Chapter Title: HIV/AIDS: The Experience of the

Book Title: Epidemics and Society Book Subtitle: From the Black Death to the Present Book Author(s): FRANK M. SNOWDEN Published by: Yale University Press Stable URL: https://www.jstor.org/stable/j.ctvqc6gg5.25

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This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms chapter 20 HIV/AIDS The Experience of the United States

The AIDS epidemic in South Africa constitutes the extreme instance of a “generalized” epidemic. Now we turn to the epidemic in the United States, which provides the major example of a “concentrated” epidemic. It began in the 1980s among marginalized and high-risk groups—white gay males, intravenous drug users, and hemophiliacs. This example is especially im- portant in part because the disease was first identified in the United States, and many of the mechanisms of its etiology, epidemiology, symptomatol- ogy, and treatment were unraveled there.

Origins in the United States Officially, the AIDS epidemic in the United States began in 1981, which was the year when the disease was first recognized and given a name. Silently, however, HIV was almost certainly present from 1976 and probably from the 1960s. At that stage it claimed the lives of people whose deaths were attrib- uted to other causes. The outbreak of HIV in North America derived from the networks of transmission that had begun in central and western Africa. As a result of globalization, medical events on the two continents were tightly linked. In The Communist Manifesto (1849) Karl Marx wrote prophetically of the “need of a constantly expanding market” to “nestle everywhere, settle ev-

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This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms 430 HIV/AIDS: The United States erywhere, establish connextions everywhere.” This meant that “new wants [required] for their satisfaction the products of distant lands and climes. In place of the old local and national seclusion and self-sufficiency, we have intercourse in every direction, universal inter-dependence of nations.”1 Since Marx’s pamphlet was structured as a Gothic horror tale, he imagined that the new global world would produce unintended consequences, some of which would prove uncontrollable. Thus his metaphor to describe the advanced industrial world, “a society that has conjured up such gigantic means of production,” was that of a sorcerer “who is no longer able to con- trol the powers of the nether world whom he has called up by his spells.”2 The airplane and the cruise ship completed the process he had envisaged. A link between Central Africa and the Americas was forged at the time of the Belgian Congo’s independence in 1960. Thousands of Haitian professionals took jobs in the Congo, and in time many of them repatriated, some carrying the virus of a newly emerging disease in their bloodstreams. Haiti in turn had extensive links with the United States. One was provided by thousands of refugees who sought political asylum from the brutal dicta- torship of François “Papa Doc” Duvalier and his infamous paramilitary Tonton Macoutes. Duvalier seized power in 1957 and was succeeded by his equally oppressive son Jean-Claude “Baby Doc” Duvalier. Annually over the three decades of Duvalier rule, seven thousand Haitians arrived as perma- nent immigrants to the United States and twenty thousand more as holders of temporary visas. In addition, significant but unknowable numbers of des- perate “boat people” landed on the shores of Florida. At the same time, waves of American holiday-makers visited Port au Prince, which enjoyed great notoriety as a major destination for “sexual tourism.” All of these movements of people—between the Congo and Haiti, and between Haiti and the United States—were perfect pathways for a deadly but still unknown sexually transmitted disease. Popular mythology identified a “patient zero”—the French Canadian flight attendant Gaëtan Dugas—who was vilified for a time as the person responsible for the onset of the North American AIDS epidemic. Dugas at- tracted attention because of his lifestyle, which was defiantly flamboyant. Crisscrossing the continent by air, he boasted of having hundreds of sexual partners a year. When challenged by health officials for knowingly present- ing a serious risk to others, he infamously declared that is was none of their “goddam business,” claiming it was his right to do what he wanted with his body. Dugas undoubtedly made some small contribution to the epidemic,

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms HIV/AIDS: The United States 431 but his role has been dramatically exaggerated. He played a tiny part in an unfolding catastrophe.

First Recognized Cases The conventional starting date of the AIDS epidemic in the United States is June 5, 1981, when the CDC published a troubling notice in its Morbidity and Mortality Weekly Report (MMWR). What the CDC announced was a clus- ter of opportunistic infections that normally occurred only in rare cases of immunosuppression—pneumocystis pneumonia and Kaposi’s sarcoma. The fact that both occurred in a network of five young gay men in was striking, and it was soon followed by news of similar clusters in New York City and . By July there were forty cases of Kaposi’s sar- coma among the gay communities of those two cities, and by the end of the year 121 men had died of the new disease. HIV had been present in Africa since at least the 1950s, and almost cer- tainly by the 1970s in the United States. But the MMWR in 1981 provided the first official acknowledgment of its presence and its devastating potential for public health. The epidemiological pattern presented by the MMWR in- stantly enabled some public health officials, such as the CDC epidemiologist Don Francis, to understand that an immunosuppressive virus was responsi- ble for the clusters of pneumocystis pneumonia and Kaposi’s sarcoma and to fear that a public health disaster was already under way. Francis at the time was working on the development of a hepatitis , and he had a long- term research interest in retroviruses. On reading the MMWR piece, he in- stantly recognized the implication: a still unknown retrovirus was responsible for the immunosuppression that predisposed people to rare cancers and op- portunistic infections. Indeed, just the year before—in 1980—Dr. of the National Cancer Institute had shown that a retrovirus he dubbed human T-cell lymphotropic virus (HTLV) caused a type of leukemia com- mon in Japan. HTLV was contagious, and it had a frighteningly long incuba- tion period. Immediately Francis called for research to isolate the pathogen responsible. Meanwhile, members of the gay community had also followed events and understood their meaning. Michael Callen and Richard Berkowitz, who lived in New York and had already fallen ill, published a pamphlet in 1982, How to Have Sex in an Epidemic: One Approach. This booklet promoted con- dom use and is perhaps the earliest known call for safe sex.

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Biomedical Technology Ironically, another factor responsible for the spread of HIV/AIDS in the United States was biomedicine itself—through its hypodermic needles, blood banks, and invasive surgical techniques. One of the first cases retrospectively diagnosed as AIDS was the Danish surgeon Grethe Rask, who had gone to work in the Congo in 1964. She worked for years in a rural hospital that lacked surgical gloves, so she did surgery bare-handed. Rask fell ill in 1976, was repatriated under emergency conditions, and died in 1977 of pneumo- cystis pneumonia. According to friends, she had no possible route of infec- tion other than performing surgery, as she was celibate and spent her whole life working. Another iatrogenic pathway, that is, through medical treatment or pro- cedures, for the transmission of HIV was unregulated blood banks. Hemo- philiacs were one of the first groups reported to have the new disease because they needed the blood-clotting protein Factor VIII to prevent bleeding. At the time, Factor VIII was concentrated from pooled serum from many units of blood, some of which were donated commercially and not sub- ject to screening. By 1984, 50 percent of hemophiliacs in the country were HIV-positive. And finally, of course, the tools of modern medicine do not stay locked safely in hospitals and clinics. Syringes made their way onto the streets for the use of intravenous drug users, who soon became a high-risk group for HIV.

Early Testing and Naming The alarm sounded by Don Francis fell mostly on deaf ears, though a few scientists did pay attention. Gallo at the National Cancer Institute in par- ticular was convinced that Francis was right, and he dedicated his lab to the hunt for the new pathogen. Similarly, of the Pasteur Insti- tute in France and Jay Levy in San Francisco set out to isolate a virus from the mysteriously immunosuppressed patients. The first breakthroughs occurred in near-record time in two separate laboratories. Gallo and Montagnier independently and almost simultane- ously announced in 1984 that they had identified the virus responsible, and the next year they applied for patents for an enzyme-linked immunosorbent assay (ELISA) that tested for HIV. The result was another unedifying scien- tific and national rivalry between Gallo and Montagnier of the kind we al- ready know from the enmities dividing Pasteur and Koch, and Ross and

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Grassi. A settlement reached in 1987 named them codiscoverers and divided the royalties from the blood test. The Nobel Prize, however, went exclusively to Montagnier in 2008. The ELISA developed by Gallo and Montagnier was the first diagnos- tic test to determine HIV by detecting the presence of antibodies, and it re- mains the most common means to screen for HIV infection. Its development was a landmark event because it enabled doctors and health officials to screen high-risk populations to determine who was infected. As a result, they pos- sessed a tool for containing the disaster by identifying carriers and their con- tacts and thereby interrupting transmission. The assay also made it possible to make blood banks safe by screening donors and therefore preventing transmission to hemophiliacs and recipients of blood transfusions. A different test—the CD4 cell count—permits physicians to follow the progress of the disease. As we saw in the last chapter, HIV targets CD4 cells in the blood. Researchers discovered that the progress of the disease could be followed by counting CD4 cells and tracking their destruction. When CD4 counts are less than 200 per cubic millimeter, the patient is considered to be immunodeficient and unable to fight off opportunistic infections. In 1982 the new disease was named gay-related immune deficiency (GRID), and it was derisively called the “gay plague.” Both terms were clearly inaccurate in view of the epidemiological pattern of the disease in Africa, where it had become prevalent in the general population and was primarily transmitted heterosexually. But even in the United States, health authori- ties already knew that approximately half of those affected were not gay. Since the disease in North America affected hemophiliacs, heroin users, Hai- tian immigrants, and homosexuals, it gave rise to the alternative term of “the 4H disease.” Then in 1984 the causative pathogen was renamed HIV, the human immunodeficiency virus.

Stigma Two other features of the North American epidemic were vitally important although less obvious. The first of these was the presence of stigma. Here it is important to remember the climate of bigotry and oppression that char- acterized the mid-twentieth century. Internationally, Nazi Germany was the extreme case, as homosexuals there were forced to wear pink triangles and were sent to concentration camps for destruction along with Jews, commu- nists, disabled people, and gypsies. In Britain the poignant case of Alan Tur- ing reminds us of the toxicity of widely prevailing homophobic attitudes.

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Turing was the mathematical genius who helped crack the codes of the Nazi Enigma machine during World War II and was thereby responsible for sav- ing the lives of untold numbers of Allied troops. Instead of being honored by his country, he was arrested, tried, and convicted under Britain’s antiho- mosexual “public indecency” laws in 1952. In 1954 he committed suicide. Cold War America was of course swept by a wave of rabid anticom- munism that provided fertile terrain for witch hunts by Senator Joseph McCarthy (1908–1957), FBI director J. Edgar Hoover (1895–1972), and “Red squads” in municipal police departments. But a “lavender panic” targeting homosexuals paralleled the “Red scare.” Indeed, McCarthy and Hoover regarded communists and homosexuals as intertwined threats to US se- curity. In the cosmology of the American political right, homosexuals were akin to communists—both were secretive, untrustworthy, eager to make converts, and open to blackmail. Furthermore, the two threats were often embodied in the same person. Leading figures, or former leaders, in the communist movement, including the later repentant Whittaker Chambers, had homosexual relationships. At the same time the founder of the prin- cipal gay rights group of the 1950s and 1960s—the Mattachine Society— was the communist Harry Hay. Further fueling such anxieties, the reports on male and female sexual behavior by Alfred Kinsey (1894–1956) revealed the unexpected prevalence of homosexual behavior throughout Ameri- can society, while Red baiters warned that homosexuals had thoroughly infiltrated the civil service and that they owed allegiance to a shadowy “Homosexual International” that operated in league with the Communist International. Motivated by such fears, vice squads joined Red squads in major cities to entrap homosexual men and arrest them, applying laws that made sod- omy illegal in every state. The usual punishment was not jail but public hu- miliation and the loss of employment. In a similar fashion, the federal government purged homosexual men and women from its bureaucracy, and gay people were not allowed to immigrate to the United States. Openly gay people were also subjected to violent attacks from the public. In this threatening environment gay people moved to places where they believed they would be accepted or at least tolerated, particularly in the an- onymity of cities. Gay communities sprang up in particular in New York, Washington, DC, and San Francisco. Author wrote that “the promise of freedom had fueled the greatest exodus of immigrants to San Francisco since the gold rush. Between 1969 and 1973, at least 9,000 gay men moved to San Francisco followed by 20,000 between 1974 and 1978. By 1980

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms HIV/AIDS: The United States 435 about 5,000 homosexual men were moving to the Golden Gate every year. This immigration now made for a city in which two in five adult males were openly gay.”3 In these centers gay communities were socially active and politically cohesive. The gay immigrants were thrilled to come out of the closet and form and attend gay churches, bars, bathhouses, community centers, medi- cal clinics, and choirs. In 1977 Harvey Milk won election to San Francisco’s Board of Supervisors—the first openly gay person to be elected to public of- fice in . In a backlash of hatred, however, he was assassinated in City Hall by his fellow supervisor Dan White.

Transmission One aspect of urban gay culture, however, provided a perfect avenue for sex- ually transmitted diseases. Gay men had long been accustomed to the co- vert and anonymous expression of their sexuality, and for many, bathhouses provided enormous new sexual freedom. Sexual promiscuity also increased the opportunity for one to contract sexually transmitted diseases, includ- ing , giardia, gonorrhea, syphilis, and now HIV. Indeed, preex- isting sexually transmitted diseases enormously increased the probability of transmitting HIV during sex, because the lesions associated with them breach the body’s outermost defenses and allow HIV entry into the blood- stream of the infected person’s partner. A second, specifically American feature of the transmission of HIV was put forward by Randy Shilts in his 1987 book : Poli- tics , People, and the AIDS Epidemic. Shilts recognized that in order to ex- plain the epidemiology of the epidemic in the United States, one needs to regard HIV as present in the US population well before its identification in 1981. He argues that the bicentennial celebrations of July 1976 offered the dis- ease an important opportunity. Tall ships came to New York from all over the world, and the city witnessed a frenzy of partying. Later public health studies demonstrated that the first US babies with congenital HIV/AIDS were born nine months later. In summation, the preconditions for the emergence of the HIV/AIDS epidemic in the 1980s included globalization, invasive modern medical tech- nology, and the effects of homophobia. An additional factor that propelled the epidemic was a prolonged period during which the political leadership of the country refused to confront the gathering public health emergency, just as was the case in South Africa.

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“The Wrath of an Angry God” and AIDS Education

The early identification of HIV as a “gay plague” among homosexuals helped to define it not as a disease but as a sin. Many conservative Protestant evan- gelicals and Catholics played a leading role in this regard, associating gays with treason, believing that homosexuality was a mental illness, and sup- porting laws in every state that made homosexual practices illegal. For those enthralled by the fears of the Cold War, the terrifying vision of a secret fraternity of proselytizing gays who plotted to betray their country to the Soviets was very real. In their view, gays stood poised to overthrow the nation in league with communists. Against this background, the onset of a “gay plague” revived the old- est of all interpretations of epidemic diseases—that they are the “wages of sin” meted out by a wrathful God. Recalling biblical strictures about the evil of “sodomites,” some conservative religious leaders took the lead in pro- pounding this view. Jerry Falwell, founder of the Moral Majority, gained instant notoriety by famously declaring that AIDS was God’s punishment not just for homosexuals, but for a society that tolerated homosexuality—a view that Billy Graham and televangelist Pat Robertson echoed. Popular extremist religious works dealing with the disease in the 1980s similarly rejected both science and compassion in order to blame the vic- tims of disease and define their suffering as divine punishment. As Anthony Petro explains in his 2015 book After the Wrath of God: AIDS, Sexuality, and American Religion, such Christians went beyond the biomedical understand- ing of HIV as a viral affliction to confront their personal conviction that it was instead a moral scourge. A corollary of this view was that public health measures to confront the epidemic could be palliatives only. The real means to defeat the disease were to implement the moral preferences of the writers— abstinence until marriage and faithfulness within a heterosexual, monoga- mous relationship thereafter. There was an alternative Christian view, however. In cities where the disease first claimed large numbers of victims—San Francisco, Los Ange- les, Chicago, and New York—clergy members were confronted with the suf- ferers and with the clergy’s Christian duty to minister to “sinners.” This was a view of the disease that called for the exercise of charity and compas- sion. Protestant clergyman William Sloane Coffin was a well-known advo- cate of this position. Such analyses were scattered, however, and they were outweighed by the deafening silence of mainstream Christianity during the early years of the HIV/AIDS pandemic and the drumbeat of the Christian

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Right, which asserted a claim to define AIDS and the religious and ethical response to it. With HIV/AIDS understood by so many as a moral disease, it is not surprising that during the crucial early 1980s when AIDS gained a foothold in the United States, the Republican leadership under President was unenthusiastic about taking robust public health measures against the HIV emergency. Thus, like P. W. Botha in South Africa, Reagan was preoccupied with winning the Cold War and protecting Americans from the Soviet “Evil Empire.” A disease that, in Reagan’s view, affected only marginal and despised groups could make little claim to his attention. Furthermore, the reasoning that “sinful behavior” caused the epidemic led logically to the conclusion that the proper remedy was behavioral rather than medical. The onus was perceived to be on the “sodomites” to end the disease by returning to righteous American values. The Reagan Administra- tion held that a moral stand was more important—and more effective—than scientific public health, which would not attack the problem at its roots. The conflict between the biomedical and moral interpretations of AIDS appeared most clearly in what is known as the 1987 Helms Amend- ment. After seeing a comic book that showed two men having safe sex, Sena- tor Jesse Helms said on the Senate floor: “This subject matter is so obscene, so revolting, it is difficult for me to stand here and talk about it. . . . ​I may throw up. This senator is not a goody-goody two-shoes. I’ve lived a long time . . . ​but every Christian ethic cries out for me to do something. I call a spade a spade, a perverted human being a perverted human being.”4 Helms then sponsored the amendment banning the use of federal funds in support of HIV/AIDS prevention and education on the grounds that teaching “safe sex” and condom use meant promoting homosexual activities in violation of antisodomy laws and moral values. The result was to prevent the federal government from taking action to defend public health. The official onset of the American HIV/AIDS epidemic in 1981 coin- cided with Reagan’s assumption of office, and six years of unbroken silence regarding the deadly disease followed. At a time that required strong lead- ership to contain a public health crisis, Reagan chose instead to ignore the insistent warnings of the CDC and gay rights groups concerning the need to prevent further suffering and death. Far from acting vigorously to com- bat AIDS, he slashed federal budgets. It was not until May 31, 1987—after 20,849 Americans had died of AIDS and the disease had spread to all fifty states, Puerto Rico, the District of Columbia, and the Virgin Islands—that he first publicly mentioned AIDS and, then only reluctantly and under intense

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pressure, asked his Surgeon General, Dr. C. Everett Koop, to prepare a report on the disease. In a manner that the president had not anticipated, Koop prepared an analysis of the epidemic that was thorough, explicit, and nonjudgmental. The brochure, Understanding AIDS (1988), contributed significantly to the public comprehension of the crisis, especially since Koop decided to send the brochure to all 107 million households in the United States—the largest public health mailing ever undertaken in the country. Rumor has it that Reagan himself did not find out about the mailing until he received his own copy in the post. Unfortunately, Koop was subsequently gagged by the administration. He had urged the CDC and the Department of Health and Human Services to produce educational material discussing HIV transmission in an explicit manner. He advocated naming the practices, such as anal intercourse, that heightened the risk of infection and those, such as condom use, that dimin- ished it. But Koop’s nemesis and bureaucratic superior, Secretary of Educa- tion William J. Bennett, ideologized this vital issue of public health. In Bennett’s view, a blunt and frank policy was unconscionable. He argued that for the federal government to produce materials explicitly mentioning sodomy and condom use outside of wedlock was to legitimize them as mor-

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Figure 20.1. The America Responds to AIDS campaign from 1987 to 1996 included posters in its efforts to get out the message that everyone could be at risk from HIV/AIDS, not just gay white men or intravenous drug users, and how important it was to face the epidemic and to act on education and prevention. Published by the Centers for Disease Control. (US National Library of Medicine.) ally acceptable. In the estimation of Congressman Barney Frank (who him- self came out in 1987 as a gay man), Bennett “and some others” seemed to be inculcating values—“in fact, Mr. Bennett’s values”—and believed that education which suggests behaviors “that Mr. Bennett doesn’t approve of . . . ​would be wrong.”5 As a result, the federal government produced informational material that was sanitized and intentionally vague, misleading, and unhelpful. As Congress learned in hearings in 1987, generic warnings about “intimate sex- ual activity” and the “exchange of bodily fluids” entirely failed to “differen- tiate between the potential riskiness of anal and vaginal intercourse and the apparent safety of, say, mutual masturbation.”6 “Dirty” words and “dirty” practices could not be named. In the early years of the epidemic, the nature of the public education campaign was especially important (fig. 20.1). As the National Academy of Sciences noted in the spring of 1987, there was no vaccination to prevent the disease, nor effective medications to treat sufferers. The only tools available to stem the epidemic were education and the changes in behavior that would, it was hoped, result. Unfortunately, as the academy explained to Congress, “The present level of AIDS-related education is woefully inade- quate. It must be vastly expanded and diversified.” It was imperative to “fill

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms 440 HIV/AIDS: The United States the void in the federal efforts.”7 As a representative of the National Acad- emy of Sciences stressed,

We can create an environment in which it is all right to talk about sex, and . . . ​to talk about behaviors that will prevent the trans- mission of HIV. That’s the kind of leadership that I think the Fed- eral Government can give. . . . We cannot proscribe certain activities, and we cannot write off certain people. We must bring the education to all people who are at high risk, recognizing that there are differences in sexual behavior and sexual orientation. We must be helpful to the peo- ple . . . ​we’re serving, not condemning of certain actions.8

The failure of political leadership with regard to the gathering epidemic was not confined to the national level or to the Republican Party. In New York City, the gay activist Larry Kramer, author of the play The Normal Heart and founder of the activist AIDS Coalition to Unleash Power (ACT UP), re- peatedly castigated the Democratic administration of Mayor Edward Koch for its refusal to organize public health campaigns in the city. In Kramer’s view, the motivation for Koch’s inaction was different from that of Reagan, Falwell, and Helms. Kramer regarded Mayor Koch as a victim of homophobia— that is, Kramer viewed Koch as a closeted homosexual who was paralyzed by self-loathing and by a morbid fear of being “outed” if he rallied to the defense of the gay population. A progressive on many issues, Koch chose silence and inaction with regard to HIV/AIDS. It was tragic that he did so at the very center of the epidemic. In the view of the physician David Fraser, president of Swarthmore College and member of the Institute of Medicine, San Francisco was the only city where adequate measures were undertaken to educate the public and where appropriate behavioral changes—involving condom use and reduc- tion in the number of sexual partners—had followed. Credit for these ad- vances, however, was not due to the federal government. The list of those engaged in the intense local educational campaign included instead the city Board of Supervisors under Mayor Dianne Feinstein; the legislature of the state of California, which subsidized the city’s efforts; NGOs such as the Red Cross; and the city’s highly organized gay community. In the absence of political leadership from the top, two poignant me- dia events belatedly triggered a national discussion. The first occurred on July 25, 1985, when the publicist for movie star Rock Hudson announced that

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Hudson was suffering from AIDS. This created a shock wave because of Hud- son’s standing as one of Hollywood’s best-known romantic male lead ac- tors. Just over two months later, in early October, Hudson died at age fifty-nine—the first celebrity to perish of AIDS in full public knowledge. His death caused the media and the public to undertake a painful reassessment of the meaning of AIDS and the nature of the stigma attached to it. Reagan himself was Hudson’s friend, and he later admitted that the actor’s plight caused him to rethink his moral condemnation of homosexuality. Then in 1991, Earvin “Magic” Johnson, a darling of the American sport- ing public and one of the best basketball players of all time, announced that he was HIV-positive. Johnson played point guard for the Los Angeles Lak- ers in the National Basketball Association (NBA) and was twelve times an NBA all-star and three times the NBA’s most valuable player. He had also played as a member of the “Dream Team” that won an Olympic gold medal for the US in 1992, and he was elected to the Basketball Hall of Fame in 2002. His nationally televised press conference on November 7, 1991, followed by a series of public appearances, stunned the American press and the public. In 2004 ESPN called Johnson’s declaration one of the seven most in- fluential media events of the previous quarter century. What he said was ex- traordinary in terms of popular HIV awareness because he told the nation that he was exclusively heterosexual and had never been an intravenous drug user. He also shattered conventional stereotypes by being an African Amer- ican at a time when the public perceived AIDS to be a disease of white gay males. He repeatedly said, “It can happen to anybody, even me.” Crucially, he followed his announcement by taking on the role of spokesman for an alternative view of the disease.

A Complex Epidemic While the federal government and the city of New York chose inaction and silence during the critical early years of HIV, the epidemiological pattern of the disease altered profoundly. In the early 1980s HIV spread as a “concen- trated” epidemic among marginalized social groups at high risk. By the mid- dle of the decade, however, the concentrated epidemic was first paralleled and then overtaken by a second epidemic pattern—that of a disease trans- mitted heterosexually among the general population of African Americans. Thus as the 1980s unfolded, the United States experienced a “complex” epi- demic exhibiting two different patterns: a concentrated epidemic among high-risk social groups and a general epidemic among the population of

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms 442 HIV/AIDS: The United States ethnic minorities—above all African Americans but also Latinos and Na- tive Americans. By 1993 the gathering disaster among African Americans was clearly documented: approximately 360,000 AIDS cases had been reported cumu- latively since the start of the epidemic, and of these, 32 percent were Afri- can Americans, who represented just 12 percent of the population. The rate of AIDS was fifteen times higher among African American females than among white females, and five times higher among black males than white. Moreover, as the epidemic gathered momentum, the disproportionate rep- resentation of the black population among the victims grew increasingly ap- parent. In 2002, 42,000 Americans were diagnosed with HIV, and of them 21,000, or 50 percent, were African American. Given African American de- mographic features, the epidemic among the general population of blacks was geographically specific: it occurred in cities in the Northeast, the South, and the West Coast. By 2003, the prevalence rate of HIV among the overall African Amer- ican population reached 5 percent, when 1 percent was the standard indica- tion for a “generalized severe epidemic.” HIV among African Americans had attained levels comparable to those of sub-Saharan Africa. What accounted for this discrepancy between blacks and whites? Pub- lic health officials had a ready answer. In the words of the associate director of the District of Columbia office of the CDC, “Although we all know that race and ethnicity are not risk factors themselves for HIV transmission, they are markers for underlying social, economic, and cultural factors that affect health.”9 What were those factors?

Poverty The CDC reported in 2003: “Studies have found a direct relationship between higher AIDS incidence and lower income. A variety of socioeconomic prob- lems associated with poverty directly or indirectly increase HIV risks, in- cluding limited access to quality health care and HIV prevention education.”10 Economic disadvantage was a major feature of the African American pop- ulation, and the CDC reported that one in four blacks lived in poverty. This feature of African American life was a major driver of HIV transmission not simply because malnourishment in general lowers resistance, but also be- cause it increases the specific risks for sexually transmitted diseases. The CDC concluded in a 2009 report that “HIV prevalence rates in urban pov- erty areas were inversely related to annual household income: the lower the

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms HIV/AIDS: The United States 443 income, the higher the HIV prevalence rate. This inverse relationship be- tween HIV prevalence and socioeconomic status (SES) was observed for all SES metrics examined (education, annual household income, poverty level, employment, and homeless status).”11 A further effect of poverty was less immediately visible. An important feature of the gay white communities in New York and San Francisco was that they were educated, affluent, and highly organized. As a result, organi- zations representing them successfully promoted medical awareness and sex education, thereby slowing transmission. By contrast, the African Ameri- can community was relatively impoverished, poorly educated, and unorga- nized. As the US Congress investigated the HIV epidemic, representatives of the African American community repeatedly noted that their churches, members of Congress, and authority figures kept silent about HIV/AIDS. Finally, poverty did not just increase the risk of contracting HIV; it was also correlated with rapid progression from HIV-positive status to active AIDS. Among those infected individuals who progressed to active AIDS within three years, African Americans of low socioeconomic standing were overrepresented.

Family Disintegration An important and lasting legacy of slavery was its impact on the African American family, which was often broken apart and its members sold. His- torically, therefore, the tendency was for the black family to be headed by a female, and the generations since emancipation provided little in the way of countervailing forces. On the contrary, migration, unemployment, and incar- ceration provided additional fractures and absences and made the position of black males insecure. By the time of the onset of HIV, fully one-third of Afri- can American families with children were maintained by the mother alone. Here the clearest influence is that of incarceration. A decisive factor was the “war on drugs,” which introduced a rigid policy of criminalization and mandatory prison sentences for drug possession and use. Largely on the strength of this “get tough on crime” policy, the prison population of the United States more than quadrupled between 1980 and 2008, from half a mil- lion to 2.3 million, and the US became the world’s foremost jailor, with 25 percent of the world’s prisoners despite just 5 percent of the world’s population. In this enormous lockup, African Americans were disproportionately affected. Representing 12 percent of the U.S. population, African Americans

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms 444 HIV/AIDS: The United States accounted for 48 percent of arrests for drug offenses. Incarcerated at a rate six times that of whites, they constituted 1 million of the total of 2.3 million prisoners in the country. According to the NAACP, “If current trends con- tinue, one in three African-American males born today can expect to spend time in prison during his lifetime.”12 The war on drugs greatly magnified the disparities among ethnic and racial groups because African Americans are imprisoned at ten times the rate of whites for drug offenses, and they receive much longer sentences. In terms of the HIV/AIDS epidemic, such high—even unique—levels of imprisonment had a major impact. Most obviously, the incarceration of such large numbers of young men led to the spread of multiple concurrent sexual relationships, which are a major risk factor for all involved in the sex- ual network. Concurrent partnerships also promoted HIV indirectly by encouraging the transmission of other sexually transmitted disease (STDs) such as chancre, gonorrhea, herpes, and syphilis, which were already over- represented among African Americans and which can cause abrasions that facilitate the transmission of HIV. In 2003 the CDC observed:

African Americans . . . ​have the highest STD rates in the nation. Compared to whites, African Americans are 24 times more likely to have gonorrhea and 8 times more likely to have syphilis. . . . ​ The presence of certain STDs can increase the chances of con- tracting HIV by three to five-fold. Similarly, because co-infection with HIV and another STD can cause increased HIV shedding, a person who is co-infected has a greater chance of spreading HIV to others.13

Furthermore, once imprisoned, African American men were more likely to engage in homosexual acts and to share needles and other sharp objects for injecting drugs or tattooing. Sex in prison was also never safe sex because, taking the religious high ground that homosexual acts are immoral, correctional facilities did not distribute condoms. Finally, in a vicious down- ward spiral, imprisonment enhanced the unraveling of family relationships and exacerbated the preexisting problems of poverty and unemployment that were already rampant in the black community. Finally, the last stage in the disintegration of a family—homelessness— is a problem above all of inner-city African Americans. The homeless have high rates of HIV infection because their condition correlates with high-risk

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms HIV/AIDS: The United States 445 behaviors of many kinds, such as exchanging sexual favors for shelter, drugs, or food; lack of sex education; limited access to health care; malnutrition; and a tendency to self-medicate with drugs and alcohol and then to engage in risky sexual practices.

Cultural Factors Culture plays a major role in the vulnerability of the African American pop- ulation to HIV. The legacy of a long history of oppression and societal ne- glect made it difficult for blacks to believe the messages of the CDC and the Department of Health and Human Services that federal, state, and local of- ficials were suddenly interested in their well-being. On the contrary, the results of a 1999 survey indicated that half of the black population regarded it as either “likely” or “possible” that the government welcomed the AIDS epidemic as a means of ridding itself of a troublesome surplus population. The lives of black welfare recipients and drug users were expendable. This semiconspiratorial view seemed all the more plausible in the wake of the Tuskegee Syphilis Study of 1932–1972, which involved the systematic abuse of the trust of impoverished black syphilis patients. Furthermore, the educational and governmental messages were often couched in terms that made them incomprehensible to and deeply counter- productive for the black community. Raquel Whiting, a twenty-two-year- old African American woman who worked as a policy analyst for the National Pediatric HIV Resources Center, carefully elaborated on this point in her testimony before Congress in 1993. On the basis of her experience working with young African Americans, she had learned that they did not protect themselves during sex and that one of the reasons was that the edu- cational materials had a misleading message. Posters, magazine articles, brochures, television ads—all conveyed the prevailing social construction of HIV/AIDS that it was a disease of educated, middle-class, white homo- sexuals and of intravenous drug users. In Whiting’s words, even though HIV/ AIDS had become predominantly an affliction of the black population, “The media and larger society continue to portray images of gay white men as the face of HIV. People of color regardless of their sexual orientation are absent from the picture.”14 Therefore, black young people concluded that they were not at risk. A further problem, Whiting reported, was that the educational cam- paign against AIDS relied on scare tactics with slogans such as “Get High,

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms 446 HIV/AIDS: The United States

Get Stupid, Get AIDS.” In inner-city African American neighborhoods where gang violence, drugs, and shootings were integral parts of daily life, such slogans carried no conviction and elicited mirth rather than behavioral change. Finally, in her analysis, the anti-AIDS campaign failed the black com- munity in general and black young people who were most at risk in partic- ular because the message concentrated on schools. For a community with high numbers of dropouts and absentees, such an approach often failed to reach those who most needed the message. As she stated starkly, “The pre- vention message is not reaching this group.” How badly the message mis- fired became apparent in Whiting’s experience with female gang members in inner-city Philadelphia. There, it was an accepted practice to sleep with male gang leaders known to be HIV-positive to demonstrate that the stron- gest and fittest young women would not catch the disease, giving them re- spect among their peers. Until the message, the messenger, and the location changed, Whiting said, “Young people of African-American descent will not protect themselves.”15

Conclusion As it assessed the state of HIV/AIDS in its June 15, 2018, issue, the journal Science summarized the epidemic under the revealing title “Far from Over.” As the disease became overwhelmingly a disease of African Americans and Latinos, it also followed a different geographical pattern, with its heaviest burden falling on the South and the District of Columbia. Most worrying is Florida, which suffers, according to Science, from a “startlingly high HIV infection rate” and where Miami is the “epicenter of HIV/AIDS in the United States with the highest new infection rate per capita of any U.S. city: 47 per 100,000 . . . , more than twice as many as San Francisco, New York City, or Los Angeles.”16 Miami, Fort Lauderdale, Jacksonville, Orlando, and the state’s other urban centers present AIDS campaigners with a compendium of all the fac- tors driving the contemporary US epidemic: a large and constant influx of immigrants; a sizable African American population with little access to medical care and therefore little hope of successful antiretroviral treatment; a booming industry of sexual tourism; significant numbers of homeless peo- ple; pervasive inequality and a large urban underclass; widespread stigma that prevents the groups most at risk from seeking diagnosis and therefore knowing their HIV status; a state legislature that suffers “donor fatigue” re-

This content downloaded from 134.84.192.103 on Wed, 25 Nov 2020 17:32:47 UTC All use subject to https://about.jstor.org/terms HIV/AIDS: The United States 447 garding HIV/AIDS and prioritizes other health concerns; a severe problem of heroin addiction; and a Bible Belt culture that, in the words of the CDC, “suffers from homophobia and transphobia, racism, and general discomfort with public discussion of sexuality.”17 Under the administration of Donald Trump, the federal government has also declined to provide leadership, to devise strategies to confront the problem, and to fund existing programs that tackle HIV/AIDS.

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