The human rights issue

Probably the most inflammatory issue surrounding the universal test-and-treat (UTT) model, however, was the one of human rights, and whether advocating too strongly for UTT might lead in some circumstances to compulsory or coercive testing.

In April 2009, a Civil Society Consultation on ART for Prevention was convened by AIDS and Rights Alliance of Southern Africa (ARASA) and attended by activists from Kenya, Tanzania, Uganda, Botswana, Mauritius, South Africa and Namibia. This meeting produced a statement which declared that they had “fundamental concerns about the assumptions on which the model is based, its shortcomings from a human rights perspective and its inattention to vulnerable and marginalised groups”.

“Given the flawed and optimistic assumptions on which the model is based,” this statement continued, “the authors’ argument that the benefits of eradicating AIDS outweigh the potential violations of individual rights that this may occasion is hard to accept.”

The authors urged that HIV testing never be performed unless it is linked to treatment provision and treatment education, that the peer counsellors who perform testing understand confidentiality and informed consent, and that those who are diagnosed HIV-positive are not subjected to ostracism within their communities.

At the International Aids Society (IAS) Conference, several meetings pitted advocates of 'the right to know' against advocates for a broader definition of civic health and safety.

Dr Julio Montaner introduced a meeting on the issue by saying that the idea of treatment as prevention was initially advanced because the Government of British Columbia was threatening to cap how much it would pay for antiretrovirals. Montaner said he had brought up the dimension of the public health good of ARV's ability to reduce infectiousness and was told to go away and research it. “We did it as an additional justification for not rationing antiretrovirals,” he said.¹

Teguest Guerma of the World Health Organization (WHO) told the meeting that she would like to tackle "the perception that the WHO only supports public health rather than human rights". She added: "We think that, along other human rights, it is a human right to know your status and to be able to access treatment.”²

However, Joseph Amon of Human Rights Watch told the meeting that 'the right to know' could not be equated with 'the right to live' in situations where testing programmes were at best inefficient. Knowing might not result in any positive outcome.³

In situations where confidentiality was violated, it could also only too easily  change from being 'the right to know' into 'the right of others to know their neighbours’ HIV status’, a demand which, coming as it did periodically from employers, healthcare workers, immigration officials, schools and others, had had to be consistently resisted from the start of the epidemic.

He added that people's right to know they had HIV was meaningless without an equal right to the health information they needed to make sense of knowing.

Michaela Clayton of Aids and Rights Alliance for southern Africa (ARASA) expanded on this theme by giving as an example, ‘Know Your Status’, the universal HIV-testing programme initiated in Lesotho.⁴ ARASA had conducted an evaluation programme. They found, amongst other things, that:

• Lay counsellors were putting people under pressure to test by, for instance, coming into their homes.
• Lay counsellors had little understanding of confidentiality and would disclose subjects’ test results to family members.
• Counsellors had little training in obtaining informed consent.
• There was little effort by counsellors to advise on strategies to remain HIV-negative.
• There was no monitoring of referrals to care and treatment.

Professor Susan Kippax, of the National Centre in HIV Social Research at the University of New South Wales in Australia, emphasised the issue of deductive disclosure.⁵ She cited one Médecins Sans Frontières (MSF) project where locals told the researcher that they always knew who was positive “because they get half an hour with the counsellor after the test, where the negative ones only get five minutes.” The researcher found that people thus deduced to have HIV were still being isolated and ostracised from communities. Joseph Amon added that people needed a variety of venues in which to test so that violations of confidentiality were less problematic.