New Vision (Kampala) - September 9, 2008
Fred Ouma

"My parents died while I was still very young and I cannot really remember them much. I only see them in photos. I have been brought up by my maternal aunt and her husband, whom I take as my parents," she says, weeping.

"When I went to boarding school in Primary Six, there was a lot of stigma and discrimination in the school, especially by the matron and some children who made life hard for me. I remember someone confronting me, asking me if it was true that I had HIV," said the 17-year old girl.

Namukasa, speaking on behalf of 109 children who attended the recently concluded second annual national paediatric HIV/AIDS conference at the Imperial Royale Hotel in Kampala, appealed to the Government to set laws to guard against discrimination, and assist them live a happy life with the virus other than leaving them in the hands of relatives, some of whom neglect them or have no means to cater for them.

She said before she knew her HIV status, she used to be very sick with skin rashes, fever, coughs and diarrhoea, which were on and off.

"In 2000 when I was nine years old, I was tested and told that I was HIV-positive. By the time I turned 10, I had had seven admissions for severe pneumonia. I also had severe TB and meningitis and I was referred to Joint Clinic Research Centre for further treatment," she said, leaving many participants teary.

At 10 years old in 2001, Namukasa was started on antiretroviral drugs (ARVs). Her CD4 count was 35 instead of 500. She then had to battle stigma and taking ARVs, a thing she says was not easy.

"I was able to go back to school but adhering to taking medication was rather hard because of the fear to be seen taking drugs. Timing was also difficult. I could not share with anyone," she said.

During the second term, she fell ill as she developed treatment failure, and she had to leave the boarding section. The changed her drugs to Kaletra and Truvade. She was taking eight tablets a day, including Septrin. They were very difficult to swallow, she says.

"Currently, I am taking four to five tablets and they are fairly easier to take. I have also improved greatly with my CD4 count, which has risen to 500. This is the greatest birthday present I have ever received," she told the participants.

Namukasa is a member of Ariel Children's Club, a support group for children infected by HIV/AIDS.

She says the club has helped her greatly in coping with many challenges, especially in the areas of stigma and adherence.

"Before I joined the club, apart from other people stigmatising me, I also used to have a lot of self-stigma because of what I had gone through. But in the club, we learn many things, including advocacy for better care and treatment," Namukasa says.

She has taken to helping peers and other children to cope with their HIV status. She uses her personal experience to teach them on adherence and conduct seminars to help other children.

During the conference, the children also asked the Government to involve them in the formation of policies targeting children, since many of the people and organisations that claim to care for them only look for personal gain, other than addressing issues affecting children.

The HIV/AIDS pandemic continues to take its toll on Ugandan society and is a major contributing factor to children's vulnerability. The number of children newly infected with HIV globally continues to grow each year. In 2006, there were over 500,000 new infections. Currently, there are about 2.3 million HIV-positive children globally.

In Uganda, the increase in the number of children living with HIV is estimated at 110,000. About 20,000 of these are infected yearly through mother-to-child transmission.

Over a million orphans in Uganda lack support (UNAIDS 2006). Of the children living with HIV, 50,000 are in need of immediate life-saving HIV treatment. However, only 10,000 access this essential intervention.

According to Dr. Phulippa Mukasa, the chairperson of the paediatric ART Sub-Committee at the Ministry of Health, the biggest challenge is the high death rate of children born with the virus, if they are not given treatment.

"Three percent of the children infected through mother-to-child transmission, would die in the first year and 50% would die before they reach their second birthday," she says.

HIV-positive children who survive during this period have peculiar problems such as stigma and discrimination, being orphaned and possible loss of siblings. Such children need parental guidance.

Services provided to children orphaned by HIV/AIDS are insufficient. Children who are terminally ill or whose parents are terminally ill also suffer psychosocial distress such as depression, lack of self-esteem and confidence, anger and fear.

An estimated half of Uganda's 1.8 million orphans have lost one or both parents to HIV/AIDS. Ugandan communities have traditionally absorbed orphans within the extended family system, and one in four households fosters at least one orphan.

However, many of these extended familial caregivers are overburdened and there are growing numbers of child-headed households and an increase in child labour, street children, abandoned children and school dropouts.

Dr. Kihumuro Apuuli, the director general of the Uganda AIDS Commission, says the reduction of new infections among children should start with the prevention of mother-to-child transmission.

He regretted that 20,000 new HIV cases every year in Uganda were due to mother-to-child infection.

"We were born in an AIDS-free generation. It is our moral responsibility to ensure that our children are born and remain free from HIV/AIDS," Apuuli concludes.

* Equal treatment of children living with HIV/AIDS and not discriminating against them in terms of interaction and tasks assigned.

* Offer them support, care and love rather than sympathy

* Avoid tendencies of stigma towards the children

* There is need for teachers to ensure privacy of these children and not disclosing their status, unless they get consent from the children and in some instances parents.

* Teachers need to seize the opportunity they get to talk to all children about HIV prevention and living positively with HIV/AIDS, as well as clarifying on myths that surround HIV/AIDS

* Teachers should remember that every child has a right to education regardless of their HIV status and more children can get infected with HIV if they do so it is important that teachers support them by encouraging them to take their medication, especially those in boarding schools.

* It is important for teachers not to assign a lot of physical tasks to these children, especially if they feel weak. Besides, caning should not be encouraged in school and more so to children living with HIV/AIDS.

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