[procaare] HIV Stigma and Rates of Infection: A Rumour without Evidence?

["PLoS Medicine" <procaare@healthnet.org>]

HIV, Stigma, and Rates of Infection: A Rumour without Evidence
Daniel D. Reidpath*, Kit Yee Chan
PLoS Medicine: 3(10): e435
***********

[*Mod note: In the essay below from the recent PLoS journal,  the 
researchers cast doubt on hypothesis that stigma fuels HIV epidemic as 
proclaimed by UNAIDS and several other key organizations working in the 
field. Lack of evidence is one of the main bases for their arguement. As 
people who work everyday in the trenches, what is your view on this?]


The modern concept of a social stigma comes from the work of American 
sociologist Erving Goffman, who described it as a response to a deeply 
discrediting attribute that devalues the person [1]. In the medical 
literature, stigma is almost inevitably written about in terms of adverse 
social sequelae of a disease-such as leprosy, tuberculosis, epilepsy, 
schizophrenia, or filariasis [2-6]-or a physical characteristic or 
functional loss, such as obesity, deafness, or paraplegia [7-9]. The 
consequences of stigma range from moderate opprobrium at one end of the 
spectrum to death [10].

The Role of Stigma in Society

But is stigma always bad for health? Recent research has begun to move 
beyond the generally descriptive work that has populated the field to 
consider the possible social and biological functions of stigma [11,12]. 
This new research has broadened the focus from a singular interest in those 
who are stigmatised, and the negative effects this has on their lives, to 
the role of stigma within a population.

When considered at a population level, stigma can be studied as an enduring 
social process, which inevitably produces negative outcomes for some 
individuals but might in some circumstances produce positive outcomes for a 
population. The orchestrated stigmatisation of smoking is a case in point. 
It appears to reduce the population burden of mortality and morbidity due to 
tobacco by encouraging some to quit (or never to smoke), although it leaves 
"recalcitrant" smokers more marginalised by their continued habit [13,14].

The Stigma of HIV

On any ranked list of stigmatised conditions, HIV would have to lie towards 
the top. As a global public health issue, HIV remains a huge priority. In 
2005, it was estimated that 40.3 million people were living with HIV/AIDS, 
4.9 million had newly acquired infections, and 3.1 million had died [15]. 
The delivery of antiretroviral therapy to everyone infected and the 
development of new antiretroviral therapies are critical to controlling the 
epidemic. But equally important is the prevention of new infections.

In 2002, the Joint United Nations Programme on HIV/AIDS (UNAIDS) published a 
report declaring that the stigma associated with HIV was one of the 
"greatest barriers" to preventing new infections and alleviating the impact 
of the disease [16]. In other words, stigma is one of the major determinants 
of the trajectory of the epidemic. For UNAIDS to make such a declaration, 
one would expect there to be a considerable body of evidence to back its 
position. Such a statement naturally suggests that combating the stigma 
associated with HIV is worthy of substantial economic and human investment.

In the four years since the report was published, the UNAIDS position has 
remained consistent [17], and is also now well reflected within the World 
Health Organization (WHO) [18]. The UNAIDS position, however, is 
complicated. In addition to being a determinant of the global epidemic, 
UNAIDS also argues that HIV-related stigma is one of the greatest barriers 
to the provision of treatment, care, and support to people living with 
HIV/AIDS (PLWHA). A typical description of this relationship is as follows: 
"Stigma and discrimination both stymie efforts to control the global 
epidemic and create an ideal climate for further growth. Together, they 
constitute one of the greatest barriers to preventing further infections, 
providing adequate care, support and treatment, and alleviating the 
epidemic's impact" [19].

The two claims are semantically and epidemiologically bound together. The 
first claim is that stigma is a determinant of the global epidemic. The 
second is that stigma adversely affects the lives of PLWHA. The second claim 
is uncontroversial, and is supported by considerable empirical evidence 
showing that stigma exacerbates the already-heavy burden experienced by 
PLWHA. Stigma can affect areas of life as diverse as housing, employment, 
education, and most critically, access to health care [20].

Where Is the Evidence That Stigma Fuels the Epidemic?

The first claim, linking HIV stigma and the global epidemic, is also treated 
as a fact-so notorious that it has become the basis for considerable policy 
and program development [16,21]. The actual evidence base, however, is 
almost nonexistent. In spite of this lack of evidence, the idea is repeated 
like a shibboleth [21-31]. With each repetition, its veracity appears to 
increase.

The argument for the link between HIV stigma and the global epidemic goes 
something like this: stigma undermines HIV prevention efforts by making a 
person afraid to engage in safe behaviour or seek testing for fear that 
these acts would themselves raise suspicion in the minds of others about the 
person's HIV sero-status [21]. Stigma leads to fear, fear leads to unsafe 
behaviour, and unsafe behaviour leads to the spread of the infection in the 
population (Figure 1).

Figure 1. The Argument for the Link between the Stigma of HIV and the Global 
HIV Epidemic
 http://tinyurl.com/y6qfn9

This line of reasoning about the relationship between stigma and the spread 
of HIV in the population is flawed in two ways. The first flaw is that it 
ignores the nonlinear dynamics of infectious disease transmission in 
populations [32-34]. HIV spreads by exploiting a few human behaviours, 
predominantly sexual intercourse and injection-drug use. Both of these 
behaviours are associated with a high degree of cultural specificity with 
respect to who engages in them, who they engage with, and the periods of 
their lives during which they engage-these are the factors that largely 
determine the spread of the infection. For this reason, the virus generally 
takes hold in subpopulations first, such as injection-drug users, commercial 
sex workers, men who have sex with men, and mobile populations [35,36].

Even if stigma does increase the risk of infection within high-risk groups, 
it could simultaneously slow the spread of infection from those groups to 
the general population. Objectionable as it may be to see a lethal infection 
spread in any part of a population, uncontained spread within a part of the 
population is better than uncontained spread within the whole population. It 
is plausible that a social control mechanism, such as stigma, could reduce 
opportunities for contact between high- and low-risk groups. All other 
things being equal, under these conditions the spread of the virus across 
the whole population would be slowed. We are thus suggesting an alternative 
hypothesis to the UNAIDS position.

The second problem with the claimed relationship between stigma and the 
spread of HIV is a measurement issue. To establish a causal link between HIV 
stigma and epidemic progression requires longitudinal data on rates of 
infection and levels of HIV stigma. Weaker, but nonetheless potentially 
persuasive, evidence could also be found in an observed correlation between 
levels of HIV-related stigma and rates of HIV infection across contexts-such 
as between countries. Currently, no such evidence is available.

Blaming stigma gives too much weight to individual behavioural change as the 
answer to HIV prevention.

The best supporting evidence comes out of studies such as those recently 
undertaken in China with mobile populations in which an association was 
found between increased levels of stigmatising attitudes toward PLWHA and a 
reported unwillingness to engage in harm-reduction activities [37,38]. 
Unfortunately, such studies tend to focus only on the spread of infection 
within particular high-risk subpopulations, and cannot address the question 
of interaction between populations. Solving the measurement problem 
requires, among other things, good estimates of the rate of new infections 
in populations and subpopulations, and a clear understanding of what "HIV 
stigma" really means.

Data on new HIV infections are sparse. Indeed, UNAIDS itself only reports 
country estimates of prevalence [15]. Without data on new infections, 
however, it is hard to establish the correctness of the UNAIDS position. 
Even where incidence data are available, they often focus on subpopulations 
rather than whole populations, and this again misses the point about the 
possible relationship between a social process such as stigmatisation and 
the spread of HIV in the population [39,40].
It is also difficult to know what exactly is meant, for measurement or 
intervention purposes, by "HIV stigma" or "HIV-related stigma". It is not a 
singular entity. HIV stigma is bound up with pre-existing stigmatising 
attributes including commercial sex work and injection-drug use [41]. The 
stigma of one is conflated with the stigma of the others [11]. Separating 
the effect of pre-existing stigmas from the stigma of the disease alone is 
important for the development of interventions and for the identification of 
priorities.

In writing this Essay, our aim is neither to diminish the suffering of PLWHA 
in the eyes of the reader nor to advocate for the use of HIV stigma as a 
mechanism to control the spread of the epidemic. Our objective was to draw 
attention to the lack of evidence supporting the current dominant view on 
the relationship between stigma and the global spread of HIV. As a driver of 
policy, the current position closes down potentially important lines of 
scientific inquiry. Stigma and epidemic control may in fact be two separate 
problems, but the current position conflates them and halts any 
consideration of potentially fruitful ways of dealing with them as 
individual issues.

Conclusion

Blaming stigma gives too much weight to individual behavioural change as the 
answer to HIV prevention: stigmatise PLWHA less and engage in harm-reduction 
behaviours more. It neglects the more-difficult issues relating to the 
manner in which HIV spreads in populations, the social vulnerabilities it 
exploits, and the ways in which individuals within subpopulations interact 
with each other and with members of other subpopulations.

There are some core scientific issues that need to be overcome if the 
question of the relationship between HIV stigma and the spread of HIV is to 
be resolved. Whether HIV stigma is one of the greatest barriers to the 
global control of the epidemic remains a hypothesis. The scientific 
investigation of it demands significant effort, and should be a matter of 
priority.

- - -

Daniel D. Reidpath is at the Centre for Public Health Research, Brunel 
University, Uxbridge, United Kingdom. Kit Yee Chan is at the School of 
Health and Social Development, Deakin University, Geelong, Victoria, 
Australia.

Funding: The authors received no specific funding for this article.
Competing Interests: The authors have declared that no competing interests 
exist.
Published: October 31, 2006
DOI: 10.1371/journal.pmed.0030435
Copyright: © 2006 Reidpath and Chan. This is an open-access article 
distributed under the terms of the Creative Commons Attribution License, 
which permits unrestricted use, distribution, and reproduction in any 
medium, provided the original author and source are credited.
Abbreviations: PLWHA, people living with HIV/AIDS; UNAIDS, Joint United 
Nations Programme on HIV/AIDS; WHO, World Health Organization
Citation: Reidpath DD, Chan KY (2006) HIV, Stigma, and Rates of Infection: A 
Rumour without Evidence. PLoS Med 3(10): e435
* To whom correspondence should be addressed. E-mail: 
daniel.reidpath@brunel.ac.uk

References

Please go to article online for references. Not included here to save space
http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371%2Fjournal.pmed.0030435