Children have the right to age-appropriate information about their HIV status and should not be the last to find out that they are HIV-positive, Human Rights Watch said on World AIDS Day, December 1. Human Rights Watch described its research in Kenya about the subject and called on the Kenyan government to provide guidance to health workers and parents on disclosure, which could start from the age of 6, taking into account the child's maturity and the specific clinical and social context. Governments around the world need to create sound policies on supportive ways to disclose HIV status to children and adolescents as more children worldwide are tested for HIV and have access to anti-retroviral treatment (ART), Human Rights Watch said. “Parents, caregivers, and health workers who avoid telling children about their HIV status can do a lot of harm, unwittingly,” said Juliane Kippenberg, senior children's rights researcher at Human Rights Watch. “They can shatter a child's emotional and physical health and carry stigma about HIV to the next generation.” Human Rights Watch research in Kenya shows the disastrous effects of poor disclosure policies. Children who do not know they are HIV-positive may be less likely to take their medication regularly, which can lead to drug resistance and death. Children who belatedly find out that they are HIV-infected may be more likely to internalize stigma and feel betrayed by those who hide their status. If adults withhold such important information for years, children may sense a problem and live in great anxiety. Some children are confronted with the news of their illness through public comments from others, and experience trauma and depression. Approximately 180,000 children in Kenya are living with HIV, and slightly more than 40,000 children are on ART. Most of these children have been infected all of their lives through mother-to-child transmission, yet parents and caregivers in Kenya often do not tell their children that they are HIV-positive until they reach adolescence. Human Rights Watch interviewed children between ages 8 and 14 who had not been told of their HIV status, as well as parents and other caregivers, health workers and counselors. Under the Convention on the Rights of the Child, children under age 18 have a right to information about their own health. But Kenya's National Guidelines for HIV Testing and Counseling leave the responsibility for disclosure with the caregiver and do not allow health workers to disclose HIV-status to a child unless a parent or guardian has given permission. The guidelines permit health workers to inform children who are pregnant, married, or sexually active. In practice, though, sexually active children do not always disclose this information to health workers, and hence are not told if they are HIV-positive. Denying older children information about their HIV status violates the child's right to information and privacy, and the child's right to voluntary, confidential HIV counseling and testing, Human Rights Watch said. It also compromises the child's ability to participate in his or her own medical care, an important part of the right to health. “Many parents are reluctant to tell their children that they are infected with HIV,” Kippenberg said. “They want to protect the child from the stigma they experience themselves, and mothers in particular may feel guilty for having infected their children or worry that their own status may become known.” Kenya should provide more support and information for parents about how to tell their children they are HIV-positive, Human Rights Watch said. HRW
