The challenge of HIV-related stigma

Edwin J. Bernard
Published: 18 July 2010

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From the first diagnosis of 28 years ago of what eventually came to be called AIDS, HIV has carried a mountainous burden of stigma. Stigma has, in fact, been the predominant feature of the social and political response to AIDS. No other infectious disease is viewed with as much fear as is HIV. In fact, diseases far more infectious than HIV are treated with less repugnance.

Justice Edwin Cameron, South Africa Constitutional Court, 20091

Social hostility, prejudice and discrimination towards people with HIV exists in every country in the world on a broad social and political scale. This can result in the unfair and unjust treatment of an individual based on his or her real or perceived HIV status, and affect how people at risk of HIV consider their own risks and willingness to test for the virus.

Although there have been significant shifts in public opinion over the last few decades in high-income countries2,3 – and, alongside the increasing availability of treatment and care, more recently in low- and middle-income settings4 – people living with HIV continue to experience stigma in many aspects of their life.

HIV-related stigma (literally a 'mark of shame') devalues people living with HIV. HIV-related stigma is felt by people with HIV when they internalise the negative attitudes commonly associated with the virus. Read about the impact of HIV-related stigma on the ability to talk honestly about HIV in the chapter: Responsibility

The net impact of such attitudes, as described by UNAIDS, is that people living with HIV "are often believed to deserve their HIV-positive status as a result of having done something 'wrong'. By attributing blame to particular individuals and groups that are 'different', others can absolve themselves from acknowledging their own risk, confronting the problem and caring for those affected."5

The drivers of social hostility, prejudice and discrimination towards people with HIV are complex, can be informed by personal and/or religious values and are often dependent on setting. The stigma attached to HIV may be the result of the following factors:

  • HIV is mistakenly thought to always lead to AIDS and/or serious illness and death.
  • HIV infectiousness is often over-estimated.
  • HIV disproportionately affects groups that are already stigmatised, including men who have sex with men, people who inject drugs, sex workers, prisoners, and economically marginalised and/or migrant populations.

A study comparing stigmatising attitudes towards people with HIV in Tanzania, Thailand, South Africa and Zimbabwe found that contributing factors include fear of transmission, fear of suffering and death, and the burden of caring for family members living with HIV. Having a supportive family, access to antiretrovirals and other resources, and self-protective behaviours of people living with HIV (i.e. not disclosing their HIV status) protected against HIV stigma and discrimination.6

A similar study found that there was a correlation between stigmatising attitudes towards people with HIV, HIV prevalence and the availability of treatment. Stigmatising attitudes towards people with HIV were more prevalent where there were fewer people living with HIV and where treatment access was more difficult.4

However, even in wealthy countries where there is nearly universal access to HIV treatment, stigmatising attitudes towards people with HIV continues to be a major issue. A 2006 Canadian opinion poll on public attitudes towards HIV found that half of the respondents said they would feel uncomfortable using a restaurant drinking glass once used by a person living with HIV, and 27% would even feel uncomfortable wearing a sweater once worn by a person living with HIV. This was despite the fact that most respondents believed that they were knowledgeable regarding mode of HIV transmission.7

Similarly, a 2009 US opinion poll on public attitudes towards HIV found that 23% of respondents would be uncomfortable working with someone they knew to be living with HIV, and half of all respondents said they would be uncomfortable having their food prepared by someone who is living with HIV.3 These attitudes were associated with enduring misconceptions about how HIV is transmitted and acquired.

And results from a recent survey by the National Centre in HIV Social Research, based in Australia, found that HIV-negative gay men who relied on HIV-status disclosure to inform their decisions about sexual risk-taking were more likely to stigmatise HIV-positive gay men.8

References

  1. Cameron E Criminalization of HIV transmission: poor public health policy. HIV/AIDS Policy & Law Review 14 (2), December 2009
  2. National AIDS Trust Public Attitudes Towards HIV 2007. London, January 2008
  3. Kaiser Family Foundation 2009 Survey of Americans on HIV/AIDS: summary of findings on the domestic epidemic. April, 2009
  4. Genberg BL A comparison of HIV/AIDS-related stigma in four countries: negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Soc Sci Med. 68(12):2279-87, 2009
  5. UNAIDS Evidence for HIV decline in Zimbabwe: a comprehensive review of the epidemiological data. Geneva, 2005
  6. Maman S A comparison of HIV stigma and discrimination in five international sites: the influence of care and treatment resources in high prevalence settings. Soc Sci Med. 68(12):2271-8, 2009
  7. Public Health Agency of Canada HIV/AIDS Attitudinal Tracking Survey 2006. EKOS Research Associates, 2006
  8. de Wit J et al. Vicious circle of self-protection: reliance on serostatus disclosure to reduce risk of HIV is associated with greater stigma among HIV negative MSM in Australia 18th International AIDS Conference, Vienna, abstract CDD0921, 2010

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A writer and advocate on a range of HIV-related issues, Edwin has a particular specialism in HIV and the criminal law. He works with national and international HIV organisations, including the International AIDS Society, GNP+ and UNAIDS, as well having as a long association with NAM as a writer on this topic and as the former editor of HIV Treatment Update. To visit Edwin's blog and respond to posts click here.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
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This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.