This article is part of “AIDS Is 40. But It Really Isn’t,” a series of personal stories, news reports, and interviews on TheBody that pushes back against commonly held narratives regarding the start of the U.S. HIV/AIDS epidemic.
Today, we understand the disproportionate impact of HIV/AIDS on Black Americans—but that wasn’t the case 40 years ago. During the first decade of the HIV/AIDS epidemic, the discourse, from epidemiological research to media reports, centered overwhelmingly on cisgender white gay men.
Kevin Moseby, Ph.D., an assistant teaching professor of sociology at Drexel University, is challenging that narrative in his research and a recent article that brings into focus the “regime of Black American exclusion” during early HIV/AIDS surveillance and prevention efforts—and later, starting in the 1990s, a “regime of Black American inclusion.” The article is an analysis of epidemiological results and editorial commentary published from 1981 to 1994 in the U.S. Centers for Disease Control and Prevention’s (CDC) Morbidity and Mortality Weekly Reports (MMWR).
In conversation with Terri Wilder, Moseby spoke about his analysis of those early CDC reports and how the politics of biomedicine and public health are intimately intertwined.
Written Out of HIV History
Terri Wilder: Thanks for talking with me today. On June 4, Dr. Oni Blackstock, who is a physician, HIV expert, and health equity consultant, tweeted—and I’m going to quote here—“Tomorrow, June 5, marks 40 years since the CDC’s first AIDS case reports of five ‘homosexual’ men who presented with a rare pneumonia. Their race/ethnicity was not specified.”
She then goes on to recognize the 2017 article you published in Sociology of Health & Illness, which was titled, “Two Regimes of HIV/AIDS: The MMWR and the socio-political construction of HIV/AIDS as a ‘black disease,’” in which you stated that no one has attempted to account for the important historical reversal whereby Black Americans went from under-recognized to central subjects in the HIV/AIDS prevention and disease discourse.
Why did you decide to publish this article? And why is it important this year, 2021—a year in which folks are recognizing 40 years since the June 5, 1981 MMWR report?
Kevin Moseby: First off, I started doing this research that led to the article because just living in California, I remember just that I was reading about the fact that Black Americans at the time were being written about as being not that active in HIV/AIDS activism.
What was often assumed and hypothesized was the notion that Black Americans were absent due to rampant homophobia and what the political scientists kept calling stigmatory marginalization, meaning that Black institutions were hesitant, like the Church or Congressional Black Caucus, institutions, and NAACP, were hesitant to take up the issue of HIV/AIDS because it was singularly the homosexuals or people who did intravenous drug—these Black community members that are marginalized within the marginalized Black American population.
At the same time, on the other hand, they also argued that Black Americans were invisible to the CDC. In the late 1990s and early 2000s, just walking around the streets of Oakland or San Francisco or San Diego, I would see public health campaigns with images of Black Americans. And I was doing research and talking to members of the community and seeing community organizations developed by Black Americans that were talking about HIV/AIDS. And I thought, “Well, it’s no longer true that Black Americans are invisible to the CDC.” Also, I kept hearing this disproportionate claim—that Black Americans are disproportionately affected by HIV/AIDS. We carry the most burden of the disease.
I thought, well, just based on what I do and being a student of history, I questioned why. I realized that in the scholarship and the research, no one had told the story about how this invisibility of Black Americans came to be—when all of the research that I read on HIV/AIDS centered on gay men and generally did not note that they were mostly white Americans. I thought, we have this discourse and research that’s both popularly and academically assumed that HIV/AIDS in the 1980s was seen and understood as a disease about presumably gay men, specifically.
I was living in the times where, just as today, we have commercials on TV that present Black Americans talking about HIV/AIDS, so, Black Americans are seeing themselves in these depictions. But in the first decade of HIV/AIDS, if you go back and look at the public health visual materials, you’ll see that Black Americans are consistently absent.
Wilder: You’ve done this really in-depth analysis, particularly looking at the CDC’s MMWR reports. You’ve already mentioned that the first MMWR failed to mention race. Can you take us through each MMWR that you looked at and show us how, across time, it began to introduce race but still was very weak in its recognition of the role that race played in HIV?
Moseby: Yes. The first report, on June 5, 1981, it was simply reported that there were five men who came down with the disease of pneumonia. The report emphasized that all five men were homosexual, and it did hypothesize that some aspect of them being homosexual was relevant. It said that this could be a homosexual disease, or a disease acquired through sexual contact.
There is no mention of anything else like demographic information about these men, other than that this is Los Angeles, so they’re in California, and they are all homosexuals. Later there’s a second report, in July 1981, about HIV/AIDS. In this article, there are more cases. And those cases are now in two states: New York and California. This time they’re talking about the skin cancer being seen—and the article follows the first in just highlighting the fact that these men all were homosexuals. And thus, sexuality was presumably the most prominent characteristic that was important. And so, the CDC started to act. Doctors and public health institutions, too, were on the lookout for these sicknesses among homosexual men.
From the present day, I think that’s quite curious. Because now we live in a world where we’re more aware of racial health disparities and the significance that race has in who is sick, who lives the most sick life, and who lives longer or not.
I know when COVID started happening, I was really frustrated because I thought here, again, is a moment of this public health crisis, a disease that’s new, and at the start nobody’s talking about who these people are who are dying. We just get this number of cases, this number of people who have died. But there was very little talk at the front of what are the social demographics of these people? I assumed at that moment that, before anybody started asking anything breaking it down, that Black and Latinos would be the most sick and the ones most dying with COVID. And yet that wasn’t being highlighted.
So, even though we are much more aware in moments of intense crisis, it takes a while for us to get to the issue. It’s happening faster, thankfully, with COVID, but here in 1981, there was no infrastructure that indicated that we need to care about the race of these people.
The reason why it was missing was that most of the people who were being seen were white men, and AIDS was taken up by the largely white gay community. Whiteness tended to be just assumed and not talked about.
Race Was Not Seen or Talked About
Wilder: You wrote that Dr. Michael Gottlieb was the doctor credited with discovering the first case of HIV, and that they said it was “no big deal” in 1981 that “the first five [AIDS] patients were white, and the next two were Black.” That is a problematic statement.
Can you say more about this in terms of how privilege, particularly racial privilege, contributes to having access to services, particularly health care—and how that then contributed to who and what was seen in a clinic space in terms of disease presentation, and then ultimately would contribute to what was reported?
Moseby: The main point of our article in some ways is about what I would term white supremacy. I wanted to use that phrase in the article, but I was encouraged not to by the editors when I was publishing in this journal. I must say, it upset me that I couldn’t use this language. The editors told me that if I wanted folks to read my argument I shouldn’t use such a loaded word.
But, hey, if I were to publish today, I would fight that.
Wilder: That’s a problematic piece of feedback, particularly for the thesis of your article.
Moseby: And so, I talked about, as you say, the privilege. When I talk about white supremacy, it’s about policy, people making decisions, setting up ways of acting that makes it so that white people are supreme. They’re the ones we first think about. They’re the ones that first matter. This is what happens here because the institutions that these first cases were seen in are, we could say, white supremacist institutions. They’re university medical centers. They’re in the hospitals.
And think about who has access to health care. Who has insurance in 1981? Who is being seen by doctors? And being seen by doctors, meaning, their illness matters. It’s largely white people.
In 1981, indeed, these five patients that Michael Gottlieb talked about—because he was the doctor at UCLA Medical Center of these five patients, he reported them to the CDC. Because these are white doctors, the fact that they were seeing these patients is going to preclude them from seeing that, “Oh, well, maybe the folks we’re not seeing in our office also matter and also would be dealing with the disease.”
We now know, of course, that we say that we discovered AIDS in the early 1980s, but we know that people in the 1970s and 1960s were dying from HIV/AIDS, but it was happening among people who didn’t have the privileges that white, well-educated, well-employed men had, even though they were in a marginalized community because they were gay.
Wilder: I want to talk about the Oct. 24, 1986 MMWR report, because that’s where we finally see an acknowledgment of the disproportionate impact on Black Americans and also Hispanic Americans. What’s the significance of that particular report coming out at that time, and did it help in finally putting this on people’s radar?
Moseby: So, let me go back to the fall of 1983. That’s when the CDC first did a race classification of people dying of AIDS, or who has it. In that, you see that it shows—well, actually, the first report just says there are 25 cases, one of them Black, the others were white. But that’s the first time the racial classification scheme was used. Then there was a report in 1984 that updates the classification because we have more cases. And in that, it says the cases of Black Americans was 26%. But in that 1984 report there is no other talk about this. There’s no notion that 26% is a disproportionate percentage of Black Americans. At that point, Black Americans were overburdened with the disease, but they don’t talk about it.
They, as they argue in the paper, go on to talk about the four risk positions. They reclassified the data talking about the four risk groups that they were propagating at the time. And race, again, was not seen. It’s not talked about in the way that it is later in the epidemic.
Three years after the first racial classification—and the knowledge that there is, in the epidemiological data, that Black Americans are disproportionately affected, comes from the 1986 report. That’s when the CDC actually first makes the claim and expresses this fact that, again, was in the data at least three years previously. Although now there’s evidence that they spun their data from the get-go to exclude that Black Americans were disproportionately affected. It’s not until 1986 that that fact was expressed in the pages of the MMWR. That occurs a year after this task force that DHHS [Department of Health and Human Services] Secretary Margaret Heckler convened to look at Black and minority health because she noticed that the United States had this incredible impressive story when it came to health. Like, over the years, in 1985, we made impressive gains.
She noticed that Black Americans and other racial minorities are outliers. And so, she convened the task force to look at the health of Blacks and other minorities.
For me, the most fascinating and important finding was, they basically came back and said, “Well, we don’t really know much about Black American or Black minority health, because we never really asked the questions. Our orders at DHHS are not actually looking at the data or asking these questions that relate to Black American health.”
And so basically all the recommendations are like, “We need to reorganize the way we work, to ask this question of our data so we can learn about Black American health. We need to put resources, money towards developing knowledge,” basically.
My hypothesis is that this 1985 task force of DHHS (which, of course, the CDC is a part of DHHS)—and they say, “We need to pay attention to Black American health in this data”—is they go back to the reports and they then, in a way, reclassify it, because of the way they highlight the fact that 26% is disproportionate; it’s never emphasized. And Latinos and Hispanics are also disproportionate, accounting for 13% of all cases from 1981 to 1985.
I hypothesize that it’s due to the task force.
Deaths That Could Have Been Prevented
Wilder: One of the things that was interesting to me about the task force report was that it was a 245-page report that had eight recommendations. You mention in your publication that it only mentioned HIV/AIDS one time, which is fascinating to me—that in the middle of this major viral pandemic, they only mention HIV one time.
Moseby: Yes. That was shocking to me, too. But it is indicative of the fact that no one was talking about Black people at this moment. What the report comes up with is that Black health wasn’t a question that mattered.
I actually don’t know the circumstances that led Secretary Heckler to commission the report. Part of the fact is that, because HIV/AIDS started in 1981, when I was doing my dissertation research starting in the late 2000s—or zero-zeros, as I like to call it—there weren’t histories written about HIV/AIDS. There were few of them. And none of them, or very few of them—well, actually none of them—were about race and Black Americans.
That’s now changed. There are young scholars, of which I am a part, who are now talking about HIV in Black folks and other people of color. There are actually a couple of books that are now out. That is sort of recovering this history, centering Black Americans and race within telling the story of this epidemic and activism against it.
Of course, Heckler is an appointee of Reagan, who interestingly never mentioned HIV; it took him years to mention HIV/AIDS publicly.
Again it’s about who matters within these institutions, because these institutions are set up by the State. What is Black Americans’ position in relation to the State?
I learned this from my research and from the Black American activists I interviewed: For Black Americans, only the State can change our positions. But the State and the government are the very ones, the institutions that placed us in this position of, historically, being marginalized. So, it’s a question of how this is even going to work, because it’s the same institution that historically rendered us as not mattering and rendered us to dying early of these diseases and living sick lives. How do we think that they can see us and think that we matter? That can’t automatically happen. History tells us that people have to fight, and social movement is needed for institutions to even see us.
Wilder: During this period at the CDC, was there Black leadership working on HIV in the early years of the epidemic? The person who comes to mind in terms of leadership is Jim Curran, who is a white man. And then, I can’t help but think about the deaths of Black Americans that could have been prevented had this information been recognized and made available, not dismissed, earlier.
Moseby: Yes. I agree. And from what I know, and part of what I looked at, what I refer to as the regime of Black American inclusion within the prevention field—this is the time that Black Americans become central objects and subjects within the prevention field.
And so, starting in the mid- to late 1990s is when we start to see a good number of Black Americans actually becoming more integrated within the CDC. I did a year of field work within Atlanta, because Atlanta is a famous, important city—a Black American city. The CDC has located their headquarters there, and of course, Atlanta is in the South, where the epidemic is centered among Black Americans. I thought it would be an interesting place to do fieldwork.
At that time, Dr. Kevin Simpson, a Black man, was the director of the infectious-disease grant that HIV/AIDS prevention is under. It was interesting to me that every person I interviewed—leaders in the administration of the CDC in HIV/AIDS—were Black Americans. They all noted that at the time, in the ’80s, they were not there. Our community wasn’t represented. And that they themselves went into this work because they saw how our communities were being ignored, or that these misunderstandings or this misrecognition of Black Americans led these public health institutions to ignore us. Part of their activism and intervention was to enter into the institution.
Something I hope scholars are able to do someday is track the administration in some systematic way. I didn’t have access to that data. I think something that’s notable to me is that you see a lot of people of color now who work in the CDC. But my guess is that that hasn’t always been—because of course the CDC is the institution, when it was known as the [U.S.] Public Health Service, that conducted the Tuskegee Syphilis Experiment.
And I know from that, people weren’t speaking up inside the CDC until Black Americans started to become a part of it in the ’70s. And so, Black Americans’ inclusion in these institutions is fairly new.
And also, the percentage of Black Americans who are doctors today is the same as it was in the early ’70s and ’80s—1% or 2%. These, again, are white supremacist institutions, where white Americans are privileged.
One reason the gay community can take up and be so important in the HIV infection field is that they had institution specialists from the 1970s gay rights movement. So, in a sense, their organization sort of transitioned from the ’70s to ’80s to fight HIV/AIDS.
If we look at that, we’ll see that Black Americans are often actively and explicitly and inexplicitly excluded from those domains, too. You have those institutions not really representing HIV/AIDS in the 1980s as something that mattered to Black people.
A Cycle of False Narratives
Wilder: As I’m listening to you talk about this long, long history of white supremacy, it’s so clear how all of these decisions or unconscious biases that contributed to how people look at the AIDS epidemic—and not only is in the reporting, it’s who lives, who dies, how it’s documented in articles, books, and movies—and that then trickles out into the public. Then they believe what is essentially a social construction of who has HIV and AIDS and create this false narrative that then begins to be told as the truth.
Moseby: Indeed. And because of what we know, it conditions and makes our understanding of who matters and who doesn’t. Even now, I think if we look back into the early ’80s, part of what made it so hard to see and think of Black people also dying from the disease is that you had these white men in the prime of their life dying. That’s seen as such a problem. Even though they’re also marginalized—these men are part of a sexual minority—but in the context, that’s what makes it so attractive is that it’s these white male bodies in the prime of their lives that are dying.
W.E.B. Du Bois wrote in The Philadelphia Negro—and he is the first person to talk about the social construction of disease and the fact that Black Americans were dying, not because of their bad biology or that they were more like animals not fit for the modern world—that it’s due to their social position and the political, and cultural, structural conditioning of Black Americans.
He showed that the Black Americans in Philadelphia who had good jobs before then lived longer and lived more healthy lives than those who struggled for employment and didn’t have adequate housing. He showed that it was our position within the social structure that made us sick.
So, Black Americans almost name a disease. And Black Americans are the ones suffering from it, even as they would be the last to be diagnosed with it.
Again, it exemplifies how white Americans are held in this supreme, privileged position. We can say the same thing about Native Americans’ health, and how we barely ever talk about it, hear about it, see it—and their lives and opportunities were excluded from the discourse.
With the COVID example, it still takes a minute or a beat, and it still takes for people to advocate that we need to talk about race. And it’s because we do live in a colorblind era, where—this might be changing post-2020—it’s still this notion that it’s almost impolite to talk about race. When I say, “Look, whiteness is a race,” I’m also saying in early moments in 1981 that people weren’t talking about whiteness. But it’s dangerous not to do so.
We can’t take a colorblind approach. It’s very complex. Because again, the whole sexuality thing—and the media just was fascinated with homosexuality. And thus, they created this whole notion that this was a gay disease.
The Need for More Than a Pill
Wilder: Even if it wasn’t documented, for most Americans when they heard news reports about gay men, it was always, in their head, a white gay man.
Moseby: Yes. That’s what I think, as well. In my book I’m working on, I talk about how even though Black people are included in this prevention field, that does not mean that our struggle is over or that—because, of course, the number has only grown since the ’80s. And that, obviously we’re included in a guild that we had very little to do with constructing. Because again we lack the power and resources to intervene or prompt the radical reconstruction of these institutions that will lead to us combatting this disease.
Black Americans who are working in the field often say that this knowledge that Black Americans are over-represented in HIV/AIDS, or in the late 1990s and early 2000s, President Clinton declares that HIV/AIDS is an epidemic in Black America. They say just as people started to talk about this, and we started to matter in this field, people stopped caring. And the attention and the money sort of went towards AIDS in Africa.
They’re fighting to combat the disease in the community, and they all are, in a sense, in competition with the other community centers that are largely white. Because they’ve been there since the ’80s, they’re more resourced and seen. Now that the CDC, as they do, put up a call for research or money to the organization, these white institutions are also applying for this money. And so, part of our work has been that even though Black Americans are included in this, there is a system where they’re not really intended to belong.
That is not where we’re at. The whole focus now on what I and others refer to as “pharmaceuticalization of prevention”—a lot of attention is based on the fact that we can take a pill and that will stop the epidemic.
But of course, we get back to the issue of who has access to health care or medicine. Who are in particular positions where they can take the medication as needed? Who can pay for it? In the South, most states didn’t expand Medicaid through Obamacare, and they have larger populations of Black Americans, and it’s where HIV/AIDS disease is centered in this country.
And so, PrEP is not the answer. Black Americans know, and they say, “What we really need is jobs. We need health care, which is still not a fundamental right of U.S. citizenship. We don’t have access to it.” PrEP is something we need. But we need a whole other option. Other interventions.
It can’t just be medicine, because that’s a limiting individualizing thing that we’re all quick to go to. Even now, looking at COVID and the vaccine. Great thing, but I think it only highlights how we need to intervene on the infrastructure and to make sure that access to health is more equitable in the U.S.
If we actually listen to Black Americans and organizations and resource them, these things could change.
I think what it will take for Black Americans to stop disproportionately dying or dying earlier is more structural intervention. At the time, I was doing my research from 2009 through 2012, everybody was saying, “We need structural intervention.”
But since 2012, when I finished my Ph.D., there was this transition to talk about PrEP. Before PrEP, we actually had the CDC developing prevention and interventions that really considered the Black American cultural productions. That’s still happening, but I think when you have Big Pharma in the picture—and society being into technological development to make our lives better—then our knowledge and what we think in our push for more social, structural interventions are downgraded. They’re thrown to the wayside. Because now we have a pill in society to solve the problem. It’s going to take more than that.
Wilder: I want to thank you so much for talking with me, and I really want to thank Dr. Oni Blackstock for tweeting about your article. It’s a very important article that we should all be reading, particularly right now, as people are recognizing the 40th year since the 1981 MMWR came out.
Moseby: I really appreciate it. And thank you for letting me know. I’m not actually on Twitter, so it was nice to learn that my article is being tweeted about.