HIV-Related Stigma and Discrimination - The Epidemic Continues

This article is one of a series commissioned to mark the tenth anniversary of the Canadian HIV/AIDS Legal Network, discussing past developments and future directions in areas of policy and law related to HIV/AIDS. It looks at HIV-related stigma and discrimination. The article summarizes the present situation as described in reports from numerous countries throughout the world. It reviews the institutional, non-institutional, and structural dimensions of HIV-related discrimination. It also identifies some essential components of anti-discrimination efforts: legal protection; public, workplace, and health-care programs; community mobilization; and strategizing on the determinants of health.

Fifteen years ago, in an address to the United Nations General Assembly, Jonathan Mann identified three phases of the AIDS epidemic in a community – the silent and unnoticed epidemic of HIV infection, the epidemic of HIV-related diseases that emerge later, and the epidemic of stigma and discrimination that characterizes people’s and society’s response to HIV and AIDS.] That third epidemic is the theme of a two-year World AIDS Campaign in 2002-2003.[1][[1]2[1]] It is timely to review the present situation and consider how to move forward, so that the World AIDS Campaign becomes the impetus for concrete and specific action on the epidemic of HIV-related stigma and discrimination.

The Present Situation

There is a growing body of evidence of HIV-related stigma and discrimination in the world.[1][[1]3[1]] In the past five years, studies have documented stigma and discrimination against people with HIV/AIDS or vulnerable to HIV in Australia,[1][[1]4[1]] Burkina Faso,[1][[1]5[1]] Cameroon,[1][[1]6[1]] Canada,[1][[1]7[1]] Côte d’Ivoire,[1][[1]8[1]] Gabon,[1][[1]9[1]] Ghana,[1][[1]10[1]] India,[1][[1]11[1]] Russia,[1][[1]12[1]] Mauritania,[1][[1]13[1]] the Netherlands,[1][[1]14[1]] New Zealand,[1][[1]15[1]] South Africa,[1][[1]16[1]] Switzerland,[1][[1]17[1]] Uganda,[1][[1]18[1]] the Ukraine,[1][[1]19[1]] the United Kingdom,[1][[1]20[1]] the United States,[1][[1]21[1]] and Zambia[1][[1]22[1]] – to name only reports that have come to the attention of the author. The news is not all bad. In some societies the prevalence of negative attitudes toward people with HIV/AIDS is relatively small,[1][[1]23[1]] support for coercive measures has declined,[1][[1]24[1]] and institutionalized discrimination toward people with HIV/AIDS is not widespread.[1][[1]25[1]] On the whole, however, there is much to be gravely concerned about.

First, in many societies there are blatant and aggressive forms of stigma and discrimination, including violence, against people with HIV/AIDS. Elsewhere, where the initial panic has subsided and information, policy, and legislation counteract stigma and discrimination, overt forms may be replaced with subtler ones.

Second, stigma and discrimination based on HIV status are only one aspect of a complex of associated forms of stigma and discrimination. Stigmatizing attitudes and discriminatory practices toward women, gay men, drug users, sex workers, aboriginal peoples, ethnic populations, and prisoners frequently contribute to and strengthen stigmatizing attitudes and discriminatory practices toward people with HIV/AIDS. These associated forms of stigma and discrimination are often deeply rooted in societies and enormously difficult to change.

Third, many societies have insufficient protections for people with HIV/AIDS from discrimination in health care, employment, housing, education, travel and migration, and other areas of social activity. Where such protections are in place, they may not be enforced or may be difficult to use. The types of actions to which people with HIV/AIDS or members of vulnerable populations may be subjected include HIV testing without knowledge or consent, disclosure of HIV status, failure to provide care and treatment, and denial of housing, employment, insurance, or permission to travel.

Finally, there is considerable evidence demonstrating that stigma and discrimination toward people with HIV/AIDS and vulnerable populations creates the conditions for the epidemics of HIV infection and HIV-related diseases to continue or flourish.[1][[1]26[1]] Women, children, gay men, drug users, sex workers, prisoners, and other vulnerable populations are less able to protect themselves from HIV infection because of cultural norms, laws, policies, and practices that place them at a disadvantage. People vulnerable to HIV are reluctant to be tested for HIV because of stigma associated with HIV infection and fear of disclosure of HIV status. People with HIV/AIDS may be deterred from accessing care because of the negative associations of HIV or because they anticipate or experience prejudicial behaviour from health-care providers.

Human rights declarations

Freedom from discrimination is a fundamental human right founded on principles of natural justice and enshrined in international and regional human rights instruments.[1][[1]27[1]] These instruments prohibit discrimination based on race; colour; sex; language; religion; political or other opinion; national, ethnic, or social origin; property; disability; fortune; birth; or other status. The United Nations Commission on Human Rights has declared that “the term ‘or other status’ in non-discrimination provisions in international human rights texts should be interpreted to cover health status, including HIV/AIDS” (resolution 1999/49). It has stated that “discrimination on the basis of HIV/AIDS status, actual or presumed, is prohibited by existing human rights standards” (resolution 2001/51).

The Guidelines on HIV/AIDS and Human Rights, developed by the Second International Consultation on HIV/AIDS and Human Rights convened in 1996 by the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS,[1][[1]28[1]] are designed to translate the rights enshrined in these instruments into practice. They offer concrete measures that states can take to protect and promote the health and human rights of people with HIV/AIDS and vulnerable populations. The United Nations Commission on Human Rights has repeatedly invited states, United Nations bodies, and other agencies to take all necessary steps to ensure the respect, protection, and fulfilment of HIV-related human rights as contained in the Guidelines, including taking all necessary measures to eliminate stigmatization and discrimination against those infected and affected by HIV/AIDS (resolutions 1999/49, 2001/51).

At the United Nations General Assembly Special Session on HIV/AIDS held in June 2001, all 189 member states adopted a Declaration of Commitment on HIV/AIDS.[1][[1]29[1]] The Declaration recognizes that “realization of human rights and fundamental freedoms for all is essential to reduce vulnerability to HIV/AIDS” and that “respect for the rights of people living with HIV/AIDS drives an effective response.”[1][[1]30[1]] States made a commitment to:

[b]y 2003, enact, strengthen or enforce, as appropriate, legislation, regulations and other measures to eliminate all forms of discrimination against and to ensure the full enjoyment of all human rights and fundamental freedoms by people living with HIV/AIDS and members of vulnerable groups, in particular to ensure their access to, inter alia, education, inheritance, employment, health care, social and health services, prevention, support and treatment, information and legal protection, while respecting their privacy and confidentiality; and develop strategies to combat stigma and social exclusion connected with the epidemic.[1][[1]31[1]]

In view of the disproportionate impact of the HIV epidemic on women and girls, states made additional specific commitments to protect and advance their human rights.[1][[1]32[1]] It is a disappointment that the states did not make similar commitments for other populations disproportionately affected by the epidemic and by discrimination, such as men who have sex with men, or injection drug users. Nevertheless, the unanimous agreement to protect the human rights of people with HIV/AIDS and vulnerable populations, as well to empower women and girls to protect themselves from HIV infection, is an important milestone.

Dimensions of stigma and discrimination

Stigma and discrimination are at work in several ways in society to compound or augment the impact of the HIV epidemic. Institutional discrimination operates in those spheres – health care, employment, housing, education, travel and migration – where legislation, regulations, policies, and procedures can include discriminatory or anti-discrimination provisions and practices. Non-institutional discrimination operates in those spheres – relations between individuals, within families, and within communities –that are beyond the direct purview of legislation, regulation, policies, and procedures. Here stigmatizing behaviour and discriminatory acts must be addressed through other means, such as public education and community mobilization. Structural discrimination refers to inequalities in both the institutional and non-institutional spheres of society related to gender, ethnic identity, socioeconomic status, and the like. These inequalities, which reflect the distribution and exercise of power and resources within the political economy of a society, often compromise people’s capacity to protect their health or to be cared for when ill.

Institutional discrimination

A review of legislation on HIV/AIDS from 121 countries found that only 17 percent of these countries have developed specific legislation to protect people with HIV/AIDS from discrimination in employment, education, sports, housing, public services, and other social activities.[1][[1]33[1]] The review does not take into account legislation that does not specifically refer to HIV/AIDS but nevertheless has been interpreted to apply to people with HIV/AIDS (such as legislation that provides protections on grounds of disability, and it relies on voluntary reporting on legislation from member states of the World Health Organization (70 of the 191 members did not report).[1][[1]35[1]] Even so, the finding suggests that work on protecting people with HIV/AIDS against institutional discrimination has hardly begun for large portions of the world’s population affected by the epidemic. Also telling is the number of countries that have legalized mandatory or coercive measures, such as mandatory HIV testing for vulnerable populations; obligatory participation in prevention programs; quarantine, isolation, or forced hospitalization of people with HIV/AIDS; or penal sanction for deliberately exposing others to the risk of HIV transmission.[1][[1]36[1]] Such measures increase and reinforce the stigmatization of people with HIV/AIDS, and do little to protect public health.[1][[1]37[1]]

Anti-discrimination legislation can be a useful tool in identifying, correcting, and remedying occasional and systemic discrimination against people with HIV/AIDS.[1][[1]38[1]] But it is not without its limitations. For individual complainants, the duration, complexity, and cost of procedures can, in effect if not by design, deprive them of a remedy.[1][[1]39[1]] Restrictive interpretations of anti-discrimination provisions by the courts and other bodies can significantly limit the grounds for complaint.[1][[1]40[1]] And subtle forms of prejudice, such as stigmatizing remarks by co-workers or avoidance in health-care settings, are difficult to document and address through anti-discrimination laws and policies.[1][[1]41[1]]

Non-institutional discrimination

HIV-related stigma is manifested in such attitudes as anger and other negative feelings toward people with HIV/AIDS; the belief that they are responsible for their infection and deserve their illness; avoidance and ostracism; and support for coercive public policies such as quarantine, mandatory testing, or public disclosure.[1][[1]42[1]] Such attitudes have been associated with mistaken beliefs that HIV can be transmitted through casual contact,[1][[1]43[1]] as well as negative attitudes toward populations affected by the epidemic (gay men, drug users, and others).[1][[1]44[1]] Even when populations become more accustomed to and knowledgeable about HIV, stigmatizing attitudes toward people with HIV/AIDS can persist in a significant minority of the population.[1][[1]45[1]]  

Even if only a minority of the population acts on its prejudices, fear of discrimination has a profound effect on people with HIV/AIDS. For example, women do not disclose that they have HIV to their male partners and extended family for fear of abuse and rejection.[1][[1]46[1]] Identifiable ethnic populations are reluctant to support public HIV education campaigns directed at their populations because of the adverse reaction they expect from others.[1][[1]47[1]] People are reluctant to be tested for HIV because they fear the stigmatization and discrimination that would ensue if their HIV status were known.[1][[1]48[1]]

Structural discrimination

The HIV epidemic exposes structural inequalities within society, particularly those related to gender, socioeconomic status, or ethnocultural identity. For instance, women are disproportionately affected by the epidemic because of their subordination to men in the domestic, economic, and political spheres of most (if not all) societies. They are less able to protect themselves from HIV infection, are more likely to be reproached for being HIV-positive, bear most of the burden of caring for the ill and dying, and are more likely to be abused and abandoned.[1][[1]49[1]] Similarly, Aboriginal people in Canada are more vulnerable to HIV infection because poverty, cultural alienation, and political exclusion have contributed to behaviours that either directly (injection drug use, unsafe sex) or indirectly (domestic violence, substance abuse) increase the risk of HIV infection.[1][[1]50[1]]

The Way Forward

The conditions that foster or permit HIV-related stigma and discrimination vary from society to society. Popular beliefs, cultural norms, professional standards, legislative frameworks – these are specific to societies and countries. Thus, there is no single recipe for addressing HIV-related stigma and discrimination. But there are some essential ingredients. While the mix may vary according to the prevailing circumstances in a society or country, each has an important role in countering stigma and discrimination.

Legal protection

Legal protection against discrimination is an essential component of any anti-discrimination strategy. Legal protection includes not only anti-discrimination laws and regulations, but also the capacity to invoke and enforce those laws and regulations through the courts, human rights tribunals, professional regulatory bodies, and the like. Notwithstanding the deficiencies of individual complaint procedures (discussed above), anti-discrimination measures create protections against arbitrary action and grounds for recourse in the event of such action. In addition, anti-discrimination measures provide an incentive for employers, professional associations, and similar bodies to develop anti-discrimination policies and procedures. Perhaps most important, anti-discrimination measures create a framework of rights that support communities and populations in mobilizing against stigma and discrimination. This is evident from the gains that, for instance, gays and lesbians in Canada and elsewhere have achieved as their rights have been recognized in employment, housing, pensions and other benefits, adoption, and spousal status.

Organizations can take a number of steps to assess and improve legal protection against HIV-related discrimination. The UNAIDS Protocol for the Identification of Discrimination against People Living with HIV can be used to determine whether laws, regulations, procedures, or practices are at present discriminatory.[1][[1]52[1]] It includes a template that can be used to identify 37 forms of discrimination against people with HIV/AIDS in 10 areas of social life. The areas covered are health care; employment; justice/legal processes; administration; social welfare; housing; education; reproduction and family life; insurance and other financial services; and access to other public accommodations or services. In these areas, the Protocol aims to identify discriminatory practices as well as discrimination in law, regulations, and procedures. To date, the Protocol has been used in Côte d’Ivoire,[1][[1]53[1]] the Philippines,[1][[1]54[1]] and Switzerland,[1][[1]55[1]] and is being used in a project involving China, India, Indonesia, Philippines, Thailand, and Vietnam.[1][[1]56[1]] The protocol is not without limitations.[1][[1]57[1]] It does not measure the quantity or intensity of discrimination in a given domain. It is not particularly sensitive in situations where HIV-related discrimination is actively discouraged. And it concerns itself only with institutional discrimination. Nevertheless, it provides an important starting point for identifying discriminatory provisions.

A second step is to identify, advocate for, and implement positive protections against HIV-related discrimination. The follow-up to the United Nations Declaration of Commitment on HIV/AIDS may be useful in this regard. At least one day of the annual session of the United Nations General Assembly will be devoted to the Secretary-General’s report on the progress that countries have made in realizing their commitments.[1][[1]58[1]] In their input to the Secretary-General’s report for 2002, countries are asked to state whether they have “legislation, regulations, and/or other measures in place to eliminate all forms of discrimination against people living with HIV/AIDS.”[1][[1]59[1]] Where HIV/AIDS organizations or other bodies have the capacity and the freedom to act in this regard, they might use this reporting mechanism as an occasion to assess the status of positive protections (or the absence thereof) in their country, and press for changes if required. Parliamentary forums, such as those established in Africa, Latin America and the Caribbean, India, and the UK,[1][[1]60[1]] could also be instrumental in reviewing and revising legislation.

Public, workplace, and health-care programs

Public programs intended to foster a more supportive and accepting environment for people with HIV/AIDS will need to address all the aspects of HIV-related stigma. It is not sufficient only to communicate accurate information about how HIV is – and is not – transmitted, important though this is to counter misapprehensions about casual contact with people with HIV/AIDS. It is also necessary to counter blaming and ostracizing responses to people with HIV/AIDS and stigmatized populations, and to promote solidarity with them.

Attitudes that influence behaviour within communities also influence behaviour in workplaces, health care, and other sectors. People carry their prejudices with them wherever they go. Even after anti-discrimination policies have been established, there continue to be reports of problems with disclosure of HIV status, avoidance, denial of service or employment, and related actions in employment and health care.[1][[1]61[1]] As services for people with HIV/AIDS become more “mainstream,” problems that were overcome in earlier stages of the epidemic, when services were offered in more specialized contexts, can recur.

Such behaviour, and the views that inform it, can and should be addressed through employment and health-care policies, which in turn need to be accompanied by workplace and health-care education and training. This is an ongoing process, in part because of turnover of staff in workplaces and health care, in part because the populations affected by the epidemic may change,[1][[1]62[1]] and in part because calls for unwarranted measures can emerge as the epidemic evolves.[1][[1]63[1]]

Community mobilization

In their analysis of HIV-related stigma, Robert Parker and Peter Aggleton stress the role of stigma in strengthening and reproducing social inequalities: “stigma is deployed by concrete and identifiable social actors seeking to legitimize their own dominant status within existing structures of social inequality.”[1][[1]64[1]] They suggest that educational programs by themselves are not likely to alter this dynamic. The power of stigmatized populations must be engaged through community mobilization to resist stigmatization and discrimination. This involves working with “resistance identities” generated by the stigmatized in reaction to the “legitimizing identities” employed by the stigmatizer, and developing new identities that break through this conflict to bring about social transformation.[1][[1]65[1]] In the process, stigmatized populations overcome not only the power of stigmatizing attitudes by others, but also the power such attitudes have when internalized by the stigmatized.

Community mobilization, in concert with a supportive legal framework, can be an effective force for change. The success of the Vancouver Area Network of Drug Users and Pivot Legal Society in defeating an attempt to close a health centre for drug users in Vancouver (see the report in Canadian News in this issue) is illustrative in this regard. The organization of drug users into a community-based group, coupled with the court’s recognition of that group as representing drug users, was instrumental in resisting discriminatory action. Similarly, AIDS advocacy organizations in El Salvador have appealed to constitutional and international law in challenging legislation allowing employers to impose pre-employment HIV testing on job applicants (see the report in HIV/AIDS in the Courts – International in this issue).

Community mobilization also enables diverse populations to modulate efforts to bring about change in accordance with the norms, traditions, and dynamics of their culture. Since the populations affected by HIV-related stigma and discrimination are diverse, both within a given society and across the world, this ability of communities to direct and refine efforts to counter stigma and discrimination is essential.[1][[1]66[1]]

Strategizing on the determinants of health

The role of structural inequalities in the political economy of a society – particularly their role in rendering populations vulnerable to HIV-related stigma and discrimination – means that efforts to address HIV-related stigma and discrimination will be incomplete without a strategy to analyze and alter these inequalities. This is a difficult and complex undertaking. Many of the determinants of health are outside the purview of public health and health-care services.[1][[1]67[1]] Nevertheless, as people working in health promotion have argued now for decades,[1][[1]68[1]] not to work on these determinants in any strategy to address the HIV epidemic, including the third epidemic, would be enormously shortsighted. In this regard, the statements in the United Nations Declaration of Commitment on HIV/AIDS on reducing vulnerability are quite to the point.[1][[1]69[1]]

Conclusion

It is not easy to overcome the cultural, institutional, and structural conditions that lead to stigmatizing attitudes and discriminatory actions toward people with HIV/AIDS and vulnerable populations. But there are concrete and specific things that communities and governments can do to prevent or mitigate discriminatory behaviour. States have committed themselves to enact, strengthen, or enforce legislation, regulations, and other measures to eliminate all forms of discrimination against people with HIV/AIDS and members of vulnerable populations by 2003. It is vital that they act on this commitment, and it is equally vital that organizations working in HIV/AIDS, human rights, development, and health hold them to their commitment and work with them to achieve it.