"HIV/AIDS-related stigma is a real or perceived negative response to a person or persons by individuals, communities or societies. It is characterized by rejection, denial, discrediting, disregarding, underrating and social distance. It frequently leads to discrimination and violation of human rights."

HIV/AIDS-related stigma and discrimination pose a serious threat to the basic human rights for all people infected, affected or associated with the disease. The right to health care, the right to freedom of speech and movement, the right to services like housing and education, the right to confidentiality, dignity, liberty and security, and ultimately the right to life, are all threatened by stigma and discrimination.

People with HIV/AIDS have been disowned by their families and friends, fired from their jobs and asked to leave their schools and homes. They have faced discrimination in health-care settings – as described by articles from India and Mexico – and in extreme cases, they have even been physically attacked or murdered in their communities.

Stigma leads to discrimination, which leads to human rights abuses that legitimise stigma. When fear and discrimination prevail, people often choose the false comfort of denial and ignore the possibility that they may have been exposed to HIV. Some may decide not to take measures to protect themselves, in order to avoid being associated with the disease. All this helps to create a dangerous environment in which HIV can more easily spread.

Dealing with stigma and discrimination

Fortunately, AIDS organisations and programmes are increasingly tackling denial, ignorance and fear to break the cycle of stigma, discrimination and rights abuses. One of the best ways to break the cycle of stigma and discrimination is by ensuring that people living with HIV/AIDS (PLWHA) can properly contribute to society. One of the most effective ways to do this is through care and treatment, which keeps people healthier and productive for longer. The World Health Organization and UNAIDS are now spearheading the "3 by 5" Initiative that seeks to roll out antiretroviral treatment to three million people, in areas of most need, by the end of 2005.

In addition to increasing access to care and treatment, other powerful efforts to curb HIV/AIDS-related stigma and discrimination are driven by the involvement of people living with or affected by HIV/AIDS in prevention and other activities. Around the world, PLWHA have built campaigns, organisations and mass movements, which mobilise action against the epidemic and press political economic powerbrokers to tackle the epidemic with resolve. Examples abound – from programmes for leadership training in Zambia to treatment access campaigns in South Africa and media advocacy activities in Belarus – all organised through "positive power".

It helps to get the message out early, too. Kami, an HIV-positive Muppet, features in the South African television programme Talkalani Sesame, where she broaches HIV/AIDS issues with her friends. The aim is to expose the audience – mainly young children aged 3-6 years – to AIDS-related stigma and discrimination, and to the ways in which people challenge or cope with it.

Most successful initiatives recognise the role of legislation as a tool against stigma and discrimination. In South Africa, the law has been used to reinstate workers dismissed because of their HIV status. Venezuela's Accion Ciudadana Contra el Sida (ACCSI – Citizens' Action Against AIDS) fights human rights violations against PLWHA by providing free legal advice and handling legal appeals regarding discrimination in employment, medical practice, and social services. ACCSI has also helped extend the scope of a treatment and care programme within the social security system. The Philippines' HIV/AIDS Control and Prevention Act is another example of how legislation can serve as a useful instrument for combating HIV-related discrimination.

World AIDS Campaign focusing on stigma

Another recent initiative was a global focus on HIV/AIDS-related stigma and discrimination as part of the UNAIDS-led World AIDS Campaign from 2002-2003. The Campaign set out to highlight the harm of stigma and discrimination, challenge underlying ignorance, fear and denial, and promote hope and the positive contribution that can be made by people living with, or affected by HIV/AIDS. It also aimed to create a framework for activity at national and local level to address stigma in different settings.

The two-year World AIDS Campaign was the catalyst for a number of high-profile innovative awareness-raising events and secured unprecedented use of campaign materials produced by UNAIDS. This included more than 500,000 posters and a campaign public service announcement that was broadcast on major global networks (including TV5, BBC World and MTV) and on many national networks. Materials were widely adapted at national level for web and print use and for major billboard campaigns. The UNAIDS website attracted more than 350,000 visitors during the week of World AIDS Day.

The Campaign also stimulated a number of high-profile innovative events around World AIDS Day, including concerts, celebrity initiatives, media debates, sports events and the involvement of politicians and faith-based organisations. For many opinion formers this was the first time they had considered the issue of stigma and discrimination, and how it severely undermines the response to HIV/AIDS.

This year, 2004, the theme of tackling stigma and discrimination has evolved into a specific focus on women and girls – including an exploration of the role played by men and boys in addressing HIV/AIDS-associated gender issues. The Global Coalition on Women and AIDS has been launched to address the impact of HIV/AIDS on women and girls, and a key Campaign partner – the International Federation of Red Cross and Red Crescent Societies – is continuing to focus on broader stigma and discrimination issues throughout the year, as described by the article of Felicita Hikuam.

From analysis to action

There is no doubt that stigma and discrimination will continue to act as formidable barriers to effective care, prevention and treatment. But there is hope. Research helps to broaden our understanding of the impact of stigma and discrimination, and how best to undermine it, as shown by several Research Notes in this issue. Important strategies include information and education, listening to those infected and affected by HIV/AIDS, strengthening legal protection for vulnerable groups, and greater access to care, prevention and treatment services.

The Declaration of Commitment agreed at the United Nations General Assembly Special Session (UNGASS) on HIV/AIDS in June 2001 set comprehensive targets to guide the global response to AIDS including specific targets to tackle stigma and discrimination. The increased sensitivity to stigma and discrimination, and the hope that greater access to prevention, care and treatment brings, will help break the vicious cycle. In 2004, much more remains to be done to eradicate stigma and discrimination, but it is clear that the UNGASS focus – together with the added "noise" around stigma and discrimination from the two-year World AIDS Campaign – has helped leverage political commitment. With the many stigma-reduction interventions now under way, the response has shifted from analysis to action. We need to ensure that this increased action reaches its potential through ongoing robust monitoring and evaluation of stigma-reduction interventions.