WHERE NEXT?
EMERGING CAMPAIGNS
In the last chapter we looked at a number of issues where critics of international institutions and practices raised acute concerns about practices that undermined countries’ abilities to meet their human rights duties, or did little or nothing to help them meet their core obligations. The examples discussed were all cases where a deficit was noted and action, eventually, was taken, albeit often with slower results than one might have hoped. There remain, however, major health rights challenges of which the world is only just beginning to take notice.
One is mental health, which the WHO has recently focused on as a human rights issue, pointing out that it is very often the case that people suffering from mental health problems have other human rights violated, either through government action, such as forced incarceration, or through social stigma and the violence of others, including the “therapeutic violence” of forced exorcism, for example. And many citizens face mental health challenges as a result of other human rights abuses, most notably torture, rape, and forced migration. As one author noted in 1995, “After three decades of dictatorships, Africa has become a gigantic asylum for victims of torture and repression.”1 Poor African countries may seem to lack the resources to do much for those with mental health difficulties. Still, notice has been taken. The Lancet produced an important series of papers on global mental health in 2007 and the WHO has now taken it on as a major concern, issuing guidance in various forms and declaring October 11, 2011, World Mental Health Day. The WHO argues that with the right policies both pharmaceutical and community-based treatment is possible on a global scale. In fact, a concern for mental health was present from the start at the WHO, in its definition of health as a “complete state of physical, mental and social well-being.” Indeed, the first director-general of the WHO, Canadian George Brock Chisholm, was a psychiatrist. But mental health faded from view as a global health issue until recently. Addressing mental health in any significant fashion has yet to be achieved.
There are, of course, many other major global health issues coming to prominence. One is the penetration of Western “lifestyle” conditions in low- and middle-income countries, ranging from diabetes to road traffic accidents, now one of the major causes of death in middle-income countries. Another major source of death through accidents is the large number of drownings, especially for children and teenage boys, by either pure accident, fishing, floods, or tsunamis. If the pattern noticed here is followed for these conditions, we will see NGOs gaining publicity for a cause, followed by a report by the WHO (which is the stage we are at for the conditions mentioned here), followed by action by a donor, government or multilateral agency, which will then be criticized (fairly or unfairly) for its ineffectiveness, arrogance, and cultural insensitivity but then used as a model for a large-scale intervention program. The question is, how can we make progress while avoiding the mistakes of the last two decades?
Without supposing that it is possible to know the answers, it is worth pointing to several areas of concern that have been highlighted in the academic literature, showing how improvements may strengthen governments’ ability to meet their human right to health obligations in the future.
The first is, no doubt, the dullest: data. Report after report points out that it is very hard to get a grip on the facts because basic data is missing. Even birth, marriage, and death data is not regularly collected everywhere. The WHO Commission on the Social Determinants of Health, the Lancet report on the human right to health, and the WHO study on maternal mortality are just some of the many reports that complain that vital data is absent, and that this has impeded their work. And so, it is said, more resources need to be devoted to data collection. Those outside academia may be suspicious of this claim, noting that those who make their living through research are bound to argue that more research is needed. If there is a choice between spending money to save lives and spending money to collect data, it is not difficult to see where we should spend it. But the natural response is that this is a false dilemma. We need to spend money to find out where money needs to be spent. In particular, from a human rights point of view, we need disaggregated data. For example, life expectancy in Australia is among the highest in the world, which could lead one to think that there is no health crisis. But life expectancy for aboriginal Australians is about twenty years lower than for those of European descent. And then we need to know why this is. Is it that it is rare for aboriginal Australians to reach old age, or is that that there is an excess of infant, childhood, or young adult deaths that brings down the average? Only when data at this level of detail is collected will facts about discrimination, exclusion, and disadvantage jump out. Human rights activism starts with monitoring: the collection of data. Independent monitoring and evaluation of interventions is also vital. After all, anyone running a program will naturally engage in wishful thinking and report to all what a great success it has been, even if it isn’t. Without money for quality evaluation, we are working in the dark.
Data collection is one problem; another is “global health governance.” A small number of very large organizations, such as the WHO, PEPFAR, the Gates Foundation, GAVI, the Global Fund, and some government-sponsored agencies, as well as perhaps hundreds of thousands of small and medium-sized organizations, all compete to make an impact on human health. How can large organizations—especially large charitable organizations—be held to account?
Consider some recent criticisms of the Gates Foundation. In one way it seems inappropriate, even a matter of poor taste or judgment, to make any criticisms at all. After all, Bill and Melinda Gates could have chosen any way to spend their money, as could Warren Buffett, another major funder of the foundation. Instead, they have made a huge investment in global health. What can be wrong with that? The general problem, so it is claimed, is that the trust’s financial power gives them huge influence over the research now conducted and the health problems that receive attention, and this can be problematic. One commentator claims that the Gates Foundation has an excessive focus on technological solutions, such as discovering vaccines, which, we might add, can lead to an “all or nothing” approach. Suppose billions are spent looking for a vaccine for malaria but it turns out unsuccessful. It could be that there is literally nothing to show for all this money, and indeed the scientists who spent their time on this research have been diverted from other tasks that might have been more fruitful.
It is also said that the Gates Foundation’s support of vertical programs undermines health systems by encouraging the internal brain drain, and that its enthusiasm for its programs leads it to sometimes bypass ministries of health, thereby undermining the local health system. In sum:
Although Bill Gates’ annual letter indicates a genuine desire of the foundation to help the poor and to do good, further independent research and assessment is needed to ensure that this desire is translated into the right and most cost-effective set of approaches, strategies, and investments for improving the health of the poor.2
To give more detailed examples, two of the major Gates priorities have recently been questioned. Elizabeth Pisani has asked whether the Gates initiative to eradicate polio in the next two years is the right priority. A huge effort is being put into dealing with a disease that now affects only a relatively small number of people each year, while other much more significant diseases do not attract funding in anything like a similar proportion. Taking the final step in eradication is very difficult and expensive, and, it is argued, much more good could be done by spending the money on sanitation and clean water.3 Yet if the money is tied to polio eradication programs, that is how it will have to be spent.
Criticisms have also been voiced, this time by the editor of The Lancet, Richard Horton, in a book review in the New York Review of Books, concerning the Gates Foundation’s proposal to eliminate malaria. On the one hand Horton applauds the grand ambition of this project, noting the huge success that can be achieved by impossible dreamers, who as Bill Shore, author of the book under review, notes, have “irrational self-confidence.” Malaria, after all, was endemic in the United States until as recently as 1951. Horton makes a distinction between eradication—the removal of the malaria parasite from the planet—and elimination: taking measures within a country or region that ensure there are no infections. Elimination in certain parts of the world, those with better health systems, is possible, argues Horton, but the goal of eradication is, he thinks, naive and not feasible, at least within the next fifty years or so.4 If the failure of eradication is predictable then the money spent on it is largely wasted, and would save many more lives through control and elimination. If the project was run by the WHO there are forms of governance that would steer the funding, eventually, to what can be supported by the best evidence. But the money is under the control of Gates, and he, roughly speaking, can do what he likes. He is able to recruit many of the world’s premier scientists to try to achieve his ambition. In the medium term this could do far more harm than good, by diverting them from more modest but more achievable goals.
The issues of governance we have illustrated so far concern “top-down” organization and direction. Many activists in global health seek “bottom-up” approaches to health, where those who will benefit from treatment or interventions are involved not only in campaigning for change but also in control of their conditions, and in the future direction of research. People should not be “patients,” but be empowered to take control of their own fates. We saw this demand illustrated in the case of HIV, through the initial enunciation of the Denver Principles and in the application of American-style activism to the situation in South Africa by the Treatment Action Campaign. The slogan of the disability movement—“nothing about us without us”—sums up this approach.
But how extensive is the grassroots movement for health? And what are its prospects? In relation to the human right to health this is a particular concern, for if human rights activism cannot marshal and interact with a broad base it will be the preserve of the wealthy and well-connected. Paul Farmer quotes exactly this line of thought from Chidi Anselm Odinkalu’s “Why More Africans Don’t Use Human Rights Language”:
Most human rights organizations are modelled after Northern watchdog organizations, located in an urban area, run by a core management, without a membership base (unlike Amnesty International) and dependent solely on overseas funding. The most successful of these organizations only manage to achieve the equivalent status of a public policy think-tank, a research institute or a specialized publishing house. With media-driven visibility and a lifestyle to match, the leaders of these initiatives enjoy privilege and comfort, and progressively grow distant from a life of struggle.
In the absence of a membership base there is no constituency-driven obligation or framework for popularizing the language or objectives of the group beyond the community of inward-looking careerists who run it. Instead of being the currency of a social justice or conscience-driven movement, “human rights” has increasingly become the specialized language of a select cadre with its own rites of passage and methods of certification. Far from being a badge of honor, human rights activism is, in some of the places I have observed it, increasingly a sign of privilege.5
The accuracy of this observation has to be acknowledged. Just as there was a time when everyone who was anyone in New York had to have their own AIDS charity, now being part of a human rights campaign may have the same social cachet. Surely few people think this is a desirable state of affairs, but what can be done about it? The broad-based People’s Health Movement aims to do better. It claims to have “roots deep in the grassroots people’s movement and owes its genesis to many health networks and activists who have been concerned by the growing inequities in health over the last 25 years.”6 In practice, of course, it will be very hard to build a popular movement for health that captures people who are not academics, health workers, NGO activists, or those campaigning on a particular health issue that affects them or their family or friends. Who cares about health unless you earn your living that way or are ill? But the aspirations are right, and the People’s Health Movement reaches across the globe, setting out its goals in a People’s Health Charter and being a major sponsor of the Global Health Watch Reports, billed as an “alternative world health report,” which were published in 2006 and 2009, with a third in preparation. Pressure is building, even if progress can be painfully slow. And everyone can find a role.
We began, in the introduction, by setting out a dilemma. On the one hand the state of global health provides an apparently compelling case for a universal human right to health. On the other hand, especially considering the resource implications, the idea of such a right seems utterly unrealistic. Many theorists and practitioners have, for this reason, argued against approaching global health through a rights framework and instead propose that we look for cost-effective approaches to health given the budgets at our disposal. Others insist that we must recognize the human right to health and find ways of making it realistic. Often this comes down to a matter of making the unaffordable affordable, and that can often be achieved by creating a secure alliance between drug companies, donors, and international organizations. Paul Farmer is one of the people who has taken the lead on this approach, refusing to compromise and even using the idea of the human right to health as leverage in persuading powerful actors to find ways of doing the right thing. Progress may have been slow, but as we have seen in previous chapters there is a model for action. Of course, there are many gaps. We don’t know how to cure everything, and there are stubborn problems, such as maternal mortality, where the Farmer solution of providing a cheap model will not be enough. Rural women will continue to die in childbirth if the transport infrastructure is too poor to allow them to get to the emergency clinic in time. No single actor has it in their power to change this. Still, this is no reason to give up the struggle, or to give up the human right of every mother to safe conditions of childbirth, as part of the human right to the highest attainable standard of health.
The human right to health made its first appearance in international law in the Universal Declaration of Human Rights in 1948, in the guise of the right to medical care. In 1954 it was extended to the right “to the enjoyment of the highest attainable standard of physical and mental health” by means of the Covenant on Economic, Social, and Cultural Rights. However it did not become binding until the ratification of the covenant in 1976. Two years later, the declaration of Alma-Ata, often regarded as the most important moment in the development of the human right to health, reaffirmed and extended the right to health, placing it in the context of its social and economic determinants.
At every stage the human right to health has had to battle against skepticism, whether general skepticism about whether there are any human rights, or a more specific skepticism about whether health itself can be a human right. In abstract terms it can be easy to lose one’s grip on what the right to health could be. It is somehow more than the right to medical care, but less than the right to be healthy. But when we turn to concrete cases, it doesn’t seem quite so difficult to understand.
Indeed, as has been argued here, the idea of the human right to health began to find real use in relation to HIV/AIDS in late 1980s. By the mid-1990s it was receiving increasing attention, and, it can be argued, reached international maturity with the issuance of General Comment 14 in 2000, the appointment of a Special Rapporteur in 2002, and a series of developments in 2003 including Nelson Mandela’s assertion that AIDS had become a human rights issue. It was made respectable, perhaps, to the medical community by The Lancet’s report on the right to health in 194 countries in 2008. It seems that the human right to health is here, and is likely to be here to stay. While it still has its critics, this can only be a good thing, both to guard against complacency and to allow theorists, activists, health professionals and governments to continue to influence the development of what is still a living, breathing, hugely important work in progress.