Children Need to Know Their HIV Status Too!

We at the CDC-South Africa office are proud to be associated with the recent release of South Africa’s first national guidelines on counseling and testing children for HIV. Developed by the Human Sciences Research Council (HSRC) of South Africa with support from CDC-South Africa and the Bill and Melinda Gates Foundation, this toolkit fills a very important gap in the response to the HIV epidemic.     

A forgotten group
With more than 5.6 million infected people, South Africa remains the country with the largest HIV epidemic in the world.  Although South Africa has successfully managed to reduce its mother-to-child HIV transmission rate to less than 3% nationally, children younger than 15 years are still a neglected group.  According to the South African National Department of Health, an estimated 32,940 children younger than 15 years are living with HIV and AIDS but are not on treatment.

Challenges to protecting children’s’ rights
Today we all recognize that HIV counseling and testing is one of the most important entry points for HIV-related treatment, care, support, and prevention. The South African government definitely has led the way to ensure that most of its citizens know their HIV status. In 2010, the government launched a massive campaign to test 15 million people for HIV in 12 months. More than 13 million people were reached, and of those, more than 400,000 people were eligible for antiretroviral treatment.  This represented one of the largest HIV counseling and testing campaigns in the world,  led by the National Department of Health with the support of all their stakeholders, including CDC and PEPFAR. HIV counseling and testing is always a sensitive topic, but children were approached with even more caution in light of  special concerns related to this group: could their legal, ethical, and human rights be protected?

Balancing the child’s best interest and their rights is often difficult, and getting informed consent from a child,  parent, or caregiver can be tricky. According to South African law, a child aged 12 years or older can get tested without parental or guardian consent, providing that testing is in the child’s best interests, and that they have been informed and show the cognitive and emotional maturity to give consent. Cognitive and emotional maturity include knowledge, understanding, and appreciation of the risks and benefits of HIV testing. These qualities can be difficult to assess, particularly by overburdened health workers who may be unsure how to deal with such sensitive issues. In addition, caregivers or parents may not be aware of their  rights or may not know where to go to ask for an HIV test if they suspect their children are infected.

Comprehensive toolkit addresses issues
HSRC’s new toolkit offers a solution to these challenges and was developed with the child in mind. Dr. Heidi van Rooyen, HSRC project team leader and research director, explains: “These guidelines explore in simple and practical terms the psychosocial implications as well as the legal and policy obligations relating to HIV counseling and testing of children. The tools describe what practitioners can do to ensure that HIV testing of children takes place in a way that protects and promotes their rights and is conducted in their best interests.” Because the tools are organized by age group—ranging from infancy and early childhood to adolescence—it supports a more targeted and focused approach by health providers for the needs of the particular child. 

Nurse Lucia Thomas, who works in the antiretroviral clinic of a local hospital, also has praise for the new toolkit. “I found the tools very useful and reader-friendly. There was a lot of confusion, especially on the legal front when it comes to testing a child for HIV. As health practitioners we have been waiting for something of this kind,” said Thomas.

An important step
Ensuring that children are tested and that they and their parents or guardians know their HIV status is critical for reaching the country’s goal of zero new infections and zero preventable deaths due to HIV. It also plays another important role: when correctly implemented, counseling and testing of all people helps reduce stigma and discrimination among people infected with HIV.

Toolkit availability
All the tools can be downloaded from the following links:

• Trainers’ Manual  
• Participants’ Manual  
• Legal Guidelines for HIV Testing of Children
• HIV counselling and testing of children – implementation guidelines