African Kaposi’s Sarcoma in the Light of Global AIDS: Antiblackness and Viral Visibility (2014 draft)

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African Kaposi’s Sarcoma in the Light of Global AIDS: Antiblackness and Viral

Visibility

Pawan Singh, PhD Candidate, Communication, UCSD

Lisa Cartwright, Professor, Visual Arts, Communication, and Science Studies, UCSD

Cristina Visperas, PhD Student, Communication and Science Studies, UCSD

July 29, 2014

Forthcoming in Journal of Bioethical Inquiry

Draft: not for quotation or dissemination

Abstract

Drawing on the theoretical frameworks of antiblackness and intersectionality and the concept of viral visibility, this essay attends to the considerable archive of research about endemic Kaposi’s sarcoma (KS) in sub-Saharan Africa accrued during the mid-20th century. This body of data was inexplicably overlooked in western research into KS during the first decade of the AIDS epidemic, during which period European and Mediterranean KS cases were most often cited as precedents despite the volume of African data available. This paper returns to the research on KS conducted in Africa during the colonial and postcolonial period to consider visibility, racial erasure and discourses of global epidemiology, suggesting that the dynamics of medical research on HIV/AIDS have proceeded according to a tacit paradigm of antiblackness manifest in multiple exclusions of Africa from global health agendas—most recently the exclusion of the region from anti-retroviral (ARV) drug therapy during the first decades of the treatment’s availability. During that decade KS all but disappeared among people with access to it while KS became even more prevalent in sub-Saharan Africa, escalating along with HIV.

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Keywords: Kaposi’s sarcoma, HIV, Africa, viral visibility, viral intersectionality,

antiblackness

In a 2011 article about the resurgence of both Kaposi sarcoma (KS) and

Pneumocystis pneumonia (PCP) among men who have sex with men (MSM), infectious

disease specialist Kenneth Mayer and epidemiologist Matthew Mimiaga explain the

resurgence of KS in the US in a narrative that foregrounds the role of visibility and

stigma as important epidemiological factors. Invoking the notion of the “past as

prologue”, Mayer and Mimiaga propose that as antiretroviral treatments “decreased the

visual stigmata of the epidemic and transformed HIV into a chronic, serious, but

manageable infection, the tangible reminders of AIDS disappeared and increasing risk

behavior among MSM reemerged” (Mayer and Mimiaga 2011). In their interpretation,

KS lesions acted as a visible deterrent to risk behavior. With the demise of KS, the

stigmata disappeared. No visibility, no fear—and hence the past as prologue, with unsafe

sex the default mode to which MSM, according to this theory, have returned. Mayer and

Mimiaga further characterize the resurgence of KS, with its lesions a “tangible reminder,”

in light of “therapeutic optimism,” a concept introduced to AIDS psychology in 1992 to

describe sanguinity among gay men managing their HIV (Taylor et al. 1992),1 informing

an international rubric about the potential for increased risk behavior amidst optimism

spurred by the introduction of antiretroviral (ARV) therapy. In this “optimistic” climate,

in which KS, in its role as sign of HIV diminished among populations with access to

1 For a critique of therapeutic optimism in the west and in the context of promoting pre-exposure prophylaxis in Africa see Patton and Kim 2013.

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ARV therapy, the re-emergence of KS lesions is coded as a traumatic reappearance, a

specter that awakens historical memory of the early years of the US epidemic and

portends of future possibilities.

The interpretation of KS in terms of visibility has historical salience. Prior to the

introduction of antiretroviral drug therapy in 1996, KS, dubbed “the gay cancer” in the

early 1980s, was (with PCP) one of the two forms of disease through which AIDS

initially became visible in the west (Altman 1981, Preda 2005, 46). Classified in the

1980s as an AIDS-defining illness, KS was both prevalent and characterized by its

dermal appearance, conferring public visibility to what would come to be called AIDS.

Just as the emaciated body has long signified later stages of HIV/AIDS, the body with KS

lesions has served as an iconic signifier of the onset of HIV infection, with KS as a

signature conditioni of AIDS. During the first decade of the epidemic, KS was described

in the medical and lay literature in contradictory ways—as rare in some populations and

endemic in others, benign in some of its forms and aggressive in others, as slow growing

and rapidly progressing, and as a disease of both the epidermis and the internal organs.

KS was gradually cast as a cancer multiple,2 receding in its iconicity as a primary

condition and signifier of AIDS among people with access to antiretroviral (ARV)

therapy, which curtailed infection and progression to KS in people exposed to KSHV (or

2 We do not have space to describe in detail the complex, changing and contradictory classification of KS after 1981. On this matter, see the thorough analysis provided in Preda 2005.

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HHV-8), the herpes virus which had been identified in 1994.3 Given that KS all but

dropped out of sight after 1996 among communities with access to ARV therapy, the

reference point for its western resurgence has been this historic iconicity of the

epidemic’s darker days.

KS visibility also has global historical salience. KS was endemic among black subjects in

sub-Saharan Africa for decades prior to the global AIDS epidemic, emerging as an

aggressive epidemic in that region, along with AIDS, in the very years that HIV and, with

it, co-infections such as KSHV were mutually stabilized in the west by ARV drug

treatment. During the decade that KS receded in the west, the cancer became even more

prevalent in sub-Saharan Africa, where it escalated along with HIV. In the literature on

AIDS during the first few years of the western epidemic the topic of black African KS

was often minimized in favor of “Mediterranean” and “European” etiologies and

precedents for the variant of KS seen among western homosexual men. In sub-Saharan

Africa, where until the 2010s the prohibitively expensive ARV drugs reached less than a

quarter of the people who needed them, the incidence of KS increased in tandem with the

AIDS epidemic (Sasco et al. 2010).

This article returns to the literature on KS in Africa prior to the years of the AIDS

epidemic in order to grapple with the question of KS and the historical and geographic

conditions of its appearance and recognition.ii.In the case of KS, the oncovirus that is the

3 On the issue of the appearance of KS in gay men in the 1980s US context see Altman 1981 and Fannin 1982. On KSHV research and discovery see Chang et al. 1994 and Altman 1994.

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necessary condition for the neoplasm remained invisible for a decade of KS’s escalation

as, and under, the sign of HIV. Moreover, the cancer itself was classified into population-

specific types, some of which garnered more attention than others. The division of KS

into subtypes created a legacy of intersecting and contradictory classificatory schemas

(Palmer and Reeder 2001). In 2014, one still finds KS divided variously according to

region, race, historical period, and aggressiveness and location of tumors. 4 One effect of

this inconsistent pattern of sub-classifications has been to put the history and present

status of black African KS in the shadows of the medical literature not only during the

decade of the supposed disappearance of active KS in the US, but also during the first

decade of research into the KS-HIV nexus.. The relative absence of extensive discussion

about African KS in the western AIDS literature during the first years of the epidemic is

especially striking given that the historical literature on African KS is in fact readily

visible replete with case histories and a surprising range of images, including those

documenting radiotherapy treatment of tumors. At the same time that this literature was

overlooked, Africa was egregiously misrepresented in accounts of the global AIDS crisis.

The continent came to serve as an iconic geographic origin point in epidemiological

narratives that indicted marginal subjects such as blacks gay men, sex workers, colonial

subjects and women in tracing what Cindy Patton has called an epidemiological “trail of

blame” (Patton 2002, 113).

In undertaking this temporal step back into the pre-HIV/AIDS life of KS in sub-Saharan

Africa, we consider the elision of this rich body of medical knowledge as a primary

4 One system for classifying KS identifies subtypes as classic; endemic or African; immunosuppression- or transplant-associated; and epidemic or AIDS-associated (Wahman et al. 1991, Antman & Chang 2000, Tschachler 2011).

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bioethical heuristic, one that situates Africa at the critical juncture of race, postcoloniality

and sexuality. We employ the phrase “viral intersectionality” (Cartwright 2013,

Cartwright 2014) building upon Kimberlé Crenshaw’s classic use of the concept to

address identity politics. As Lisa Cartwright notes, for Crenshaw “the problem with

identity politics is not that by focusing on identity we fail to transcend differences.

Rather, in focusing on identity, we fail to see differences within a given group”

(Crenshaw 1993, 1242; Cartwright 2014). We adopt the concept of intersectionality to

illuminate not only the differences and overlaps among different viruses such as HIV and

KSHV, but also to think through intra-viral differences. This approach allows us to

account for the classification of KS according to its supposed multiple types

(Mediterranean, African)—a system later questioned when the KS onco-virus was

revealed to be a common factor among all sub-classifications of the cancer. From a

bioethical perspective, such a discussion may suggest a reparative accounting of Africa’s

spatial and temporal complexity and diversity in global health discourse. Our interest

here is, rather, to reveal the extent to which the etiology of KS is shot through with

classification schemas of race, geography, and sexuality.

Prompted by the irony that KS could be identified in the US as resurgent among people

with HIV when in sub-Saharan Africa the cancer had in fact escalated to epidemic

proportions along with HIV, this paper initiates a set of discussions about KS visibility,

and the matter of seeing this condition which, after all, quite often manifests in highly

visible ways, as dermatological expressions, commonly appearing first in the form of

nodules on the skin. Rather than making a case for rendering visible the subjugated

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history of sub-Saharan KS in the western context, we consider KS visibility as a

complicated matter entwined with the issue of unseeing blackness in western medical

knowledge. Our agenda is not to lament the western failure this body of knowledge on

KS for understanding western AIDS (that research was in fact mined for the

identification of KSHV). Nor is our aim to confer visibility to a subjugated history, a

gesture that would mimic the problematic of black bodies serving as research subjects for

western medical knowledge. Following post-Foucaultian accounts of race and medicine,

we regard black African KS as a structuring and resistant negativity that is composed

precisely of scientific research and knowledge expression, conducted through imaging

practices that instantiated precisely a logic of negativity. We propose that the black

African body of research about KS, including treatment regimens, produced in and

around Kampala during the 1960s, constitutes a modernist medical knowledge base

centered in practices of looking that entailed a radical disavowal of a politics of the skin

as signifier, as understood in the Western experience of HIV. Frantz Fanon’s term

“epidermalization” - an internalization of ontological inferiority of the self by the black

body in relation to the white – delivers the postcolonial predicament of the KS-stricken

African absence in relation to the KS-HIV nexus of white skin (Fanon 1986, 4). The pre-

1981 African medical literature on KS also embraced, we propose, a logic of structuring

absence to classify and treat KS, a critical body of theory about visibility, pathology and

a disruptive somatic negativity organized around, but also critically refuting, a logic of

disease visibility.5

5 On disruptive negativity see Michelle Boulous Walker’s interpretation of Julia Kristeva’s use of Sigmund Freud’s concept of negation. Walker emphasizes that negation, understood as a semiotic process, is linked to expulsion and rejection, and is always embodied. For Kristeva, Walker explains, “negativity (or rejection) is a somatic process which is both heterogenous to and constitutive of the symbolic.” The

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Hardly circumstances of disappearance, these conditions suggest instead an optics with

respect to KS visibility that is more complex than invisibility and resurgence. Johanna

Taylor Crane has described the African experience of ARV therapy during the first

decade of the drugs’ western dissemination in terms of an optical politics of exclusion,

with Africans “looking from the outside in” as treatment rendered HIV and KSHV

chronic conditions in the West while in Africa HIV, and with it KS and TB, proliferated.

When copycat generic versions became available, some global public health officials

counseled against distribution, raising the specter of a drug-resistant variant of HIV

arising in a region and a culture viewed as not conducive to drug regimen compliance

(Crane 2013, 29).6 This fear of noncompliance is reminiscent of the postcolony

conditions described by Mbembe in which “the slave trade and colonialism echoed one

another with the lingering doubt of the very possibility of self-government, and with the

risk, which has never disappeared, of the continent and Africans being again consigned

for a long time to a degrading condition” (Mbembe 2001, 13). The decade-long failure to

treat, here viewed as just one instance in the long dureé of antiblackness, manifested in a

divided epidemic with escalating uncontrolled infection in Africa during the very years

that HIV, and with it KSHV, became chronic and manageable in the west.

For thirty years prior to independence in 1962, Uganda was a hub of British colonial

medical research into KS, as a part of the British Empire Cancer Campaign (Palmer and

semiotic inhabits language, and is always articulated through the body. (Walker 2002, 106). See also Edelman 2004 on disruptive queer negativity. 6 Mosam et al. state: “the incidence of Kaposi's sarcoma has increased exponentially with the HIV/AIDS pandemic with a shift in trend demonstrating a dramatic increase in females and occurrence in younger individuals. Kaposi's sarcoma specific therapy is underutilized due to poor access to highly active antiretroviral therapy and financial constraints in SSA.” (Mosam et al. 2010).

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Reeder 1980, 2001). Enrollment of patients and recordkeeping were consistent through

the era of independence, with authority shifting, in the 1960s, to African medical

professionals in dialog with British researchers and the international medical community

focusing on KS (Taylor 1971). At the first international conference on KS in Uganda

(held in 1961) the hypothesis of a viral basis for the cancer was introduced (Taylor 1971,

Palmer and Reeder 2001), during the country’s last year as a British protectorate.

It is a reality and an irony that Africa had been the hub of KS knowledge production prior

to 1981: Not only was sub-Saharan Africa late in receiving ARVs, its medical literature

was compartmentalized along with the sub-classification of black African KS as a unique

type with less relevance to the western AIDS-related version, in a rhetoric that

emphasized benign forms of the cancer rather than the more aggressive forms also

prevalent in the mixed types appearing throughout that region.

In the context of gay rights through which HIV and KS emerged together as concerns in

the US and Europe in the 1980s, visibility was globally acknowledged as a condition of

identity affirmation and a ground for the conferral of rights. Martin Manalansan is one of

numerous queer theorists who has questioned the rhetoric of visibility and/as freedom,

noting that lack of visibility of gay and lesbian subjects in the Third World periphery is

perceived as premodern, but this figuration neglects to take into account the complex

conditions that render disclosure and appearance meaningful, often through indirect

means and not overt appearance or naming of sexual identity (Manalansan 1995, 499;

Lee 2006). Public visibility as gay or lesbian in such contexts remains fraught with

considerable risk of stigma, censure and violence, particularly for HIV positive subjects

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who are doubly stigmatized with links to homosexuality. The social identity thus

produced is one structured by the dual-edged sword of discredited and discreditable

stigma (Goffman 1974).

Unseeing Blackness: The Optics of Absence

It may thus be asked how this discussion about black African KS is similar to or different

from discussions about research into African AIDS. Centered around the controversial

search for origins of HIV in African epidemiological records and blood banks, the search

for HIV’s origins was critiqued early on for its neo-colonial agenda of constructing

xenophobic narratives that place Africa at the center of pathogenic origins, and that

identify African mobility as a source of the global spread of diseases. Without emulating

a simplistic etiological politics of location, we highlight the modernist scientific theory of

KS that emerged in this region during a period when few others places in the world were

devoting this degree of attention to the gathering and analysis of data about KS. To

identify western KS as not the same class of KS as the African strain, as many sources

did in the 1980s, was a response to the disruptive negativity of this body of treatment,

research and theory. The insistence on African KS as an “other” KS than that active in

the western AIDS context was, we propose, a product of nothing other than a

continuation of the antiblackness that based epidemiological knowledge on an archive of

black bodies and black theory only to discredit and segregate that archive in the final

years of critical research during the highly mediated intersectionality of KSHV-HIV. To

make ARV drugs needed by those very black African subjects off limits for more than a

decade of their circulation elsewhere around the globe is an expression of this

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“unthinking” of a blackness, in turn, itself “unthinking” the nature of KS as a disease of

the skin, A few years after the introduction of antiretroviral drugs in the west, Mbembé

proposed that the post-colonial African has been kept in a state of permanent injury akin

to slavery (Mbembe 2001).

The link of blackness and antiblackness to gay sexuality is thus broached here not to

make the problematic link by analogy between forms of alterity (queerness and

blackness), but to consider the material conditions through which both gay sexuality and

blackness have been figured with discrete and intersecting specificities in the material,

geographic and epidemiological HIV-KS nexus.

Beginning with an account of KS in the US context as one of emergence, disappearance

and resurgence, we then consider KS visibility in sub-Saharan Africa, drawing on the

literature about KS in Uganda dating back to the early 1930s and emphasizing the

database of cases assembled in the 1960s when the search for a viral basis for the cancer

was actively sought.

We use the terms opacity, opaqueness, and dense, or thickness of data, pointedly: KS is,

importantly, not a skin disease, a disease of the thin, visible surface, but a disease of the

blood vessel walls that manifests often in the skin, but also in the interior organs and

systems. We note this to deflect the interpretation of KS as a disease of the skin, the

external and visible manifestation of the body upon which race and identity have been

understood to be inscribed along with signifiers of illness.

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Here we bring to bear the theory of antiblackness on our proposal of a negative logic of

medical visibility. Lewis Gordon (1999) defines the antiblack world as one in which

blackness is deemed a pure absence, the black body encompassing a condition of being

whose existence must be justified. Saidiya Hartman makes a similar formulation about

the black body when she proposes that it constitutes “the position of the unthought”

(Hartman 2003), a predicament that Frank Wilderson calls “a scandal,” both shaping and

disrupting levels of discourse (Wilderson 2003). We draw on this tradition of thinking

antiblackness, which finds precedents in the writings of Orlando Patterson (1982) and

Frantz Franon to consider the presence of the black African body in the colonial and

postcolonial archives of medicine as the structuring negative form of early AIDS-era

discourse about KS.

Viral Intersectionality and KS/KSHV: The Cancer Multiple, The Virus Singular

Identity politics shape viral discourses no more or less than other sort of discourse. A

division of KS into regional types effectively racialized the virus; its further division in

the 1980s to include a (gay) AIDS-related form sexualized it. To return to Crenshaw,

ignoring intragroup difference is a problem put into action when, for example, those who

invoked the category black African KS as unlike western AIDS-related KS ignore

differences between the benign and aggressive forms that KS took among black Africans.

Such viral intersectionality describes not people with illness, or risk groups, but the

laboratory, clinical, and discursive classificatory systems that failed to see intrastitial

differences within regionalized and racialized types of KS — a failure of discernment

that had devastating consequences when it came to treatment of African KS in the HIV

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context. Working within her category of representational intersectionality, we propose

that by rendering KS multiple and regional, and by racializing and sexualizing it, the

archive of African KS could be put to the side in the search for a way to understand KS

as both “western” and “AIDS-related.” KS was, in effect, subject to a devastating identity

politics that made one category subject to critical attention, and another put aside as too

different. The opportunity to understand the intra-sectionality of KS regional and

population sub-types and to include the African history as centrally relevant in the global

picture of KS-AIDS was long past by the time the identification of the common viral

basis of all of the forms of the cancer was firmly established.

When in 1981 the New York Times journalist Lawrence Altman published what became

widely recognized as the first major news article about HIV, the focus was, specifically,

on KS. The article, titled “Rare Cancer Seen in 41 Homosexual Men,” was about the

sudden appearance of KS, the rare cancer referenced in the title, among young gay men.

The demographic with KS prevalence described in this article is not Mediterranean men,

but children and young adults in equatorial Africa. Before noting that previously “in the

United States, [KS] has primarily affected men older than 50 years,” Altman spelled out

that, in the US context, “the nationwide incidence of Kaposi's Sarcoma in the past had

been estimated by the Centers for Disease Control to be…about two cases in every three

million people. However, the disease accounts for up to 9 percent of all cancers in a belt

across equatorial Africa, where it commonly affects children and young adults” (Altman

1981, our italics).

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Nine percent of all cancers: this is not a minor figure. That KS was endemic in equatorial

Africa was a fact documented in medical literature from 1933, thanks to the research

center in Kampala., where massive amounts of data about KS were acquired, archived,

and written up for publication—material that would be mined to support the search for

African AIDS origins, but would remain conspicuous by its absence in KS-HIV

discussions in the west throughout the 1980s and 1990s, a period when African KS was

regarded as a class of the cancer distinct from that in gay men. Twice in his article

Altman notes research considering possible links of KS to a herpes virus, a hypothesis

proven correct by 1994 with the isolation of HHV-8 (aka KSHV), and indeed it would be

shown a decade later that the same herpes virus is responsible for KS across all subtypes

of the cancer. Yet throughout that decade, western KS among gay men was repeatedly

linked to the Mediterranean subtype—note Altman’s reference to men over 50 in the US,

a category that merges with “Mediterranean” older men. In their account of doctors’

recollections of first cases of what would later be called AIDS, Ronald Bayer and Gerald

Oppenheimer offer the recollection of the New York University virologist and

dermatologist Dr. Alvin Friedman-Kien treating a gay man whose diagnosis had eluded

physicians at another local hospital:

…he said to me, when he finally came to see me, "nobody would look at my feet,

at this rash on my feet." They were faint, they were purple-lavender, they looked

like bruises. In any case, I did a biopsy and quite surprisingly it came back as

Kaposi's sarcoma.... It didn't look typical, because prior to that man I had only

seen maybe seven or eight cases of classical Kaposi's sarcoma, usually in elderly

men of Eastern European or Mediterranean origin, mostly Eastern European

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Jews from Russia, and they developed their disease in the fifth or sixth decade of

life. They had purple sores on the lower extremities and the longevity was 10 to

15 years. (Bayer and Oppenheimer 2001, 13-14).

This account, like Altman’s, references older Eastern European and Mediterranean men,

a category of patient the doctor had himself seen, presumably, as immigrants.

In AIDS reporting and research articles following the publication of Altman’s article, the

journalist’s stunning details concerning African KS, and the striking pendant fact he

chose to note concerning African children and youth, were far more often than not passed

over in favor of the characterization of KS as multiple, and the new cases of KS in

homosexual men in the west as a disease possibly without strong ties to endemic “black

African KS.” A 1986 history of KS published in The Journal of the Royal Society of

Medicine proposed one of many classificatory schemas that circulated during these years.

KS was described in four consecutive regional types: European or western; African; KS

with immunosuppressive therapy; and AIDS-related KS (Shiels 1986). In the western lay

media, as in the medical accounts, “Mediterranean [western] KS” and AIDS-related KS

were most often discussed together without accounting for the implications of this choice

of a geographic organizing principle. A geographic and ethnic distribution classification

system devised by J.F. Taylor, who was writing about research and clinical treatment

records at the Cancer Unit of the Makerere University in Uganda, offers a highly detailed

sub-classification of KS that accounts explicitly not only for geography and ethnic

distribution within the sub-Saharan region, but also for race and sex. This account is

distinct from, and invisible in, the later classifications of KS, insofar as Taylor et al.

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presciently attempted, in 1972, to account for intra-group differences, taking into

consideration intersectionality and differences among and across the people with KS.

Taylor’s subjects were studied according to multiple categories of identity -- geographic

(with Uganda patients divided into their 17 administrative regions), ethnicity, gender, and

age. Scale is of critical importance to this schema. During this period and later, KS

classification was typically is conducted on a global scale: KS is divided according to

large subtypes, some defined geographically-racially (“black African KS”) and some

sexually-regionally (“western AIDS-related,” with the working understanding that HIV is

to a great extent sexually transmitted).

By the time it was established that herpes virus KSHV was responsible for all strains of

KS, and as aggressive “AIDS-related” KS escalated in sub-Saharan Africa alongside the

benign “endemic” version that had become synonymous with black African KS in some

global classificatory schemas, the sub-classifications of the cancer became less

meaningful. But this realization was too late to undo the effects of the selective

superimposition of (western) AIDS-related KS and “European” or “Mediterranean” KS.

This historical conjoining could not easily be undone to include black African KS in the

new virus-driven picture.

In a publication of 1963 documenting an international symposium on KS, the Chicago

cancer researcher Stephen Rothman notes that close to a thousand publications about KS

appeared prior to 1949. After this date observation of “exceedingly high incidence”

among the Bantu was the focus of intensive research. This included work by French

researchers, with the Kampala cancer registry set up during the colonial period

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maintained after independence. Uganda was the center of a pan-African research network

devoted to studying the prevalence of the disease among blacks on this continent. With

the turn to a search for the origins of HIV, the research that had taken place in Uganda

and elsewhere in Africa was mined — with the agenda of determining the presence of

HIV prior to 1981, to identify a possible origin. But the potential of this database for

research into KS was not grasped to the same degree. Discussion about KS in sub-

Saharan Africa dates from 1933, and a variety of forms of disease expression were noted,

belying the simple classification of “black African KS” as an endemic variety different

from “AIDS-related KS,” a form that also has impacted black Africans in large numbers.

The fracturing of the disease form into a multiple would later be revisited with the

recognition of the common condition of the KSHV virus underlying all cases. But, as

already noted, this recognition came years too late to reinterpret KS intrasectionally, and

to see the precise relevance of all varieties of African KS to the varieties of KS linked

with HIV globally.

The bioethical stakes of this problem of segmenting out non-HIV-linked forms of KS

become critical when we consider the role of disclosure in Uganda – the historical hub of

KS research and a panoptic national context where employment prospects are linked to

HIV documentation, a regulation that serves as impetus to businesses that offer false

documents for a fee.

KS in Africa: Erasure, Invisibility, Intersectionality

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Although speculation about viral transmission of KS is documented in the early

literature, it was not a major focus of investigation until the era of HIV. The telling of the

KS story refracted through the American AIDS narrative has been faulted by historians

for its demonization of Africa as the primary point of origin of the HIV virus (Preda

2005). The history of KS research must be particularly read in the context of the current

legislative context in Uganda that prohibits homosexuality and stigmatizes HIV to a

dangerous extent, impacting community status and livelihood, and making disclosure of

either status risky (Alsop 2009). The question that motivates us here is about the

implications of the legacy of this medical research for the HIV/AIDS research agenda

with respect to its connections with other conditions at the time of its formulation during

the 1980s, and with respect to blackness and stigma. Among the many lessons learned

about the management of HIV is the importance of managing co-infections, which entails

managing stigma as a potentially major source of risk. KSHV, a herpes virus, moves the

discussion back into narratives of sexualized risk. The underlying implication here is that

the missing of the African KS research has been a lost opportunity to take into account

the epidemiology of forms of KS that persist alongside and inside of HIV, as

intersectional in all cases. Such a lost opportunity must frame the normative paradigm of

antiblackness and postcoloniality in the production and circulation of medical knowledge

of global health crises and their concomitant sets of truth in bioethical terms.

Writing in 1963, Stephen Rothman at the University of Chicago posited wide-ranging

etiological factors of KS, such as racial predisposition and environmental causes

spanning an ecological spectrum. He qualified his medical views due to insufficient data

and social structural peculiarities among certain populations such as the African Bantus, a

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people among which, he noted, men married several times and had many children. In the

same symposium on KS, A.G. Oettle’s extensive research on racial and geographical

factors, for the period 1949-1953, noted a high rate of incidence among the Bantus of

South Africa. While this rate was lower, prior to 1912, the author cautions against

mistaking low prevalence with a general rarity in the face of missing cases that “may

escape diagnosis by clinician and pathologist alike” (1963, 17). The epidemiological

knowledge about KS has continued to evolve, particularly 1980s onwards, with the

advent of HIV/AIDS, the immunodeficiency syndrome that manifested through KS

lesions, primarily among homosexual men in North America. First termed the “gay

cancer” in popular media accounts in the west, the understanding that KS could be linked

to a potential infectious agent that manifested through a spectrum of conditions was

under consideration by 1963 (Davies 1963).

A crosscutting of report interpretations allows us to identify patterns across what would

emerge as geographic typologies. For instance, in one of the earliest cases we were able

to locate (described as the fourth one identified by L.J.A. Loewenthal), in a 45-year-old

man in Uganda is described in the report as a “full-blooded Negro” and diagnosed with

multiple idiopathic hemorrhagic sarcoma of Kaposi. Writing in British-controlled Uganda

in 1938, Loewenthal references a 1922 case of KS in “a Bantu Negro of Cameroun” and

another 1935 case in “a full-blooded Negro” and observes that the rarity of cases reported

among Negros might be due to a lack of skilled dermatologists in the greater part of

Africa (Lowenthal 1938, 972). Francis A. Ellis, writing from Baltimore in 1934, provides

a racial breakdown of KS cases among Italians, Russians, Jews, Poles, Americans,

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Austrians, Germans and Scandinavians, and reports what he describes as a second KS

case in an “American Negro”, a 40-year-old “native” who had never been outside the

United States. Ten years later, Benjamin Persky and James Lisa reported the case of

another “full-blooded Negro”, a 54-year-old man born in New Orleans. Writing in 1944,

the authors observe the infrequency of KS among American “Negros” despite the

extensive literature available on the entity (Persky and Lisa 1944). All three reports

documented in the Archives of Dermatology & Syphilology contain black and white

photographs of the cases. Thus, preceding HIV/AIDS by almost four decades, these cases

set up a preliminary comparative framework for the interpretation of the epidemiological

study of KS as it has been seen through a racial lens, including Africans (including

people of Black African descent in the US) on one side and white races (including

Europeans).

With the discovery of HIV/AIDS in North America, however, this framework was

significantly altered, no longer premised on an ostensibly neutral and now archaic

medical racial taxonomy. As Alex Preda notes, the African origin story of AIDS came to

be constructed through a particular classification of risk mainly through the conflation of

African KS and North American KS in medical accounts of the 1980s published in The

Lancet and other sources. In particular, Preda’s analysis of a 1983 medical report about a

Danish surgeon who had worked in Zaire during the 1970s, published in Lancet,

demonstrates his argument about the African origin myth effected through the

classification of African case as an aggressive form related to the North American case.

After her death in 1977, the patient’s medical file was reinterpreted in Copenhagen as an

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AIDS case through the narrative reconstruction of her condition described without the

presence of KS but traced to a possible contact with blood and excretions of African

patients with KS under unsanitary, primitive conditions. This narrative serves for Preda

as the contradictory reinforcement of the AIDS-KS conjunction.

Consequently, we advance our review of the accounts of African KS that precede the

condition’s identification as a precursor of HIV in North America in order to point to the

rich research on its etiology that could have informed the dominant narrative of

HIV/AIDS in the western literature..

Conclusion

We conclude by appropriating Mayer and Mimiaga’s use of the “past is prologue”

aphorism to suggest that the past of KS in sub-Saharan Africa should in fact be

interpreted by historians and ethicists of health and medicine. Rather than giving concrete

expression to a subjugated history, this would bring to light the always already visible

and material archive of KS present under the sign of its erasure as a form previously

understood to be unrelated to the KS-HIV intersection. Looking back on this archive,

what can we learn about viral intersectionality in a time when viruses are even more

widely characterized as intersectional, chimeric and multiple? The historical archive has

yet to be mined to rethink the structural erasure of a critical history that might help us to

rethink how health research is done under the sign of the global, and how viruses and

cancers come to be seen and treated as global entities with the specificity and complexity

of multiplicity intact. At the very least we might learn how to think analytically and

critically about how a constellation such as a global oncovirus and its neoplastic forms

22

gain recognition on a global scale. The evidence of such a possibility for rethinking the

epistemological models of disease history was advanced already by British and

postcolonial Ugandan researchers in the 1980s.

For example, in a 1986 editorial published in the Journal of the Royal Society of

Medicine, Anthony J. Pinching ponders different theories regarding the presence of HIV

in Africa and its viral transmission. Addressing the Haiti-Africa migration as possibly an

unlikely factor, Pinching highlights cases of Central Africa residents who sought

treatment in Belgium and France, understood as retrospective cases of AIDS dating as far

back as 1976, predating the first identifiable US cases. He further goes on to note that if

African countries had the resources that were available in the USA in 1970s, then AIDS

would have emerged as a sexually transmitted disease, not dissimilar to syphilis.

Pinching’s observations appear compelling in the light of two other reports in the same

decade that relate to the HIV-KS nexus. Anne Bayley’s 1983 report on an aggressive

form of KS in Zambia describes the result of 23 patients (20 men, 3 women) and

observes differences in KS in Africa and the US among homosexual men, reported to be

similar to KS in African children. Citing a similar observation, Serwadda et al (1986)

document the cases of 4 Ugandans (3 men, 1 woman), suggesting the possibility of AIDS

in cases of generalized KS in Kampala dating back to 1976.

We stress once again that our objective in piecing together these various studies and

viewpoints is not to arrive at a teleological determinacy of the African KSHV-HIV nexus

that predates the emergence of KS-HIV in the West. Much like the researchers of the

time who remained perplexed at the daunting incidence of KS and its possible

23

intersection with HTLV-III, we can only aspire to proceed via conjecture to make our

simple yet critical point about the erasure of African bodies with KS from the accounts in

the West linking KS to elderly Mediterranean and Jewish men, only to watch an epidemic

unfold in Africa -- where researchers now rush to establish programs. As one researcher

told the anthropologist of Uganda health initiatives Johanna Taylor Crane, “Africa is in

vogue now” (Crane 2013). This is only too ironic given the delay of ARV treatment

access and the western ignorance of the KS archive that preceded that neglect-fueled

period of the AIDS epidemic’s escalation throughout sub-Saharan Africa between the

turn of the century and the 2010s.

In an era marked by ethical conflicts about homosexuality and risk to life incumbent on

disclosure and outing, it is compelling to conclude with a relevant perspective on sexual

transmission and homosexuality, a topic with primacy in North American and European

HIV/AIDS narratives. In African national contexts including Uganda, official discourses

about HIV cite heterosexual anal intercourse as a primary mode of transmission, a point

problematized by Pinching (1986). In a 1984 discussion paper, Jonathan Weber

hypothesized that in Africa, KS like HIV, is a sexually transmitted disease, further

suggesting an infectious etiology to describe the intersectional viral epidemiology of

KS in Africa, linking the virus to other viruses such as cytomegalovirus (CMV),

herpes simplex I and II (HSV) and Epstein-‐Barr virus (EBV). Linking the

predominance of African KS in the male population with the possibility of its

infectious etiology, Weber then urges a consideration of homosexual intercourse in

the context of AIDS in Africa. This consideration, he suggests, must be attentive to an

24

incidence of situational homosexuality (men who have sex with men but who do not

identify as homosexual), specifically with respect to instances of polygamy, which he

identifies as widespread, as in cases in which tribal elders in Equatorial Africa

acquire up to twenty wives. Weber’s hypothesis is that this practice creates a deficit

of available women, leading young male adults to find recourse in in homosexual

behavior together. Weber goes on further to suggest that doctors working in the

Royal Army Medical Corps had observed this pattern of behavior in 1940s Uganda

but did not publish an account of it, owing to the sensitive nature of the practice and

its perception as unrelated to medical problems and venereology.

Weber’s conclusion about the epidemiological similarities between AIDS and

African KS is based on the common immunological changes as well as evidence

of shared risk of identical range of viral and protozoal infections, especially,

CMV, EBV, HSV I and II and HBV. Such a conclusion could be extrapolated to

suggest another instance of invisibility—in this case of homosexual practice—as a

potentially re-structuring element in the epidemiological life of KS in Africa. Of

course the data supporting such an account is by no means thick. The colonial-era

missionary erasure of Africa’s history of sexual diversity and the embracing of

colonial evangelism in the contemporary moment, as evidenced in the 2009 anti-

homosexuality bill in Uganda (Cheney 2012) must be taken into account when

considering the under-reporting of KS cases or its etiology as linked to a

particular kind of sexual intercourse as well as preponderance among men. The

Ugandan law professor and dean Sylvia Tamale, nationally labeled “worst woman

25

of the year” (2009), in a speech to the Makerere University in Kampala, outlined

the criminalization of homosexuality in Uganda through British era sodomy laws

and the detrimental effects of the 2009 bill on the Ugandan citizens. The 2009 bill

was signed into law by the Ugandan President Yoweri Museveni in February

2014. With death penalty and long prison sentences as the bill’s chief form of

criminalization of homosexuality, the impact on HIV/AIDS outreach for African

MSM, who aside from engaging in same-sex behavior also marry women, would

be devastating (Alsop 2009). More specifically for instance, there are reports of

rising HIV rates in countries like Uganda and Zambia, especially in the prison

population, where condom distribution cannot be officially sanctioned in the face

of legal criminalization of homosexuality (Kyomya et al. 2012).

We hypothesize that the KS-HIV nexus and the attendant viral intersectionality is

linked to the historical dynamics around indigenous social and sexual practices

that, for instance, as indicated by Weber (1984) became invisible owing

predominantly to the operations of colonial evangelism along with a range of

other factors. This historical contextualization of the epidemiology of KS in

Africa that remains hyper-visible through an archive of colonial medical

documentation, inconclusively invisible possibly in practices of reporting owing

to stigma around pathology, and categorically erased in the Western account of

HIV/AIDS in the 1980s might seem like a piecemeal fable. However, from a

bioethical perspective, we conclude, it is a necessary interconnection in

comprehending the work of erasure, invisibility and intersectionality in relation to

26

the fragmented history of KS in Africa. This history necessarily capitulates to the

colonial legacies of sodomy laws in Uganda recycled as contemporary legal

criminalization of homosexuality with devastating outcomes in terms of

HIV/AIDS prevention, but this is only part of the story that must be retold and re-

intepreted for what we can glean in terms of missed intrastitial evidence, in light

of the current “rush to Africa” during a period of continued and now globally

mediated sexual conservatism. We must also ask who benefits from the removal

of the black body from the KS picture, and who benefits from the reinstantiation

of the black body in current global health initiatives that return to Africa in the

name of humanitarian aid, and for research, during this era of global reporting on

local human rights with respect to a forbidden subject such as homosexuality. For

our own purposes, we propose the more modest goal of returning to the archive to

interpret the enactment of resistant negativity that structured black African KS as

a cancer multiple and not solely or primarily of the skin, and KSHV as an

intersectional virus that must be studied in all of the diversity of its local

expression instead of hypothesizing a unitary “African KS” for the purposes of a

global schema that fails to address the very subjects most impacted in large

numbers now. To do this entails grasping the intersectionality of KS in Africa as

not just a matter of its connections to KS elsewhere and to other viruses including

HIV, but also to see the intrastitial factors, which include local laws and silences

that preclude the accrual of evidence about the HIV-homosexuality nexus within

this intersectional history of sub-Saharan African KS.

27

The literary theorist and scholar Saidiya Hartman discusses redress in a manner

that is highly relevant to this problem of accruing evidence. Hartman points to the trouble

or problem of retrieving or accounting for what she calls the “unthought”—a condition

roughly akin to the unseen. She acknowledges that redress (what we might call “making

visible”) is necessary to political and ethical projects (what we would identify as

bioethical dilemmas). Yet, Hartman continues, redress is ultimately an inescapable

failure: It is “tenuous, provisional, and double-edged” (Hartman 1997, 78) because it re-

articulates the conditions of loss and violation that necessitated it. Redress recognizes its

context of domination. Following Hartman’s line of thought about the “unthought,” this

paper has tried to imagine an otherwise future that attends to historical KS research in

Africa. To do so this project fully one would need to recount and make visible the “raw

power” (Mbembe 2001) enacted in this context and gesture to ways this research can be

made useful for theory and practical studies of KS in a context that does not merely mine

Africa for the future of “global health,” but which addresses the real and current situation

in Uganda where to be active in KS-HIV queer nexus poses a complex and risky politics

of visibility. This visibility applies not only to the virus and its appearance, but also

entails an intricate set of political, sexual and health circumstances that cannot easily be

disentangled from the cancer, from the oncovirus, and from the intersectional relationship

of KSHV-KS to HIV-AIDS. Of utmost prevalence is the need for a clearer understanding

of the historical legacy of homosexuality in this nexus that implicates race, sexuality and

postcoloniality in a concept of viral intersectionality – a concept that incorporates into

intersectionality of identity the material and discursive lives of viruses and the making

visible of viral identities. This essay has been a small gesture in hopes that such a project

28

of interpreting intersectionality in the global health context may ensue. Pinching, in 1986,

looked to Africa for “lessons for us all” about AIDS (Pinching 1986). Rather than

returning to the African KS archive for such lessons, we propose that we may see that

archive as evidence of the conditions of antiblackness and the degree to which exclusion

served, ironically, as the basis for the late-breaking humanitarian “rush to Africa” to

address an epidemic the proportions of which were fueled by a decade of invisibility and

erasure. Antiblackness, a theory that posits blackness as itself theory and not as an entity

to be restored to white consciousness, presents a means through which to interpret the KS

archive and its attached intersectional epidemics without defaulting to a politics of

making visible that which has already been materially constituted under conditions of

erasure and negation.

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African Kaposi’s Sarcoma in the Light of Global AIDS: Antiblackness and Viral Visibility (2014 draft)

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