THE POWER OF HUMAN TOUCH

By Nina Uzoigwe

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Caregiving across continental borders is a multifaceted experience within global healthcare. Arthur Kleinman, a professor of medical anthropology and cross-cultural psychiatry at Harvard University, stated in his publication in the Lancet that caregiving is “a deeply interpersonal, relational practice that resonates with the most troubling preoccupations of both carer and sufferer.”¹ In this relational practice, “the laying [of] hands, empathic witnessing, listening to the illness narrative, and providing moral solidarity through sustained engagement and responsibility” embody the moral face of caregiving that physicians are to provide the sufferer in order to intrinsically acknowledge their patient’s personhood.¹ Impartation of presence plays a significant role in how a person internalizes their illness and progresses through treatment. When comparing the healthcare systems of the United States and Europe, one can articulate how this human touch is promoted throughout their patient care in relation to the impact of their respective cultures. Across this continental border, this presence is extremely beneficial to those in need of easement and reassurance, but the implementation and the extent to which this is hindered is heavily impacted by societal standards defined within their relative cultures.

Over the course of these past two summers, I had the opportunity to shadow and experience this difference firsthand in two clinical locations, the first being Ospedale Niguarda. Ospedale Niguarda is a leading Italian general hospital in Milan, Italy, a city often referenced as the Italian capital of health.² With over 4,400 employed medical personnel and servicing approximately 2 million outpatients, it hosts all medical disciplines and technologies from the stages of diagnosis to rehabilitation, integrating all disciplinaries to ensure that the best healthcare is delivered to all its patients. 2 The second hospital visited was Unidade Local de Saúde de Matosinhos. Known as the first local hospital unit located in Matosinhos, Portugal, it was established by the Decree-Law n° 207/99, a law implemented to improve the performance of Portugal’s primary health care system through the unification of health services, and serves as a reference model for other healthcare providers.³ By providing primary and continuous healthcare to the population located within this municipality, it embodies and exemplifies the effective integration of local hospitals and related health centers into one single provider entity, creating the foundation for the construction of five local health units that followed it.⁴ While com

Entrance of Ospedale Niguarda

paring daily interactions between patients and doctors of these areas to those found within the healthcare system of the United States, the power of touch echoing throughout each case study’s respective patient experiences was captivating. As illustrated by the detailed experiences below, European healthcare systems prioritize human touch more than the US healthcare system, inherently improving the quality of care. This will be analyzed through the examples of Italy and Portugal, with the understanding that they are not representations of the entire European body, but rather distinct examples within this region.

To begin, when observing the value of human touch in U.S. hospitals, it is seen that it is extremely beneficial to those in need of ease and reassurance. In her 2018 New York Times article, “The Importance of Medical Touch,” patient Caitlin Kelly detailed the experience of receiving a breast biopsy where her left breast was exposed through a hole in a table.⁵ Kelly recounts that, “several hands reached for what’s normally a private and hidden body part and moved it with practiced ease.”⁵ Fearful of the procedure, she wept throughout the hour, but a nurse “gently patted [her] right shoulder

Nina Uzoigwe

and the male radiologist, seated to [her] left and working below [her], stroked [her] left wrist to comfort [her],” actions that she was ultimately extremely grateful for since she knew that this was otherwise a routine procedure.⁵ Most important to Kelly was that her anxiety was never downplayed or disregarded by medical personnel, which she was highly appreciative of.

Likewise, this level of compassion was demonstrated in care within Northern Italy, specifically in Ospedale Niguarda. While shadowing an oncology resident in this general hospital, I witnessed how this was offered to a 68-year-old male patient suffering from Stage IV bile duct cancer by a resident, genuinely fueled by his mission to deliver the best treatment available to all of his patients. He wanted to give this patient documentation to sign, detailing the terms of compliance for experimental research. When walking into his patient’s room, this resident sat down on the hospital bed and pulled up a table. The patient was shocked when the resident lay the papers in front of him in an orderly fashion while engaging in cordial conversation. The patient gradually became exuberant upon reception of this level of care and concern, becoming

more responsive to the details of the agreement as the resident reasoned through every clause. Each page was thoroughly explained with the patient’s concerns immediately addressed, and later that day, the demeanor of that patient was enlivened as he strolled up and down the halls in a pair of sunglasses, engaging in conversation with a huge smile on his face, despite his frail condition.

Finally, in Portugal, specifically in ULSM Matosinhos, this level of involvement was seen in its Emergency Department, where a 20-year-old female limped into the Day Surgery Room with a 10mm abscess behind her right knee. The area was blackened by inflammation and the slightest pressure applied to the site made her scream with tears rolling down her face. When the head surgeon of the department attempted to inject a local anesthetic to the abscess and drain the pus with a razor blade, the patient’s entire body trembled in anguish and sobs as she jolted away upon contact of the needle and blade with her leg. It wasn’t until another surgeon stroked and held her hand, turning her head away from the cause of her discomfort, that her wails became muffled and the procedure was executed. Although she later admitted that the pain was worse than giving birth to her child, she was able to endure her agony with the support of human touch. note that the culture defines the boundaries of this said connection, especially in the division seen in U.S. hospitals. According to Atul Gawande in the New Yorker article, “Why Doctors Hate Their Computers,” more than ninety percent of American hospitals computerized in the past decade and adopted software in the hopes of utilizing a single platform to perform everything health professionals need to become include but are not limited to recording and communicating medical observations, sending prescriptions, ordering tests and scans, viewing results, scheduling appointments, and sending insurance bills, all through one medium? Physicians and nurses have become swamped with overcoming the learning curves for using these devices, cutting down one-on-one time with their patients. Abraham Verghese, a physician who works in a Stanford center that is focused on the human aspects of medical care, stated that this implementation has given rise to what he coins to be the “i-patient,” an icon represented in the computer, and the real patient, the patient on the hospital bed? With attention partly averted to computer screens, medical personnel have inherently created this division during patient contact, specifically during diagnosis and treatment.

Having these two separate entities places less emphasis on using the display of human compassion and presence as a means of providing the best care. The focus has shifted towards making sure that the patient in the online interface has all the appropriate fields and documentation filled out, rather than engaging in conversation with the patient who arrived to be seen. In Verghese’s TEDGlobal 2011 speech, he explained that the i-patient typically receives “wonderful care all across America” while the real patient is often left to wonder, “Where is everyone? When are they going to come by and explain things to me? Who’s in charge?”⁷ Although the utilization of online electronic health records has provided efficient means for addressing the current necessity of sup

However, although human touch has this universal uplifting effect in the doctorstrates that there is a disjunction between the carer and the sufferer in America due The impartation of presence by the caregiver is a psychological necessity for a working doctor- patient relationship to take root. “ ” patient relationship, it is also essential to to the cultural drive to become economigreener, better, and faster. 6 These actions plying extensive resources, this demoncally better and faster, especially in a country that has a growing populace and is driven by financial incentives. According to a study completed by the Athenahealth, a private company that provides network-enabled services for healthcare in the United States, practices that “increased portal adoption rates by 20 [percent] or more over 12 months saw a median increase in patient pay yield of nearly five percent,” bettering overall clinical practice financial sustainability.⁸ Unfortunately, this creates a trade-off between doctorpatient contact and streamlined systems, building up walls of computers between these two entities at an alarming rate.

On the other hand, when referring to past experiences in European hospitals, the dynamic between the physician and patient was more centered on human touch, a defining aspect of both cultures. Within Ospedale Niguarda, the attending head physician in each of the eight departments I shadowed would often complete the department’s rounds with the head nurse, residents, and other doctors. They took the morning and early afternoon, after a short debrief, to meet and greet each patient and ask questions about the progression of their recovery, personally contributing to the quality of their care and taking notes on pieces of paper. It wasn’t until they were done with these rounds in the afternoon that each resident and doctor sat in a separate room full of computers to fill out medical observations and make official requests about treatments. Since 1991, Ospedale Niguarda developed and uses its own portal as an internal application that retrieves and gathers administrative patient specific data onto a centralized interface, “standardizing communication and process interaction between the different hospital units.”⁹ But many of the doctors explained that the focus of attending patients at their hospital beds was to hold a conversation and use their hands to do their job, clearly drawing a boundary between logging in patient care and giving their patients the attention they need.

Likewise, when reflecting on the healthcare system presented in Matosinhos, Portugal, specifically USLM, it is seen that this value is highly treasured as well. Along the same lines of U.S. hospitals and Niguarda Ospedale, the SNS Portal (Portal de Saúde) forms the core of several projects developed by Portugal’s National Health Service, the Serviço Nacional de Saúde (SNS). 10 However, this was created in hopes of “transforming the way information about health services and resources [is] shared” with Portugal’s people, centralizing the usage of the system for improving citizen oriented communication. 10 By redirecting the purpose of having this system to bettering the lives of those involved in healthcare, it is clearly demonstrated that more focus is placed by administration on creating a clear line of communication for its people, preserving an attribute of human touch in technological advancements. This thereby makes human compassion a priority.

This is so much so that when observing how integrated human touch is in day to day care of USLM, there are extra steps taken to enforce precautionary measures. In fact, when traveling from one in

Unidade Local de Saúde de Matosinhos (ULSM), a hospital in Portugal. patient room to another in the Department of General Surgery of ULSM Matosinhos, one would find a series of large yellow and red signs that signal to the medical personnel within this department that a gown and mask should be utilized upon entry to these rooms or curtained off areas, an addition that was not seen in the inpatient rooms in Ospedale Niguarda. With Portugal being one of the most friendliest countries towards residents worldwide according to Expat Insider (one of the world’s largest and most comprehensive surveys on life abroad), the Portugese culture comes across as extremely warm hearted, where a kiss on each cheek is a social normality. 11 It would therefore be understandable that these signs would be utilized as an extra layer of precaution in an environment where a warm embrace is considered second nature. Thus, it is seen that in the midst of adopting computer systems into the medical environment, human touch still has a cherished place in the European day to day practice.

One may argue that medical efficiencies have more value than the human touch exhibited during time spent in hospital rooms and should be prioritized because it increases accuracy in diagnosis and allows for more medical issues to be addressed. According to Richard Harris in “As Artificial Intelligence Moves Into Medicine, The Human Touch Could Be A Casualty,” depending on how automation is employed, “it can help reduce medical errors and potentially reduce the cost of care.” 12 Even Verghese, in this same article, expresses hopefulness that artificial intelligence can help to sort through the clues gathered during medical treatment since “medicine is messy.” 12 However, being present in a patient’s recovery matters a great deal, especially to a woman with breast cancer who, after finding one of the world’s best cancer centers, decided to go back to her private oncologist in a small town in Texas. To her, although it had a “beautiful facility, giant atrium, valet parking, a piano that played itself, a concierge that took you around from here to there,” they did not touch her breasts. 7 The doctors had no need since they scanned her inside out and understood the nature of her illness at a molecular level, but she yearned for her private oncologist who “everytime she went, examined both breasts including the axillary tail, examined her axilla carefully, examined her cervical region, her inguinal region, [and] did a thorough exam.”⁷ This level of attentiveness from her doctor was what she sought, as her concerns and her state of well-being were readily addressed with acknowledgement.⁷ Hence, even though a patient may long to be evaluated at the best level of care, doctors and nurses can’t merely be supplements to these machines. Although technological advancements make significant improvements in the competency of hospitals, these advancements cannot move forward and maintain their beneficence without recognizing that the impartation of presence by the caregiver is a psychological necessity for a working doctor-patient relationship to take root.

Nina Uzoigwe

In closing, then, human touch plays a significant role in how a person internalizes their illness and progresses with treatment. As demonstrated by the told experiences found within the United States, Italy, and Portugal, human touch is extremely valued and beneficial to those in need of reassurance because this act of presence has the power to reanimate and make the pathway for recovery appear less intimidating. It is important to note that their respective cultures define the boundaries of implementation for this said relationship because their values impact what’s carried over amidst technological advancements. Although efficiency and professional competency are essential components for caregiving, quality of care has much to do with the presence of a doctor-patient relationship as it does with technological, pharmaceutical and financial facets of healthcare. It is only when advancements found within these fields account for this treasured interaction in patient care that the healthcare system across all borders can truly be elevated.

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Nina Uzoigwe is a junior at Harvard College, concentrating in Bioengineering with a Secondary in Global Health and Health Policy. She is a proud EMT and Health Peer Advising Liaison who loves to serve her community.

Nina can be contacted at nuzoigwe@college. harvard.edu.

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WHO LIVES AND WHO DIES

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 wellbeing. 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 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. 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 lowincome 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 segrega

HIV is usually diagnosed by testing blood for the presence of antibodies to the virus.

tion 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 Flickr 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 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 “abstinenceuntil-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 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 can-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 the US Treasury to spestream white press made cific other states, rather than being funneled through other multilateral agencies such as the UN, World Bank, Medical articles throughout the 1980s supported the notion that the HIV-afflicted African-American population, just like “ very little mention of the Black experience. Reports during the mid1980s on the spread of the disease to heterosexor Global Fund. 15 This is notable because this the rest of the Black race, was made up of ual populations implied that it was to “white, type of funding scheme ‘diseased, debilitated and debauched’ people middle class, non-drug enables the US to “maximize its leverage with other countries through the funds” available while “multilateral venues do not possess the same top-down The African-American Epidemic using, sexually active people,” actively neglecting the fact that up to 90% of affected heterosexuals were Black or Hispanic. 1 As reporter Evelynn Hammonds who had ‘only themselves to blame.’ ” leverage.” 16 Therefore, by utilizing this The American perception of HIV+ Afrinoted in a 1986 article, “the vast dispropor

to be eligible for foreign funding. 15 This

to become infected. 1 Regardless, the maintion 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 AfricanAmerican 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. AfricanAmericans 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 AfricanAmericans. 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 druginfluenced 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 citi“ By 1987, the average life expectancy in America of a Black person diagnosed with

AIDS was 19 weeks while that of a white and inappropriately small due to the aforementioned perceptions of the suffering patients’ insignificance and deservingness person was two years. ” 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 lowincome and uninsured populations as a lastresort 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, AfricanAmerican, 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 zens was delayed

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Grave of Ryan White, a young Caucasian hemophliac patient diagnosed with HIV, after whom the Ryan White CARE Act was named. 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 “AfricanAmericans and Hispanics accounted

for 43% of cumulative AIDS cases” and by 1994, 56% of new cases were in the AfricanAmerican 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 com

It was not until 1999 that the American government had an initiative specifically aiming to increase the HIV screening and treatment rates of African-Americans.

munities. 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 wellbeing 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 expeFlickr riences, 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.

www Debbie Dada '21 is a History of Science, Medicine and Public Health major from Toronto, Canada.

You can reach her at debbie.dada@yale.edu