Human Rights and the AIDS Crisis: The Debate over Resources
Kenneth Roth delivered this address on July 11, 2000, in a plenary session to the delegates of the XIII International AIDS Conference, Durban, South Africa.
Can a human-rights perspective help us confront the AIDS crisis? More specifically, can human rights help us meet the urgent challenge of securing the vast resources needed for treatment and prevention? I believe they can. Human rights are a powerful tool for meeting basic human needs. But their contribution to the fight against AIDS is not as simple or straightforward as many often assume.
For well over a decade, the human-rights perspective has contributed to the evolving public-health understanding of how to address AIDS. A particular debt of gratitude is owed the late Jonathan Mann who, more than anyone, highlighted the synergistic relationship between health and human rights.
Mann devoted much time and energy to demonstrating that respect for the rights of people who are infected or at risk of infection by HIV is essential for preventing and treating the disease. If people with HIV risk discrimination, coercion, or breach of confidentiality, then people everywhere are less likely to be tested, to seek treatment, or to learn how to avoid infecting themselves or others. Mann also showed how combating discrimination and social marginalization can help fight the vulnerability that handicaps many people, particularly women and girls, in their efforts to avoid infection.
Today, however, a new public-health challenge has come to the fore in the fight against AIDS. The issue is less what should be done to prevent or treat HIV infection than where to find the enormous resources needed to do so. Who should pay the cost of combating AIDS? In particular, does the industrialized world have an obligation to help the people of the developing world, and if so, what precisely is owed? Should obligations arising out of the AIDS pandemic differ from obligations related to other public-health crises or from the general need for basic health care?
None of these life-and-death questions permits easy answers. But international human-rights standards can help orient us in a useful direction. The relevant standards are not the ones of civil and political rights -- the issues of discrimination and individual freedom that so far have played the largest role in fashioning a response to AIDS. Rather, the pertinent standards are found in the less familiar terrain of economic and social rights.
The leading human rights treaty in this area is the International Covenant on Economic, Social and Cultural Rights (the "Covenant"). Other human rights treaties are also relevant, but this discussion will be limited to the Covenant. Adopted by the U.N. General Assembly in 1966, the Covenant has been ratified by 142 governments. Unfortunately, our host country, South Africa, as well as my own country, the United States, have signed the Covenant but not yet ratified it, evidently for fear of being bound by it.
The Covenant requires governments to respect the right to the basic necessities of human life, which include the right to such things as work, education, food, clothing, and housing. The most important right for this discussion is Article 12, which proclaims the right of everyone to enjoy "the highest attainable standard of physical and mental health." Among other steps, this right requires governments to prevent, treat, and control diseases, and to assure medical care and attention to everyone in the event of illness.
If this right were fully respected, we would be well on our way to solving the AIDS crisis. Treatment would be available to everyone, and effective prevention strategies could be widely implemented. Yet, obviously, we are far from that moment. Indeed, when it comes to AIDS, it seems almost a cruel joke even to assert the right to health because governments seem to accord it so little weight.
Why is this? Why do rights-based arguments seem so ineffective in convincing governments to provide the resources needed to fight AIDS? The difficulty is best illustrated by contrast with a more classic rights-based appeal -- say, a demand to stop torture, widely viewed as shameful. By exposing a government's use of torture, the government can often be shamed into curtailing this inhumane practice. So why can't similar public shaming be used to force governments to devote the resources needed to fight AIDS? It can, but the process is not nearly as straightforward.
The difficulty with invoking economic and social rights is that the duty to respect them is far more qualified than the duty to respect civil and political rights. Governments are expected to uphold civil and political rights immediately. Moreover, responsibility for doing so is assigned almost exclusively to the national government of the country in question; there is no opportunity to pass the burden on to others. By contrast, the Covenant allows its rights to be fulfilled gradually, over time. Each government is asked only to "take steps" to secure these rights, and to do so only "to the maximum of its available resources, with a view to achieving progressively [their] full realization." Moreover, the treaty assigns responsibility for compliance more broadly -- not only to the immediate national government, but also to the international community as a whole, through the duty to provide "international assistance."
This gradualism and shared responsibility make it much more difficult to shame a particular national government for its poor state of health care -- or, for that matter, its inadequate education or housing. Governments can deflect criticism by blaming others. There is no easy way to move beyond this finger-pointing. Governments also can simply assert that their current contributions, stingy as they might be, are all they owe to meet the AIDS challenge. Again, there are no clear benchmarks by which to rebut these claims.
Given these qualified, divided responsibilities, how might economic and social rights be enforced? Or, more specifically, how might we uphold a right to adequate AIDS health care? How do we move beyond the finger-pointing and evasions to hold particular governments responsible?
The answer begins with the observation that shared responsibility for upholding the right to health does not mean no responsibility. The mere fact that many governments have a duty to assist in fighting AIDS does not mean that any one of them can shirk its responsibility for acting.
The Covenant's requirement that governments "take steps" to secure economic and social rights should mean, at minimum, that they take the following three steps. First, each government should be required to adopt a plan that is reasonably designed to achieve the right in question -- in this case, the right to adequate AIDS health care. Second, governments should be required to establish a timetable for implementing the plan, so that implementation is not perpetually put off for the future. Third, governments should demonstrate progress toward fulfilling the plan -- actual movement toward the goal of providing an adequate response to the AIDS epidemic.
Straightforward as these three steps are, many governments will strenuously resist taking them. Why? Because governments know that once they adopt a plan and timetable to fulfill economic and social rights, they set benchmarks by which to measure their compliance. Governments instinctively resist such accountability because it limits their ability to pursue less essential, though perhaps more self-serving, goals.
To establish this accountability is precisely why it is so important for us to insist that every government, rich or poor, devise its own, individual plan and timetable for meeting the AIDS crisis. If a government resists, we should make that failure in itself a focal point for public shaming, since a government can hardly be said to be serious about confronting AIDS if it won't even adopt an official plan for doing so.
Once a government does adopt a plan and timetable, advocacy of the right to health becomes much easier. If the plan and timetable are inadequate, or if the government devotes insufficient resources to implementation, it becomes easier to ask why the government is doing so little to address AIDS, or why combating the disease is accorded such a low priority. If a government pleads poverty, other expenditures that are said to deserve higher priority may be scrutinized. Doing so often brings up such difficult but essential questions as whether a military buildup or a prestigious government project really is more important than greater investment in public health. Even when a government invests in health or other development needs, its plan and timetable would allow an evaluation of whether the investment has been made with the interests of the most needy foremost in mind or whether other, less fundamental interests are driving priorities.
Still, important questions remain. When speaking to governments, particularly those of the industrialized world, how do we make sure that every government contributes its share? How do we avoid buck-passing, stingy responses, or the "free-rider syndrome," in which one country shirks its responsibilities on the assumption, usually false, that another country will foot the bill? The key is to insist on a plan and timetable for meeting the AIDS crisis that are adopted not only by individual governments, acting one by one, but also by all the governments of the world acting together. For each country in need, we must have a plan and timetable adopted globally. For each needy country, we must demand a "World Conference of Governments" to confront that country's AIDS crisis.
We must insist that each such World Conference of Governments not be yet another talking shop. We need a series of World Conferences where all industrialized governments convene to consider a country in need, the doors are locked, and no one leaves the room until the finger-pointing and evasions stop. No one goes home until the resources are finally committed that are adequate to the emergency at hand. If industrialized governments still fail to do what is right, the setting of a World Conference would make it far easier to marshal the public condemnation needed to spur action. It ensures that any governmental failure occurs under the harshest possible spotlight. In this way, we can give the imprecise requirements of the Covenant on economic and social rights sufficient precision and bite that enforcement through public shaming becomes feasible.
Our needs are enormous but not beyond fulfillment. Far more is spent routinely on far less urgent problems. If, as UNAIDS now reports, 50% of people 15 years of age and older will die of AIDS-related illnesses in some southern African countries, we cannot afford to allow halfhearted responses any more. If the industrialized governments plead poverty, we should remind them of the wide and growing income gap between the richest and poorest countries. According to the U.N. Development Program, the income gap between the fifth of the world's population living in the richest countries and the fifth in the poorest was 74 to 1 in 1997, well more than double the gap of 30 to 1 in 1960. There is no excuse, in light of this worsening trend, for the industrialized world to say that funds are not available.
The duty of the industrialized world should be understood not only in terms of international assistance to needy nations, essential as that is. For better or worse, the industrialized world is also the principal source of funds to develop AIDS medicines and, eventually, an AIDS vaccine. A complete global AIDS plan must include funds for investment in research and development. It should also include a reasonable delivery program to provide global access to essential drugs or vaccines that are developed. In addition, it should ensure that research for drugs and vaccines focuses on the virus as it appears in all parts of the world, not just the West.
When essential drugs or vaccines are developed, it is not reasonable to insist on selective compliance with the international legal protocol for protecting patents -- the so-called TRIPS [Trade-Related Aspects of Intellectual Property Rights] agreement of the WTO [World Trade Organization]. It is wrong to reap the benefits of patent protection under TRIPS while fighting tooth and nail to discourage developing countries from invoking parallel provisions in that same protocol for providing cheaper access to drugs in the case of a health emergency like the AIDS crisis. Governments and corporations should not seek to enjoy the rights of an international trade regime without also accepting the caveats inherent in the definition of those rights that permit compulsory licensing and parallel importing in the event of a health emergency. In other words, an industrialized government cannot be said to be "taking steps" to "progressively realize" the right to health when it defends excessive corporate profits over the right of access to essential, lifesaving medicine in cheap or generic form.
Of course, to make this point is not to reject the corporate argument that profits are needed to justify the risks and expenses of research and development. Failure to provide reasonable profits would be counterproductive if it led to abandonment of the quest for a vaccine or better drugs. But a government that is conscious of its duty to uphold the right to health would defend only the level of corporate profits needed to provide basic incentives, not corporate windfalls. To the extent that the necessary corporate incentives cannot be paid by patients who can afford the full price of medication, the cost should be paid in government subsidies, not in the lives of impoverished AIDS victims.
The duty to establish a plan and timetable to address the AIDS epidemic applies not only to relatively wealthy states. Even governments of developing countries have a duty to devise a plan and timetable for applying whatever resources they have to meeting such basic needs as adequate health care. In most if not all cases, these needs will exceed resources. But the adoption of a plan and timetable for spending whatever funds are available will provide the transparency needed for the public to scrutinize government expenditures and priorities and, where necessary, to demand adjustments and reallocations.
Such transparency also permits the public to participate in the difficult process of setting priorities among competing fundamental needs. To begin with, decisions must be made for allocating funds among those infected by, affected by, and vulnerable to HIV/AIDS. Then, priorities must be set between addressing the AIDS crisis and addressing other maladies such as malaria, tuberculosis and diarrheal diseases, or providing basic health care. Finally, funds must be allocated between these broad health needs and other basic needs in such areas as education, housing, or nutrition, many of which also affect health. Human rights standards provide no simple roadmap for setting these difficult priorities. But if human rights are understood to require at the very least a transparent public plan and timetable for addressing these basic needs, they will facilitate the public debate and participation that is most likely to secure government policies that are sensitive to these needs.
The requirement of a governmental plan and timetable for meeting the AIDS crisis also has a key non-economic dimension. Sometimes, the most important thing a government can do to combat AIDS is to provide public leadership. We see examples of such leadership in Uganda, Thailand, and Senegal. Funding is certainly helpful for spreading the word through public education, but funding alone will not compensate for the lack of a clear message. Governments have a duty, regardless of their economic circumstances, to convey the best available scientific knowledge about how to treat AIDS and avoid infection.
That means governments must not mislead the public with wild and scientifically refuted messages about the origin of AIDS. That means governments must not scare the public with exaggerated stories about the dangers of the best available drugs for stemming the spread of HIV from mother to child. That means governments must not discourage testing for fear of prompting demands for treatment. That means governments must abandon regional, national, or personal pride if it stands in the way of saving lives. A government's message about preventing HIV infection is not only a matter of resources; it is also a matter of political choice, courage and will. We should be unsparing in our criticism of governments, like our host government, that shirk that duty, because they violate any pretense of progressively realizing the right to health in the prevention and treatment of AIDS.
We also must insist that governments attack cultural norms and practices that fuel the spread of AIDS. We all know of the macho culture that celebrates the number of women that a man can sexually conquer, the horrifying myth that AIDS can be cured by sleeping with a virgin or young girl, or the deadly expectation that a wife have unprotected sex with her husband even if he is HIV positive. These dangerous, destructive practices are too costly to tolerate. We must not allow discomfort with the topic of sexual mores to stand in the way of loud and frank denunciations by governments.
Similarly, we must insist on government leadership in denouncing and ending discrimination that impedes the fight against AIDS. For example, how can we reduce mother-to-child transmission if HIV-positive women are afraid to not breast-feed their babies for fear of stigmatization? How can we reduce transmission among gay men, lesbians, bisexual, and transgendered people if the discrimination they face precludes education regarding same-sex sexual practices? Again, the issue here is not resources, but political will.
Of course, it is not solely ignorance or cowardice that leads governments to tolerate or entertain such dangerous and discriminatory practices. It is also despair -- despair at knowing that the funds needed to sustain a vigorous prevention program, let alone to embark on widespread treatment, are way beyond their means. That is another reason why it is so important for the governments of the industrialized world to develop a comprehensive global plan for combating AIDS. We need a global plan, not because its absence excuses a lack of leadership by governments of the developing world -- it does not -- but because the solidarity and economic commitment of the industrialized world will help engender the hope needed to promote effective leadership.
In conclusion, human rights are not a panacea to the AIDS crisis. They will not magically produce the resources we need. They will not identify which resources should be devoted to fighting AIDS as opposed to addressing other important societal needs and interests. But they do require governments to address the crisis with appropriate urgency and transparency. The duty to provide international assistance for securing economic and social rights requires governments of the industrialized world to devise and publicly adopt country-specific plans and timetables for meeting the extraordinary economic challenges of combating AIDS. Governments of the developing world must proceed with similar transparency and resolve within their own countries. Such commitments permit the public scrutiny of economic priorities that is the best way we have of enforcing these human rights. If these steps are taken, we will have gone a long way toward containing this deadly disease.
A Comprehensive Remedy for HIV/AIDS Requires Lower Drug Prices, Infrastructure Development, Training, Access, and Political Leadership
This article was provided by San Francisco AIDS Foundation. It is a part of the publication Bulletin of Experimental Treatments for AIDS. Visit San Francisco AIDS Foundation's Web site to find out more about their activities, publications and services.