Born with HIV: 30 years and still going strong

Susan, who was born with HIV, speaks of the pain she experienced as a child growing up with the virus, the death of her brother and her hopes for the next generation of young people.

Susan Nabukera (not her real name) was born in Nakaseke District in Uganda. Both she and her brother, Amos, were born with HIV. Thirty years on, Susan speaks of the pain she experienced as a child growing up with the virus, the death of her brother and her hopes for the next generation of young people.

“The most painful thing is when a mother gives birth to her children and they are both HIV positive. Managing my health and my brother’s was the most difficult situation that I passed through when I was young,” she says.

Susan was brought up by her father, as her mother died while giving birth to Amos, when she was two years old. “We could both fall sick at any time and our father reached a point where he gave up on us and blamed God for giving him children born with HIV,” she says.

“This was a time when treatment was rare and HIV meant a death sentence and curse to the family. People in the community used to call us bastards. There was not much advocacy or information about prevention methods, unlike today. At the time of my birth, HIV was not common and no one considered taking a test before marriage or during pregnancy. The biggest challenge I encountered is swallowing tablets every day – the anti-retroviral drug in the morning and two pills in the evening. All my school career they used to call me medicine girl. The drugs weaken the body because they are strong and, if your immunity is already weak, you can easily give up taking the medication.”

Pain and hope

Amos died when he was just 15 years old. With tears in her eyes, Susan recalls the excruciating pain she still feels, as her memories are still fresh. “My brother died when he was 15, saying he could not continue with this life. But he told me to battle till the end.”

Despite her traumatic childhood, Susan has proved that it is possible not only to survive but to live positively with HIV. She now has a child of her own. “I have a baby girl of two years with no HIV,” she says. “I was enrolled on programmes to prevent and eliminate mother-to-child transmission of HIV. As a young mother, I know how to live a positive life because I have been through a lot and I know information on nutrition.”

Susan has benefited from several programmes in Uganda which have been scaled up to reduce new HIV infections. Among HIV positive pregnant women, the focus has shifted to the elimination of mother-to-child transmission, rather than simply prevention.

Fewer babies born with HIV

Professor Vinand Nantulya, chairperson for the Uganda AIDS Commission, reveals that Option B+, Uganda’s elimination of mother-to-child transmission programme, has registered tremendous progress. Less than 10,000 babies were born with HIV in 2013 compared to more than 27,000 in 2011.

He says: “Less than 5,000 babies by 2015 will be born with HIV because we have seen what it takes to achieve zero infections. Option B+ has worked tremendously because every woman who tests positive for HIV starts on anti-retroviral treatment despite her CD4 count [the level of infection fighting white blood cells in a patient’s blood].”

The UNAIDS Ugandan progress report 2014 also shows an overall reduction in new HIV infections from 162,294 in 2011 to 140,908 in 2013.

Setting the new agenda

Susan now champions the rights of young people living with HIV. “I work with Naguru teenage centre as an activist for young people living with HIV. We identify them, counsel them and make follow-ups in their communities. We engage them in various activities and help them manage their own health,” she says.

Moving on from the Millennium Development Goals, which end in 2015, activists argue it is crucial that young people are consulted about issues that affect them.

Gracias Atwiine, advocacy team leader for Link Up project, says: “The post-2015 development agenda provides an advocacy space for young people and people most at risk from HIV. While the Millennium Development Goals were general, the new agenda is detailed and involves young people. If we are to ensure that no one is left behind, measures will be needed to reduce the discrimination facing all marginalised groups, to ensure their meaningful participation in the development and implementation of health strategies.”

Susan agrees: “Responding to HIV is key for a sustainable future. The post-2015 agenda focuses on youth and guides us on how to protect ourselves and stay safe. I think it will enable us to decide which option we should take in the fight against HIV in young people