The harm of HIV in the popular imagination

Edwin J. Bernard
Published: 18 July 2010

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Where ART is available, as it is in the UK, it is inaccurate to describe HIV infection as a death sentence. It is also inaccurate to assume that the infected person’s life-span will be significantly reduced as a direct result of HIV infection. Some news stories still like to describe the life of someone living with HIV as permanently blighted by fear of developing AIDS. With the development of ART this is not an accurate description of the experience of most people living with HIV. Of course, there are continuing health concerns, but living with HIV and the side effects of treatment no longer conform to the old template of HIV infection followed eventually but inevitably by the onset of AIDS. Even more inaccurate is to describe someone living with HIV with phrases such as ‘AIDS time bomb’. The major issue for someone living with HIV in the UK today is often not their health, but rather the twin issues of stigma and discrimination.

NAT and National Union of Journalists, Guidelines for reporting HIV,  2007.1

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 expectancyiv, 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).

Case study: Australia, Canada and the United Kingdom: How the criminal justice system's view of the ‘harm of HIV’ may be influenced by HIV-related stigma.

In 2004, an English judge said, whilst passing sentence for reckless HIV transmission: “I cannot imagine a greater degree of grievous bodily harm than infecting a person with a virus of this nature."10 In 2007, an Australian judge stated that he believed that exposing a sexual partner to the risk of acquiring HIV was "an altogether much more serious matter" than the maximum five-year penalty for the charge of reckless conduct endangering serious injury would indicate, because of "the anguish caused to the complainant over a significant period of time" following the discovery of her exposure to (but not infection with) HIV.11 In 2008, a Canadian judge was investigated for misconduct after insisting that an HIV-positive witness wear a mask while testifying in his courtroom. The judge eventually apologised and took part in HIV-related training.12

References

  1. NAT/NUJ Guidelines for reporting HIV. London, available online at: www.nat.org.uk/Information-and-Resources/Media-reporting.aspx, 2007
  2. Brimlow DL, Cook JS, Seaton R (eds) Interventions. in Stigma and HIV/AIDS: A Review of the Literature, 2003
  3. Flavin J (Mis)Representing risk: headline accounts of HIV-related assaults. American Journal of Criminal Justice 25 (1): 119-136, 2000
  4. International Federation of Journalists The Story of Our Time - IFJ Research on Media and HIV/AIDS. Press Release, July 25, 2006
  5. The Body Rumors, Myths, and Hoaxes. Available online at www.thebody.com/content/art17111.html, date accessed: 25 June, 2010
  6. Burris S, Cameron E, Clayton M The criminalisation of HIV: time for an unambiguous rejection of the use of criminal law to regulate the sexual behavior of those with and at risk of HIV. Social Science Research Network, 2008
  7. Jürgens R et al. Ten Reasons to Oppose the Criminalization of HIV Exposure or Transmission. New York: Open Society Institute, 2008
  8. IPPF, GNP+, ICW Verdict on a Virus: public health, human rights and criminal law. Available online at: www.ippf.org/en/Resources/Guides-toolkits/Verdict+on+a+virus.htm, 2008
  9. James R and Azad Y Do judges understand HIV? A review of court transcripts from cases involving HIV transmission. 15th British HIV Association Conference, Liverpool, Poster P21, 2009
  10. Carter M Man who “probably knew” he was HIV-positive jailed in England after infecting sexual partner. aidsmap.com. Available online at: www.aidsmap.com/page/1417263/, 14 January, 2004
  11. Robinson N Penalty for reckless HIV sex “inadequate”. The Australian. Available online at: www.theaustralian.com.au/news/penalty-for-reckless-hiv-sex-inadequate/story-e6frg6of-1111115025563, 4 December 2007
  12. Bernard EJ Canada: Ontario judge “humbled” after revealing HIV ignorance. Criminal HIV Transmission. www.criminalhivtransmission.blogspot.com, 12 January 2009
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.