AIDS at 26

By Agnes Asiimwe

Children born with virus in 1980s now dating

Imagine youre a young person in love and things look really promising, except for one delicate matter, you were born HIV positive and your beloved has no clue about it.

Disclosing to ones boyfriend or girlfriend – or a potential one, can be tricky because of the fear of rejection. An investigation by The Independent has revealed that many youths choose to go ahead with the relationship without disclosing and eventually quietly pass on the virus.

They delicately survived through childhood, pulled through adolescence and now they are adults. It is 26 years since the first clinical case of AIDS was reported in Uganda and today, there are children born with the virus who are as old as the disease and now have to think about dating and relationships and futures they never expected to have. Like Ms Martha Naigwe, a volunteer at Mildmay Centre Uganda. On the surface Naigwe is like any ordinary young woman, fun loving and lively.  She is studying a course in counseling, is a regular churchgoer and goes night clubbing.

Naigwe, 24, is part of the first generation of children born with HIV to reach adulthood. In the past, many of the children born with the virus did not live for long. The disease progresses so fast in infants that researchers in South Africa were recently alarmed to learn that some infants could seem fine in the morning and get sick and die by nightfall. But Naigwe has lived. Her parents both died of AIDS. She learnt of her HIV positive status at the age of 14.

At school she became a recluse. I was not so friendly, she recalls. Her immediate concern was keeping the infection a secret. But after a time in counseling this changed. In fact, on her 23rd birthday, Naigwe went public about her HIV status by telling her story in a newspaper. I got many calls from my friends [that day], who were sympathetic, telling me, we didnt know about this. I had a big smile on my face, said Naigwe because i knew that at last i was free. this is that kind of relief you get when you disclose.

In the early 80s, about 50% of infected children were dying before the age of two. During that time, there was almost no plan for children in the national AIDS response. But there are those who survived and lived even without treatment.

In 1988 the first childrens clinic, Pediatric Infectious Diseases Clinic, was set up in Mulago Hospital after doctors realised that children had been neglected on HIV treatment. The clinic is managed by Baylor College of Medicine Childrens Foundation Uganda. The clinic gave a lease of life to many children by giving them medicine and psycho-social support. Soon they became adolescents and adolescence came with its unique needs. An HIV adolescent clinic was set up in December 2003. But shortly before that, a peer support group, Mulago Teens Club was formed in August 2003.

Today, this group has 350 adolescents and young people aged 10  24 years, majority of them born with HIV. They meet at PIDC in Mulago once a month, on Saturday mornings, to interact and learn from one another. Their sessions are conducted by counselors and doctors and the group discusses issues like sex and sexuality, adherence to drugs, life skills and leadership. The club holds sports activities, arts and crafts sessions, and Hope Camps.

When they get to the age of 24, the youths are phased out of the club but are expected to join adult clinics at Mulago or elsewhere for their medication and counseling. The facilitators were puzzled by the big number of youths who were dropping out of treatment at this stage instead of joining an adult clinic. After realizing that many were dropping out, a transition clinic for young adults was opened at the Infectious Disease Institute in Mulago.

Dr Zainab Akol, the project manager, AIDS Control Programme, Ministry of Health however believes these youths may not be dropping out of treatment but have become empowered from frequent counseling and shifted to adult clinics elsewhere.

Time comes when they have to disclose their HIV status to someone they are dating or in a relationship with. Martha Naigwe, who is currently single said she would like to get someone who will understand, a person who wont stress me, someone willing to use a condom always.

At the teens club, they are encouraged to postpone their sexual but especially those aged 19-24 and those who cannot wait are strongly advised to use condoms. But despite this knowledge, exposure and straightforward messages like AIDS must stop with me, 46 girls in the club have got pregnant in the past two and half years. Those who were interviewed by PIDC said they never told their partners that they were HIV positive. For us that is a worrying situation. If they got pregnant its obvious they had unprotected sex, they are passing on the virus, said Dr Sabrina Kitaka, a pediatrician and head of the adolescent programme, Mulago Teens Club.

The increasing number of HIV positive teenage mothers under her care maybe disturbing but she is hopeful. We can create change and we want to use these young people as the change agents. But the change may be long in coming when informed youths who’ve grown up with the disease and know so much about it are still passing it on to others.