The following opinion piece by SECTION27 Senior Researcher Jonathan Berger was published on Health-E and in The Star on 11 March 2011.
For too long the debate about HIV testing and human rights has largely focused on the implications of the former for the latter: how testing has the potential to undermine rights. Given the experiences of many people living with HIV, this is understandable: many have lost – or been denied – jobs; insurance policies have been denied routinely; access to health care services has often been limited. By Jonathan Berger
But with breakthroughs in its management, HIV infection has been transformed – for those with access to care – into a chronic manageable condition. Coupled with the end of state-sponsored denialism and the scale-up of evidence-based prevention and treatment programmes, access to HIV counseling and testing (HCT) services is increasingly being viewed as a fundamental human right.
This new paradigm – which still recognizes that HIV testing services are at times provided in a manner that violates human rights – sees knowledge of an HIV-positive status as the gateway to appropriate care. Without such knowledge, people with HIV are more likely to access treatment too late. Delaying the initiation of treatment – when medically indicated – means ill health and reduced life expectancy.
According to the 2009 National Antenatal Sentinel HIV and Syphilis Prevalence Survey, the HIV prevalence amongst those aged 15 to 24 remained unchanged from the 2008 estimate of 21.7%. The same survey recorded a slight decrease in prevalence among young women aged 15 to 19 years – from 14.1% in 2008 to 13.7% in 2009. Looked at any way, young people are at high risk for acquiring HIV.
It is in this context that SECTION27 welcomes plans to extend the HCT campaign to children aged 12 years and older. In doing so, however, we are mindful of history and call for the expansion to be done in a measured, phased manner after thorough and consultative planning. But while we recognize that the need for expanded access to such services is palpable, we also understand the dangers of rushed action.
In a recent press release, we joined our partners in recognizing the challenges of conducting HIV testing in schools. We noted that most schools in our country do not have a proper life-skills programme, that problems of bullying, sexual abuse and substance abuse are widely reported, and that schools may pose serious challenges to privacy, confidentiality and voluntary participation.
In particular, we called for the following issues to be incorporated into the expanded HCT campaign amongst teens:
§ A thorough pre-testing preparation phase at school and community level that deals with HIV in the context of sexual and reproductive health rights;
§ Planning, implementation and monitoring that are in children’s best interests, which fully and meaningfully protect and advance their rights to health, information, participation and care and support;
§ Post-test monitoring of stigma, discrimination, mental health and social concerns at sites;
§ Rapidly strengthening and monitoring the life skills curriculum in schools, including effective training for educators themselves;
§ Paying proper attention to HIV prevention – in tandem with testing – that includes ensuring the availability of effective and ongoing sex education programmes and condoms; and
§ Seeking support from parents in a manner that recognises that the decision to test – in the context of appropriate counselling, support and information – must remain in the hands of the young people themselves.
We urged the South African National AIDS Council – which includes the departments of health, basic education, social development and public service and administration – to ensure that these requirements are met, and that a multi-dimensional, inter-departmental approach to this campaign is adopted to achieve maximum benefits for, and advance the struggle against the spread of HIV amongst, teens.
It is thus of great concern that current thinking amongst those responsible for developing the testing protocol is for consent forms first to be sent to parents, guardians or caregivers before consent is sought and obtained from children themselves. Not only does this have the potential to undermine the programme, but it is also against the law.
The Children’s Act of 2005 makes it plain that a child who is 12 or older is ordinarily able to consent to an HIV test on his or her own. A child under 12 is able to provide consent if he or she is of “sufficient maturity to understand the benefits, risks and social implications of such a test”. Consent from a parent, guardian or caregiver is expressly required only if a child under 12 years lacks the required level of maturity.
Leaving the right to consent in the hands of children themselves is underpinned by good public policy. If parents, guardians and caregivers are required to give consent, there is a danger that children may either be denied the right to test or may be placed under undue pressure to reveal their test results. While it would be helpful to secure support for children who test positive, this cannot always be guaranteed.
The right to consent independently means that a child alone has the right to bring the fact of testing to his or her parents’, guardians’ or caregivers’ attention. But this does not mean that they have no role to play – they need to know about the services that are being provided at their children’s schools. This place an obligation on the state to ensure that the campaign is properly explained, promoted and publicized.
With this in mind, we welcome the Department of Basic Education’s Draft Integrated Strategy on HIV and AIDS, 2012 – 2016. This document “will be refined and finalized through a consultative process with key stakeholders at national, provincial, district and school level”. All schools – including learners, educators and parents – need to participate actively in this process.
Expanding the HCT campaign into schools is a bold, courageous move. It deserves our support. But it also requires our vigilance – and our insistence that it be developed and implemented in a manner that is supportive of children’s rights to dignity, autonomy and access to health care services. Anything less will undermine the campaign, and place children at risk.
Jonathan Berger is a Senior researcher, SECTION27