The epidemiological impact of HIV discrimination

Harry Witzthum, 22 May 2012

Numerous studies have demonstrated HIV discrimination is a serious impeding factor in the treatment and the prevention of the spread of HIV. Indeed, there is a case for regarding discrimination itself as a disease, which may help unify approaches to combating HIV.

We have come a long way since the HIV epidemic first hit societies around the globe and caused so much suffering. Today we have highly effective antiretroviral HIV therapies at our disposal; the access to HIV treatment for people in need of medication has increased during the last 5 years to a global rate of 42%. There are strategies in place to attain universal access for the 58% of people in need of HIV therapies who currently have no access to them. There has also been progress in prevention efforts.

However, despite the medical and social successes, the epidemic is far from under control. More than 33 million people are living with HIV and AIDS. In 2009 alone, 2.6 million people were newly infected with HIV. As our knowledge of the different HIV epidemics has improved, we have come to better understand the pivotal role that social determinants play in the spread of HIV.

One such factor is the discrimination against people living with HIV and AIDS. It is common knowledge today that the discrimination and stigmatisation of HIV/AIDS is one of the key impediments for progress in the fight against HIV. As recently as last June 2011, at the 65th United Nations General Assembly Special Session on HIV and AIDS, UN Secretary General Ban Ki Moon was cited as stating that "thirty years after the epidemic was initially recognised, human rights violations continue to prevent open and compassionate discussion of the HIV challenge.” It is difficult to find any national or international policy paper on HIV that does not mention the stopping of discrimination as a key objective in the efforts to fight the epidemic. HIV is spreading within and among populations because people dare not speak about sex, high risk behaviour and HIV out of fear of violence, repression, and social exclusion. Discrimination is still a central topic in the field of HIV. It is therefore of greatest importance to tackle discrimination as part of overall efforts to combat the HIV epidemic.

The illegality of discrimination

Discrimination is a human rights issue. It is a consequence of a specific stigma and is defined as when, in the absence of objective justification, a distinction is made against a person that results in that person being treated unfairly and unjustly on the basis of belonging, or being believed to belong, to a particular group. Actual discrimination is therefore a breach of fundamental human rights, and ultimately illegal. In most countries, but by no means all, people affected by discrimination can protect themselves by recourse to laws explicitly prohibiting discrimination.

Getting the division of labour wrong

The campaign against HIV frequently operates under an implicit assumption of a division of labour. On the one side of the division are prevention efforts targeted at HIV negative individuals. Examples include: influencing the behaviour of target groups; HIV counselling and test strategies; and bio-medical prevention approaches eg pre – or post exposure prophylaxis. On the other side of the division are strategies targeted in support of HIV positive individuals. These target discrimination and stigmatisation, addressing societalpractices that undermine the rights of people living with HIV and AIDS.

As in the context of other kinds of division of labour, it is assumed that experts in different fields implement their respective activities. Sometimes donors will fund either prevention or anti-discrimination work, but rarely both. Policy papers may list concrete and measurable prevention goals, but neglect to pay much attention to the need of fighting discrimination. What such approaches miss is the fact that anti-discrimination initiatives are and should be understood as a pivotal element of prevention in and of themselves. It is not an either-or issue - anti-discrimination work is not just a supporting factor for HIV prevention. Anti-discrimination is itself a form of prevention. Policy makers and donors need to understand this fact, and not succumb to false assumptions. This article seeks to challenge these assumptions by developing an approach aimed at diminishing discrimination.

Working analogies: How to view HIV discrimination as an epidemic

A different approach to HIV discrimination is required. HIV discrimination should itself be viewed in the form of an epidemic, which is fuelling new HIV infections. The method is to apply concepts common to epidemiology to the field of discrimination. This cannot be literally applied. However, working with analogies and drawing out similarities between the two fields can help re-conceptualise anti-discrimination work.

By defining HIV/AIDS discrimination as an epidemic, we can better understand how it fuels new HIV infections. We know this phenomenon from the impact other sexually transmitted infections (STIs) have on the spread of HIV. Persons with an STI have a higher probability of acquiring HIV and of transmitting HIV to a sexual partner. The increased activity of their immune system in fighting the pathogens causing the STI, make specific target immune cells more vulnerable to HIV infection. The STI epidemic thereby superimposes itself on top of the HIV epidemic and boosts the chances of acquiring a new HIV infection. HIV discrimination can be interpreted in the same way - as a virtual epidemic that superimposes itself on the HIV epidemic and directly causes new HIV infections. Addressing the underlying social determinants of this behavioural practice is as much of importance as addressing the determinants of patterns of risky sexual behaviour with regard to HIV and other STIs as is usually done in prevention work. The practice of HIV discrimination is not in and of itself an epidemic, but it might be useful to view it as such by working with analogies between the two.

Introducing the pathomemes: A new agent causing “epidemics”

Any analogy needs a factual basis to build upon. Our starting point is the concept of a pathogen. A pathogen is a microorganism such as a virus, bacterium, prion, or fungus that causes disease in its animal or plant host. It spreads through a population by different transmission routes and causes in some hosts the outbreak of a specific disease. The word pathogen has the word gene as its core. A gene is a working subunit of DNA that carries a set of instructions for the building of particular proteins which is partly responsible for the pheno-/genotype of an organism that replicates, mutates and responds to natural selection pressures.

A literature exists that employs an analogous concept to describe certain phenomenon on a cultural level. The evolutionary theorist Richard Dawkins originally developed his theory of memetics from such a base.[1] A meme, as it is called in Dawkins’ theory to mirror the gene, is an idea, behaviour or style that spreads from person to person within a culture, that self-replicates, mutates and responds to cultural selection. These may include melodies, catch phrases, fashion, architectural features, and other individual traits which permeate our culture. Such phenomena spread through a culture by social learning mechanisms, invades a 'host' and can be transmitted by specific learning routes from one host to the next.

There is an analogous concept to a pathogen, which can be described as a pathomeme. A pathomeme is any cultural item such as an idea, a behaviour or style that causes disease in its host or the population, in this case, the behavioural pattern of HIV discrimination. It is a cultural phenomenon, a specific behaviour that spreads from host to host by defined learning mechanisms. The behaviour can cause disease in its host or other members of the group it affects. The disease, in our context, would be the acquisition of HIV. This is the end of the analogy - a specific behavioural pattern acts as the pathomeme of an epidemic that causes the acquisition of new HIV infections. Once this base is established, it is possible to apply standard concepts of measuring epidemics in a way analogous to our 'epidemic', namely the concepts of prevalence, incidence, and attributable risk. These concepts shape the nature of the behavioural and actual epidemic.

Prevalence of HIV discrimination

Prevalence is a statistical concept referring to the number of cases of a disease that are present in a particular population at a given time. This suggests finding prevalence measures of the occurrence of HIV discrimination within particular populations. A literature research shows that one can find such studies. In Kenya 75% of people living with HIV experienced HIV discrimination[2], in China around 50% of people living with HIV experienced it[3], and around 28% in Switzerland. [4],[5] There is not yet a consensus of how to measure the occurrence of HIV discrimination in a consistent way, as HIV discrimination is culture specific. However, indicatory discrimination studies do exist.

Incidence of HIV discrimination

Incidence is the frequency with which something appears in a particular population usually with the timeframe of 1 year. Here too, the occurrence of HIV discrimination can be measured. The Swiss Aids Federation has a national reporting system in place that collects reported HIV discrimination since 2007[6]. In the year 2011 84 HIV discrimination cases were reported. That is an increase of 40% compared to the reference year of 2007 (66 cases). It is clear that the reported cases are only the tip of an iceberg, as many HIV discrimination occurrences will not be reported. However, a measure of new HIV discrimination does exist. And the example from Switzerland shows that incidence is on the increase.

Attributable risk of HIV discrimination

Attributable risk is the risk of disease or death in individuals exposed to a specific risk factor, ie the difference in risk for unexposed versus exposed individuals. The specific risk factor is the experience of HIV discrimination. The risk is that those discriminated against pass on the actual HIV infection. Recent research has shown how experience of HIV discrimination can causally lead to behavioural patterns that carry a higher risk of HIV infection. A Chinese study has demonstrated how victims of HIV prejudice, who presumed themselves to be HIV negative, were more likely to engage in high risk behaviour themselves and to have an STI. The 'acquisition' of a behavioural pattern, such as discriminating against people living with HIV, is a risk factor for HIV-negative individuals. This supports the thesis that HIV discrimination is actually acting as a pathomeme.[7]

A French study has shown that the experience of discrimination in a sample of more than 2000 sexually active people living with HIV was associated with increased unsafe sex by this group in comparison to a similar group of people living with HIV not experiencing discrimination[8]. What these and other studies show is that the 'spread' of HIV discrimination within a population, either of HIV positive people experiencing discrimination or of HIV negative people practising discrimination, leads to an increased uptake of HIV infection in the group, either by new HIV infections or transmission of HIV to other sexual partners.

Other studies show that people living with HIV experiencing discrimination are less likely to access health care or have a lower probability of retention in health care.[9] Given that effective HIV treatment can lower the viral load of a person, and thereby diminishing the risk of transmitting HIV to sexual partners, one can begin to appreciate how discrimination and its impact on accessing health services can increase the potential of transmitting HIV in a given population. It is a clear indication of the attributable risk of HIV discrimination to an increase in HIV cases.

HIV discrimination: The hidden “epidemic”

What this thesis – and empirical facts – show, is that HIV discrimination has a causal effect in that it influences the risk of HIV infection. The 'spread' of such behaviour within a population has an epidemic effect in that it raises the burden of HIV infection that would be lower if it did not exist. Anti-discrimination efforts begin to look essentially preventive. If such arguments succeed, it no longer would make sense to define anti-discrimination work as merely supporting or facilitating prevention. It clearly does have such a role. However, limiting it to this role would be to miss something very important. Work aimed at decreasing discrimination against people living with HIV needs to be embedded in prevention efforts. The fight against discrimination needs to be understood within the approach of holistic prevention to address the HIV epidemics successfully. Only in such a context, can it unlock its full potential.

References

[1] Dawkings, R. The selfish gene. Oxford University Press, 1976

[2] Odindo M./Mwanthi M.: Role of Governmental and Non-Governmental Organizations in Mitigation of Stigma and Discrimination Among HIV/AIDS Persons in Kibera, Kenya, East African Journal of Public Heath, Vol. 5, No. 1, April, 2008

[3] Li, X.H. et al.: Stigma reported by people living with HIV in South Central China. Janac-Journal of the Association of Nurses in HIV in Aids Care 20 (1), 2009

[4] Pärli, K. et al.: Aids, Geld und Recht, 2003

[5] For more studies and information, see UNAIDS: HIV-related Stigma and Discrimination: A summary of recent literature, 2009

[6] See www.aids.ch

[7] Haijun Cao, Na He, Qingwu Jiang, Meixia Yang, Zhenyao Liu, Meiyang Gao, Pengli Ding, Li Chen, and Roger Detels: Stigma against HIV-infected persons among migrant women living in Shanghai, AIDS Educ Prev. 2010 October; 22(5): 445–454

[8] Peretti-Watel P, Spire B, Obadia Y, Moatti J-P, for the VESPA Group (2007) Discrimination against HIV-Infected People and the Spread of HIV: Some Evidence from France

[9] Kinsler et al.: The effect of perceived stigma from a health care provider on access to care among low-income HIV-positive population. AIDS Patient Care & STDs 2007; Rajabiun S et al.: "Getting me back on track": the role of outreach interventions in engaging and retaining people living with HIV/AIDS in medical care. AIDS Patient Care & STDs 2007; Reif S et al.: Barriers to accessing HIV/AIDS care in North Carolina: rural and urban differences. AIDS Care 2005

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Author

Harry Witzthum

Swiss AIDS Federation

Harry Witzthum leads the Division Development of Aids-Hilfe Schweiz, which is responsible for the development of strategic topics, policy papers, monitoring and training. He is also a member of the organisation's board of executive directors. Mr Witzthum is a member of several European networks of HIV organisations and (was up to January 2012 the chair) of AIDS Action Europe, a pan-European network of HIV organisations.

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