Measuring HIV-based discrimination and human rights abuses: why bother?admin
Measuring HIV-based discrimination and human rights abuses: why bother?
HIV Australia | Vol. 13 No. 1 | April 2015
By Sally Cameron
There is no shortage of HIV policy documents outlining the ‘centrality’ of human rights to an effective HIV response, including the United Nations’ (UN) 2011 Political Declaration on HIV and AIDS,2 UNAIDS’ 2011–2015 strategy, ‘Getting to Zero’3 and the 2012 Global Commission on HIV and the Law report.4
Domestically, Australia’s National HIV Strategy names eliminating ‘the negative impact of stigma, discrimination, and legal and human rights issues on people’s health’ as one of six objectives.5Further, it outlines four priority actions:6
- Eliminate stigma and discrimination in community and healthcare settings and empower priority populations.
- Remove institutional, regulatory and systems barriers to equality of care for people infected and affected by HIV in the health sector.
- Work towards addressing legal barriers to evidence-based prevention strategies across jurisdictions.
- Establish a dialogue between health and other sectors aimed at reducing stigma and discrimination against HIV-infected and affected individuals and communities.
For the most part, the articulated actions identify work that needs to be done to improve Australia’s HIV response, although they are weakened by anomalous moments of restraint, particularly the oddly constructed third action to ‘work towards addressing’ legal barriers.
Surely if stigma and discrimination is to be ‘eliminated’ in community and health care settings, then legal barriers to evidence based strategies can at least be ‘addressed’.
Despite the many articulations of a commitment to human rights, progress is notoriously slow. This is due in part to the absence of specific tangible goals and associated measurement of their success.
Such is the case with Australia’s National HIV Strategy. Unlike the other five objectives outlined in the National HIV Strategy, the objective on human rights lacks an ‘indicator’.
That gap has not gone unnoticed, with the National Strategy acknowledging that ‘the lack of a nationally agreed indicator for measuring progress in reducing the health impact of stigma, discrimination and legal and human rights [is] an important gap’.7
It calls for ‘a focused effort during the life of this Strategy to make headway on this important issue’.8 A ‘focused effort’ sounds promising. ‘Make headway’, less so.
Australian indicators measuring progress against Strategy priority actions are yet to be developed – an issue that requires urgent attention before the next National Strategy rolls around.
The lack of human rights, stigma and discrimination indicators in the Strategy undermines advocacy … and progress. Just what is it we’re trying to achieve? Are things really that bad? And how can we know whether things are improving?
Without indicators, success cannot be ‘demonstrated’ but neither can failure, so there is no political urgency to fund programs or campaigns, or to generate the collective intellectual effort to come up with a plan … a really good plan.
Political will to address human rights abuses, stigma and discrimination is lost amongst the urgency to meet highly ambitious targets on testing and treatment (which, as we know, rely on a human rights-based ‘enabling environment’).
A common assertion is that human rights are difficult to measure. While it may be difficult, it is certainly not impossible.
For example, UNAIDS Guidance Note on prosecutions for cases of HIV non-disclosure, HIV exposure and transmission9 clearly states that criminal laws should only be applied to cases of intentional transmission, i.e. where a person knows his or her HIV-positive status, acts with the intention to transmit HIV, and does in fact transmit it.
It also states that laws applied in these rare occasions should be general and not HIV specific.
What is needed then is a commitment to monitor and report the number of prosecutions each year exceeding those limits.
Is that really so complicated? No. But agreeing to count and report on such prosecutions would imply that they are problematic and that therefore, something needs to be done to stop such prosecutions from proceeding: an assertion no government agency has been willing to make.
Using its limited resources, GNP+ (The Global Network of People living with HIV) makes considerable effort to collect international information on HIV prosecution laws and cases through its Global Criminalisation Scan,10 but without a formal UN requirement for countries to collect such data, the Scan remains limited.
Some effort is made by Australian non-government organisations (NGOs) to keep a tally of Australian cases but no formal collection of data is recorded or reported.
As with ‘criminalisation’, reporting on HIV-related stigma and discrimination is stymied by lack of political will, the absence of formal reporting mechanisms, and a lack of consensus on what such mechanisms should look like.
HIV policy makers remain concerned about the feasibility of measuring HIV-related stigma and discrimination in a ‘meaningful way’. Granted there are methodological tensions: should measurements be quantitative (‘how many?’) or qualitative (‘what was it like?’)?
Do we count the number of acts of discrimination or provide a scale to estimate the severity of the discrimination? Should we count the number of times people act in a discriminatory way or the perception of persons who believe they’ve been discriminated against?
Are samples (no matter how large) really representative? And how do we factor in notions of resilience: a discriminatory action that is hurtful or harmful to one person may be something another person is able to brush off.
There are in fact numerous examples of stigma and discrimination indicators that have been used in previous research. Notable among them is the People Living with HIV Stigma Index (PLHIV Stigma Index) which aims to measure stigma and discrimination experienced by people living with HIV in national settings.
One of the strengths of the PLHIV Stigma Index has been the scale of its rollout. It has now been translated into 54 languages, and recorded the experiences of some 50,000 PLHIV in more than 50 countries (although not Australia).
Its ‘reach’ has not only forced the issue onto the agenda of recalcitrant governments around the globe, but has facilitated regional comparison (see Figures 111 and 212): the point of which is not to embarrass individual governments (they are only representative samples after all) but to ensure stigma and discrimination make it onto the agenda of regional and international meetings and strategy development.
Data driven commentary on discrimination in Australia has largely relied on the findings of the HIV Futures survey. Conducted every two to three years since 1997, it routinely attracts more than 1000 responses from people living with HIV all over Australia.
The survey has a broad focus, but also includes questions on discrimination and the environment in which that discrimination occurred.
Although not often used in this way, the staying power of the HIV Futures survey allows consideration of progress since the previous survey, but also over a long period (Figure 313, , 14, 15, 16, 17).
View graph at full size (PDF)
In 2011, the National Association of People Living With HIV Australia (NAPWHA) took a different tack, developing a detailed, peer-based social research survey to assess HIV-related stigma in Australia.
The HIV Stigma Audit Community Report provided detailed information on the experiences and effects of stigma on the lives of almost 700 people with HIV in Australia.
The Stigma Audit used scales to estimate the severity of stigma, impact on self-esteem, degrees of resilience and centrality of HIV and community attachment (Figure 418).
View graph at full size (PDF)
That design should allow future use of the stigma audit methodology to show, not only changes in frequency, but also changes in degrees of stigma.
The importance of the Stigma Audit has been recognised in the Seventh National HIV Strategy, which notes the findings ‘will inform further efforts to both address and monitor the impact of stigma and discrimination over the life of this Strategy’.19
Development of international indicators
To be fair, Australia’s recent half-hearted efforts to ‘eliminate the negative impact of stigma, discrimination, and legal and human rights issues on people’s health’20 and our amble towards human rights indicators do not rate particularly poorly by international standards.
Official indicators to measure human rights abuses, stigma and discrimination, are generally lacking from international and state-based HIV strategies and we are without a best-practice model from a comparable setting.
That absence of standardised global discrimination indicators has been officially recognised as a barrier to the scale-up of human rights interventions.21 Fortunately, that may be about to change.
In February 2015, UNAIDS circulated a ‘Zero Discrimination Target: By 2020, everyone everywhere lives a life free from HIV-related discrimination’ a draft document which represents the culmination of at least six years work. (See Table 123 – PDF)
It outlines clear programmatic targets for 2020 and a second set of targets for 2030, as well as suggested indicators to measure them. Not only can discrimination indicators be named, some of them are already being collected.
These indicators have the potential to enable consistent measurement of stigma and discrimination and the effectiveness of strategies to address them.
But to be frank, their greatest impact may be in making the simple point that HIV-related stigma and discrimination undermine HIV prevention, care and support, and governments need to do something about it.
The way forward
Across Australia, anti-discrimination laws make it unlawful to discriminate against any person with HIV or any person thought to have HIV. That is not enough. We know that people living with HIV in Australia continue to experience stigma and discrimination.
At least 54% of those surveyed for HIV Futures 7 reported discrimination,22 the most common forum being the healthcare sector. People continue to be prosecuted for failing to disclose their HIV status before sex, including cases where HIV was not transmitted.
As an HIV sector, we do not scrutinise the number or nature of HIV-related complaints to anti-discrimination agencies around Australia. Learnings from legal casework is not effectively interfaced in our broad policy work.
The proposed global discrimination targets are less about facilitating nuanced academic measurement and analysis of HIV-related stigma and more about providing an advocacy tool: a blunt tool, but a tool nonetheless to add to our current poor arsenal of anecdotal versions of grassroots agencies’ experiences, the odd conference paper and first person quotes.
Stigma and discrimination continue because of a failure to recognise the problem is systemic. Without specific strategies, and indicators to measure the success of those strategies, human rights will remain the poor relation of testing and treatment.
The issue requires urgent action by the Commonwealth: leadership on the issue and the development of a mechanism with the political clout to deliver a set of indicators applicable to the Australian HIV epidemic.
1 An effective HIV response requires human rights protections for people living with HIV, but also for all affected populations (be they defined as Key Affected Populations, Most at Risk Populations, or Priority Populations), which frequently include gay men and other men who have sex with men, people who inject drugs, and sex workers. This article, however, focuses on human rights interventions specific to improving the lives of people living with HIV.
2 Joint United Nations Programme on HIV/ AIDS (UNAIDS). (2011). Political Declaration on HIV and AIDS: Intensifying Our Efforts to Eliminate HIV and AIDS. UNAIDS, Geneva.
3 UNAIDS. (2010). Getting to zero: 2011–2015 strategy, Joint United Nations Programme on HIV/AIDS (UNAIDS). UNAIDS, Geneva.
4 The Global Commission on HIV and the Law. (2012). HIV and the Law: Risks, Rights & Health. United Nations Development Programme (UNDP), New York.
5 Australian Government Department of Health (DoH). (2014). Seventh National HIV Strategy 2014–2017. Commonwealth of Australia, Canberra.
7 ibid., 7.
8 ibid., 29.
9 UNAIDS. (2013). Ending overly broad criminalization of HIV, non-disclosure, exposure and transmission: critical scientific, medical and legal considerations. Guidance Note 2013. UNAIDS, Geneva.
11 The Global Network of People living with HIV (GNP+), the International Community of Women Living with HIV/AIDS (ICW), and the International Planned Parenthood Federation (IPPF).
12 The Global Network of People Living wIth HIV (GNP+), International Labour Organization (ILO), the PLHIV Stigma Index. (2012). Evidence Brief: Stigma and Discrimination at Work. Findings from the PLHIV Stigma Index. GNP+, Amsterdam.
13 Grierson, J., Misson, S., McDonald, K., Pitts, M., O’Brien, M. (2002). HIV Futures Three: Positive Australians on Services, Health and Well-Being. The Australian Research Centre
in Sex, Health and Society (ARCSHS), La Trobe University, Melbourne.
14 Saunders, M., Pitts, M., Grierson, J., Thorpe, R. (2004). HIV futures Four: State of the (positive) nation. ARCSHS, La Trobe University, Melbourne.
15 Grierson, J., Thorpe, R., Pitts, M. (2006). HIV Futures Five: Life as We Know It, monograph series number 60. ARCSHS, La Trobe University, Melbourne.
16 Grierson, J., Power, J., Pitts, M., Croy, S., Clement, T., Thorpe, R, McDonald, K. (2009). HIV Futures Six: Making Positive Lives Count, monograph series number 74. ARCSHS, La Trobe University, Melbourne.
17 Grierson, J., M Pitts, Koelmeyer, R. (2013). HIV Futures Seven: The Health and Wellbeing of HIV Positive People in Australia,monograph series number 88. ARCSHS, La Trobe University, Melbourne.
18 Slavin, S., Brener, L., Callander, D., de Wit, J. (2011). The HIV Stigma Audit Community Report. National Association of People Living with HIV/AIDS, National Centre in HIV Social Research, Sydney.
19 DoH. (2014). op. cit., 4.
20 DoH. (2014). op. cit., 5.
21 UNAIDS, GNP+, ICW, IPPF. (2011). People Living with HIV Stigma Index: Asia Pacific Regional Analysis 2011. UNAIDS, Geneva.
22 Unpublished data, 2013. Personal communication, Jennifer Power, ARCSHS, La Trobe University, Melbourne.
Sally Cameron is Health Promotion Officer – Policy at AFAO.