Barbara Kemigisa uses he own story to get youth to test and treat
Kampala, Uganda | FLAVIA NASSAKA | Barbara Kemigisa was sexually molested when she was just six years old. At 17 years, she discovered she was HIV positive. She is now 31 years old and has two children; an eight-year old who is HIV positive and nine months old who is negative. Amidst her topsy-turvy life, she has curved out an unusual mission – ensuring youth test for HIV and that those who are positive get started on ARV immediately and stick to them.
“When I get clients who tested positive and need treatment I refer them and follow them up to make sure their journey with medication isn’t lonely. It can be horrifying starting those tablets without motivation,”she says. Her voice is soft but laced with sharp eagerness. She likes to smile even when telling a sad story.
On the early morning we met, Kemigisa was just beginning her daily round in the low income settlements of Bwaise, Kikumikikumi, and Kazo on the northern edge of Makerere University in Kampala city.
Kemigisa walks the dusty road looking for youths and children to convince to test. Her improvised role is counselor but she sees herself more as an inspirational figure to youths living with HIV. Through her organization; Pill Power Uganda, she advocates for youths and adolescents infected with HIV. Her focus is on early testing and staying on treatment. She has resolved to recycle empty ARV bottles to make beautiful artifacts such as chairs, photo frames, dustbins and flower vases which carry messages that break stigma and lure young people to start treatment. This initiative is what she calls Pill power.
After negotiating a maze of dusty roads, she stops at a house in a neighborhood called Nabukalu. It is an area that sometimes gets floods and some houses are abandoned. Kemigisa is checking on a four-year old who was recently started on anti-retroviral tablets from the syrup – Kaletra that had failed to lower her viral load. The mother is not in but Kemigisa knows where the life-saving medicine is kept because they discussed it with her. So she administers the medicine.
Kemigisa says she had promised to meet another client – a teenager in the same neighborhood but she could not because she had not “organized the package” – meaning the medicine pack. She is angry about the failure.
“It hurts when somebody finally understands that medicine is what makes a difference between life and death but at the end of the day they just can’t have it. It really breaks my heart.
“Sometimes a patient may fail to get that month’s dose and decide to give up but when you are a group there’s a way it’s easy for your voice to be heard,” she says.
Kemigisa has been joined by her HIV negative husband, Michael Katabazi and eight other friends; including popular standup comedian Kenneth Kimuli aka Pablo. The group aims to collect over 900,000 bottles – because it’s the number of people estimated to be on ARVs from treatment and care centers on a monthly basis. She has no specific figures of what they have collected so far, but reckons it is not even a quarter of what needs to collected. She says partly it is because Pill Power operates in a small area and not many youths have tested to know their status. Even those who have tested positive do not know where to get medicines. About 89,000 youths are estimated to be infected but do not know their status. This means they are not on life saving treatment and, therefore, are at risk of infecting others.
Kemigisa’s model encourages members to look out for such individuals. It’s made in such a way that anyone can form a Pill Power Unit. All they have to do is encourage 10 other youth to test and have any testing positive to be initiated on treatment.