The American Response to the AIDS Epidemic Among African Americans and Continental Africans

BY DEBBIE DADA

“How we think about disease determines who lives and dies.”¹ This is a quote from 1986 by Evelynn Hammonds, a scholar of the History of Science and African-American Studies. How does the manner in which disease is perceived affect the level of governmental and community mobilization to help afflicted populations? How might conceptions of disease be differentially applied to demographic groups? And how might this affect the procurement of resources to mitigate their suffering? In this piece, I will investigate the nature of American relief efforts for African-Americans and continental Africans suffering from Human Immunodeficiency Virus and the associated Acquired Immune Deficiency Syndrome in the 1990s and early 2000s. HIV/AIDS has profound impacts on both of these populations historically and presently, not only in terms of health, but also in terms of social and economic well-being. I plan to evaluate how the American conception of this disease as biological, social, and political was formed and applied in similar and distinct ways to HIV-positive individuals living in both Africa and the United States. To do so, I will investigate how the disease was perceived, how the different populations were perceived, and then how these perceptions translated into tangible health interventions. The comparison of American perceptions and responses allows us to investigate how disease and race factor into one’s status as a citizen. In this essay, I argue that the key differences in the nature of the American responses are reflections of the differing assumptions about members of these groups. The similarities are informed by perceptions of the black race.

The Disease

HIV/AIDS defined the health landscape in many ways in the 1990s and 2000s as its prevalence reached epidemic proportions. First identified domestically among heroin users and homosexual men, the disease gained–and still maintains–a long history of stigma.² Throughout the 1980s, there was a significant and increasing proportion of members of these heavily stigmatized populations suffering from the disease, and according to a 1986 editorial in the New York Times, their identities as members of these groups were “overemphasiz[ed]” by the media.^{3, 4} We now know that HIV is a virus that attacks the immune system; is spread primarily through sexual contact; and can also be transmitted through the sharing of infected needles, blood products, or from mother to child. Its association with intravenous drug users and homosexual men is in part to blame for the countless incorrect theories on the etiology and transmission of the disease that reinforced existing negative stereotypes while affirming stigmas. Televangelists and laypersons alike believed it to be the “wages of sin,” and a result of “immoral behavior” and “sexual irresponsibility.” This was due to the fact that HIV was sexually transmitted and most frequently found in those engaging in homosexual sex.^{1, 5} The association of the disease with punishment from God among Americans decreased compassion and increased blame on the victims suffering from HIV. There were varied beliefs among Americans on the transmission methods, and many even believed that it could be transmitted through casual contact. This led to the sequestration of people living with AIDS or HIV in some public settings such as prisons.³ When President Ronald Reagan was asked if he would allow his child to attend school with an AIDS patient, he explained that although “it is true that some medical sources had said that [AIDS] cannot be communicated in any way other than the ones we already know and which would not involve a child being in school,” he could “understand both sides” of the argument.⁶ This notion of easy transmission produced fear among the uninfected of social groups associated with the disease, further rationalizing the animosity and exclusionary behaviors in which they engaged.  This sentiment is encapsulated in the words of an anonymous surgeon referring to the epidemic in 1987: “We used to hate f****** on an emotional basis. Now we have good reason.”⁵

The Continental African Epidemic

The American perception of continental Africans suffering from HIV/AIDS notably highlighted ideas of insignificance and inferiority. As the epidemic progressed through the 1980s and 1990s, it moved from central and eastern African nations to the South and West.⁷ The health systems of these low-income countries did not have the infrastructural capacity to handle the influx of infected persons, and, as such, access to adequately resourced “hospitals, clinics, health staff, and consumables” was very limited.⁷ The manner in which Americans viewed this epidemic that was devastating many countries on the continent can be evaluated by assessing scholarly literature as well as historical engagements on the continent.

The lived experiences of people suffering from HIV/AIDS were hardly a concern of the US government, nor did these experiences serve as the main motivation for increased relief efforts, instead it was nationalistic concern that provoked action. As Jeff Gow, a health economist researcher with a concentration on HIV/AIDS stated  “until the US government perceived the African AIDS epidemic as a threat to US interests, the US response to the crisis was limited.”⁷ It was only when it was evident that the epidemic had the power to shake the foundations of African regions and render them more unstable did tackling HIV/AIDS become a major concern of American officials and granting associations. This was because only then did it pose a threat to trade relationships and loan agreements that affected the American economy. This is further established by the initial reluctance of the government to regulate the cost of pharmaceuticals that might help quell the epidemic because of the potential economic loss for American businesses.⁷ Further, the concern of threats to national security posed by infected persons trying to immigrate was also notable. As Priscilla Wald, an expert on cultural anxiety and contagion explained, American outbreak narratives regarding HIV often implicated contact between “innocence and danger, the innocent—generally white, Western, and economically privileged—come in contact with a dangerous, disease-carrying ‘other’—primitive, perverse, and dark.”⁸ As such, it was not until the latter half of the 1990s that the US acknowledged and became concerned by the “social, economic, and governance impacts of the epidemic.” Only after this change in viewpoint did the efforts of the government in the early 2000s have an “explicit international focus.”⁷ 

Prior to the establishment of USAID in 1961, much of the foreign aid carried out by America was facilitated by wealthy and powerful foundations. Evaluating the work of these foundations, in tandem with that of the American government, allow us to paint a comprehensive picture of American engagement with the continent of Africa. The Rockefeller Foundation, for example, had the economic capital to partake in foreign aid initiatives. The first two monetarily significant involvements they had with the continent were in family planning efforts. The first was a grant issued in 1985 for scientists to conduct “biomedical research relating to the use of contraceptives” in Africa, Asia, and Latin America.  The second was issued in 1987 to 10 Sub-Saharan African nations to “collaborate on family-planning procedures” with a focus on decreasing the risk of AIDS transmission.⁹ Efforts to emphasize the need for family planning services for only certain populations has a history of being done more to control population sizes of undesirable people than to decrease the spread of disease in America. This can be seen in sterilization efforts undertaken by the US government domestically in the case of immigrants, people of color, and the mentally ill in the early to mid-twentieth century.¹⁰ Wickliffe Draper, a wealthy American eugenicist, donated two grants to the Human Betterment League, which financed state-run sterilization programs for “poor black women” and donated 100,000 dollars to a medical school in 1950 on the condition that it taught students the importance of “therapeutic sterilization.”¹¹ The work of the Rockefeller Foundation on the continent continued in the American legacy of limiting the reproductive efforts of individuals deemed ‘unfit.’

The view of Africans as biologically and culturally inferior has been a staple in discussions of racial science among American scholars for over a hundred years. These notions had significant implications for American foreign aid and development efforts. Racial science was the subject of much of the discourse in the medical and political community during the twentieth century. In 1916, Americnn lawyer Madison Grant published The Passing of the Great Race, which argued that “blacks and inferior immigrant groups” were of a “lower” stock and, thus, advocated for immigration restrictions.¹¹ The book was very well received by American political thinkers, and was even quoted by 54 legislators, in addition to garnering commendation from President Theodore Roosevelt as being “the work of an American scholar and gentleman.”¹¹ In 1917, leading psychiatrist John E. Lind published a journal article entitled “Phylogenetic Elements in the Psychoses of the Negro,” which used evidence based on African ethnographies to argue that Africans were an innately “primitive” people.¹² This racial science was also the basis of much discussion on the benefits of segregation later in the century. Robert Patterson, the founder of an American white supremacist organization in the 1950s, explained that “integration represents darkness, regimentation, totalitarianism, communism, and destruction.” These sentiments were echoed by Wickliffe Draper and others who foregrounded the innate inferiority of African and African-descended people in arguments against integration.¹¹ 

In a piece by historian Martin Summers, he argues that the belief among American medical professionals in the nineteenth and twentieth centuries that Africans had delayed “biological development” and, therefore, like animals, “operated on instinct” affected how they were treated with respect to mental illness.¹² This notion that Africans could not be expected to think logically for themselves implied that they required guidance from other people who were sophisticated enough to know better. These assumptions informed American development policy in notable ways. President Harry Truman in his 1949 inaugural speech explained that it was America’s duty to “make available to peace-loving peoples the benefits of our store of technical knowledge in order to help them realize their aspirations for a better life”¹³ This presentation of Americans gifting to members of the developing world the knowledge that they aspire to have but were helpless to achieve on their own is paternalistic. This is also reminiscent of colonialist perceptions of Africans as childlike–having much potential yet unable to fully actualize it on their own without the help of the wiser members of the West.¹⁴ It further established a picture of Africans as “lacking in historical agency” due to their “powerlessness, passivity, poverty, and ignorance,” as described by anthropologist and development theorist, Arturo Escobar.

The Governmental Response to the Continental African Epidemic

The perceptions of Africans suffering from HIV/AIDS as insignificant and inferior informed the manner in which the American government structured their aid efforts. Specifically, it resulted in a late response to the international epidemic and neo-colonialistic control. Because the US President’s Emergency Plan for AIDS Relief (PEPFAR) was the most significant element of American international AIDS relief efforts, this will be the focus of my evaluation. As Gow explained in his 2002 report, although USAID was one of the major contributors to the fight against AIDS in sub-saharan Africa, “even more resources should be forthcoming,” and the level of aid received in the 1980s and 1990s was only a fraction of what was needed, and indeed a fraction of what the US government was capable of giving.⁷

The neo-colonialism in the aid efforts can be seen in the funding mechanism, level of control, and language used in PEPFAR. PEPFAR is a bilateral funding program wherein funds go directly from the US Treasury to specific other states, rather than being funneled through other multilateral agencies such as the UN, World Bank, or Global Fund.¹⁵ This is notable because this type of funding scheme enables the US to “maximize its leverage with other countries through the funds” available while “multilateral venues do not possess the same top-down leverage.”¹⁶ Therefore, by utilizing this mechanism of funding, the American government has the power to exert control over the actions and activities of sovereign African nations.

In the details of the PEPFAR provisions, we can see that America not only had this power, but actively made use of it in a manner that relied on assumptions of Africans’ inability to think for themselves. This is clearly implicit in the notions of African inferiority previously discussed. The US does this by importing Western ethical frameworks and cultural practices in the name of HIV/AIDS prevention. In the congressional report with the details of how PEPFAR funding could be utilized, it was determined that a third of all prevention efforts be dedicated to “abstinence-until-marriage” education programs, which catered to American religious ideals and was in opposition to “well-regarded research,” research that “established that this kind of sex education does not lower the risk of contracting HIV and other sexually transmitted diseases.”^2,15 Additionally, the report purported that “prostitution and other sexual victimization are degrading to women and children,” and NGOs must therefore have a “policy explicitly opposing prostitution and sex trafficking” in order to be eligible for foreign funding.¹⁵ This policy worked against African organizations that adopted harm reduction policies in an effort to preserve the agency of individuals and avoid morally policing their behavior by propagating American views on prostitution. Although the report did condemn practices universally understood as immoral, such as sexual violence and exploitation, it also contained many American-backed ideals, ideals that emphasized what Americans–and not necessarily the rest of the world–thought were good moral principles. These included the promotion of “monogamy and faithfulness,” “reduction of casual sexual partnering,” and the condemnation of “widow inheritance.”¹⁵

The African-American Epidemic

The American perception of HIV+ African-Americans was informed particularly by notions of insignificance and blame. The influence that the mainstream white media and American public health entities possessed, as well as the power that they used, allowed this perception to have profoundly negative impacts on the African-American experience with HIV/AIDS.

The insignificance of African-Americans living with and dying from HIV/AIDS is seen in reporting by the medical and mainstream press. Neglect of African-American HIV patients can be seen from the very beginning of the epidemic in a 1981 CDC epidemiologic notice on five deaths from the associated condition of pneumocystis in California.¹⁷ These deaths occurred in young homosexual men who were otherwise healthy, which was “unusual” since pneumocystis is most commonly found in the immunocompromised.¹⁷ Although there was no explicit reference to race, health journalist Linda Villarosa noted that it was implied that these patients were all white, thereby excluding two additional reported cases of pneumomycosis that occured in a healthy African-American homosexual man and a Haitian heterosexual man.² The omission of the Haitian patient is likely due to his sexual orientation, as the editorial note accompanying the report pushed to emphasize “an association between some aspect of a homosexual lifestyle” and the disease.¹⁷ However, there does not seem to be a valid epidemiological explanation as to why the African-American was not included. 

As the domestic epidemic progressed, the African-American community not only experienced the disease in higher numbers, but they were also more likely to die from it. To make matters worse, this disparity was largely ignored by journalists. By 1987, the average life expectancy in America of a Black person diagnosed with AIDS was 19 weeks while that of a white person was two years.¹ Additionally, a Black woman was 13 times more likely than a white woman to become infected.¹ Regardless, the mainstream white press made very little mention of the Black experience. Reports during the mid-1980s on the spread of the disease to heterosexual populations implied that it was to “white, middle class, non-drug using, sexually active people,” actively neglecting the fact that up to 90% of affected heterosexuals were Black or Hispanic.¹ As reporter Evelynn Hammonds noted in a 1986 article, “the vast disproportion of people of color in the AIDS statistics hasn’t been seen as a remarkable fact, or as worthy of comment.”¹

African-Americans were also viewed as responsible for their contraction of HIV/AIDS because of their ‘impure’ actions, and this blame affected how patients were treated. There were three prevailing stereotypes of African-Americans that informed why Americans blamed them for having the disease: (1) that African-Americans were simply prone to disease, (2) that African-Americans were sexually irresponsible; and (3) that African-Americans were frequent drug users. There has long been an association between Black bodies and disease in American history.¹ Historian Tera Hunter notes that since the Civil War period, both health workers and the general public believed that African-Americans had a “predilection for insanity, typhoid fever, syphilis, alcoholism, bodily deformities, idiocy,” and other illnesses.¹⁸ Moreover, medical articles throughout the 1980s supported the notion that the HIV-afflicted African-American population, just like the rest of the Black race, was made up of “diseased, debilitated and debauched” people who had “only themselves to blame.”¹ 

The placing of blame on African-Americans living with HIV was further rationalized by the stereotype of Black people as immoral. This stereotype was based on perceived sexual deviance and propensity for drug abuse. In fact, a 1989 TV documentary investigating why Black and Hispanic populations were disproportionately affected by the epidemic purported that the main reasons were their “sexual proclivities” and drug use.¹⁹ It highlighted a quote from a patient that was likely meant to characterize most, if not all HIV+ people: “it’s like we just live for danger.”¹⁹ The sexualization of Black bodies, and especially those of Black women, has been a prominent facet of racial science for centuries. African-Americans were known to be “more fragrant and loose in their sexual behaviour” because the “smaller brain of the Negro had failed to develop a center for inhibiting” it.¹ Hunter writes, “whites considered African-American women as promiscuous by nature.”¹⁸ Sexual deviance was seen as not just common among Black people, but “in their very nature.”¹ A 1987 article in The Atlantic Monthly made explicit these associations with perceived immoral behaviour and Black bodies. The author presents a picture of a race “riddled with venereal disease” and living in communities characterized by the “pervasive use of drugs.”¹ It is notable that the author uses no statistics to support these claims but rather presents them to the audience as commonly understood truths. Rather than omitting statistics entirely, a 1987 article published in The New York Times manipulated prevalence rates in a manner that further established the connection between drug use and African-Americans. This was done by only including the high percentage of drug-related HIV cases in the Black and Hispanic community and not the percentage of Black and Hispanic cases that were drug related.¹ This manner of presentation leaves the reader with an impression of the much less drug-influenced white community stacked against promiscuous, low-life minorities.

The Governmental Response to the African-American Epidemic

The American response to the domestic epidemic among Black citizens was delayed and inappropriately small due to the aforementioned perceptions of the suffering patients’ insignificance and deservingness of blame. Greg Millett, a former policy advisor at the White House, stated that “during the Bush years [1980-1989], the administration dropped all pretense that they cared about AIDS in this country.’’² Furthermore, there was great frustration among both activists and Black people living with AIDS due to the lack of involvement of the rest of the Black community in domestic AIDS initiatives. This frustration was so great, in fact, that in 1987, a Black, HIV+ activist named Craig Harris stormed the stage during the American Public Health Association’s AIDS session, in which not a single person of color was invited to participate, and shouted to the crowd, “I will be heard!”⁶

The 1990 Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is commonly seen as a major step in addressing the domestic epidemic. This Act included a commitment of approximately 175 million dollars for the subsequent five years to low-income and uninsured populations as a last-resort payment system for HIV care.²⁰ The Act was named after Ryan White, a white hemophiliac teenager diagnosed with AIDS after a botched blood transfusion months prior to the Act’s passing.²¹ While hundreds of thousands in Black communities were contracting and dying from the disease for years prior, this one white teenager’s experience galvanized the nation in a way their experiences could not. Not only was this choice of a name an example of the government actively ignoring the struggle within the Black community, but it did not reflect the identities of most of the people it served. Before this Act was passed, in 1987, the Health Resources and Services Administration produced a similar, much smaller-scale AIDS Service Demonstration Program.²² A report on the program stated that 50% of the clients were minorities, 57% of whom identified as Black.²² It was therefore reasonable for them to assume that this service would have great patronage among communities of color. Their choice not to acknowledge the acutely difficult experiences of Black people was deliberate erasure.

It was not just in name that the CARE Act neglected to consider Black populations adequately, but also in practice. In the congressional report for the disease, there is not a single mention of Black, African-American, or Hispanic people. In fact, the only mention of “the minority community” was in a list of different populations that special projects were approved to serve, a list that also included people living in “rural areas.”²⁰ There were, of course, multiple provisions for “special services” for those living with hemophilia, even though as of 1984 only 1% of American AIDS victims fit this profile.^{23, 20} In a 1995 report on the Act focusing on “Access to Services by Minorities, Women, and Substance Abusers,” the effect of the Act’s lack of focus is clearly demonstrated. The report begins by detailing the extent of the epidemic in minority communities: in 1989 “African-Americans and Hispanics accounted for 43% of cumulative AIDS cases” and by 1994, 56% of new cases were in the African-American community.²⁴ Minorities utilized the services at rates similar to their proportion in the HIV epidemic, but there were numerous barriers to access as detailed by HIV+ individuals who were interviewed. Such barriers included “a reluctance to obtain care from a provider of a certain racial or ethnic group or who primarily serve[d] a different racial or ethnic group than that of the person seeking services.” There was also “a lack of trust of the medical community.”²⁴ By 1993, three years after the Act had passed, HIV became the leading cause of death for African-American men ages 25-44 and the second leading cause for women of this same age group.⁶

Only after years of continued suffering, as well as persistence and sacrifice on the part of Black activists, did the government make significant efforts to address the unmet needs of Black communities in the epidemic. This came in the form of the Minority AIDS Initiative of 1999, which was a “166-million-[dollar] initiative to address HIV and AIDS in racial and ethnic communities” hosted within the CARE Act programming.⁶ In the first report on the “Implementation of the New Minority AIDS Initiative Provisions,” explicit mention was made of the manner in which the epidemic had “disproportionately” affected minority communities.²⁵ This initiative was one of the first initiatives with significant funding from the federal government that aimed specifically to improve the health outcomes of racial minorities in light of the epidemic.

Conclusion

It is evident that Americans perceived Africans’ suffering from HIV/AIDS as insignificant and inferior which led to a delayed response to the epidemic laden with neo-colonialist features. The perception of African-Americans living with the disease as insignificant and worthy of blame for their diagnosis led to a small and delayed response to the epidemic ravaging countless communities.

These groups were both viewed as insignificant and received a delayed governmental response to their suffering. I propose that this was due to the most salient shared characteristic of both populations: their race. The implications of race on health status can be seen in numerous disparities that persist to this day, including rates of HIV infection, heart disease, respiratory illness, and countless other illnesses that have higher prevalences in Black communities. As we can see from this analysis of the HIV epidemic, the manner in which those in power view the importance of one’s biological, social, and political well-being is bound to have grave consequences on one’s health outcomes. And this power is not only exerted over citizens through laws, regulations, and public policy. America’s status as a global superpower means that its extensive resources translate to great influence throughout the world. How the US behaves has implications for the manner in which other nations do as well. Therefore, a change in the assumptions held by Americans of Black people is crucial to addressing these disparities. This is a verifiably difficult task, as anti-blackness is woven into the foundation of almost every institution in this nation, but it is an important subject to address nonetheless.

Where the perceptions of Africans and African-Americans differed was that African-Americans were seen as guilty and deserving of their diagnoses while Africans were so helpless and inferior that they could not avoid it. I hypothesize that this divergence stems from what is perceived as the life experience of African-Americans versus Africans. Some believe that all citizens–white, Black, or otherwise–experience the same America. They believe that since African-Americans live in the same cities, eat the same foods, and may even go to the same schools as everybody else, their lives and opportunities must be similar. Continuing with this reasoning, if people living in the same America have different experiences, those marked by diseases, drug addictions, or struggles, it must be due to their actions. In other words, it was widely believed that African-Americans’ deviance in action from the white, middle-class American standard of normality is responsible for their plight. In contrast, those living in Africa, or, more pointedly, those living in the homogeneous, poverty-stricken, debilitated Africa that exists only in the imagination of the West, have a different experience entirely. In this imagination, lives devoid of the opportunity, the luxuries, and the experience available only through Western cultural ideals were deserving of not just compassion, but guidance. Whether or not they desired it was irrelevant.

Thus, from this study of the US response to the HIV/AIDS epidemic in two Black populations, we are able to see the large-scale effects that the perceptions of race, disease, and place have on government willingness to offer aid. It is the responsibility of government officers, public health officials, and lay citizens alike to pay attention to how disease is experienced differently by marginalized populations. Indeed, the past, current, and future epidemics devastating minority communities are only invisible to some.

Debbie Dada is a junior in Pierson College studying the History of Science, Medicine, and Public Health. She can be reached at debbie.dada@yale.edu.

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