HUMAN RIGHTS AND HIV/AIDS

The first account of what would become the world's largest pandemic was published in the Morbidity and Mortality Weekly Report of the Centers for Disease Control and Prevention in June 1981. An editorial note accompanying the paper stated that "the fact that these [five] patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or a disease acquired through sexual contact and Pneumocystis pneumonia in this population (1)". In the United States, the earliest identification of AIDS as a gay disease, a "gay cancer," or a "gay plague" continued to dominate public perception and shape official responses long after the name "acquired immune deficiency syndrome" was adopted to replace the term "gay-related immunodeficiency disease." Despite mounting evidence of heterosexual transmission, some religious leaders seized on the chance to identify HIV/AIDS with the gay community, arguing that the disease was God's punishment for sin and that homosexuals should be tattooed or quarantined (2). In September 1985, four years after the disease appeared, President Reagan mentioned AIDS publicly for the first time at a press conference, adding to the confusion by implying that casual contact could transmit HIV. When asked if he would send his own children to school with a child who had AIDS, Reagan commented that although the medical evidence suggested this would not put them at risk, there was no unequivocal proof (3).

The combination of denial and panic that characterized the response in the United States was echoed around the world. Many African countries refused to pay attention to HIV/AIDS and deeply resented the fact that Western scientists viewed Africa as the origin of the disease. Chinese officials argued that as there were no homosexuals, drug users, or prostitutes within the People's Republic, there was, therefore, no AIDS. In Germany, a federal judge declared that it might be necessary to tattoo and quarantine people carrying the virus (pp. 25–27) (4). In the first decade of AIDS, 104 countries adopted restrictive AIDS-related laws. When the development of a test for HIV made it possible to identify carriers of the disease, such legislation soared (p. 547) (5). The epidemic also spawned a particular type of hate crime, in which those thought to be at high risk of contracting the disease and people living with AIDS were verbally and physically assaulted (p. 562) (5).

Civil society groups were the first to respond to this crisis. Working to lessen the isolation of HIV positive people and in response to the lack of services for people contracting the disease, the gay community, people with AIDS, and community activists mobilized. They demanded policy changes, created new social and medical organizations, and developed educational campaigns. Organizations such as the Gay Men's Health Crisis in the United States and later ACT UP drew unprecedented media attention to the needs of people at the forefront of the epidemic. The AIDS Support Organization begun in Uganda in 1987 launched a movement of community groups across Africa. Around the world, activists fought to prevent the spread of the disease and to challenge discrimination, often risking violent reprisals.

This was the context in which Jonathan Mann developed his theory of human rights and health. His development of a systematic approach to human rights and HIV/AIDS, and later to health more broadly, reflected lessons learned in his early career as well as his experiences directing the World Health Organization's (WHO) Global Program on AIDS (GPA). Mann's considerable contributions to the global control of HIV/AIDS came to a tragic end in September 1998. Mann and his wife, Mary Lou Clements Mann, were on their way to WHO headquarters in Geneva when they died in a plane crash. It seems fitting that we trace the evolution of Mann's ideas about health and human rights in this special issue of the Journal of Public Health Policy.

EARLY CAREER

As a student, Mann received a scholarship from the United States Public Health Service to pay for medical school and, in return, he was required to serve a two-year period in the Commissioned Corps. In 1975, he was assigned to the Centers for Disease Control (CDC), trained as an Epidemic Intelligence Service officer, and sent to New Mexico as State Epidemiologist. He had intended to take up a residency in ophthalmology after the requirement was completed, but enjoyed the work so much that he decided to stay on. In 1977, three years after completing medical school, Mann was appointed Chief Medical Officer of the New Mexico Department of Health and Environment. Over the next 10 years, he dealt with a wide range of infectious disease problems including plague and diphtheria. He also saw first-hand how the obstacles to health care faced by the regions' poorest residents undermined public health. Mann described this period as instrumental in his evolution from a clinician to a public health practitioner (p. 20) (6).

Mann did not yet appreciate the potential role of community-based organizations in public health – later he would come to view them as crucial partners – but he became adept at working with a broad range of policy makers and practitioners. Mann built relationships with physicians in private practice, legislators, and faculty and graduates at the states medical school, raising the profile and visibility of the health department (6).

PROJECT SIDA

By 1984, Mann was ready to move on to his next challenge. In Zaire (now the Democratic Republic of Congo) in 1983, the chief of internal medicine at a hospital in Kinshasa, Bila Kapita, had reported that his young patients were dying mysteriously. The doctors in Zaire already believed the disease they were seeing was similar to that being reported from New York and San Francisco. Not having the laboratory equipment to confirm their suspicion, they asked the Ministry of Health to request an investigation. At the same time, Dr. Peter Piot in Belgium was seeing several patients from Zaire and Rwanda who had AIDS, and he was convinced that AIDS could be endemic in urban areas of central Africa. Unable to get funding from his own government, Piot received a small grant from the US National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health, to go to Zaire to investigate. Thomas Quinn from NIAID and Joe McCormick, the head of the CDC's special pathogens investigations, joined the group. They set up a combined European–American project in Zaire, Project SIDA, where they quickly confirmed the presence of AIDS and found clear evidence of heterosexual transmission of the virus (pp. 345–346) (7).

Piot and the rest of the team were at first stunned to find that the three dozen confirmed AIDS cases in Kinshasa were almost equally divided between women and men. At that time, October 1983, AIDS was essentially invisible among women in the United States and Europe. Analysts generally explained away the small number of cases among women as belonging to one of the other risk groups, such as IV drug users. The equal numbers of cases between the sexes in Kinshasa suggested that AIDS was being transmitted heterosexually.

In 1984, James Curran, director of the CDC AIDS program, recruited Jonathan Mann to head a permanent research project in Kinshasa (8, 9) (Figure 1). He formed a small research team with two physicians from Zaire, Bosenga Ngali and Eugène Nzila, and began to trace the widening circles of infection (10). This research confirmed heterosexual transmission, and convinced Mann that the world faced a major epidemic. One of Mann's major contributions would be to alert the global community to the dramatic urgency of dealing with the spread of the disease, at a time when there was no vaccine and no treatment available.

Figure 1.

Jonathan Mann with his team in Kinshasa, 1984 or 1985. Photo provided courtesy of the family of Dr. Mann

Full figure and legend (159K)

Project SIDA submitted a paper documenting their findings to the New England Journal of Medicine, but it was rejected by the editors. When they presented their findings at the first international AIDS conference in 1985 in Atlanta, many scientists rejected their conclusions and argued they must have overlooked some other form of transmission (11). At the time, there were rumors of AIDS transmission by mosquitoes, by household contact, and by all sorts of real or imagined exotic African customs. After rejection by a dozen other journals, the paper by Piot et al. was finally published in the Lancet (12).

THE GLOBAL PROGRAM ON AIDS

In the earliest years of the epidemic, many in the WHO regarded AIDS as an American disease – an ailment identified with small and marginal groups within wealthy countries, of limited concern to the rest of the world (p. 567) (5). The Director of the WHO Communicable Diseases Division, like most people at that time, regarded AIDS as a disease of the West, affecting minority populations such as gay men and drug addicts (13). As cited in Aids in the World, his memorandum stated that WHO did not need to become involved with AIDS because it was being well taken care of by some of the richest countries of the world. While garnering a lot of media attention, the disease seemed less important than malaria, tuberculosis, and malnutrition, or a host of other problems that more immediately threatened the health of people in the developing world. WHO's role at the beginning of the epidemic was limited to collecting and exchanging technical information about AIDS (13, 14, 15).

At the World Health Assembly in May 1986, the Minister of Health of Uganda declared that his country had an enormous problem with AIDS and called on WHO to help. A couple of months later, Joe McCormick introduced Fakhry Assaad, Mahler's chief of infectious diseases, to Jonathan Mann at a conference in the Central African Republic. Mann agreed to become director of a new global AIDS program and, for the next six months, commuted between Kinshasa and Geneva (p. 360) (7).

In November 1986, Mahler and Mann flew together to New York and held a press conference where they declared that WHO would devote itself to the task of global AIDS prevention and control. Mahler announced that the same level of effort would go to AIDS as to the highly successful campaign against smallpox. This signaled a major commitment on the part of the Director General, who admitted that he had earlier greatly underestimated the impact of the disease (16).

Mahler allowed Mann to bypass WHO's usual chain of command as head of the new GPA. Initially, much external donor support for the new program stemmed from the ongoing stigma of the disease. Many countries wanted to do something about AIDS but to avoid political identification with an unpopular disease so that, instead of running their own programs, they were happy to put their money into a multilateral strategy. The US Agency for International Development, for example, gave WHO $6.6 million in 1987 and then doubled that amount in each of the next two years (17). Mann was able to build the GPA into the strongest, most influential, and best financed program within the WHO, quickly expanding the budget to $30 million in 1987 and $82 million by 1990. The program employed more than 200 staff and developed collaborative agreements with some 160 countries (18).

During his time at the WHO, Mann's conceptualization of the relationship between human rights and AIDS evolved significantly. He defined AIDS as three "distinct yet intertwined" epidemics: the first was the epidemic of infection, the second the epidemic of illness, and the third epidemic, the "social, cultural, economic and political reaction to AIDS... as central to the global AIDS challenge as the disease itself" (p. 1) (19). Initially, his interest in social factors focused on tackling the discriminatory and punitive measures against seropositive people and those living with AIDS. Discrimination, he argued, would only drive the infected underground, making it much more difficult for health agencies to track the epidemic or treat people with the disease (19).

Mann also emphasized the role of information in preventing the spread of the epidemic. If we know which risk behaviors transmit HIV, he reasoned, we should be able to give accurate information to people on how to minimize such risks. Before 1985, the public health response emphasized alerting people to danger. Educational campaigns often used fear to capture attention, compounding the growing panic rather than quelling it (p. 216) (20). A more open approach to the topic might make the difference – as long as the information was delivered in a "supportive" environment, in which health care was available, and people were not stigmatized and therefore discouraged from using services, these efforts could be effective in preventing the spread of the disease. As Mann expressed his view at the time, "AIDS can be stopped only by a sustained health education program aimed at bringing about changes in human behavior" (p. 369) (21). But it would soon become clear that information was not enough to alter behavior.

Looking back on the way he had initially defined the global strategy against AIDS, Mann later acknowledged that he had focused too narrowly on individual responsibility. He had accepted the epidemiological tradition of identifying risk factors, largely defined in individualistic terms, and the dominant public health model of the time that prioritized individual behavior change (p. 6) (22). As he campaigned against the disease, he came to understand more clearly the social, economic, and political dimensions of the epidemic.

Mann went on to establish a human rights office within the GPA and developed the WHO's Global Strategy on AIDS based on principles of human rights, specifically emphasizing non-discrimination and equitable access to health care. For the first time, he explicitly announced a public health strategy using the language of human rights (p. 4) (23). The GPA prioritized the development of national AIDS control programs, working with individual countries to build political will, define national policies, create educational programs, and also provide technical support and advice. By 1990 almost every country in the world had established an AIDS program. The GPA organized thousands of consultant missions and provided extensive technical assistance, including laboratory equipment, training, staff, and supplying blood and condom services (p. 65) (24).

As well as defining the scope of the epidemic and projecting its course, under Mann's direction the GPA worked to "depoliticize" the disease. In negotiations with countries and in formal reports, staff emphasized the limited routes of HIV transmission and worked to reduce fears of contagion (p. S222) (13). In 1987, Mann and Mahler gave a briefing on AIDS to the General Assembly of the United Nations (25, 26). This was the first time that delegates had ever debated a disease – a historic moment reflecting growing awareness of the significance of the emerging pandemic. At this meeting, drawing on his firm belief that the goals of public health and human rights were compatible and interconnected, Mann argued eloquently against repressive policies such as mandatory HIV testing and quarantine. He delivered a message "of realism and tolerance," saying that anxiety and fear were causing some to blame others for the epidemic, unveiling "dimly disguised prejudices about race, religion, social class, sex and nationality" (pp. 3–4) (19). He again stressed the idea that because AIDS spreads through known human actions, "all subject to human influence and control" AIDS was therefore "controllable and preventable" (p. 2) (19). He would substantially change this optimistic assessment of the power of individuals to protect themselves during his subsequent years at the WHO.

Historically, many have seen the imposition of public health measures as naturally in conflict with the rights of the individual, because the tools of disease control such as surveillance, quarantine, and vaccination have often been employed without the consent of the person infected or at risk of infection. Arguments about the preservation of public health have justified the restriction of individual liberty when the health of the population was at stake. Scholars have rightly criticized such measures as the Contagious Diseases Acts of the 1860s, in which British women suspected of prostitution could be subjected to compulsory gynecological exams for venereal disease, and cases like that of "Typhoid Mary," the New York City cook who was quarantined for life in 1915 (27, 28). From his time in New Mexico, Mann was uneasy about the "coercive side of medicine or government" and the idea of forcing people to do things. Undoubtedly, this was a key reason for his strong commitment to human rights (p. 209) (29). The AIDS epidemic also raised questions about the rationality of traditional tools, as the stigma of the disease threatened to drive infected persons to conceal their status.

Under international human rights law, a serious threat to the health of the population or individual members of the population may provide justification for a limitation of individual rights but such limitations are clearly defined by the Siracusa Principles (30). Quarantine, for example, may be permitted when it offers the only available means to limit the spread of a disease, and only on condition that the dignity and humanity of persons under quarantine is preserved and their universal rights upheld (p. 13) (31). Far from undermining the tools of traditional public health, Mann argued, a human rights framework holds the potential to improve upon them. He refused to pit the rights of many against the rights of the few, arguing that this was a false dilemma, because the protection of the majority of the population directly depended upon the protection of the rights and dignity of infected people (p. 10) (32).

Mann also stated that the AIDS epidemic was exposing inequities in health systems and across societies. Indeed, the disease appeared to flourish wherever social inequalities were marked and wherever health systems failed to deliver adequate care: where intravenous drug use was not prevented or treated, for example, or where blood transfusions were not fully integrated into health care services (p. 10) (32). Anticipating future challenges to human rights as the AIDS epidemic continued, Mann explicitly demanded the equitable global distribution of future treatment drugs and vaccines to the entire world and not just within wealthy nations (p. 734) (33).

Recognizing that civil society groups had taken the lead during the early years of the epidemic, Mann broke with WHO tradition and invited non-governmental organizations, including the League of the Red Cross and Red Crescent Societies, the International Council of Nurses, Street Kids International, the Names Project, and many others, to join in a coordinated global campaign (p. 547) (5). He also invited human rights organizations to get involved in the international debate about HIV and AIDS (p. 223) (34). This unprecedented collaboration played a major role in redefining the relationship between non-governmental organizations and international agencies. The legacy continues today, as United Nations programs working on AIDS have gone on to recruit staff from NGOs involved in these partnerships (p. 566) (35).

The GPA's central focus on human rights had an enormous influence within the WHO, and in May 1988 the WHO officially adopted a policy of non-discrimination with passage of a resolution in the World Health Assembly. The GPA was also able to convince many leaders from around the world to adopt Mann's approach based on equality, dignity, and non-discrimination. Governments in various countries, for example, had considered legislation to limit travel for people with AIDS. In March 1987, the WHO convened a meeting of epidemiologists, laboratory scientists, and communicable disease and health policy specialists to discuss the issue. As a result of the Consultation on International Travel and HIV Infection, all but one nation – the United States – dropped such restrictions (p. 6) (36). By tying the control of HIV/AIDS to human rights, the WHO harnessed international human rights law as a public health tool. The human rights approach made governments accountable under international law for a range of issues related to health and well-being (37).

CHALLENGE TO THE HUMAN RIGHTS APPROACH AT THE WHO

In late 1988, Mann and his colleagues began to reconfigure the GPA for a new phase of work. Having mobilized organizations worldwide, the GPA would now serve to coordinate efforts, retaining leadership in the key area of human rights. There were, however, problems on the horizon. In 1988, Mahler made a surprise decision to retire. The new Director General, Hiroshi Nakajima, resented Jonathan Mann's privileged position and unorthodox style (p. 481) (7). He began moves to "normalize" Mann's operations and limit his independence. Nakajima believed that malaria, which was killing many more people than AIDS, was a bigger problem. Some have charged that he was interested in being reelected and therefore wished to provide money for popular programs, not draw excessive attention to problems that many countries were reluctant to acknowledge. Some African countries were angry at the insistence by some Western scientists and Western media that AIDS had originated in Africa (p. 352) (22). Several donor countries were uncomfortable with the activities of non-governmental organizations (p. 360) (38). The Vatican led resistance to the AIDS program in several Catholic countries, and other nations remained in a state of denial about the prevalence and rapid spread of the disease (39). Some governments resisted Mann's insistence on HIV prevention education and decried his support for needle exchange programs. He frequently clashed with the Vatican over the provision and distribution of condoms. Many leaders resistant to the kind of wide-ranging social change Mann advocated were critical of the focus on human rights (p. 476) (7).

In November 1988, Mann saw the transcript of an interview Nakajima had given to Le Monde in which he implied the need to balance the rights of AIDS patients against those of society at large. Mann was appalled by Nakajima's statements, which seemed to open the way for a return to the kinds of punitive legislation against people with AIDS that the GPA had been fighting for several years. Mann told Nakajima that if the remarks were published he would publicly resign before the world's media at the upcoming World AIDS Day Summit on December 1 (40).

Nakajima retracted the comments, but began to undermine Mann's standing within the WHO. He failed to invite Mann to key policy meetings, left his budget requests unsigned, denied his travel requests, and refused to appoint the staff members Mann had selected (41). By March 1990, Mann concluded that his position was untenable. He resigned and published his own interview in Le Monde in which he accused Nakajima of obstructionism and of paralyzing the global fight against AIDS. He gave a remarkably blunt interview to the London Times, saying that he had been pleading with Nakajima to exercise leadership on AIDS, to continue the human rights-based agenda, and to ensure that AIDS drugs and vaccines, when available, would not be denied to poorer nations on grounds of their cost. But there had been little action from the Director General's office on this and other important matters (42).

The GPA entered a period of some turmoil after Mann's departure. Many of the senior staff resigned or were asked to leave. Nakajima selected Michael Merson, who had previously worked on diarrheal diseases, to be the new head of the GPA. Merson was not welcomed by many of the people who had been working on AIDS and whose loyalties lay with Mann; he faced considerable hostility within the international AIDS community. Some funding agencies became disaffected; in 1991, contributions to the GPA declined for the first time (p. 67) (24).

Merson was however, dedicated to the task; he brought in new staff, and worked hard to maintain the AIDS program. A conscientious manager, he imposed a tight organization with careful tracking of income and expenditures – matters that had been somewhat casually treated under Mann's tenure. Whereas Mann had operated on passion, commitment, an almost manic energy, and a horizontal approach – disregarding hierarchy and welcoming all comers – Merson preferred a more traditional vertical public health approach and did not make human rights his central focus, as Antonio Gerbase of the WHO, Geneva, explained to one of us (EF) in a September 12, 2006 interview.

Management reorganizations interrupted the high level of activity of the technical assistance program and much of the momentum and motivation that had sustained the GPA was lost. Merson moved the program toward a more medical and epidemiological approach and he would prove very effective at negotiating with pharmaceutical companies to gain access to drug therapies. But other agencies such as the United Nations Development Program and the United Nations Children's Fund (UNICEF) demanded that leadership of the AIDS program be removed from WHO and made a collaborative program within the overall umbrella of the United Nations. After some years of discussion and debate, in 1994–1995, UNAIDS was founded under the leadership of Peter Piot.

AFTER WHO: MANN'S WORK ON PUBLIC HEALTH AND HUMAN RIGHTS

After leaving the WHO, Mann began to explore the broader relationship between health and human rights as professor of epidemiology and international health at Harvard. Because of Mann's influence, graduates from the School of Public Health are given copies of the Universal Declaration of Human Rights at commencement, "as vital to their future in public health as the Hippocratic Oath" is to a medical doctor (p. 225) (20). He collaborated with the Countess Albina de Boisouvray, who endowed the Harvard School of Public Health with a professorship and a center devoted to the study of health and human rights named after her son, Francois-Xavier Bagnoud, a humanitarian relief worker who had died in Africa while on a medical mission.

Mann chaired the International Human Rights Committee of the American Public Health Association and also worked with Daniel Tarantola and Thomas Netter on two comprehensive volumes on the state of the AIDS epidemic (8, 43). The Editors of AIDS in the World noted that one of the "most important and unanticipated outcomes" of the AIDS pandemic was the dialogue between public health and human rights (p. 537) (7). They asked whether the new approaches resulting from this dialogue could be maintained, and whether they might also apply to other health problems. The Francois-Xavier Bagnoud Center for Health and Human Rights took on this task, launching a new journal, Health and Human Rights, and organizing the first two conferences on the topic in the history of public health.

As he expanded his understanding of the relationship between health and human rights, Mann identified three points of interaction between them: the potential burden on or violation of human rights caused by public health policies; the adverse effects of human rights violations on physical, mental, and social well-being; and the role that protecting human rights plays in promoting health (pp. 439–445) (44). In 1996, he noted that the majority of health and human rights work thus far focused on treating people whose human rights had been violated and documenting the abuse (p. 2) (45). He argued, however, that the human rights framework could be used to bring together all the social factors that influence health and well-being, because this framework had been initially developed outside the health domain in order to articulate the societal preconditions for human well being (p. 444) (46). The human rights framework, he maintained, both demands access to affordable health care as a matter of human rights and expands the purview of public health work, by making social inequality as much a target for reform as individual behavior.

Mann also began to see discrimination as both an effect of the AIDS epidemic and its root cause. Human rights, civil rights, and equality were fundamental to prevent the spread of the disease. Mann was a strong supporter of women's rights, and argued that women who feared being beaten would not ask their husbands to wear condoms, and street children and widows without inheritance rights could not reduce the number of their sex partners as they depended on sex for subsistence (p. 20) (31).

JONATHAN MANN'S LEGACY

In an interview in 1995, Mann traced his vision for public health to the definition given by the United States Institute of Medicine – what we do collectively as a society to ensure the conditions in which people can be healthy. Building upon the tradition of "social medicine" within public health, he came to focus on the social inequalities that cause disease and prolong illness, and he acknowledged Rudolph Virchow as a pioneer of this model (p. 209) (29). Mann preferred a human rights analysis to an emphasis on social determinants of health because he felt that the latter tradition emphasized the role of economic factors in ill-health, but obscured other issues such as social marginalization, childhood experiences, and gender and racial inequalities (p. 442) (44). Perhaps Mann also found the language of human rights more useful as a rhetorical device within the United Nations and across a spectrum of political contexts. Yet he also saw the human rights framework as a revolutionary influence in public health, because it involved protecting the vulnerable, and "must be understood as a challenge to the political and societal status quo" (p. 117) (46).

As the global pandemic has "matured," Mann's analysis of the integral relationship between health and human rights is still relevant. Twenty-five years after HIV/AIDS was first recognized, people of color and those living in poverty are disproportionately burdened by the disease and are the least likely to have access to adequate medical care and treatment. Gender discrimination and violence increase the risk of contracting HIV for women around the world, and stigma continues to fuel the spread of the epidemic and endanger the lives of AIDS activists (47, 48).

Jonathan Mann argued that health professionals in the field of HIV/AIDS had a pivotal role at the intersection of health and human rights, "opposing the simplified moralisms which blame the victims (the ill, the disabled, the dead) for health problems whose societal root causes have been ignored" (p. 4) (45). At the time of his death, he was writing about the first article of the Universal Declaration on Human Rights and its relevance for a diverse range of health issues. The discourse on public health and human rights continues to evolve, inspiring a critical reevaluation of methods in both fields, and promising new approaches to dealing with the social and cultural as well as economic forces that affect health and well-being. This, after all, is Mann's greatest contribution – to serve as a continuing stimulus to the efforts of new generations of public health practitioners and activists.

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Acknowledgements

This paper was originally presented at the Spirit of 1848 History Committee session at the 134th APHA meeting in Boston, November 2006.

About the Authors

Elizabeth Fee, PhD, is chief of the History of Medicine Division at the National Library of Medicine. She has written extensively on the history of public health and is currently working on a history of the World Health Organization.

Manon Parry, MA, MSc, is a historian of medicine and museum curator interested in health and human rights, the history of family planning, and disability studies. She is currently developing a major exhibition on Global Health that will open in 2008.