“Why I am not scared of knowing my HIV status”

As UNAIDS and UNICEF launch All In! on 17 February, a global initiative to reduce the unnecessary deaths of adolescents living with HIV, James Odongo reports on the realities faced by teens in Uganda.

James Odong, citizen journalist from the Key Correspondents network

Nine months ago, Sarah Acibo, 16, was a typical Ugandan adolescent full of life and nursing grand ambitions about a comfortable future. But then her dreams were shattered. She became pregnant as a result of sex with a man who lured her with money. Sitting under the shade of a tree outside the Magoro Health Centre laboratory in Katakwi District, Sarah is now waiting for the results of an HIV test. “Before it was difficult to get a test for HIV,” she says. "The only place in Katakwi we could get these tests was very far away. But now we have this lab here we can come and find out immediately.” Sarah says she isn't scared of knowing her status. "I need to know," she says. "If it is positive then I need to start coping with my HIV status. I need to be healthy and make sure my children grow up healthy."

Changing attitudes

Sarah believes attitudes towards HIV among the adolescents in Magoro have changed for the better since more people started being open about their status. "When I was younger, maybe ten years ago, it was a big problem," she says. “At first people just thought you were going to die, we were all scared about being near a person who was HIV positive. Nobody would greet you or share anything with you. But now people stand together. They share cups and plates. There is awareness of what the disease is.”

But many adolescents still have problems facing the fact they might have the virus. Abraham Emaasit, laboratory technician at the Magoro Health Centre, says: "We are seeing more young men than I expected, but generally it is the young women who get tested," he says. "It's because they feel more responsible. Also mothers now get tested automatically when they become pregnant so it has become normal among women to acknowledge your status, whereas for men it can still be taboo."

Low disclosure rates

A study by The AIDS Support Organization Uganda and the Population Council showed that over 60 percent of adolescents living with HIV who were in relationships had not disclosed their status to their current partners. Almost 40 percent were in relationships with HIV negative partners, while 20 percent had HIV positive partners but still had not disclosed their status. Although Sarah says attitudes towards people living with HIV have progressed, not all communities are as accepting. For many young people, the failure to disclose is still fuelled by fear.

Esther Adeke, 17, knew she was born with the virus but, afraid of rejection, she did not tell her boyfriend. “We used a condom but he always complained, so we abandoned the condom and I got pregnant,” she said. Although he did not contract HIV from her, they broke up. While stigma and discrimination remain prevalent in our society, disclosure of an HIV positive status is always going to be a complex, difficult and very personal matter. It involves talking about a potentially life-threatening and transmissible illness. Choices people make about this are not only personal but vary with different age groups, contexts and partners.

Rising infections

We urgently need to ensure that adolescents living with HIV are supported to find out their status and can access effective HIV treatment and quality care programmes. For anyone unconvinced about the urgency of this issue, consider this: the failure to provide effective HIV services for adolescents has resulted in a 50 percent increase in reported AIDS-related deaths in this group worldwide, compared with the 30 percent decline seen in the general population from 2005 to 2012. The latest statistics from the Uganda AIDS Commission show that new infections are once again on the rise. Around 130,000 Ugandans are infected with the HIV virus every year and the government's new national HIV/AIDS strategic plan bleakly predicts that the number of HIV positive Ugandans will continue to rise. The All In! initiative aims to reduce new infections among adolescents by at least 75 per cent by 2020. These are ambitious targets and services for adolescents will need to drastically improve to turn back the tide of rising infections. For a start, it’s vital to give adolescents better information to encourage them to test for HIV. And there is a clear need for separate health facilities, so young people are not put off from testing by the fear of being judged by adults.

Sarah’s options

So what are Sarah’s options if her test comes back positive? The clinic at Magoro does not provide an antiretroviral treatment programme, so she would have to make the long journey to Soroti District Hospital to get her CD4 count taken (the blood test which measures the immune system's strength, which HIV attacks), and to receive treatment. For now, Sarah doesn't have to worry as her test comes back negative. She has a good attitude to staying healthy, saying: "I will keep coming back for tests. It's always better to know as soon as possible."

James Odong lives in Uganda and is a member of the Key Correspondents network which focuses on marginalised groups most at risk of HIV and people living with HIV, to report the health and human rights stories that matter to them. The network is supported by the International HIV/AIDS Alliance.