDC, 1983), supporting evidence was accumulating (Check, 1983). Dr. Conant recalled,

So a point came somewhere in the spring of ’83 where, in my mind, the overwhelming majority [of the scientific community], if not 100 percent, would have said, “Yes, this is a blood-borne communicable disease.”

Thus, the updated causal theory of the category began to spread beyond the initial vocal minority. Moreover, the vocal minority recognized that the prototypical symptoms of AIDS, like Kaposi’s sarcoma, might represent only a fraction of the affected population. They realized that milder symptoms commonly seen in many gay men, such as swollen lymph nodes, weight loss, and fever, could also be related to AIDS (Ioachim, Lerner, and Tapper, 1983).

Vocal minority: Calls for change

In early 1983, it was reported that 27.3 percent of the first 1,000 AIDS patients were not homosexual men (Jaffe, Bregman, and Selik, 1983) and that the number of patients in all demographic groups was increasing at an alarming rate. ⁴ Concerned about the presence of a virus in the blood supply, some CDC members literally started to “yell and scream to institute core testing [blood screening]” in their meetings with other medical institutions, according to Dr. Conant and other witnesses. A few congressmen began to call out the pervasive silence and speak up for more funding. For example, Rep. Biaggi (1983), from New York, stated that “while [AIDS] has been associated with a limited segment of the population, it is now affecting people who may acquire it from blood transfusions. It’s affecting men and women.” Rep. AuCoin (1983), from Oregon, further argued,

Although new evidence shows [AIDS] is striking other segments of the population in growing numbers . . . there is an ignorance about AIDS which is being fueled by a larger social prejudice against the gay community. . . . The prejudice has silenced informed public discussion of the disease and prejudices prevented the formulation of a coordinated response by health professionals in the federal government.

In May 1983, two years after the beginning of the epidemic, the Secretary of Health and Human Services announced for the first time that “AIDS had become the No. 1 priority of the United States Public Health Service” (Pear, 1983). Overall, with the spread of the category’s updated causal theory, the voices of the vocal minority grew louder and more influential.

Silent majority: Persistence of the category schema through maintaining moral meanings

Despite the growing recognition that AIDS was a blood-borne disease, the majority continued to preserve the moral boundary between AIDS patients and mainstream society. For instance, Jerry Falwell (1985), a famous conservative reverend, commented that “AIDS [is] the homosexual disease despite attempts by the press to call it something else.” Dr. Francis succinctly summarized this: “Now the whole issue of ‘them and us’ stood out . . . they could do a ‘them’ thing very easily. ‘It is all junkies and queers. What do we care?’”

Even more troubling was the fact that a majority of medical professionals still adhered to the moral boundary between AIDS patients and the general public: one-third of doctors responded to a survey by opining that they would not provide care for AIDS patients (Gerbert et al., 1991). Drs. Volberding and Conant noted that AIDS patients received “very spotty care” and that medical institutions “were not very eager to be involved [with AIDS].” Dr. Sonnabend stated,

It was mistaken to think of scientists as being dispassionate, in the sense that I was well aware that many of my fellow scientists . . . were sex-phobic, homophobic . . . They were just human beings who were squeamish about sex . . . particularly squeamish about homosexual sex. Some were antipathetic, you know, hostile. But they were human beings . . . not to be trusted with, huh, being particularly concerned about the plight of gay men or drug addicts or Black people. I don’t know why they were just as bigoted as anybody else.

The moral meanings proved to be a profoundly dichotomous and polarizing dimension of the category schema, as exemplified by Dr. Schram’s remarks:

So many of the other [medical professionals] don’t give a d*** and are judgmental and antagonistic and disgraceful human beings when it comes to dealing with this epidemic. On the other hand, there have been some—and no small number any more—that have been superb. But there haven’t been a lot in between. It’s mostly real good or real bad.

Thus, a majority of medical professionals and broader audiences maintained the category’s imprinted moral meanings.

Silent majority: Persistence of the category schema through skepticism about the updated causal theory

The category schema also persisted as the silent majority remained skeptical of the virus-centered causal theory and its implication that anyone could contract AIDS. Articles attributing AIDS to “sperm, other microbes [of venereal diseases], drug abuse, and profound promiscuity” were still published in top medical journals (Sonnabend, Witkin, and Purtilo, 1983: 2371). In November 1983, six months after the isolation of a new virus by French scientists, some medical professionals still denied AIDS in women and children. Dr. Ammann said,

There was a tremendous resistance on everybody’s part to expand the disease beyond a very restrictive definition. . . . When we presented our cases of pediatric AIDS . . . in November 1983, my previous mentor, Bob Good, got up and said that he didn’t think that we were seeing AIDS in children . . . There was over-resistance. People just didn’t want AIDS to affect infants.

This skepticism intensified when economic vested interests were at stake. Blood banks, including nonprofit organizations such as the American Red Cross, intensely resisted the virus-centered causal theory. Dr. Volberding recalled, “There was a meeting in March of 1983 at NYU where [Joseph] Joe Bove, who was the director of the blood bank at Yale, said he wasn’t convinced that HIV could be transmitted in the blood.” According to Dr. Moss,

The blood banks f***ed it up disastrously. They didn’t get it; they didn’t react. . . . also it’s money. They don’t want to have to throw all the blood away or whatever . . . Very big powers were now involved, not just us little assistant professors.

In June 1983, the U.S. Secretary of Health and Human Services Margaret Heckler announced to the public, “I want to assure the American people that the blood supply is 100 percent safe.” Overall, reinforced by vested interests, the silent majority persisted in their category schema through skepticism of the updated causal theory, which cohered with their upheld moral boundaries.

Silent majority: Persistence of the category schema through silencing

In April 1984, three years into the epidemic, four articles published in Science demonstrated the presence of a new virus in individuals with AIDS, showcasing its mechanisms of transmission and its effects on the immune system (Gallo et al., 1984). ⁵ The scientific community in the United States widely recognized these articles as a confirmation of the virus causal theory. However, although this discovery was hailed as a remarkable scientific achievement, it had little impact on the level of media attention to AIDS and federal funding allocated to the epidemic (see Figure 3).

Within the media, the general public, policymakers, and the federal and state governments, the direness of AIDS and the suffering of its victims were downplayed and silenced. In New York, Governor Mario Cuomo vetoed a $5 million state-budget allocation for AIDS. In a hearing in 1983, the state health commissioner, David Axelrod, was quoted as saying, “Hypertension [is] a more important state health issue [than AIDS] in New York State” (Shilts, 1987: 340; Perrow and Guillén, 1990: 83). In December 1984, eight months after the virus theory was confirmed and the nationwide caseload approached 10,000, White House Press Secretary Larry Speakes answered a question about AIDS in a briefing by dismissively saying, “I haven’t heard him [the President] express concern, but I must confess I haven’t asked him,” as the audience laughed in the background (Calonico, 2015). According to Dr. Kotler,

There was no sense of that [urgency] at all . . . I was—I can’t say dumbstruck, but it was almost surreal because the reality on the wards did not fit at all the words and concepts that were given by anybody who was supervising anything, from the hospital to the city to the state to the federal government.

According to Dr. Francis, federal efforts were “leaderless and resources [were] lacking.” The federal government did not organize any coordinated action to address the spread of the disease.

Silent majority: Persistence of the category schema through coercion

A U.S. Congressional memorandum reported that at the top level of the administration, silence and inaction had often been subtly coerced (U.S. Congress, 1985). The heads of health agencies such as the CDC and NIH were coerced into toeing the line and remaining silent about the AIDS crisis, and budget requests were often cut even before reaching the president. Dr. Conant, who served as an expert witness in many congressional hearings on AIDS, summarized his experience with the government’s inaction:

Ronald Reagan and those nice people were not going to listen to me or anybody else. No matter what strategy you use—you could be reasonable, you could be hysterical, you could be confrontational, you could be diplomatic—you could do anything you wanted to do. It was not that they didn’t understand. They did not want to hear it. It’s that simple. They did not want to hear it.

It is noteworthy that this combination of skepticism, silencing, and coercion persisted long after the first proposal of the updated category schema, the virus hypothesis. For instance, even though members of the vocal minority had been advocating for blood screening using hepatitis B test results as a surrogate marker, both blood banks and the federal government failed to take action to implement such measures over a prolonged period between 1982 and 1985.

The state of the category schema

The silent majority’s adherence to imprinted moral meanings hindered updates to their category schema, as accepting a new causal theory would create dissonance with the persisting moral meanings. Although the vocal minority expanded as evidence accumulated that supported their updated theory, the silent majority still maintained the initial moral meanings and suppressed concerned voices through skepticism, silencing, and coercion.

Consequences for resource allocation

A Congressional report shows that no federal funding was requested and allocated for the year 1983 (U.S. Congress, 1985). The first budget appropriation for AIDS by Congress did not occur until 1984 (see Figure 3), and the majority of this budget allocation was earmarked for scientific research, whereas “the service needs of AIDS patients, and public education and prevention have not been considered funding priorities” (U.S. Congress, 1985). The executive branch often denied the need for funding these measures. Dr. Conant wrote a New York Times op-ed in 1985, deploring the inaction:

The Secretary of Health and Human Services . . . [said that the] Administration has declared AIDS its No. 1 health priority and that her department is fighting an all-out war on this new disease. . . . We had hoped to hear from Secretary Heckler where her armies are deployed, what her funds are for supplies and armaments, what her targets and strategies are. None of these matters were addressed. Furthermore, we would like to be reassured that the Commander in Chief, President Reagan, is even aware that the Public Health Service has declared this war.

In the midst of this persistence and inaction, AIDS caseloads shot up from 1,000 in 1983 to 12,000 in 1985 (United Press International, 1985). Note that this number represented gross underreporting because only the patients who were in their final stage of the infection and had definitive AIDS symptoms were counted. According to a later CDC report, more than 5,000 blood transfusion recipients and over 70 percent of the hemophiliac population were infected with HIV between 1981 and 1985 due to the lack of preventive measures (CDC, 1987). These numbers do not include an estimate of the human lives that might have been saved by developing effective education programs for gay communities and needle exchange programs for drug users. In the absence of treatment options, at this point in history the mortality rate of the disease was near 100 percent.

Anomalies puncturing the moral boundary

The grim news that AIDS caseloads had passed 10,000 had little impact on the level of media attention and funding. However, in July 1985, a second turning point in the emergence of the AIDS category, which would break the nationwide silence about the disease, arrived from an unexpected source. An American actor named Rock Hudson, one of the most popular movie stars of his time, was found to have been secretly treated at a Paris hospital, ostensibly for liver cancer. After collapsing in a hotel lobby, the actor admitted to the media that he had been diagnosed with AIDS. He became “the best-known American to acknowledge publicly that he has AIDS” (Altman, 1985).

Silent majority: Updating the category schema by breaking the silence

The public announcement of Hudson’s AIDS status punctured the silent majority’s moral boundary between “us and them.” Although Hudson’s disclosure fueled the perception that he was a closeted homosexual, his public image as an all-American, Republican Hollywood heartthrob still placed him on the opposite side of the moral boundary from that of other AIDS patients (Griffin, 2019). His announcement immediately received massive media attention, and he began to personify a medical condition that had been deeply marginalized and silenced. When his chartered jet from Paris landed at Los Angeles International Airport, “hundreds of newspeople and television cameras” gathered to see the country’s first celebrity AIDS patient, which broke the nationwide silence that had, until then, characterized the public’s reaction to the epidemic (Shilts, 1987).

Silent majority: Updating the category schema by morally reappraising the category

That summer and fall, media coverage of the AIDS epidemic skyrocketed (see Figure 3), creating a “glut of publicity” (Rice, 1985). Suddenly, both empathy and hysteria about AIDS swept across the country.

Hudson’s announcement coincided with a new school year, and the public’s attention quickly shifted to children with AIDS (Brier, 2006). Some parent groups vehemently opposed children with AIDS attending school, which, ironically, further punctured the moral boundary between the majority and AIDS patients (Rohter, 1985). Notably, a 15-year-old hemophiliac patient with AIDS named Ryan White (and his family) began a legal battle with his school in Indiana because widespread panic had prevented him from attending his classes (White and Cunningham, 1991). The battle catapulted White into the national spotlight, making him a poster child of AIDS in the national media. As children—a societal group imbued with moral meanings of purity, in opposition to the stigmatized moral meanings of AIDS—became the public face of the epidemic, the moral meanings associated with the disease began to shift. For example, Dr. Selwyn recalled, “reading through a medical chart . . . [we] use the term ‘unfortunate,’ you’d read, ‘this unfortunate 34-year-old woman,’ or ‘unfortunate 65-year-old blood transfusion recipient’ . . . the notion of innocent victims meaning non-gay men, non-drug users.” The moral boundary between the majority and AIDS patients became porous as the images portraying victims as individuals with human faces flooded in.

During this time, a Hollywood fundraising event was held for AIDS victims, “a cause that was far from popular a few months ago,” according to a New York Times article depicting the event (Harmetz, 1985). Famous socialites and celebrities suddenly “begged for an end to the stigma attached to people who have AIDS” and claimed that “it was time to make AIDS everyone’s business.” In this charity event, President Reagan—the head of the government who had remained silent about the crisis—stated through a telegram that “[the] Administration had made halting the spread of AIDS a top priority.” This, once again, signified the puncture of the moral boundary between the mainstream and the epidemic.

The state of the category schema

The puncturing of the moral boundary prompted the silent majority to update their moral meanings, leading to the boundary’s neutralization. Breaking silence enabled them to adopt the updated coherent category that reflected diluted stigma, diverse symptoms and patients, the virus-centered causal theory, and its public health implications. The public began to reappraise the category as a tragedy of human suffering and a dire public health issue.

Consequences for resource allocation

As the category’s moral meanings were updated, resources for AIDS poured in. Dr. Friedland described the dynamics succinctly:

If you look historically at the sort of blips in increase in funding, heterosexual transmission, “Oh, my God, we can get it!” Right? Boom, big increase in funding. Children, “Oh, the poor innocent victims!” Boom, big increase in funding.

Just one month after the news that Rock Hudson had been diagnosed with AIDS and the ensuing upsurge of public discourse concerning the crisis, the House Appropriations subcommittee voted “to double the budget for research on AIDS, and to increase funds for education and public health programs” (The New York Times, 1985). As shown in Figure 3, the largest increase in funding for AIDS happened between 1985 and 1986, coinciding with the sharp rise in media attention. Furthermore, in 1990, shortly after Ryan White’s death, Congress passed legislation named after him, the “Ryan White CARE Act,” which remains the largest federally funded program for AIDS patients passed to date.

Epilogue: Persistence of the moral meanings

The puncturing of the moral meanings of AIDS “irrevocably” updated the silent majority’s perception of the category AIDS (Shilts, 1987: 480; Brodie et al., 2004). AIDS slowly became a regular item in Congress’s budget and agenda (Summers and Kates, 2004). Nonetheless, until quite recently, AIDS remained a stigmatized medical condition, not just for patients but also for medical professionals who provided care for them (Snyder, Omoto, and Crain, 1999). As AIDS became a pandemic in the Global South during the 1990s, the silence and misinformation that had plagued the public reaction to AIDS in the U.S. would also devastate the public health of developing countries (Konotey-Ahulu, 1987).