HIV/AIDS AND THE HUMAN RIGHT TO HEALTH
THE AWAKENING OF THE HUMAN
RIGHT TO HEALTH
The story of activism about the human right to health is inextricably linked with the HIV/AIDS crisis. This is not to say that only HIV/AIDS engages the human right to health—far from it—or even that every aspect of HIV/AIDS is a matter of human rights. But nevertheless the narrative—the as yet far from complete narrative—of HIV/AIDS brings to light human rights issues at every turn. To name just the most obvious, these include: discrimination against “outsider” groups; the need to confront taboo subjects; the spread of the epidemic to the most vulnerable; the conflict between public safety and individual freedom of movement and action; implicit racism in responses to the global spread of HIV/AIDS; restricted access to very expensive patented medicines; the need to inform, educate, and change the sexual behavior of people, including teenagers; the neglect of patient populations by their governments; alleged human rights abuses by international financial institutions; the role of “people’s health movements”; the unintended consequences of treatment programs; and, as Jonathan Mann puts it, “the social determinants of vulnerability.”1
At the start of the AIDS crisis, in 1981, the idea of the human right to health barely featured as part of the political or health agenda. But things have changed to a point where in 2003 Nelson Mandela could tell his audience, “AIDS is no longer a disease, it is human rights issue,”2 and the theme of World AIDS Day 2010 was “Access to Treatment and Human Rights.”3
HIV/AIDS became a human rights issue first of all through the agitation and action of the gay community in San Francisco and New York, who were especially concerned about discrimination against, and harsh treatment toward, people living with HIV. These early campaigns provided an impetus and a model for AIDS and human rights activism more widely in North America and Western Europe, and then throughout the globe, ultimately seeing health itself, and access to treatment, as human rights issues. This in turn led to the maturing of the idea of the human right to health, which is now used to advocate not only for treatment for all manner of diseases, but for the strengthening of health systems and for the provision of the underlying determinants of health, such as sanitation and nutrition. This chapter will explain how the fledgling idea of the human right to health developed, through AIDS activism, into a truly global concern.
Tragically, then, HIV/AIDS and the human right to health were made for each other. Our task in this chapter will be to look at the interlinked development of HIV/AIDS and the human right to health movement as a way of casting light on both. Jonathan Mann, one of the leading figures in making the connection between human rights and HIV/AIDS, very sadly a victim of the SwissAir crash of 1998, observed that “the human rights framework offers public health a more coherent, comprehensive and practical framework for analysis and action on the societal root causes of vulnerability to HIV/AIDS than any framework inherited from traditional public health or biomedical science.”4 But equally, HIV/AIDS gave the human right to health movement an impetus and a clear focus.
In this chapter we will explore, first, the response to HIV/AIDS in the developed world, and then widen the analysis to look at the global spread of HIV/AIDS, especially in Africa. Throughout we will consider those issues that are most salient from the point of view of the human right to health, and will draw the various strands together in the concluding section of the chapter.
HIV/AIDS DISCOVERY AND RESPONSE
The first cases of what came to be identified as HIV/AIDS emerged in the USA in 1981. In thinking through the immediate response to HIV/AIDS, it is important to remember that it arose at a time when it was thought that at least the developed world had passed through the “epidemiological transition” to a point where infectious disease had largely been conquered, and that the health challenges of the future would be chronic diseases of aging and lifestyle, especially heart disease and cancer. Although recent outbreaks of hepatitis and genital herpes had knocked the medical world’s confidence to some degree, still no one was prepared to deal with a major new infectious disease. Nevertheless, once it switched into gear, the scientific response was remarkable.
The first identified patient groups, referred to at the time as the “four H’s”—homosexuals, heroin users, hemophiliacs and Haitians,5 sometimes accompanied by a fifth “H,” hookers6—included, of course, groups who were already marginalized and stigmatized. Indeed, when first reported in June 1981, the condition was referred to as GRID: Gay Related Immune Deficiency, as all the members of the initial patient group were gay men who had acquired unusual infections and other rare conditions such as the cancer Kaposi’s sarcoma as a result of a highly compromised immune system. AIDS was often referred to as “the gay plague,” although, of course, other patient groups soon became known. The presence of injecting drug users and hemophiliacs indicated that the condition, whatever it was, must be transmissible through blood, whereas the presence of Haitians was, initially, more baffling, and led to wild speculation about voodoo and blood rituals.7
Even in the early 1980s we can detect connections between human rights and HIV/AIDS. Early speculation was that AIDS was the result of the promiscuous gay lifestyle of bathhouses and drugs. A type of moralistic “if they behave like that what do they expect?” led to popular support for severe restrictions on homosexual behavior, such as closure of bathhouses on public health grounds to prevent the further spread of the disease—not that it was known how it was spread. This was mixed in with genuine concern for those with the condition and their families, as well as a more matter-of-fact medical/scientific response underscored by a belief in a duty to understand and treat all conditions, whatever their cause. And, of course, there was greater sympathy for the hemophiliac patients, who were already in a perilous situation and could not have been thought to have brought their condition on themselves.
Stories about restriction, discrimination against “victims,” and the protection of “the innocent” filled the media. Although in retrospect it is possible to describe some of the issues in terms of the right to health, to have done so at the time would have seemed a highly esoteric and exotic notion. Recall that the ESCR had only come into force, even among the countries that had ratified it, in 1976, and General Comment 14, offering detailed guidance on the right to health, was not issued until almost two decades later, in 2000. The US organization Physicians for Human Rights was not founded until 1986, and their focus, at least for some time, was on the health effects of civil and political rights abuse, such as torture, the death sentence, and inhumane prison conditions. Nevertheless, human rights issues were importantly engaged in another way: effectively, in the need to protect everyone’s civil rights, such as freedom of movement and association, and freedom from prejudice and discrimination in the face of a virulent infection posing a deadly threat.
Jonathan Mann and colleagues helpfully distinguish three linkages between health and human rights. First, there are ways in which health policy can lead to human rights abuses, such as forced incarceration. Second, there are ways in which human rights abuses can have severely adverse health effects, as in the case of torture, but also in more mundane cases such as extreme poverty and discrimination in access to health services. And finally there are cases where the human right to health is itself directly at issue in terms of the right to treatment.8
As we have already seen, human rights are generally regarded as creating three types of duties for governments: to respect, to protect, and to fulfill. The first includes the call on government not to violate rights through state-directed forms of discrimination. The second calls on the government to protect people from the victimization and prejudice of other individuals and institutions. The third requires the government to ensure the provision of necessary resources to all and to put into place policies, legislation, and infrastructure to guarantee secure enjoyment of rights.
The early connection between human rights and health was primarily concerned with discrimination, exclusion, and protection. First, governments themselves had to decide how to treat individuals who had, or were believed to be at risk for, AIDS, given the seriousness of the condition. Traditional public health responses may have indicated forced isolation, for example. Should governments pursue this policy, or would it fail to respect the rights of people with AIDS? Would failure to do so be to fall down in the duty to protect the rights of other citizens, failing to protect them from a serious threat to health?
Second, how should the medical profession behave? As David Lush, an HIV activist living with HIV in Namibia points out, HIV “lays bare the myth of medical invincibility.”9 The medical profession was faced with a devastating condition for which it had no cure or, for a long time, any significant strategies for mitigation. The medical profession could, and did, treat secondary infections as they arose, but what should they do, for example, about informing patients of the doctor’s assessment of their underlying condition? In the absence of any definitive test, they had to decide whether they should petrify the patient by revealing their suspicions, or paternalistically keep everything in a state of uncertainty or even false reassurance. Which policy would be more compliant with respecting human rights? And finally, governments had to formulate policies to deal with discrimination in housing, employment, insurance, and so on. Is it reasonable to allow individuals to choose who to associate with, and thereby exclude contact with those whom they believe to be infected with a fatal disease for which there is no cure, or is this unjustified discrimination?
Many of these questions could not be resolved until more was known about the condition and its modes of transmission. After initial speculative hypotheses about its causes, work in the USA and France led to a scientific consensus around 1983 that AIDS was caused by a previously unknown retrovirus, subsequently called HIV, and all known forms of transmission were through mixing of bodily fluids and especially blood contact. Once this was understood, it was not necessary to know the precise cause to be able to recommend and implement public health measures to reduce infection, such as safe sex, no sharing of needles among drug addicts, and much more rigorous handling of medical blood products especially for transfusion. Many of these precautions have now become a routine fact of life, such as sports players leaving the field to have cuts attended to, whereas once they would have heroically played on, or supermarkets selling condoms on open shelves, when once any such purchase would have been furtive and hidden. Having a more precise account of causation, however, generated the possibility of therapies. It was thought that it should be a relatively routine matter to develop a vaccine, just as medical research had done for other viral diseases such as smallpox, measles, mumps, rubella, polio, and influenza.10 A huge research effort was set in motion, especially in the US.
One of the first practical discoveries, in 1984, was a blood test for HIV infection, which gave rise to the possibility of screening programs, and then acting on the basis of the information received. Interestingly, Peter Baldwin points out that although HIV/AIDS presented effectively the same problem throughout Western Europe as it did in North America, different countries took significantly different approaches.11 The USA and Sweden, he argues, tended to take more restrictive measures than, for example, France and (with the exception of Bavaria) Germany, by undertaking such measures as closing their borders to immigrants who were HIV-positive, and, in some cases, even enforcing isolation. This may seem surprising, as the USA and Sweden have a reputation as the more liberal societies. Whether this liberal reputation is really deserved could be debated but Baldwin argues that every country already had in place a set of practices and regulations to deal with much earlier outbreaks of infectious disease, and their initial response was, for the most part, to dust off and roll out pre-existing policies. Public health measures could include isolation; a requirement to disclose HIV status to sexual partners; forced treatment; restrictions on who could enter the country or donate blood or breast milk; forced screening of risk groups (including pregnant women, prostitutes and their clients, prisoners, medical personnel, or even the whole population); contact tracing; registration and notification of change of address; restrictions on marriage; criminalization of, or assigning civil liability for, knowing or reckless transmission; compulsory sterilization of HIV-positive women or forced abortion; exclusion of children from school; and special regulations about the disposal of bodies after death.
Most of these strategies were attempted somewhere, as were many others, such as the regulation, in West Australia, that made it an offense “for a seropositive to board a public bus without notifying the driver.”12 In many places much turned on whether HIV/AIDS was to be classified as a sexually transmitted disease. A decision to do so was made in Sweden, which meant that those identified as HIV-positive were denied benefits available to those with other conditions, and in addition were subjected to very rigorous public health regulations, with dozens of people eventually subjected to forced isolation.13 Interestingly, General Comment 14, which we considered in chapter 2, discusses the circumstances under which forced isolation is morally legitimate, suggesting that in addition to being carried out only when deemed strictly necessary, the least restrictive practice should be adopted, and it should be of limited duration and subject to review. In a later European Court judgment, Sweden was held to have violated the human right to liberty of the plaintiff, an HIV-positive man who was held in forced isolation, by adopting more restrictive measures than were necessary.14
It is also worth keeping in mind that the women most at risk—drug users and the partners of addicts—were, in the US, disproportionately black and Hispanic, and thus members of groups that historically had suffered sterilization and eugenic policies as well as much other discrimination. Hence, in the USA issues concerning reproduction and abortion were even more sensitive than they were elsewhere.15
While Sweden and the USA looked at measures to control the movement and activities of people with HIV/AIDS, especially imposing immigration and visiting restrictions on people with HIV, other countries put their emphasis on the education of people both with and without HIV/AIDS. It is widely noted that the policies actually adopted leaned either toward the authoritarian, enforcing preventative rules and regulations, or the consensual, where voluntary behavior change was taken to be key, with education, not enforcement, at the center. One of the best-known of the educational programs was the UK’s “Don’t Die of Ignorance” campaign of 1986–7, involving posters, leaflets, and TV advertising, suggesting, somewhat misleadingly, that the entire population was at risk for HIV infection.
With the medical profession relatively powerless to help, the research endeavor far from yielding a cure or, in the early days, effective mitigation, and governments slow to respond, it is not surprising that, as Peter Piot and colleagues note, civil society advocacy took the lead.16 And, we should add, it was a recently radicalized and empowered, not to say reasonably affluent, section of civil society that did this. AIDS struck barely more than a decade after New York’s Stonewall riots, often regarded as the start of the gay rights movement. Indeed, even until the early 1970s homosexuality had been considered an illness in the USA.17 In the intervening years gay rights and gay pride groups had mobilized to fight against discrimination. With the advent of AIDS, much of this energy was channeled toward new organizations focused on the health of gay and bisexual men: promoting safer sexual practices and supporting those people who were living with AIDS, both medically and in terms of civil and political rights. Such groups included, in the USA, Gay Men’s Health Crisis and San Francisco AIDS Foundation; in the UK, the Terrence Higgins Trust; and in France, AIDES, founded by Daniel Defert, the partner of philosopher Michel Foucault, who had died of AIDS in 1984.18
These civil society groups responded with impressive pace and force. A statement as early as 1983 when no treatment was available and “a diagnosis of AIDS was a death sentence,” kicked back at the prejudice that was gripping Western societies. Set out by the Advisory Committee of People with AIDS, it became known as the Denver Principles, and although not written in the language of human rights is a striking model of what a comprehensive human rights charter might be for a group particularly at risk for a dangerous infectious disease. It begins with a powerful statement about classification:
We condemn attempts to label us as “victims,” a term which implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
It then moves on to recommendations for health care professionals, and then “recommendations for all people,” “recommendations for people with AIDS,” and finally “rights of people with AIDS.” These latter sections are worth quoting at length:
RECOMMENDATIONS FOR ALL PEOPLE
1. Support & Membership in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.
RECOMMENDATIONS FOR PEOPLE WITH AIDS
1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
2. Be involved at every level of decision-making and specifically serve on the board of directors of provider organizations.
3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel that people with AIDS have an ethical responsibility to inform their potential partners of their health status.
RIGHTS OF PEOPLE WITH AIDS
1. To live as full and satisfying sexual and emotional lives as anyone else.
2. To receive quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.
3. To obtain full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.
4. To ensure privacy and confidentiality of medical records, to receive human respect and the right to choose who their significant others are.
5. To die—and to LIVE—in dignity.19
It is worth noting that the responsibilities of people with AIDS are not said to be to refrain from sex, as conservative approaches had advocated as in earlier decades regarding sexually transmitted disease, but to find safer forms of sex. This reflects a shift in outlook, in which, as Peter Baldwin puts it, “[Sex] was no longer regarded just as pleasure, much less as merely a happy interlude on the road to reproduction, but was also seen as a fundamental human right.”20
The Denver Principles no doubt influenced the process leading to the much later “GIPA Principle”—Greater Involvement of People Living with HIV/AIDS—agreed at the 1994 Paris Aids Summit, which calls for the creation of supportive political, legal and social environments for people living with HIV/AIDS.21 As a multinational agreement, rather than the mission statement of an activist group, inevitably the GIPA Principle lacks the punch of the Denver Principles, but nevertheless it implicitly acknowledged that health has complex social and political aspects and is not simply a matter for the medical profession.
The difficulty of responding to the AIDS crisis was well summed up by Australian judge Justice Michael Kirby, who warned against a class of new viruses: HIL, or Highly Inefficient Laws, by which he meant panicky and punitive restrictions on people with or at risk for HIV. Kirby argues that in general many laws are much less effective in changing behavior than we might naively suppose, and this is particularly likely to be the case regarding laws attempting to regulate the behavior of people with AIDS. As he puts it, some people’s “physiological needs (whether for drugs or sex) are more powerful than their fears of detection and punishment.”22 In particular, he argued against forms of mandatory testing and certification, which, he suggests, are enormously costly for society and for the individuals tested, yet will have only the most marginal benefit, especially at a time when no cure or effective therapy is known. To give a sense of the cost–benefit analysis, consider the state of Illinois, which required premarital screening. In the first six months of the program 70,000 applicants were screened, at a cost of $2.5 million (charged to the applicants), but just eight people were found to be seropositive. And those who didn’t want to be tested simply got married elsewhere.23
It might be thought that detecting eight people with HIV is a significant result and well worth the cost and inconvenience of the screening program. But to underscore Kirby’s point, it is particularly important to note that the virus can be present in the body for some time before it creates antibodies. As the test detects not the virus itself but antibodies, it is likely to produce a significant number of false negatives of people who are relatively recently infected. For this reason mass screening could, in fact, be a threat to public health if infected individuals believe they have received the all-clear.
In essence, the early stages of the HIV/AIDS crisis brings into sharpest possible focus the central dilemma of human rights and public health in the face of infectious disease. How do you respect the human right to liberty of people living with the condition while protecting the human right to health of the much wider population who do not (yet) have it? In the history of infectious disease, it has been common to sacrifice the human rights of the ill, especially through enforced isolation, to protect the healthy.24 However, there are hidden complexities in this argument, even beyond the question of balancing one set of rights against another. For in the mid- to late 1980s it was realized that unless the civil rights of people living with HIV/AIDS were protected, public health was at risk. People would not take tests if they feared that a positive result might be released or leaked to family, neighbors, employers, or insurers. This led, according to Jonathan Mann, for the first time, to the game-changing idea that preventing discrimination must be intrinsic to public health programs, as well as to a recognition that weak support for human rights for sex workers, illegal immigrants, the poor, drug addicts, and young homeless people itself became a risk factor for HIV infection.25 Like many infectious diseases, HIV/AIDS started among the affluent and well-traveled, but before long gravitated toward those who are otherwise marginalized in society.
But unless we wish to argue, implausibly, that restrictive measures are always ineffective, there may be some policies that are both restrictive and effective in reducing the spread of disease, such as, perhaps, quarantine, as practiced in a relatively humane form in Cuba.26 In the absence of knowledge of cause or cure, there is no obvious answer to what should be done. It would be no surprise to find exactly what Peter Baldwin has documented: that at least in the first decade, different countries or regions attempted to settle the balance in quite different ways, simply using the strategy they had always used in public health emergencies. But when the message sunk in that restricting the activities of people living with HIV simply made them less likely to come forward, a consensus settled on respecting their human rights to liberty and non-discrimination.27
There was a period, we have seen, in which HIV/AIDS could be detected by blood test but no therapy was available. Under such circumstances, the human right to health of those infected has little or no application.28 Fortunately, initial scientific progress was very rapid, with the first anti-retroviral treatment becoming available in 1987. This was the previously known but clinically unused drug AZT (full name Azidothymidine, also known as Zidovudine and Retrovir) which had been designed as a cancer treatment. AZT was found to be effective in the test tube against HIV in 1985, and after an unusually rapid development through clinical trial, came into general use just two years later. This speed was remarkable, for the research ethics of testing what might be the first treatment of a fatal condition are exceptionally tense. To test efficacy it is standard scientific practice to use a randomized control trial, in which one group is given the active drug and the other a placebo. Such a trial was conducted and the results, published in 1987, were encouraging. A total of 282 patients took part and were given treatment for between eight and twenty-four weeks. By the end of treatment nineteen patients in the control arm had died but only one who received AZT.29 However, serious side effects were observed, to the point where some had to stop treatment.30
The sample size was small, and although the trial was highly promising normally much more research would be conducted before a drug was declared safe and effective enough to use. No doubt if the condition had not been so serious and politically highly charged, many more studies would have been conducted before release. But in this case, the ethical questions are very difficult. Is it acceptable to sign people up to a trial of this sort, people who are desperate for a cure and agree to be a subject of research in the hope that they might benefit, and then to assign them to the control arm to receive a placebo? Indeed, it could be thought a contravention of one’s human rights to be assigned to the control arm, to be treated as a means toward scientific progress.
In addition, before a drug is released it is normally subjected to safety tests to determine whether it has side effects. But if it is effective against a fatal threat, we might wonder whether to care about the side effects. Isn’t it a violation of people’s right to health to delay releasing the treatment while the side effects are tested? As it turned out, the sense of crisis meant that it was almost inevitable that the humanitarian arguments would win out over the “sound science” arguments, with questions of the rights of research subjects apparently submerged in the urgency of the situation. Arguably, this left the medical establishment later vulnerable to accusations that the new therapies had never been fully tested.
Once AZT became available, it was used at first as a treatment to mitigate the development of HIV/AIDS, reducing the viral load, but by 1990 it was understood that it could be used as a preventive measure as well, in particular to prevent mother-to-child transmission. But there remained an underbelly of HIV skepticism, led by University of California, Berkeley biologist Peter Duesberg and others, which denied that HIV was the cause of AIDS. If correct this would have meant that AZT was useless, even counterproductive. Indeed, there were arguments that the main symptoms of AIDS were actually caused by the toxic effects of AZT. When it was first introduced, AZT was used in what are now regarded as very high doses and the side effects were often severe. In any case, treatment increased survival only for a matter of months rather than years. Even the medical establishment had to concede that AZT was by no means a cure, even though it did extend life.31
This radical skepticism overlapped with a legitimate set of general concerns over the effectiveness and serious side effects of medications—the phenomenon of iatrogenic disease (physician-induced illness)—as well as the general sociological issues of “medicalization.” Those regarded as suffering from serious illness can find their life taken over by the medical profession to a point where they become a “victim” of a disease or “patient” in the sense we saw the Denver Principles trying to resist, rather than a person who happens to be living with a condition. These concerns, we can see, intersect with human rights in that one’s life can be taken over by the medical profession, destroying the dignity and sense of control of the individual. It is entirely reasonable to try to resist medicalization, but in this case resistance sometimes took the form of objection to medication, which was particularly tragic when much more effective medication later did become available.
Questioning whether the treatment is effective is one thing. Who should pay for it is another, and here the human right to health takes on a new dimension: the human right to access to treatment. These issues were more straightforward in some countries than others. Where there is a national health system, the right to health has already been embedded in national priorities, and once a treatment becomes available for prescription, all who qualify, as in Britain and Sweden, received treatment without charge. More difficult was whether this should be extended to recent immigrants, especially those known to be HIV-positive on arrival. Countries with universal coverage funded by tax or national insurance had standard procedures already in place, although it appears that in some cases, such as in France, members of highly excluded groups, such as drug addicts and illegal immigrants, fell through the cracks in the system and remained uninsured and untreated. And, of course, these are high-risk groups for HIV/AIDS.32 The system in the USA, however, was not well-equipped to supply expensive treatments to a vulnerable population. In the 1980s, when AZT was available but only at high cost, many people with HIV lacked coverage, others lost coverage when they were no longer able to work, and still others found their insurance not covering many of the costs, or even being terminated. Medicaid could cover some of these people, but not the “working poor” or those with savings, and so it became common for people to “asset-strip” to qualify for government assistance.
After pressure and the recognition that the situation in the US was unacceptable and unsustainable, a new law, the Ryan White Comprehensive AIDS Resources Emergency Act (CARE), was passed in 1990. Ryan White was a teenage hemophiliac who had been subject to vicious discrimination in his home town after being diagnosed with AIDS; later, his family moved to a much more receptive and welcoming district, and the publicity concerning his plight led to his being befriended by celebrities such as Elton John and Michael Jackson. This in turn created greater publicity and he became a celebrity himself, often appearing on television to talk about his life and experiences. Elton John was present at his deathbed and played the piano at his funeral.33 It is said that the national attention to his case—an ordinary American boy who was neither homosexual nor a drug user, but happened to become infected through blood products—helped normalize HIV/AIDS in the USA, alongside diagnoses of celebrities such as movie star Rock Hudson, tennis player Arthur Ashe, and basketball player Magic Johnson. Ryan White died in 1990, and in that year the CARE Act was passed in his name. It provides medical care as a last resort, when all other avenues of funding are exhausted or not available. It is an example of what is often called “AIDS exceptionalism” for, apart from the anomalous example of renal dialysis,34 it is only in the case of HIV/AIDS that the USA guarantees paid medical care for all. Other laws were also passed in the USA to ensure continuity of insurance, such as the Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA), which allowed people leaving employment to maintain their workplace health insurance for a fixed period.35 In retrospect we can see these measures as an implicit recognition of the human right to health, in the sense of the right to access to treatment. It would simply be a gross offence against human dignity to allow the citizens of a wealthy country to die when drugs to extend their lives are available and are being used by many of their fellow citizens who happen to have the wealth or the right health plan.
Access to therapy, and in particular AZT, became close to universal in the developed world. However, we have seen already that AZT is not particularly effective. One reason for this is that HIV rapidly mutates in the human body. Not only this, but the HIV virus imprints itself within human chromosomes, so that once infection has occurred it seems impossible to remove.36 Rapid mutation makes a vaccine very difficult to develop—much more so than was optimistically assumed at first—and it also means that the virus can easily become resistant to drugs. For this reason AZT became used as part of combination therapies in the 1990s using several different drugs together—“triple therapy”—to combat resistance. Finally, in the mid-1990s a new type of drug became available, known as protease inhibitors, and in combination with AZT or similar drugs treatment proved much more effective. This treatment is known as HAART (highly active anti-retroviral therapy). By use of such approaches HIV is now regarded in wealthy countries as more akin to a chronic illness, such as diabetes, requiring regular medication, rather than the immediate death sentence it once seemed to be. This is not to say that there are no ethical or policy questions still in need of attention. The major issue, of course, is the very high cost of HAART and who should pay for it. In the UK, for example, it is estimated that the annual cost is £16,000 (although it seems that some doctors do not have the budget to prescribe the most expensive new therapies). Despite the expense, the price paid is sometimes said to be very cost-effective as it keeps people living with HIV from opportunistic infections which would be much more expensive to treat, as well as allowing them to function as productive members of society.37
Where, then, are we regarding the human right to health and HIV/AIDS in the wealthy countries? If we think of the human right to health as offering protection from “standard threats to health,” then HIV/AIDS is now a standard threat and we have the means, both technical and financial, to meet that threat, and a range of laws and institutions in place to make doing so almost a matter of medical routine. Discrimination in the workplace and housing is now largely a thing of the past, partly as a result of highly active human rights campaigns: first, campaigns against discrimination and victimization in all its forms, and second, campaigns for the right to treatment.
In sum, in wealthy countries governments have made a great deal of progress in meeting their requirements to respect, protect, and fulfill the human right to health, at least in respect to HIV/AIDS. But they did not do this unprompted. Grassroots protest and action pressured governments to protect the rights and civil liberties of people living with HIV, and to engage in public health campaigns for the sake of the general population. Campaigning groups forced the hand of government to sponsor research and to find ways to subsidize expensive treatments.
Yet this is not the whole picture. We noted above that HIV/AIDS, like all infectious diseases, eventually seeks out the marginalized, wherever it starts. People of disadvantaged status, such as those illegally resident in the country, the homeless, drug addicts, and prostitutes, are now at much higher risk than the rest of the population, and do not always receive access to diagnosis and medication. Writing in 1992, Paul Farmer noted, “Among young black women living in New York State AIDS has recently become the leading cause of death.”38 “Hard-to-reach” groups remain relatively neglected even now, and so there is human right to health work still to be done, even in the wealthiest countries of the world.
HIV/AIDS AND HAITIANS
IN THE UNITED STATES
As we saw, Haitians were identified as one of the “four H’s”; the early risk groups for AIDS before HIV was identified. Being singled out in such a way gave rise, immediately, to speculation about voodoo practices involving blood—speculation not only in the popular press, but in respected medical journals.39 Equally, discussion focused on the possibility that although open homosexuality was very rare in Haiti, the country nevertheless must have functioned as a destination for gay American sex tourists. This then raised the further question of direction of travel. Did the USA inadvertently import AIDS from Haiti, or was it spread in the other direction? Indeed, did both countries receive their first infections from other sources? Doubts, speculations, and uncertainties draw out several issues of great importance for thinking about human rights and health.
Before looking in more detail at HIV/AIDS in Haitians in the United States, it is worth providing just a little background about Haiti itself. Propelled into the world media by the tragic earthquake of 2010 which killed perhaps a quarter of a million people and left hundreds of thousands still without homes or even adequate shelter as I write more than a year later, Haiti was already known as the poorest country in the western hemisphere, with shocking rates of illiteracy and child mortality, as well as many other indicators of desperate poverty. It is around 700 miles from Florida—hence accessible by an often perilous boat journey—and 50 miles east of Cuba. It occupies the western portion of the island evocatively called Hispaniola, the eastern part of which forms the Dominican Republic. Haiti gained independence from its colonial master, France, in 1804, by means of a slave rebellion that had taken more than a decade of violent struggle.40 It has never prospered. First, it was subjected to ruinous compensation payments to France, agreed in 1825 as a condition of France’s recognition of Haiti’s independence. It is also troubled by constant interference in its affairs by its dominant and bullying northern neighbor, which was at first especially worried, in the Southern slave states, by the example set of a slave rebellion. International trade and cooperation was problematic throughout the nineteenth century, with foreign business interests increasingly intervening in Haitian politics and an unsustainable national debt accumulating.
The US invaded Haiti in 1915 as the culmination of an increasingly interventionist stance over the previous decades, and ultimately took full control, instituting a new constitution which for the first time allowed foreign ownership of land, a policy that was aggressively pursued. Karl Marx pointed out that in late feudal England, the dispossession of the peasantry led to a supply of ready—desperate and therefore cheap—labor. These comments could equally be applied to Haiti, which became a cheap labor source supplying the American market. François Duvalier (Papa Doc) was elected president in 1957, but over the following years converted his popular rule into an increasingly corrupt and repressive dictatorship, enforced by the brutal Tonton Macoutes. On his death in 1971 he was replaced by his nineteen-year-old son Jean-Claude (Baby Doc) who continued in power until 1985. Over this period Haiti remained essentially a subcontracting outpost for the United States. It was also heavily dependent on overseas aid, much of it in the form of loans, which turned it into one of the most heavily indebted countries in the world. An astonishing portion of this aid was siphoned off into the Swiss bank accounts of the Duvaliers and their associates.
A popular revolt in 1986 brought down the Duvalier family. Then followed a period of great instability punctuated by several coups d’état and politically motivated massacres.41 Finally, in 1990, Haiti had a genuinely democratic election, and voted Jean-Bertrand Aristide president. Unfortunately, 1991 saw another military coup that lasted until 1994 when Aristide was restored to power. Following the example of Costa Rica, he put in place steps to disband the army, but that was not enough to prevent yet another military coup in 2004, this time widely believed to have been financed and organized by the USA, and indirectly prompted by an aid embargo designed to force Aristide into political reforms, which left Haiti unable to rise above its grinding poverty.
As a result of the appalling conditions at home, many Haitians sought a life elsewhere, hundreds of thousands emigrating to North America. There, though, they often suffered routine discrimination. The revelation that Haitians were especially at risk for AIDS was a further blow to their standing in North American society, and instantly gave rise to the speculation that AIDS must have arrived in the USA from Haiti.
This question of causal direction has been hotly debated. In 1992, Paul Farmer wrote, “What data exist do not support the thesis that HIV reached North America from Haiti,”42 and he advanced the thesis that HIV had reached Haiti through American sex tourists, and then spread through heterosexual contact, especially to the poor and vulnerable who moved to the city as their best hope of survival. His case studies are consistent with this view, as is his finding that a very high prevalence rate was to be found in the Port-au-Prince suburb of Carrefour, which was the main center of both female and male prostitution in Haiti. However, in 2007 research was published, based on analysis of the HIV virus and its subtypes, suggesting that the HIV-1 B virus, which is the most prevalent form of the virus outside Southern Africa and India (where in both regions HIV-1 C is dominant), moved from Africa to Haiti some time in the late 1960s. It appears that the virus stayed within Haiti for several years, transmitted largely through heterosexual contact, before being dispersed more broadly, including into the USA, where, according to this analysis, it arrived in about 1969, through a single transmission.43
Does it matter? The question of origin is of historical interest, but more importantly perhaps, it is vital in the attempt to design vaccines. Knowing which are the earliest forms of the virus, and how they transfer and mutate, will be necessary if a universally effective vaccine is ever to be produced. It is less clear, however, that there is any immediate ethical significance in these findings. Many Americans wanted to “blame” Haiti for AIDS; others wanted to blame North Americans for bringing AIDS to Haiti. With regard to this dispute, moral philosophers will point out that commentators have failed to distinguish causal responsibility and moral responsibility. An avalanche may be triggered by a mountaineer’s cough. Although causally responsible he or she is unlikely to be morally responsible, unless it was already known that an avalanche was a real possibility and coughing a real risk. In the case of HIV/AIDS, no one could have known that their behavior had any real probability of leading to a pandemic. The notion of moral blame is out of place, whichever way the virus was transmitted (unless, of course, one of the wild conspiracy theories turns out to be correct). Once the virus was in the human population, some or other route of transmission was very likely. Nevertheless, it must be acknowledged that such academic moral arguments, however strong, are unlikely to undercut public attributions of blame, for which causal history is central. But we should note that all sides in this debate, heatedly trying to assert or deny a causal pathway, run the risk of making the same confusion between causal and moral responsibility.
There could well, though, be public health implications of knowing the origin of the condition. If it is true that HIV/AIDS had been circulating in Haiti before it arrived in the USA, it is likely that the prevalence among Haitians would be higher than that of the citizens of the USA, and therefore, from a purely medical perspective, it would be reasonable to treat Haitians as a special risk group, as, indeed, was done without solid evidence when AIDS was first identified.
Yet what follows, at an official level, from being identified as a member of a high-risk group is another matter. It could be, for example, that members of a special risk group could be offered additional help. Alternatively, their activity could be restricted, as happened in various times and in various ways. Again we see the central human rights dilemma: is it right to restrict the liberty of one group in order to protect the health of another? Many will instead argue for a consensual approach: encourage those giving blood to understand the issues and not to donate if they have any doubts. The problem is that even if a measure is indicated from a medical point of view, medicine does not operate in a socially sterile environment. Public-health ordinances can create considerable damage, most obviously of stigma, but, as we will see, much deeper than that.
In the USA, unfortunately, quite often a heavy hand was tried first, and even if policy changed later, irreparable damage had been done. Once Haitians were identified as a risk category the further consequences were devastating. For one thing, the Haitian tourist industry, which had been a major source of foreign revenues and employment, collapsed, with Americans no longer willing to risk setting foot on the island. For Haitians living in the USA, a group already struggling for being “black, foreign, and French/Creole speaking”44 the association between their country of origin and AIDS led to a whole gamut of discrimination and prejudice, from playground taunts to bankruptcy of small business owners and eviction. It is reported that many Haitians learned to pass themselves off as from other French-speaking Caribbean islands.45
In response to pressure and lobbying, the New York City Department of Health removed Haitians from their list of risk groups in 1983. As Paul Farmer notes, “The category was not easily removed, however, from the list then firmly implanted in the popular imagination.”46 It took a further two years for the Centers for Disease Control (CDC) to follow suit, but even this gave Haitians little relief.
Further damage to Haitians was done offstage. In the narrative of HIV/AIDS, it is the coup of 1991 that is the key moment in the story. Aristide had a great deal of popular support, and thus the military coup that ousted him was widely opposed. Once the military had taken power it started to arrest and execute Aristide’s supporters. Fearing for their lives many took flight, especially over water to the USA, where they became known as “boat people.” This was not new. Large numbers of Haitians had sought refuge in the USA for the preceding decades, but an agreement between the USA and Haiti meant that almost all of them were returned. Paul Farmer cites the astonishing statistic that between 1981 and 1991, 24,559 Haitian refugees sought asylum in the USA, and just eight were accepted.47 For a short time after the military coup of 1991 the USA suspended this policy, but then, against the protests of humanitarian organizations and the United Nations, reinstated it again.
Then the USA agreed to a compromise. Instead of returning the refugees to Haiti and a highly uncertain future, they would be sent to a place of safety: chillingly, to the now notorious Guantánamo Bay, a US military base on the island of Cuba. Although represented as a “haven” or “oasis” for Haitians, it was more like an internment camp. Here, in their thousands, they were housed in tents and temporary shelters in a secure encampment for months, unable to leave, and some complaining of severe mistreatment by the American military personnel. By summer 1992, Guantánamo was too overcrowded to accept any more refugees, so the policy changed again. Now Haitian refugees arriving by boat were to be returned to Haiti, in contrast with Cubans, all of whom were declared political refugees on arrival in the USA.
The USA did accept that some refugees were genuinely in danger of their lives. Paul Farmer tells the story of Yolande Jean, who managed to retain documents proving that she had previously been arrested and tortured. US law should have granted her a safe haven as a political refugee, and should have allowed her to be admitted after her assessment at Guantánamo. Unfortunately, as part of the process she was tested and found to be HIV-positive. By this time the USA had adopted the highly restrictive policy of denying those who were HIV-positive entry into the country. This policy was adopted for two reasons: one was the risk to public health, the other that the USA was not prepared to pay for treatment for new immigrants.48 Yolande Jean was not returned to Haiti, but instead kept at Guantánamo as one of around 200 HIV-positive Haitians who had a genuine case for asylum. They were housed close together under conditions in which they were likely to pass on to each other opportunistic infections such as tuberculosis. Although the camp was represented as a medical facility, it had few medical staff. Demonstrations and protests brought only harsher treatment, and Yolande Jean led a hunger strike, which, according to her report, was dealt with by brutal beatings. Some inmates attempted to escape, others to commit suicide. Eventually, in 1993 Judge Johnson declared the camp illegal and the refugees, including Yolande Jean, were admitted to the USA. The judge noted that it was “the only known refugee camp in the world composed entirely of HIV-positive refugees” given “the kind of indefinite detention usually reserved for spies and murderers.”49 Or, in the light of more recent history, one might add, those suspected of terrorism.
Once again we see the pointed clash between the human rights of those infected with HIV/AIDS and the right to health of those who are not infected. In this case, however, the clash is compounded by the fact that the health of those infected was largely neglected, and the threat posed to ordinary Americans by Haitian immigrants was negligible. But it took several years for these factors to bubble to the surface in a way that eventually led to a reasonable resolution.
THE GLOBAL SPREAD OF HIV/AIDS: AFRICA
By 1988, 138 countries had reported at least one case of HIV/AIDS to the World Health Organization, and by 2004 there were believed to be almost 40 million cases.50 HIV/AIDS spread through South and South-East Asia, through Eastern Europe and through Latin America. But its presence has been felt most dramatically in sub-Saharan Africa.
Though it was discovered first in the USA, within a few years scientists were sure that HIV/AIDS had originated in Africa. Current theory is that the virus crossed the species barrier at least three times, in west central Africa. It is thought that the virus originated in chimpanzees and may have been transmitted to human beings, probably through the mixing of blood during the violence of hunting, twice directly from chimpanzees and once via gorillas,51 although other primates such as the sooty mangabey are also mentioned.52 The date of earliest crossover has been pushed further and further back and now some time at least before 1921 and perhaps even before 1902 is being suggested.53 Accordingly, mysterious earlier deaths have been reexamined54 and confirmed cases include a Norwegian sailor who, along with his wife and child, was infected; all died in 1976.55
Although HIV/AIDS infection in Africa was well-known, response was very slow, at least relative to the pace in the developed world. A combination of factors was responsible. For one thing, African governments, in some cases, were in no mood to publicize the existence of AIDS in their country, given that its best known means of transmission were injecting drugs and homosexual sex, both of which were even greater taboos and sources of shame in many African countries than in the wealthy nations.56 Indeed, active discrimination against homosexuals remains common in many African countries. For example, homosexuality is illegal in Uganda, where a highly punitive anti-homosexuality bill was recently proposed.57
A second complicating factor was that there are two main strains of HIV: HIV-1 and HIV-2. HIV-1 is the source of the great majority of infections in the USA and Europe, but, initially at least, HIV-2 was more common in West Africa. The course of HIV-2 is slower than HIV-1, although eventually it has the same outcomes.58 However, the existence of HIV-2 in West Africa gave rise to a belief that HIV infection in Africa generally was less serious than in the developed world, that it must have been around for some time without causing a major problem, and that it would not cause the deaths seen elsewhere. In truth, this may have been a comforting rationalization of inaction, mixed in with unconscious racism and the belief that life in Africa is “cheap” when there is so much early death in any case. Inaction, at least at first, was only to be expected (which is not to say justified) when the costs of action in the form of a wide public health response and, especially, highly expensive anti-retroviral treatment would have been enormous. However, one important difference between HIV/AIDS in Africa and the developed world was simply that in Africa it spread predominantly through heterosexual sex, and from the start a much higher proportion of women were infected. More than 50 percent of people living with HIV in sub-Saharan Africa are women.59
HIV is thought to have originated in western equatorial Africa, spread west to the Ivory Coast and east to the Democratic Republic of Congo (formerly Zaire) and then radiated through central Africa along rivers and trade routes. By the early 1980s AIDS was obviously present in Tanzania and in Uganda, where the symptoms of persistent untreatable diarrhea and subsequent weight loss led to it being referred to as “slim disease.”60 When reading medical papers, the technical names of conditions can have a numbing and abstracting effect, so that one forgets what it is like for people, especially in poor resource settings, to suffer. Here is one moving description from the former Secretary-General of the International AIDS Society, L. O. Kallings:
Previously strong and beautiful young people shrink to gnomes, in poor countries often lying unattended on the floor with fever, coughing due to tuberculosis or pneumonia or other causes, constant diarrhoea and difficulty in eating and drinking due to the pain caused by oral and oesophageal candidiasis. The skin is often affected with large shingle sores. People with AIDS are often very weak due to the deep asthenia, sometimes demented, sometimes blind due to cytomegalo-retinitis. They are totally helpless, often abandoned by any remaining family members or chased away to the outskirts of the village by neighbours who are afraid of contracting AIDS. Reportedly, people with AIDS may even be buried alive.61
AIDS spread through central Africa but concentrations were highest in Uganda and Tanzania. Infection spread into Zambia and Zimbabwe, but at first, during the apartheid era, South Africa remained relatively little touched. With the end of apartheid and the opening of the borders in 1994, the return of South Africans from exile and mass movement of labor, the picture changed dramatically and South Africa became the epicenter of the epidemic. It is true that Botswana and Swaziland had higher rates of infection, but South Africa has a much larger population. It is estimated that around 5 million people in South Africa are living with HIV and 600,000 have full-blown AIDS, with hundreds dying every day.62 In addition to everything else AIDS is also a cause of severe financial difficulty, not just in terms of loss of wage-earners but because of the African tradition of holding elaborate and very expensive funerals.63
Just as HIV/AIDS was taking a grip, development economics turned in what would prove to be a catastrophic direction. The World Bank tied overseas aid and loans to “structural adjustment,” attempting to bring developing countries out of poverty by stimulating the private sector and reducing the size and expenditure of the state, including public spending on the health sector. Whether or not this was the right thing to do from an economic point of view—and the results have not been encouraging—from the point of view of health it was a disaster, especially for countries trying to deal with the HIV/AIDS pandemic. It has been argued that the restrictions on health spending required by the World Bank and the International Monetary Fund left developing countries unable to meet their core obligations regarding the right to health of their citizens.64
At the same time that countries were unable to support their citizens’ health needs and rights from their own resources, other international organizations came to begin to understand their obligations of assistance, although it took some time to crank into gear. The Global Program on AIDS was set up in 1987, with Jonathan Mann appointed as director. From the start Mann emphasized the human rights of people living with HIV, arguing against forms of discrimination and punitive measures which would make things worse. Although it did a valuable job in raising awareness, lack of political and donor support limited the effectiveness of the Global Program.65 In 1996, UNAIDS was founded with Peter Piot at its head, drawing together a number of different agencies and providing leadership and governance. But it was not until 2001 with the establishment of the Global Fund to Fight AIDS, Tuberculosis, and Malaria, that substantial funding was achieved. At this time United Nations Secretary-General Kofi Annan noted that life-saving medicines were out of financial reach of 90 percent of sufferers, and called for a war chest of $7–10 billion to meet the funding gap.
Some were skeptical. The cost of the drugs seemed to make the idea of mass programs utopian. But that was not all. Notoriously, in 2001 Andrew Natsios, head of USAID, argued that Africans lacked the concept of Western time and would not be able to keep to the rigorous drug regimen necessary for HAART, which would then lead to greater drug resistance and bigger problems in future if medication was attempted.66 Equally it was said that HAART could only be administered in technically advanced systems where patients could be monitored, and to attempt to introduce it in other settings was worse than futile, for it would lead to the development of drug resistance.
Médecins Sans Frontières refused to accept this pessimism and set up some model treatment programs in the most difficult places, involving the use of relatively cheap generically manufactured drugs combining several therapies into a single pill and thereby reducing the complexity of treatment. They found other ways around high-tech monitoring and in 2003 were able to report adherence and survival rates comparable to those in the United States.67 The skeptics were wrong-footed. People in the developing world could benefit from advanced treatment if it was made available to them, and the human right to health demanded that it should be. Arguably this was the period in which the human right to health movement came of age. As we noted at the start of this chapter, 2003 was the year Nelson Mandela declared that AIDS was no longer merely a disease but a human rights issue, and the same year the World Health Organization launched its “3 x 5” initiative, aiming to have 3 million people in anti-retroviral treatment by 2005. The target was missed, but nevertheless the initiative led to a huge scaling-up of effort.68 It was not, though, until 2006 that the United Nations agreed to make universal access to treatment, prevention, care, and support its goal.69 Money became available, with important major funders including American president George W. Bush’s President’s Emergency Plan for AIDS Relief (PEPFAR) founded in 2003, and now the Gates Foundation. The global effort is astonishing. It has been said that there have been more than 40,000 NGOs devoted to AIDS.
Let us return to the situation at the end of the 1980s. Uganda managed to cap its epidemic, with the infection rate settling at around 7 percent. This is still staggeringly high, but well below that of southern Africa. Containment is attributed to the direct and frank way in which the matter was handled by Uganda’s President Museveni, who on hearing from Fidel Castro that Ugandan soldiers sent to Cuba for training were infected, embarked on a public information campaign explaining how the disease was spread and offered strict “zero grazing” advice to men.70 Museveni has more recently been in the news concerning possible unfair electioneering practices in Uganda, but he is credited with enlightened policy with regard to HIV infection. Equally important, however, was the civil society group TASO—the AIDS Support Organisation—founded in 1987 by Noerine Kaleeba and colleagues, several of whom were HIV-positive, and, sadly, did not survive for long. TASO’s mission is “to contribute to a process of preventing HIV infection, restoring hope and improving the quality of life of persons, families, and communities affected by HIV infection and disease,” at first through counseling, support and advice, and later through the distribution of anti-retrovirals, which it now sees as a demand justified by the human right to health.71
The Ugandan route, tragically, was not taken in South Africa, where President Mbeki preferred to follow the arguments of Peter Duesberg, who in a wide series of writings argued that HIV could not be the cause of AIDS. Duesberg’s work was at first treated with interest by at least some other scientists, and then, as more evidence became available, rejected by the scientific community. But Duesberg stuck to his guns, to the consternation of other scientists including the editor of the leading scientific journal Nature who personally published a rebuttal.72 Mbeki, a believer in “African solutions for African problems,” was opposed to Western medical approaches to AIDS, and especially AZT treatment, although it is less clear that he followed Duesberg in arguing that HIV was simply a “passenger virus” with no causal role in AIDS. Notoriously, as recently as 2003 Mbeki’s then health minister, Tshabalala-Msimang, urged South Africans to eat beetroot, garlic, lemon, olive oil, and African potatoes to boost their immune systems rather than take anti-retroviral therapies.73 This caused outrage and ridicule on the world stage, and dismay and embarrassment in South Africa where she became known as “Dr. Beetroot,” and was trenchantly criticized by civil society groups for violating the human right to health of those who needed treatment. Offers to help from other countries were declined, leading to a health and human rights crisis.74
This, then, was the official climate in which the HIV/AIDS epidemic unfolded in South Africa. Unlike Uganda, where the president had given a firm lead based on long-standing principles of public health, South Africa was plunged into confusion and those diagnosed with AIDS, or fearing they had it, were susceptible to anyone offering a cure or advice. For example, the belief that sexually transmitted disease can be cured by having sex with a virgin has surfaced from time to time over the centuries.75 Some researchers claim that this belief became widespread in South Africa, leading to child rape76 and the rape of disabled women who were often falsely assumed to be virgins.77 Some of the claims regarding a general belief in “virgin cleansing” have been disputed, but not the fact that the rape of young girls in South Africa was prevalent, possibly because it was thought that they presented a form of safe sex.78 Infant rape thankfully remained very low, but the rape, or coerced or pressured sex, of young girls at the onset of sexual maturity by much older men was much more common, with a large percentage of the perpetrators schoolteachers. This brutality has resulted in a situation in which the HIV infection rate is perhaps twenty-five times higher for teenage girls than for boys.79 It is part of a tragic spiral in which there are now millions of children in Africa living in households without adults, as AIDS has ravaged communities and left children with no surviving adult relations to look after them. Children in such situations are even more vulnerable to sexual predation by older men—not only rape but also “transactional sex,” exchanging sex for food or money, and the same is true for girls who live in refugee camps.80 Here we can see a bewildering cocktail of human rights abuses compounding each other, where the unnecessary death of parents leads to the potential destitution of children, who have to take huge and degrading risks to their health simply to survive.
In South Africa, then, the situation was ripe for an explosive rise in infections. Western countries were slow to offer help, which, in any case, the government did not seek and even rejected. As in the West it was left to civil society groups. Here the lead was taken by Treatment Action Campaign (TAC), led by the charismatic Zackie Achmat, who had previously been a successful gay rights activist, working with South Africa’s first openly gay judge, Edwin Cameron. Achmat had learned a good deal from his active experience as a schoolboy in the anti-apartheid movement, and later from models of gay rights activism in the United States. He was already a seasoned campaigner when he was diagnosed as HIV-positive in 1990, and soon became embroiled in the HIV/AIDS rights movement. In 1999 he decided to go on “drug hunger strike” until ordinary South Africans could also have access to treatment.81 The background was that the South African government’s attempts to find an African solution had led to the development of a drug called Virodene, based on an industrial solvent, which was very cheap but also exceptionally toxic, never properly tested, and not approved for use. But by 1997 triple therapy was available in private clinics in South Africa, at huge cost, well beyond the means of all but the very wealthiest. Achmat saw the enormous improvement triple therapy made to the health of his friend, Judge Cameron. But watching other friends die because they could not afford the drugs that might have saved their lives led Achmat to want to take firm action. At around the same time a woman called Gugu Dlamini who had the courage to admit on radio and television that she was HIV-positive—one of the very few to speak openly about HIV/AIDs—was knifed to death by her neighbors. Achmat, with colleagues, then founded Treatment Action Campaign (TAC) with the goals of bringing medication within the reach of affordability and supporting the civil rights of people living with HIV. It was at this point that Achmat announced his own drug hunger strike.
TAC came into being in time to help support a campaign to allow South Africa to produce generic versions of essential HIV medicines without suffering trade sanctions especially from the US. The background to this was the TRIPS agreement, signed in 1994, in which all member countries of the World Trade Organization agreed to an intellectual property rights regime respecting international patent rights for twenty years. Before TRIPS, several larger developing and medium-income countries had produced generic versions of important pharmaceuticals, but continuing to do so, after an agreed transition period, would violate TRIPS. Thirty-nine pharmaceutical companies attempted to enforce their claimed patent rights against South African infringement, filing suit in 2001.82 In response, activists accused pharmaceutical companies of violations of the human right to health by putting treatments out of financial reach, and calling on the international community to protect citizens of poor countries from these violations.
President Clinton responded to international pressure and protest in support of South Africa’s policy and the suit was withdrawn. This was a major victory, and TAC and Achmat engaged in a number of ingenious stunts and protests to persuade the major companies to dramatically lower the price of HIV-related drugs, or even to donate them free of charge. But this was not enough. The government itself was the next obstacle. Mbeki’s hostility to the mainstream science of HIV/AIDS meant that the drugs, though cheap or even free, would not generally be made available, for Mbeki continued to maintain that their toxicity made them too dangerous. Achmat himself was accused of being a tool of Big Pharma.83 Or, as it was put in an extraordinary complaint laid at the International Criminal Court at The Hague in 2007 by Advocate Anthony Brink, accusing Achmat of genocide for promoting AZT and other anti-retrovirals, “Achmat directs Treatment Action Campaign (‘TAC’), a professional lobby group that he founded in South Africa to shill on behalf of the multinational pharmaceutical industry by promoting the patented chemicals that it markets as so-called antiretroviral drugs (‘ARVs’) for the treatment of AIDS.”84
Realizing that the ANC government, with which they had worked constructively in the past, was now blocking progress, TAC reluctantly had to consider a legal response. Here the South African situation is particularly interesting from a human rights perspective, for the right to health was included in Article 27 of the new South African constitution which took effect in 1997, and includes “the right to have access to health care services, including reproductive health care” and the right to “emergency medical treatment.”85 This is an important example where a domestic constitutional court can, in effect, hear human right to health cases. The immediate prospects, however, of a successful legal action under this head were not encouraging. The main precedent was the case of Soobramoney v. Minister of Health, which was brought in 1997, very soon after the adoption of the new constitution.86 The claimant, Thiagraj Soobramoney, who was just forty-one, suffered from kidney failure and his life was in danger. He sought access to dialysis treatment at public expense in a hospital in Durban, but dialysis machines, which are very expensive, were in short supply. The hospital had set up tight guidelines for access, but he fell outside the criteria. He brought a legal action under Article 27 and in particular the right not to be denied emergency medical treatment, as well as Article 11 which states, bluntly enough, that “Everyone has the right to life.”
The court emphasized, however, that even the right to life has to be understood in the context of resource constraints, and followed other precedents that it simply is not the right authority to make resource allocation decisions. Consequently the judges concentrated on the question of whether the rules applied by the hospital for access to scarce dialysis machines could be justified, and here they found no objection. The case did not succeed, and Soobramoney died just a few days after the judgment was delivered.
Given the courts’ reasonable reluctance to make decisions concerning resource allocation, one might wonder whether anything is to be gained by pursuing a human right to health action. However, the position is not entirely bleak. In the Soobramoney case the judges referred to the Indian case of Paschim Banga Khet Mazdoor Samity and others v. State of West Bengal and another, where it was argued that the right to medical treatment falls under the constitutionally protected right to life. In this case a patient with severe head injuries was turned away from a number of state-funded hospitals and had to seek treatment at a private hospital. At least some of these state hospitals did in fact have available facilities, and denied him access on arbitrary grounds. Hence the court felt it could determine the case in the claimant’s favor without distorting health resource allocation decisions.
Of course, bringing an action for the right to anti-retroviral treatment for a whole class of patients has enormous resource implications. Nevertheless, in 1999 TAC pressed for the government to make Nevirapine available to HIV-infected pregnant women in order to decrease the probability that they would pass on the infection to their child. Indeed their campaign would seem to have been supported by the constitution’s Article 27(a), which provides “access to health care services, including reproductive health care.” The manufacturers of Nevirapine had, in fact, offered the drug to the government free of charge for a period, so, in contrast to Soobramoney, the resource implications were very limited. The treatment is very simple: the administration of a single dose to the mother and a few drops to the baby. However, even after treatment there remains a risk of passing on infection through breastfeeding, so a comprehensive package of treatment involves replacing breastfeeding with bottle feeding, which is not a trivial matter, especially given the strong cultural attachment to breastfeeding, advocacy of breastfeeding by the World Health Organization, the cost of formula milk, and the difficulty of obtaining safe water in some parts of the country. There would also be the need for infrastructural change and staff training. Citing concerns about safety and efficacy as well as the need to assess management issues, the government allowed only small-scale pilot studies, which it was very slow to implement. The Constitutional Court accepted that there were good public health reasons for having a pilot program, but was dismayed that the infants of mothers without access to private health care were suffering while the government dragged its feet. They did not accept the government’s contention that providing less than the more comprehensive package would be ineffective or harmful. Accordingly, in 2002 the court ordered the government to make Nevirapine available where it was clinically indicated to prevent transmission to infants.87
There are a number of important differences between Soobramoney and the TAC case. First of all, Soobramoney was an individual with a specific, fatal condition which the health service chose not to treat, even though it could have done. However, to have chosen to treat Soobramoney would have left another person facing the same plight as him, and so it was declared appropriate for the health authorities to make these decisions as long as they did so on defensible and rational grounds. In the TAC case, the government’s stand is much harder to understand. Although the government appealed to the importance of providing a more comprehensive package of care, which was unaffordable as well as having other difficulties, the court was persuaded by the evidence that drug treatment, alongside testing and counseling, would save the lives of thousands and would have minimal cost implications. Indeed, it was argued, there would eventually be cost savings, compared to the burden on the health system of caring for thousands of HIV-positive infants. It is not at all surprising that some commentators have attempted to explain the government’s position as being linked to Mbeki’s “AIDS denialism” or even the ANC’s hope to be able to provide its own, lucrative, therapy for AIDS, in the form of the drug Virodene,88 although such issues were not discussed in the judgment.
Legally, then, the difference appears to be that in the Soobramoney case the authorities acted reasonably in difficult circumstances, while in the TAC case no such defense was available. A further difference is that TAC is, after all, a campaign, building up a groundswell of support among people who themselves were suffering from adverse government policy. TAC was able to ride on the support of a people’s movement. Human rights cases, backed by wide, active, popular advocacy, together with media backing, can create an unstoppable force. There was no equivalent support for Soobramoney, even though no doubt there was great public sympathy.
The next stage for TAC was to enter the struggle for a national treatment plan, which also required lengthy and repeated struggle and civil disobedience, including calling for international protests to support their campaign. A plan—far from satisfactory—eventually came to be in late 2003, with the ambition to have 53,000 people undergoing ARV treatment within a few months, and a program of provision of treatment centers.89 At the same time, though, the health minister continued to express opposition to ARV treatment, looking once more to nutritional approaches. By 2005, major orders for ARV drugs were at last placed. In 2008, with Mbeki’s resignation (for other reasons) as president and the appointment of a new minister of health, the plan gathered pace.
All along, TAC knew that its campaign for treatment was too narrow. Dealing with HIV/AIDS cannot be passed entirely into the hands of a health care system even if the system is strong enough to cope, which was far from the case in rural South Africa. NGO campaigns often work through elites, academics, professionals, press, and communications. TAC acted this way too, in forming alliances with trade unions and churches, but it had the essential goal of creating a situation in which “poor people become their own advocates”90 and building a political movement for health, with an understanding of both health and governance. TAC borrowed the idea of “treatment literacy” from US AIDS activists. It requires a mass understanding of science, health, and treatment to empower ordinary people to take control of their own health. Over 200 people trained as “treatment literacy practitioners,” and TAC claims to provide information for over 100,000 people per month, leading to improved understanding of how to keep oneself well, but also increasing agitation and demands for ARV treatment. Activists were typically people living with HIV, rather than professionals.91 Hence, and by a tortuous and perilous route, South Africa is coming closer to Uganda’s approach. Generally in Africa now, according to one commentator, cost is no longer the main barrier to treatment. Rather, the stigma of coming forward, together with lack of political will and weak health infrastructure, remain the most serious difficulties.92
It is also worth taking brief note of the situation in Botswana, South Africa’s neighbor, which has a simpler story. HIV/AIDS exploded just as it did in South Africa. Indeed the proportion of people infected with HIV is even higher than in South Africa. At one time it was projected that 85 percent of fifteen-year-olds would eventually die of AIDS.93 Yet it seems that the situation has now been significantly mitigated. Politically Botswana is an important contrast to South Africa. It peacefully gained its independence in 1966, and has been politically stable since. By GDP per capita it is one of the wealthiest countries in Africa. The impact of AIDS, however, came as a major shock, but the country did what it could to respond. By 1999–2000, AZT and Nevirapine were used to reduce mother-to-child transmission, and the effort was scaled up with help from major US universities.
Peak rates of infection in the general population in Botswana were experienced between 2000 and 2004 but since then, through a combination of government action and support from major overseas donors including the drug companies that donated their medicines, the Gates Foundation, the Merck Foundation, and the USA PEPFAR fund, HAART treatment is now generally available and the government has made huge bulk drug purchases. There are also programs to train medical staff, and programs for monitoring, evaluation, and research. Of course many questions still arise about how to implement programs and public health measures, such as whether HIV testing should be compulsory and under what circumstances, but the general picture in Botswana is of a situation over which the government has taken control.94 Civil society action has been much less important than in South Africa, for when the government understood how it needed to act it did so, unlike the South African government, which for a long time appeared to make things worse. Indeed, just as Zackie Achmat has, absurdly, been accused of genocide for encouraging the use of anti-retroviral drugs, other commentators have more plausibly called for such charges to be laid against Thabo Mbeki for his obstructive policies, which have been said to have caused as many as 330,000 excess deaths.95 However, the urgent task is to move forward, not to return to the past.
South Africa and Botswana are among the wealthiest countries in Africa, and have the resources to put treatment programs in place, albeit in both cases with outside assistance. It would be reasonable to doubt whether other African countries could do the same thing. Tiny and landlocked Swaziland, for example, South Africa’s neighbor to the east, remains an absolute monarchy, and has nothing of the mineral wealth of many other Southern African countries. It is reported to have the world’s highest rate of HIV infection, and consequently the lowest life expectancy, and, with a health system stretched desperately thin, could be expected to be virtually unable to make progress. Yet even here ways have been found to finance mass treatment campaigns, dependent, of course, on unreliable donor support, with more than half of those needing treatment now in receipt of it.96
Before moving on from Africa, it is worth considering issues of HIV prevention. Treating HIV infection is, of course, important, but prevention must be the ultimate goal. How is it to be achieved? The avoidance of all risky behavior would be one way, hence the emphasis on abstinence programs, led by the church and a major plank in US-funded programs until policies changed in 2008. Abstinence policies have often been criticized as hopelessly unrealistic if pursued as a sole strategy. Certainly they would need supplementation. Is education the answer? We have seen the importance of education as part of a “treatment literacy” program, and education has been used as a major element in public health strategies, yet skepticism has been expressed. For example, it has been suggested that doctors, nurses, and even AIDS counselors get infected at the same rate as the rest of the population.97
Condom use is clearly a very important strategy, and has further benefits in contraception and prevention of other sexually transmitted diseases. Yet it also has its limits. A wife who suspects her husband of being HIV-positive may find it very difficult to ask him to use a condom. To allow women to take more control of their vulnerability, there has been great interest in producing bactericide creams or gels. One gel, based on the drug Tenofovir, showed modest benefits in a small study in South Africa, so holds some promise, but is very far from reliable. A huge improvement in effectiveness would be needed before it could function as a major preventive strategy. But although the use of the gel is more discreet than condom use, a woman worried about being infected by her husband and using it in secret may be making herself vulnerable in other ways. For one thing, if her neighbors see that she is using it—few people in the world live with the privacy of those in American suburbs—the stigma and gossip may be destructive. And if her husband finds she has these suspicions she may well be at risk for domestic violence. Similar points could be made about a vaccine, unless it is routinely universally administered along with other childhood vaccinations. In other words, many women in the developing world are vulnerable to HIV infection precisely because they lack human rights. They are powerless to resist the sexual pressure of their husbands—a pressure enshrined even in legal norms in which husband is legal owner of wife, such as in Swaziland.98 Accordingly, any attempt for a woman to take control of her own sexuality is fraught with danger. Here we can usefully apply one of the main ideas of General Comment 14. Medical care must be “culturally appropriate.” Not only will culturally inappropriate approaches be ineffective, they may be counterproductive, even dangerous, at least until the human rights of women are strengthened in other ways.99
THE HIDDEN COST OF TREATING HIV/AIDS
Success in treating HIV/AIDS seems a great triumph. Despite the enormous toll the epidemic has taken, there is at least a break in the clouds. But there is another side to the story which is beginning to get increasing attention. A series of studies have pointed out that as more and more money goes to fight AIDS, as well as other diseases such as malaria and tuberculosis, in so-called “vertical programs” which focus on single conditions, there are hidden costs. For example, the number of attended births falls, as well as the number of children receiving routine inoculations. Why? The main reason is that vertical programs require staff to run them, and most of the staff need to have a previous medical training. There is always a well-founded preference for using local staff rather than flying in outsiders. But it is far from the case that in the countries we are talking about there is a surplus of trained, underutilized medical professionals looking for opportunities. Rather, every doctor or nurse recruited for a vertical program, whether by an NGO, an overseas university, or the national government, is taken away from what they were doing before.
In one of her evocative 28 Stories of AIDS in Africa, Stephanie Nolen tells us of Tina Amisi, in the Congo:
Back then [2003], Tina Amisi was working in obstetrics and gynecology at Bukavu’s public hospital—looted so many times it lacked doorknobs and mattresses and was chronically short of even the most basic medications. She leapt at the chance to work for MSF [Médecins Sans Frontières]. The salary was a draw, of course, but more than that, the clinic had all the necessary drugs and equipment. This was a chance to do real medicine, the kind she dreamed about in medical school, not the piecemeal, patchwork job she had been doing in Congo’s public system. And Tina herself was a prize hire for MSF.100
We are used to talking and worrying about the health brain drain (which we will turn to in the next chapter), by which health workers are recruited from developing countries to wealthy ones, but the silent internal brain drain may be equally damaging. For this reason there is now a turn within the human right to health movement toward the idea of “health system strengthening” or “horizontal programs” rather than vertical programs. Inevitably this will mean fewer people will be treated, or treated as quickly, for HIV/AIDS. Understanding these issues may make one despair of acting for the better. But if the problems were easy, we would have solved them long ago.
As we saw in earlier chapters, it is now part of the usual analysis of human rights to see them as generating three types of duties: duties to respect, to protect, and to fulfill. By way of concluding this chapter it will be helpful to apply this analysis to the story of HIV/AIDS and human rights.
The duty to respect requires the government not to act in ways that interfere directly with the enjoyment of the right. In other contexts, for example, a government fails to respect the rights of a citizen if it bans their religion. Failure to respect the right to health is rarely so clear-cut, except in cases of tyrannical governments victimizing unpopular minorities. It is unusual for a democratically elected government deliberately to take steps that will impair the health of its citizens (as distinct from failing to take steps to improve their health), although arguably the banning of abortion or, in the case of HIV/AIDS, condoms could fall into this category. The South African government came close to failing to respect the right to health of its citizens in its initial promotion of the untested and highly toxic drug Virodene, although its delay in offering ARV drugs is a failure to fulfill rather than to respect.
In many other cases, the failure to respect rights in relation to HIV/AIDS has been a matter of failing to respect other human rights, such as freedom of movement and reproductive freedom. We have looked at various attempts to restrict the activities of people diagnosed with, or suspected of, infection. These include such things as refusal to admit people living with HIV into the country and criminalizing their sexual behavior. This goes as far as forced sterilization of women living with HIV, of which, in Namibia for example, there are recent documented cases.101
There is, though, a double complication. First, restricting the activities of people with HIV was not discrimination pure and simple; it was attempted in order to protect the rights to health of the great majority of the population who were not infected. We cannot take it for granted that doing this is always wrong. Had HIV been transmissible in the way in which, say, the flu virus is, then much greater restrictions on activity would surely have been justified. As it turned out, most of the restrictions were panic measures with no scientific basis, but it might have been otherwise. Second, as Jonathan Mann argued from early on, restrictive measures are likely to be counterproductive. If people diagnosed as HIV-positive lose their houses or jobs, who is going to come forward for testing? This drives the disease underground, where it is an even greater public health problem. In the end there is no justification for discriminatory measures against people living with HIV, but this was a lesson many governments found very hard to learn. The first threat, then, to people with HIV is unjustified discrimination by their own governments.
The second duty falling on governments is the duty to protect. Part of this is a matter of protecting citizens from the violation of their right to health by others. Here, for example, governments may have a duty to enforce regulations on insurance companies to prevent them from denying insurance renewal to those with HIV/AIDS, as we saw in the case of the USA. It also includes protecting people living with HIV from the often vicious prejudice of those around them, especially if this would be detrimental to health. This can include neighbors, as we saw in the case of teenager Ryan White, or extended family members as has often been the case in Africa.102 Here it can be very hard for governments to act. It may be possible for governments to regulate commercial organizations such as insurance companies, and to strengthen employment and housing protection as the US has done. But changing attitudes and policing private behavior is a much more difficult matter. Still, progress is possible, through education, role models, and examples (such as images of Princess Diana shaking hands with an AIDS patient in 1987). The complexity of the task means it is a long process, but this is not a reason for giving up.
A second aspect of the right to protect is the duty to prevent onward infection. As we have just seen, governments have often interpreted this as providing justification for restrictions on the behavior of people in risk groups. Generally, it will mean putting in place public health measures—education, easy accessibility of condoms—that will help reduce infection. Once more matters are not entirely straightforward, in that apparently sensible policies can have negative effects. Abstinence campaigns may lead to secretive, unprotected sex. Male circumcision which reduces the risk of female-to-male transmission can encourage risky behavior. The difficulty with trying to influence people’s behavior is that in many cases people are as weak as their weakest moment, when temptation overrides education.103
The duty to fulfill includes the supply of treatment that is safe and effective. Wealthy countries have, for the most part, worked out how to do this. The story for the developing world is highly instructive in understanding how human rights duties develop. In the first instance, the duty to provide treatment falls on the national government. But many governments cannot afford to pay for treatment. One possible response is to appeal to the idea of “progressive realization,” in which lack of resources provides a cast-iron excuse. Although these arguments were made, in practice most countries saw things differently. Saving the lives of their citizens was viewed more as a human rights core obligation, and resource constraint was no excuse for failure. Accordingly, two lines of action were tried in combination. First, various attempts were made to bring down the price of expensive medications. Second, appeal was made to the international community to help.
We see here the pattern of action described earlier. Recall that one area of skepticism about human rights is the question of who has the corresponding duties. Our answer was that in the first instance it always falls on the national government. Only if the national government fails to do what it should does it spread further. If the government is unwilling to meet its duty—as in the case of South Africa—then the international community has a duty to apply pressure to bring it to act as it should. If the government is willing but unable, as in other African countries, then the international community has a duty to assist. At last, we see that it is doing so, as in the case of Botswana, where we noted that drug companies agreed to lower their prices and external funders put up some of the money toward the treatment program.
The duty to fulfill the human right to health also gives governments a duty to put structures in place to make it possible to advance health on something like a routine basis. Laws that provide rights to treatment, and the provision and staffing of clinics that make high quality treatments available, are called for. Developed nations managed to do this, albeit at different speeds, but for many developing nations the challenge is still ahead. Uganda took some early, far from complete, steps in this direction, and Botswana has probably gone the furthest in Africa. Complete fulfillment of the right to health turns an urgent political and social issue into a routine government and medical matter.
HIV/AIDS and the human right to health, we noted at the start of this chapter, emerged and developed together. Before the AIDS epidemic the human right to health was barely understood, either as a philosophical concept or as a focus for activism. The profound health emergency of AIDS, and the fact that it hit, at first, a stigmatized but articulate and radicalized segment of the population, brought forth new organizations with a need to develop tools to lobby and pressure governments to act. The idea of human rights was ready to hand, but was used first only in claims for protection against discrimination toward people living with HIV. But this, as we saw, had public health benefits. Removing stigma also reduces the barriers against people coming forward for testing, and those who knew that they were HIV-positive were more likely to change their behavior. Once treatments became available, this first wave of human rights activism was supplemented by a vital second wave, in the form of advocacy for the human right to access to treatment, and for people living with HIV to have much more control over their own health and treatment. The path developed by early HIV/AIDS activists became a model for human right to health campaigns throughout the globe in relation to many different health threats, as we will explore in the next chapter.
If in the developed world, rights against discrimination were claimed and broadly respected even before the right to treatment had any focus, in the developing world there is a case that the right to treatment is actually more advanced than rights against discrimination. Anti-retroviral drugs are increasingly available, yet a very high proportion of Africans living with HIV have not come forward for testing; most of the cited figures for prevalence are estimates. Until discrimination against people known to be living with HIV is removed, infection rates will continue to be high. Furthermore, other human rights abuses, such as sexual violence against women, intensify the problem. Finding the money to pay for treatment can be less difficult than getting people to admit that they need treatment in the first place, and it may be harder still to keep dependent and powerless people safe from infection. Ironically, then, what was in the developed world the final human rights victory—access to treatment—is closer to achievement in Africa than the struggle for civil and political rights for people living with HIV and those highly vulnerable to infection.