American Journal of Law & Medicine

The Perils of Panic: Ebola, HIV, and the Intersection of Global Health and Law

This Article explores the connections between emerging infectious diseases, domestic disease panics, global health, and the law by comparing the American response to Ebola to the initial American response to the AIDS epidemic. We demonstrate that in both cases the arrival of a new deadly disease was initially met with fear, stigma and the use of law to "other" those associated with the disease. We begin by reviewing the initial responses to the AIDS epidemic. We then offer a brief history of emerging infectious disease scares over the past few decades, highlighting the problematic rhetoric that paved the way for the Ebola panic. We then review the 2014 Ebola outbreak, noting its similarities and distinctions from the early AIDS epidemic. Finally, we examine United States policies regarding HIV and Ebola in Africa. We conclude with some tentative observations about the relationship between germ panics, law, and public health.

       TO AFRICA


In the fall of 2014, Thomas Eric Duncan, a Liberian national traveling to Dallas, Texas, was diagnosed with Ebola viral disease. (1) Within days, two of his nurses contracted the disease, as did Dr. Craig Spencer, a physician returning from treating patients from West Africa. (2) In the weeks that followed, a full-scale panic erupted in the United States and much of the western hemisphere. Healthcare workers were quarantined, children were barred from school, and four of ten Americans reportedly feared that they or a family member would contract Ebola. (3)

The short-lived but intense Ebola panic of 2014 highlights the thorny relationship between domestic public health and global health. In recent decades it has become cliche to note that infectious diseases that arise in the developing world can travel to the developed world. From this truism, many public health experts and human rights advocates may conclude that the promotion of global health is in the self-interest of the developed world. (4) But the reaction to Ebola in 2014 suggests that when panic strikes, the public may draw a less benevolent conclusion: those who live in the developing world are dangerous vectors of contagion needing to be kept at bay.

This Article explores the connections between emerging infectious diseases ("EIDs"), domestic disease panics, global health, and the law by comparing the response to Ebola to the response to the start of the AIDS epidemic. (5) Our analysis demonstrates that in both cases the arrival of a new deadly disease was initially met with fear, stigma, and the use of the law to treat those who were associated with the disease as "other." Helene Joffe and Georgina Haarhoff paraphrase Sheldon Ungar when noting that "'othering' is a tool used by the media when reassurance is required in the face of alarm." (6) We look to dispel the notion that othering is a necessary, albeit maladaptive, strategy to cope with pandemic paranoia. They add, "[w]hen Ebola and AIDS are linked, in most cases this serves to amplify the danger posed by Ebola." (7) We instead aim to link AIDS and Ebola in a way that provides lessons for the United States and the global community when dealing with future outbreak scares.

We argue that the Ebola response was exacerbated by twenty years of warnings by both scientists and the media about the dangers of EIDs, warnings which paradoxically arose partially in response to the HIV epidemic. This is captured by Centers for Disease Control and Prevention ("CDC") Director Tom Frieden's remark, "we have to work now so this is not the world's next AIDS." (8) Although designed to direct attention to a very real problem, and even to draw resources to support health in developing countries, the discourse often reinforces the misperception that people from the developing world, and more generally, people who are perceived of as different, are dangerous carriers of infection. This view, we suggest, may have hindered efforts to respond in an effective and supportive manner to the far larger epidemics of HIV and Ebola that were occurring in Africa. Yet in both cases, law eventually played a more constructive role by rejecting discrimination and the use of coercive measures that lacked a scientific basis. By so doing, law may have worked alongside science to help quell the panic, and thereby pave the way for a more robust support for global health.

We begin in Part II by reviewing the initial responses to the AIDS epidemic. (9) We examine the role of stigma in shaping the popular and political responses to the disease and argue that stigma and disproportionate impact on previously ostracized groups delayed progress in identifying the virus, developing appropriate diagnostic screening tools, disseminating appropriate educational materials, and ultimately, treating the condition.

In Part III, we offer a brief history of EID scares over the past few decades, and the problematic rhetoric that paved the way for the Ebola panic. (10)

In Part IV, we review the 2014 Ebola outbreak, noting its similarities and distinctions from the early AIDS epidemic. (11) We examine the early responses to AIDS and Ebola, both of which were characterized simultaneously by fear, stigma, and the use of law to "other" those who were associated with the disease. (12) For both HIV and Ebola, however, law eventually delegitimized the othering, helping to quash the panics and pave the way for more effective global responses. (13)

In Part V, we examine American policies with respect to HIV and Ebola in Africa. (14) In the case of HIV, the early response was largely isolationist. As long as the panic persisted, the United States offered little support for HIV prevention and treatment in the countries hardest hit. (15) Instead, it barred non-citizens who were HIV positive from traveling to the United States. (16) Only when the panic died down did policy change from neglect to engagement. (17) Although the federal government never adopted a similarly isolationist stance towards Ebola, that panic may have undermined efforts to address the epidemic in West Africa nonetheless.

In the Conclusion, we offer some tentative observations about the relationship between germ panics, law, and public health. (18) For over twenty-five years, many infectious disease experts have warned about the very real dangers of EIDs. (19) Our review of the history of HIV and AIDS suggests that such warnings may have unintended consequences, as fear can impede efforts to address the very problems that are identified by the warnings.

We also suggest that legal rights may play a role in determining the potency and persistence of germ panics, and thus support global health. While some laws relating to HIV and Ebola may have added fuel to the panic, in both cases legal decisions helped to delegitimize othering and lower the temperature. (20) By so doing, law may have worked alongside social and political forces, assurances by health authorities, and advances in science to facilitate a response based more on solidarity than stigma.



In June 1981, the CDC's Morbidity and Mortality Report noted the mysterious appearance of a previously rare form of pneumonia--pneumocystis carinii--in five gay men in Los Angeles. (21) A month later, the same publication reported that twenty-six young gay men in New York had been diagnosed with Kaposi's sarcoma, a disease previously found in a much milder form among older men of Jewish and Mediterranean descent. (22) With the cause of the outbreak unclear, CDC spokesman Dr. James Curran dismissed the threat of AIDS to non-homosexuals, noting that "no cases have been reported to date outside the homosexual community or in women." (23)

By late summer 1981, it was clear that a new and terrible epidemic was destroying the immune system of gay men as well as intravenous drug users. (24) A 1981 New England Journal of Medicine editorial (25) identified immunosuppression as a common mechanism but failed to suspect a novel pathogen as the cause. (26) Despite the attention from the medical community, the public at large did not take notice. (27) But by 1983, as deaths mounted, AIDS "became a household word in the United States." (28) Although scientists suspected it was caused by an infectious agent, the human immunodeficiency virus (HIV) was not discovered until 1983. (29) By 1985, a test was licensed to determine whether someone was infected,'0 but the disease remained lethal in almost all cases. (31)

As the public became more aware of the disease, fear escalated. So, too, did stigmatization of, and discrimination against, so-called "high risk groups": gay and bisexual men, intravenous drug users, Haitians, and hemophiliacs. (32) With the exception of hemophiliacs, these groups had been marginalized and subjected to discrimination prior to the epidemic. (33) Their association with a new, mysterious, and lethal disease only compounded their social vulnerability, as AIDS became identified with "the other." (34) Even public health officials engaged in othering. (35) Paul Farmer points out that in December 1982, a National Cancer Institute ("NCI") physician, in regards to HIV, remarked: "[w]e suspect that this may be an epidemic Haitian virus that was brought back to the homosexual population in the United States." (36)

Throughout this period, members of these so-called high risk groups were portrayed in both the media and popular discourse as if they were responsible for the disease, in contrast to the "innocent victims" that they endangered. (37) In July 1985, Life Magazine's cover declared, "Now No One is Safe From AIDS," (38) insinuating that even those who were "innocent" faced dangers. This belief became even more pronounced in 1990 when a young Florida woman, Kimberly Bergalis, was diagnosed with AIDS after receiving dental work. (39)

Another famous "innocent victim" was Ryan White, a young hemophiliac boy who acquired HIV through a blood transfusion; he was diagnosed with AIDS in late 1984. (40) After being expelled from school, White fought to be reinstated and started several educational campaigns, becoming the poster child for the AIDS crisis. (41) White's case finally caught the attention of politicians; Congress passed the Ryan White Comprehensive AIDS Resources Emergency ("CARE") Act four months after his death in 1990. (42)

As fear of HIV escalated, so too did discrimination and calls for highly coercive measures. Children were barred from school, (43) and gay men were evicted from their apartments and fired from their jobs. (44) Patients were denied health and dental care; (45) foreigners were barred from entering the United States; (46) and HIV-positive Haitian refugees were detained in Guantanamo Bay. (47) Conservative commentator and television personality William F. Buckley called for the visible tattooing of people who were HIV positive, (48) prompting a similar statement in 1987 from Gerd Pfeiffer, president of the German Federal Court of Justice. (49)

Public officials also debated quarantining people with AIDS, and a ballot measure in California calling for mass quarantines collected almost 400,000 signatures. (50) Such calls provided a powerful disincentive to being tested for HIV. Senator Jesse Helms, for example, remarked "[t]he logical outcome of testing is a quarantine of those infected," suggesting diagnosis as a means of further ostracization. (51) Paul Drain notes, "HIV taught us that stigma and fear drive people away from both testing and medical attention, which thereby perpetuates transmission." (52) As Representative Henry Waxman explained: "[AIDS] afflicts members of one of the nation's most stigmatized and discriminated against minorities ... There is no doubt in my mind that, if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than gay males, the responses of both the government and the medical community would have been different." (53)

Indeed, despite the fear, or perhaps because of it, many public officials remained remarkably mute. (54) Most notably, President Ronald Reagan did not mention the disease in public until 1985, four years after the sentinel cases. (55) In contrast, his Surgeon General C. Everett Koop spoke eloquently about the epidemic, but Dr. Koop's 1986 report linking AIDS to race and racism was quickly undermined by Reagan administration officials. (56) Pat Buchanan, who was then communications director for President Ronald Reagan, referred to AIDS as "nature's revenge on gay men." (57)

Politicians also challenged those measures proposed by health officials to fight the epidemic. For example, nine Republican Congressmen wrote to President Reagan attacking AIDS education focused on the use of condoms as "an overly liberal approach to AIDS," (58) despite the fact that at the time, condom use was a critical component of any effective AIDS prevention strategy. (59) Newt Gingrich, one of those nine Congressmen, remarked, "AIDS will do more to direct America back to the cost of violating traditional values and to make America aware of the danger of certain behavior than anything we've seen. For us, it's a great rallying cry." (60) Senator Helms, who successfully proposed a 1987 budget amendment to ban federal funding for HIV/A1DS initiatives that discussed homosexuality, (61) defended his position, stating: "We have got to call a spade a spade, and a perverted human being a perverted human being." (62) Similar opposition also formed around efforts to promote needle exchange programs, (63) which were eventually shown to reduce transmission among intravenous drug users. (64) In 1988, Congress banned the use of federal funds for such programs. (65)


By the late 1990s, the panic had subsided. Four interrelated factors may have played a role (in addition to the fact that all panics eventually burn out). First was the creation of a powerful social movement. Those involved demanded greater federal funding for HIV/AIDS research, an easing of FDA regulatory policies to enable faster development and dissemination of drugs, and an end to HIV-based discrimination. (66) As Peter Baldwin explains, "[G]ays were effective actors. Though not held in esteem, they enjoyed above-average levels of education and income. When stricken as a group, they were in a position to act." (67) Their actions helped move public policy. (68)

A second closely related development was the discovery of effective drugs. In 1987, the first HIV anti-retroviral drug, AZT was approved. (69) Taken alone, it was of limited efficacy, but in combination with the protease inhibitors developed a decade later, outcomes were significantly enhanced. (70) By the late 1990s, AIDS was no longer viewed as an inevitable death sentence. (71) Mark Wainberg and colleagues note that "[HIV research] helped tremendously to mitigate problems of HIV discrimination and stigmatization." (72)

A third important stigma-reducing factor came via the story of Ryan White, followed by announcements that NBA star Magic Johnson, actor Rock Hudson, and tennis great Arthur Ashe were infected with HIV. (73) Although all three were often portrayed as "innocent victims," they helped give a face to AIDS that reduced stigma. (74)

The final factor was the recognition of the legal rights of persons living with HIV/AIDS. Early in the epidemic, legal scholars (75) argued that persons who were HIV positive had a disability within the meaning of the Rehabilitation Act of 1973, which prohibited recipients of federal financial assistance from discriminating on the basis of disability. (76) In 1987, the Supreme Court offered support for that position, ruling in School Board of Nassau County v. Arline that the infectious diseases were handicaps (the then statutory term for what later were called "disabilities") within the meaning of the Rehabilitation Act and that discrimination due to fear of contagion was prohibited by the Rehabilitation Act. (77) Although the Court explicitly stated that it was not deciding whether AIDS was a handicap for the purposes of the Act. (78) it noted that "society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment." (79) Congress quickly adopted Arline's reasoning, (80) making clear in the legislative history of the 1990 Americans with Disabilities Act ("ADA") that the Rehabilitation Act applied to HIV. (81)

The passage of the ADA marked a watershed moment for HIV discrimination, providing for the first time broad federal protection against discrimination in public accommodations (including healthcare) and employment. After the ADA, advocates for persons living with HIV/AIDS were able to assert plainly that discrimination on the basis of HIV status was illegal. This message was reinforced in 1998 when the Supreme Court agreed, ruling in Bragdon v. Abbott, that a woman who was infected with HIV had a disability within the meaning of the ADA. (82) Although neither the ADA nor Abbott ended discrimination against persons living with HIV, the climate had changed. The public scapegoating of an earlier era was no longer as socially or legally acceptable as it had once been. …

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