HIV/AIDS and Human Rights revisitedBringing HIV/AIDS policies and programs into line with international human rights lawAs the number of people living with HIV and with AIDS continues to grow in nations with different economies, social structures, and legal systems, HIV/AIDS-related human rights issues are not only becoming more apparent, but also increasingly diverse. Policymakers, program managers, and service providers must become more comfortable using human rights norms and standards to guide and limit government action in all matters affecting the response to HIV/AIDS; and those involved in HIV/AIDS advocacy must become more familiar with the practicalities of using international human rights law when they strive to hold governments accountable.
Von Sofia Gruskin, Daniel Tarantola *
HIV continues to spread throughout the world, shadowed by increasing challenges to human rights both within countries and globally. The virus continues to be marked by discrimination against population groups: those who live on the fringes of society or who are assumed to be at risk of infection because of behaviours, race, ethnicity, sexual orientation, gender, or whatever social characteristics happen to be stigmatized in a particular society. In most of the world, discrimination also jeopardizes equitable distribution of access to HIV-related goods for prevention and care, including drugs necessary for HIV/AIDS care and the development of vaccines to respond to the specific needs of all populations, in both the North and the South. As the number of people living with HIV and with AIDS continues to grow in nations with different economies, social structures, and legal systems, HIV/AIDS-related human rights issues are not only becoming more apparent, but also increasingly diverse.
The interaction between HIV/AIDS and human rights is most often illustrated through the impact on the lives of individuals of neglect, denial, and violation of their rights in the context of the HIV/AIDS epidemics. This is equally the case, albeit in different ways, for women, men, and children infected with, affected by, and vulnerable to HIV.
People infected with HIV may suffer from violations of their rights when, for example, they face government-condoned marginalization and discrimination in relation to access to health, education and social services1. In this context, the realization of rights by people living with HIV would require non-discriminatory access within a supportive social environment. People are affected by HIV/AIDS when their close or extended families, their communities and, more broadly, the structures and services that exist for their benefit are strained by the consequences of the pandemic and as a result fail to provide them with the support and services they need. These negative effects of the HIV epidemics on people’s lives may be compounded by marginalization and stigmatization on the basis of such attributes as race, migrant status, behaviours, or kinship that may be perceived as risk factors for HIV infection.
Violations of many of the rights of people affected by HIV may involve restricted or denied access to health services, education, and social programs.2 People affected with HIV may progress toward the realization of their rights and better health if the personal, societal, and other impacts of the HIV epidemics on their lives are alleviated. This requires policies and programs designed to extend support and services to affected families and communities. Children orphaned by HIV/AIDS illustrate this need.
Vulnerability to HIV is the lack of power of individuals and communities to minimize or modulate the risk of exposure to HIV infection. Even in populations where HIV has not spread widely, some individuals may be more vulnerable than others with regard to HIV. For example, gender differentials may impose on a monogamous woman that she engage in unprotected sex with her spouse, even if he is engaging in sex with others. Adolescent girls and boys may be vulnerable to HIV by the mere fact that they are denied access to preventive information, education, and services. A truck driver’s vulnerability to HIV may be enhanced by peer pressure to engage in multiple unprotected sexual encounters. Sex workers may be at greater vulnerability to HIV if they cannot access services able to diagnose and treat sexually transmitted infections, particularly if they are afraid to come forward because of the stigma associated with their occupation. Vulnerability is enhanced by the denial of such rights as the rights to information, education, association, or to essential care. To reduce vulnerability requires actions that enable individuals and communities to make and effectuate choices in their lives and thereby effectively modulate the health risks to which they may be exposed.
The effects of discrimination, particularly in the forms of racism, gender-based discrimination, and homophobia, continues to exacerbate the impact of the pandemic on the lives of individuals and populations around the world. It is increasingly recognized that realization of human rights is critical to protecting the rights and dignity of those infected and affected by HIV/AIDS, and to decreasing the relative vulnerability of individuals and communities.
Recognition of the relationship between Human Rights and HIV/AIDSIn the 1980s, the relationship of HIV/AIDS to human rights was only understood as it involved people infected with HIV and AIDS and the discrimination to which they were subjected.3 For HIV-infected people and people with AIDS, the concerns included mandatory HIV testing; restrictions on international travel; barriers to employment and housing, access to education, medical care, or health insurance; and the many issues raised by named reporting, partner notification, and confidentiality. These issues are serious, and almost 20 years into the epidemic they have not been resolved. In some ways, the situation has become even more complicated, as old issues crop up in new places or present themselves in new and different ways. For example, in certain settings, access to employment used routinely to be denied to people infected with HIV. Even in places where this situation has improved, HIV-positive individuals now run the risk of finding themselves excluded from workplace health insurance schemes, with considerable impact on their health and, therefore, on their capacity to work. There are also new issues, with tremendous human rights implications, that have been raised for HIV-positive people in recent years, including the large and growing disparities and inequities regarding access to antiretroviral therapies and other forms of care. 4
The 1980s were extremely important in defining some of the connections between HIV/AIDS and human rights. In fact, by the end of the decade the call for human rights and for compassion and solidarity with people living with HIV/AIDS had been explicitly embodied in the first WHO global response to AIDS.5 This approach was motivated by moral outrage but also by the recognition that protection of human rights was a necessary element of a worldwide public health response to the emerging epidemic. The implications of this call were far-reaching. By framing this public health strategy in human rights terms, it became anchored in international law, thereby making governments and intergovernmental organizations publicly accountable for their actions toward people living with HIV/AIDS. The groundbreaking contribution of this era lies in the recognition of the applicability of international law to HIV/AIDS – and therefore to the ultimate responsibility and accountability of the state under international law for issues relating to health and well-being.6 The strong focus in the 1980s on the human rights of people living with HIV/AIDS helped pave the way for increased understanding in the 1990s of the importance of human rights as a factor in determining people’s vulnerability to HIV infection and their consequent risk of acquiring HIV infection and chances of accessing appropriate care and support.7 It is only very recently, however, that human rights have also come to be understood to be directly relevant to every element of the risk/vulnerability paradigm.
Government responsibilities for Human Rights in the context of HIV/AIDSGiven the reality of violations that continue to occur in the context of HIV/AIDS, it is useful to consider the specific human rights responsibilities of governments. Governments are responsible for not violating rights directly, as well as for ensuring the conditions that enable people to realize their rights as fully as possible. It is understood that, for every human right, governments have responsibilities at three levels: they must respect the right; they must protect the right; and they must fulfill the right.8 As an illustration, consider governmental obligations in the context of HIV, using one right – the right to education:
Respecting the right means that states cannot violate the right directly. This means that the right to education is violated if children are barred from attending school on the basis of their HIV status.
Protecting the right means that a state has to prevent violations of rights by non-state actors – and offer some sort of redress that people know about and have access to if a violation does occur. This means that a state has to ensure, for example, that groups motivated by extremist ideologies are not successful when they try to stop adolescents from accessing reproductive-health education.
Fulfilling the right means that states have to take all appropriate measures – legislative, administrative, budgetary, judicial, and otherwise – toward fulfilling the right. If a state fails to provide essential HIV/AIDS prevention education in enough languages and mediums to be accessible to everyone in the population, this in and of itself could be und
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