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[ARUSHA, 8 December 2009] - Although he was born with the virus, it was only 15 years after his birth that Robert* and his family discovered he was HIV-positive.
His mother, Flavia Kyomukama, was devastated by the discovery.
Kyomukama is also HIV-positive and she immediately put her teenage son on anti-retroviral therapy.
But Robert, who is now 19-years-old, stopped taking the life-saving drugs two years ago.
He lost interest in life after facing stigmatisation at school. It was not just the kids who made his life difficult, but also the school nurse and the deputy head teacher.
His classmates questioned why he was always sick and regularly swallowing tablets. Some school mates even started avoiding him.
"The school nurse used to ask him what kind of medicine he was taking and questioning why he was always sick because he was always at the school dispensary.
"And then the deputy head teacher said he was pretending to be sick yet he actually was. That is what made him decide to leave boarding school," says Kyomugisha, the national coordinator for the Global Coalition of Women against HIV/ AIDS, a local non-governmental organisation in Uganda.
Her son then dropped out of school altogether. He could not bear the stigma and even stopped taking his anti-retrovirals (ARVs) because he was tired of the side effects, she explains.
Robert’s story is just one of many that children living with HIV face in their communities including schools in the East African Community (EAC) countries of Uganda, Kenya, Tanzania, Burundi, and Rwanda.
It was some of the information presented at a regional consultative meeting on East Africa HIV law held in Arusha. Discussions centred on the development of a law to guide the region’s response to HIV and AIDS.
The Eastern African National Networks of AIDS Service Organisations contracted consultancy group, Africa Vision Integrated Strategies, to study the existing HIV laws within the region and advise on a draft bill for the new law.
Feedback on consultations with several communities found that the stigmatisation of HIV-positive school goers often affects their ability to complete their studies.
Children are faced with stigma and discrimination and there are no laws or policies to protect them in the region. There are even reports of head teachers rejecting pupils who are HIV-positive.
"When children are stigmatised, they don’t want to go to school. Even if you force them to go - and they don’t like the teacher because the teacher said something that affected them or the person that they sit with stigmatised or insulted them because they lost their mother or father - they will not concentrate in class and it will affect their performance and retention in school," Kyomukama says.
She says more awareness about HIV and AIDS is needed in schools. "There should be increased access to services and where services are not available, government needs to provide it. There should also be awareness in our educational institutions and carers."
The EAC countries are signatories to several international agreements on HIV and AIDS-related discrimination including the Universal Declaration on Human Rights and Convention on the Rights of the Child. At national level, countries also have provisions on the rights of the child.
However, human rights gaps in relation to children and HIV still exist, including the right to protection from discrimination. HIV and AIDS activists are now calling for government intervention to protect children from stigma and discrimination.
Jeremiah Nyegenye, who is part of the group compiling the new law, says the team investigated how the EAC faired in terms of HIV-related discrimination. "Broadly we would it is unsatisfactory. None of the jurisdictions have what we call an entirely comprehensive law."
He says even in countries that had provisions for HIV-positive children, stigma still continues. "Despite the provisions there is discrimination in schools."
Kyomukama says the issue of HIV-positive children is a critical one that should be legislated.
"In some health centres we do not even have ARV dosages for children. Sometimes they have to split an adult’s dose and that is not accurate. We don’t even have personnel trained in handling children living with HIV. Paediatric counsellors and services are limited. There is need to give it the attention it deserves," she says.
Allan Achesa Maleche of Africa Vision Integrated Strategies concurs.
"It is important to make specific provisions for children when legislating on HIV-related issues. This is fundamental as children’s issues raise special concerns as compared to those of adults."
It is thus imperative to have specific clauses that directly address the human rights concerns of children in the context of HIV and AIDS.
"The principles of the best interest of the child and non discrimination must be taken into account," Maleche says.
*Not his real name.
Further information
- CRIN: Briefing on discrimination and HIV and AIDS
- General Comment 3: HIV/AIDS and the rights of the child
- CRIN issues: sexuality
- Visit CRIN's new toolkit on children and discrimination
- HIV-infected Chinese children struggle with stigma (1 December 2009)