ALQ,September 2006 Edition - HIV Testing

Editorial. ..

There is an important consensus that the right to health is not just about access to services, but to services of a well defined quality and a core element of that is that services should be designed as much as possible to minimise human rights abuse, including discrimination that may actually be associated with the intervention or the service. (…) … ensuring access to HIV testing with counselling, informed consent and confidentiality is indeed well established as part of the human rights obligations of governments, [and] testing services should be designed to strive to minimise abuse and maximise benefits, including the link to treatment…
[Joanne Csete, Canadian HIV/AIDS Legal Network, August 2006]

The question of ‘access to services’, and specifically the access to HIV testing services, as well as the extent to which people are in the position to realise, participate in, and benefit from, available HIV testing services has, in the context of the global call for ‘HIV testing scale-up’, become the centre of debates. While the introduction of ‘routine testing for HIV’ has emerged as the proposed means to scale-up HIV testing, so have numerous concerns about human rights abuses imminent to this approach of ‘opt-out- routine testing for HIV’.

Notwithstanding the need to scale-up HIV testing, it is of utmost importance to ensure both human rights requirements and public health requirements, in identifying the mechanisms of how to respond to the need of scaling-up HIV testing. However, the current debate seems to be rather polarised in that the human rights requirements are seen to be contradictory to the public health requirements.

It is within this context of ‘scaling-up HIV testing’ and the emerging trend to change HIV testing models that this edition of the ALQ focuses on HIV testing. The various articles in this issue analyse different HIV testing models and approaches from a human rights perspective, and examine the extent to which the global call to scale up HIV testing, through the model of ‘provider-initiated opt-out routine testing’, creates an environment in which the fundamental human right to make an informed choice whether or not to test for HIV can be upheld, respected and protected.

The implications of the move towards ‘opt-out routine HIV testing’ and its impact on human rights principles of informed consent, confidentiality and non-discrimination; concern about changing HIV testing strategies; arguments for and against voluntary, mandatory and routine HIV testing; human rights issues emerging after the introduction of the ‘opt-out routine HIV testing’ programme in Botswana; as well as the theory of HIV testing as a preventative measure are some of the issues explored in this edition. This issue is also introducing experiences of HIV testing policy and reality in Nigeria; ‘making a point’ about prisoners’ access to ARVs, and providing comments on the criminalisation of HIV transmission, on HIV testing and rights of women living with HIV and AIDS, as well as on the need to scale up VCT.

In this edition, Brandis Anderson examines various HIV testing protocols as to the extent to which HIV testing models recognise and protect human rights. Exploring the numerous arguments of the proponents and opponents of voluntary, mandatory and routine HIV testing, she argues that of the HIV testing models available, voluntary counselling and testing is the one most firmly grounded in a human rights framework and, thus, the HIV testing model that should be promoted as an integral part of the response to the HIV pandemic.

The implications of the move towards provider-initiated opt-out HIV testing and away from voluntary counselling and testing are discussed by Beri Hull. Examining various realities of HIV testing, gendered imbalances and existing stigma and discrimination, she argues that since many people in many contexts are not equipped to ‘opt-out’, routine opt-out HIV testing is not a real choice for many people; and fails to take into account that people should get tested for HIV only as and when they are ready, prepared and willing to be tested for HIV.

Responding to the global call to scale-up of HIV testing, Sofia Ruskin raises concerns about some of the changes to HIV testing strategies. She explores issues of language, motivation, implementation and content of HIV testing strategies, and argues, that while there is a clear need to scale-up HIV testing and to move towards the routine offer of HIV testing, for HIV testing strategies to be effective, policies and practices need to be sound in both public health and human rights terms.

Some of the critical human rights issues that emerged from introducing provider-initiated, opt-out routine HIV testing in Botswana are introduced by Christine Stegling. Reflecting on the adopted policy of HIV testing based on an ‘opt-out approach’, which does not require the patient’s expressed informed consent, and looking at the societal context in which HIV testing is taking place, she argues that there is a need to re-visit the routine opt-out HIV testing programmes in Botswana, since these programmes do not protect or respect the fundamental human right to make an informed choice.

Recognising the need to scale-up HIV testing, Anand Grover raises the question as to whether or not opt-out routine testing for HIV is the best option to achieve this. He analyses the opt-out routine HIV testing strategy as to its impact on principles of consent, pre-test counselling and the assurance of non-discrimination, and argues, that the strategy is flawed, since it fails to recognise and protect the individual’s rights to pre-test counselling and informed HIV testing, and lacks the guarantee of confidentiality and non-discrimination.

Emma Harvey raises the question as to whether or not HIV testing can be seen as an effective prevention measure. Examining some of the evidence for and against the theory that voluntary counselling and testing is an effective HIV prevention measure, she argues that as long as stigma and discrimination poses a barrier to HIV testing, the potential that HIV testing contributes to behavioural change and thus, HIV prevention, remains rather limited and nothing more than a theory.

The realities of HIV testing in Nigeria are introduced by Busari Olusegun. He discusses the conditions of the Nigerian healthcare sector and argues that as long as there is a general lack of knowledge on patients’ rights and a failure to provide workplace safety for people working in the health sector, voluntary counselling and testing will only exist in the realm of policy, since the reality is one of being between patients’ rights and doctors’ safety.

Looking at the recent Court judgement against Durban Westville Correctional Centre, Lukas Muntingh and Christopher Mbazira are ‘making a point’ about prisoners’ right of access to anti-retroviral treatment. The article examines the facts, arguments and judgement in the case and argues that the case reinforces the jurisprudence of socio-economic rights in South Africa, in that it is a pronounced expression of prisoners’ right of access to healthcare and the duty of the state to provide such access.

While there seems to be a common understanding of the need to scale up HIV testing and the importance for people to be aware of their HIV status, there also seems to be an equally strong concern about the methods adopted to achieve a scale up in HIV testing and the seemingly inevitable human rights violations, if ‘opt-out routine testing’ is to become the newly adopted approach to HIV testing. The underlying question raised seems to be whether or not the need to scale up HIV testing does, and can, in any way, justify sacrificing fundamental human rights principles of informed consent, security of a person, confidentiality and non-discrimination.

The recurring answer seems to be that human rights principles are to be the foundation of any HIV testing model, especially considering the societal context in which HIV testing takes place – one which is characterised by gendered inequalities, imbalances and injustices, as well as prevailing stigma, discrimination and the violation of rights based on, and in the context of, HIV and AIDS – a societal context, in which the ‘right to op-out’ seems to be a privilege for a few.

However, there also seems to be the need to acknowledge that voluntary counselling and testing, as the promoted HIV testing model within a human rights framework, has not achieved its goal – considering statistics indicating that more that 80% of people living with HIV are unaware of their HIV status – with a number of reasons recurrently provided for the low up-take in HIV testing services, including stigma and discrimination, lack of access to testing services and lack of awareness. Thus, while there is a strong concern about the inevitable human rights violations in the context of ‘opt-out routine testing for HIV’, there is also the concern about existing human rights violations, which seem to be part of, and a barrier to, the access to voluntary counselling and testing for HIV.

If we are to agree that it is important to be knowledgeable of one’s HIV status so as to access HIV treatment, care and support services, then we need to examine the availability and quality of these services, to be in the position to evidence the created causality. This would also include examining the extent to which available resources are in the position to provide for the ‘scaled-up’ need in HIV testing services, as well as treatment, care and support services.

If we are further to agree that there is benefit to scale-up HIV testing, we need to ask ourselves who is to benefit – the individual, who may not have been prepared to test for HIV, or government who need to have accurate statistics to prepare an adequate response to the HIV and AIDS pandemics. Similarly, we may have to analyse the factors determining the ‘need’ for scaling-up HIV testing – is it the many people who want to be aware of their HIV status and demand ‘scaled-up’ HIV testing services, or is it the many policies who demand HIV testing, since people ‘ought to be/should be’ aware of their HIV status?

And if we are to find the answers to these questions within the human rights framework, then it is the fundamental human rights principles of a person’s informed consent – provided free of fear of harm, free of coercion and imposition, free of ‘moral obligations’ – that is to form the basis for these answers.

There is also the argument of ‘the right to opt-out’. This argument is often used by proponents of the ‘routine HIV testing’ model, to not only justify the very same, but also to justify that ‘routine testing’ for HIV is not as an abuse of human rights, since people are not tested compulsory, but instead given the ‘choice to opt-out’. However, if we were to agree that the ‘right to opt-out’ does, to an extent, adheres to the human rights principle of informed consent, then we have to carefully examine the extent to which people are in the position to realise the ‘right to opt-out’.

Recognising the different and often unequal conditions and contexts in which people access healthcare services, and thus, provider-initiated opt-out HIV testing services, demands acknowledging that the very same different and often unequal conditions and contexts are the factors determining the extent to which people are in the position to access, realise and benefit from the ‘right to opt-out’.

Thus, the question does not seem to be whether or not there is a ‘right to opt-out’, but whether or not people are ‘equipped’ to claim and enjoy this right; and whether or not people are equally ‘equipped’ to claim and enjoy this right. And, as with any right, reality is not defined by the right itself, but instead by the societal context in which the right is to be accessed and realised. And so, as with any right, the ‘right to opt-out’ is a right for the privileged few, who are ‘informed, equipped and empowered to opt-out’.

But even if we are to live in a society in which everyone is equally informed, equipped and empowered to ‘opt-out’, we still may have to ask the question as to why people choose to ‘opt-out’ from HIV testing. Is it because people choose to ‘opt-out’ from the benefits of HIV testing; or is it because people perceive themselves at low risk of HIV infection; or is it because people choose to ‘opt-out’ for fear of an HIV positive test result and the fear of subsequent stigma, discrimination and abuse?

While the reasons for a person to ‘choose to opt-out’ may be many and differ in various conditions and contexts, the underlying question as to whether or not the societal context of HIV testing characterises, what would be called, an ‘enabling environment’ to freely claim and enjoy the ‘the right to choose to opt-out’ remains. And in the societal context of gendered inequalities and prevailing discriminatory attitudes, beliefs and practices based on one’s sex, gender, sexual orientation and/or HIV status, the answer to this question seems to be an easy one – no!

Thus, as long as the societal context in which HIV testing takes place is filled with human rights violations based on, and in the context of, HIV and AIDS, the question is not one of the adequate HIV testing model, but one of creating an enabling environment for HIV testing. And this enabling environment cannot be based on the ‘right to opt-out’ of HIV testing, irrespective of whether or not stigma, discrimination and the violation of rights prevail, but based on the ‘right to opt-in’, the ‘right to informed consent’ to HIV testing, because people are ‘willing, ready and prepared’ to test for HIV, ‘willing, ready and prepared’ to test positive for HIV.

Until reality provides for the ‘freedom to opt-in’ to HIV testing, we will have many more heated debates about voluntary counselling and testing, as the human rights approach to HIV testing, versus provider-initiated opt-out routine HIV testing, as the imminent human rights abuse; about the ‘right to informed consent’ versus ‘the right to opt-out’. Unfortunately, in the meantime, there will be many more people ‘choosing’ to ‘opt-out’ of the benefits of HIV testing – and, in many cases, even against better knowledge – due to pervasive stigma and discrimination, due to our seemingly reluctance and failure to engage in equally heated debates about the means of addressing stigma and discrimination, which after all is the recognised barrier to HIV testing.

A global policy call to scale-up HIV testing does not and cannot carry the potential to address, nor respond to, the reality of prevailing stigma and discrimination based on, and in the context of, HIV and AIDS, since policy cannot transform the ‘right to know one’s HIV status’ to the ‘freedom to know one’s HIV status’. However, challenging and transforming the societal context in which HIV testing takes place does indeed carry the potential to scale-up HIV testing, carries the potential to respond to the need of scaling-up HIV testing within a human rights framework – in that HIV testing services are designed ‘to minimise abuse and maximise benefits’, and ‘the right to opt-out’ becomes ‘the freedom to opt-in’...Johanna Kehler