The harm of HIV in the popular imagination

HIV is a highly stigmatised virus. Recognition of the uniquely stigmatised nature of HIV early in the AIDS epidemic led to the establishment of special practices for HIV in the realms of disease surveillance, partner notification, and HIV testing and counselling. These practices were intended to mitigate the public health impact of any reluctance to seek testing and treatment, by protecting the human rights of people living with HIV. This concept of 'HIV exceptionalism'² – treating HIV differently from other communicable diseases and sexually transmitted infections – may be sending a mixed message: people living with HIV are not unlike people with other diseases, but at the same time, HIV warrants a different response. While the harmfulness of HIV is not necessarily an explicit part of this discussion, it is understandable that much of the general public concludes that there must be something particularly ominous about HIV if it is being singled out in so many ways.

Read about how HIV-related stigma leads to social hostility, prejudice and discrimination in the chapter: Fundamentals. 

Read about the impact of HIV-related stigma on the ability to talk honestly about HIV in the chapter: Responsibility. 

In addition, HIV-related stigma perpetuates itself and prevents people from better understanding HIV: fear of being associated with the virus is not just a disincentive to HIV testing, access to treatment and care, and/or disclosing one's HIV status. HIV-related stigma is also a disincentive to learning more about the virus.

For most people, knowledge and understanding of HIV is gleaned from news and entertainment media: newspaper, magazine and internet articles; radio and television news reports; and non-documentary television programmes and films. Very few of these media portray HIV-related risks or harms accurately or realisticallyⁱ and often use sensational and derogatory reportage and terminology.^3,4

Furthermore, contradictory perspectives among people engaged in different aspects of the global response to HIV may add to the confusion about the 'harm' of HIV. To one degree or another, most approaches to HIV prevention emphasise the potential harmfulness of the virus; this is why people are being asked to take note of the prevention information being presented. When there is reporting on new evidence related to interventions that may reduce the likelihood of acquiring or transmitting HIV (such as male circumcision in the case of the former,ⁱⁱ or effective ART taken by people living with HIV in the latter), public health experts may feel compelled to stress the residual risks and harms that still remain, out of concern that the public will seize on the ‘good news’ as justification for abandoning various HIV-prevention measures.ⁱⁱⁱ Such messages can make it very difficult to accurately assess how 'dangerous' HIV actually is.

Since misinformation persists regarding many important aspects of HIV, from transmission risk⁵ to life expectancy^iv, it is highly likely that HIV-related stigma – as much as the physical impact of the virus on the body – informs the way that the criminal justice system approaches the 'harm' of HIV. Some commentators argue that this, in turn, further impacts upon the stigma of living with HIV.^6,7,8

For example, many HIV-specific laws in the United States still state that individuals living with HIV who expose others to saliva, urine or faeces "with the intent to transmit HIV" commit felonies punishable by long prison terms, even though it has been known for at least two decades that it is not possible to transmit HIV in these ways.^v

A 2009 analysis of court transcripts of cases involving criminal HIV transmission in England and Wales (where high-quality treatment is universally available) found that judges still believed HIV to be a terminal illness with an arduous and unproven treatment regime. Some did not understand how HIV differed from AIDS, and some thought that unprotected sex with an HIV-positive person would almost inevitably cause an HIV-negative person to become infected.⁹

i. For a detailed analysis of the media's impact on erroneous perceptions about HIV-associated risks and harms in a low-prevalence, high-income setting see: Kitzinger J Media impact on public beliefs about AIDS. in D Miller, J Kitzinger, K Williams and P Beharrel (eds) The circuit of mass communication. London: Sage Publications, 1998.  Earlier research, published in 1993, is available as a pdf download: Understanding AIDS: audience perceptions of Acquired Immune Deficiency Syndrome.

For a detailed analysis of the media's impact on erroneous perceptions about HIV-associated risks and harms in a high-prevalence, low-income setting see: Bolognesi N and Swartz L, The Media Management of HIV/AIDS in Sub-Saharan Africa with Particular Reference to South Africa: A Window to Developing Communication Strategies for the Epidemic in the Region in Media, Communication, Information: celebrating 50 years of theories and practice. UNESCO, 2008.

ii. To read more about male circumcision for HIV prevention, see www.who.int/hiv/topics/malecircumcision/en/

iii. For example, discussions regarding the 'Swiss statement' on the impact of HIV treatment on individual infectiousness attempted to weigh the potential benefit of disseminating this information against the potential harms, including behavioural disinhibition. See ‘Swiss statement that “undetectable equals uninfectious” creates more controversy in Mexico City’ on aidsmap.com, 5 August 2008.

iv. In high-income countries, even expert witnesses continue to characterise HIV as a ‘death sentence’, however: see Criminal HIV Transmission  (www.criminalhivtransmission.blogspot.com).

v. Details of each state's laws can be found at Lambda Legal's State Criminal Statutes on HIV Exposure (www.lambdalegal.org/our-work/publications/general/state-criminal-statutes-hiv.html, accessed 27 June 2010).