When war gets in the way of treatment

4 December 2017

Cecelia Naponi is a 33-year-old mother of four children. She is a laboratory technician at Maridi Hospital in Maridi, a town in Western Equatoria state, South Sudan. She is one of thousands of people living with HIV who have been displaced by civil war that has been ongoing since 2013 in South Sudan. This is Cecelia’s story.

“After the death of my husband and delivering my baby boy, I was sick on and off. In 2010 when I was in hospital I asked to be tested for HIV and I tested HIV positive. Jaffer, my only baby boy among three girls, was also diagnosed with HIV. I was started on HIV treatment right away because I was very weak. After one year, HIV treatment for children became available and Jaffer was started on treatment too.

My parents hated me. I was abused every day. There was no joy because I let my parents down. They were ashamed of me and did not want to see me; neither did the parents of my late husband. I was left all alone with my children.
In 2013, the first civil war broke out but it was not very serious for us. We managed to stay in our villages without taking refuge elsewhere. I could call the doctor whenever some other women and men living with HIV needed to refill their HIV treatment.

The most terrible crisis was that of 2016. It took us by surprise. There was killing, looting and raping by the government soldiers so everyone had to run for their lives into the bush. I had treatment for only one week. My boy did not have medicine because the paediatric HIV treatment was out of stock. In the bush there was no food, water, shelter or medicine for us. We were eating leaves and roots of trees for survival. Many children died of pneumonia and malaria. Every strong person moved to Yambio, the capital city of Gbudue State. I also moved slowly after staying in the bush for 16 weeks.

Finally I managed to reach Yambio with other people living with HIV. I was very weak. We went to the IDP camp2 which was far from town. Life was difficult and coming back to town to access HIV treatment was hard. At last I met one of my husband’s relatives and I was taken to their home. I went to the hospital five times for treatment but was I was denied because I did not have a card, even though they knew I came from the town which is under attack. Later, the networks of people living with HIV in Yambio and the office of the AIDS Commission helped us to get medicine. I missed my treatment for 19 weeks and my boy missed for more than five months. When he was finally re-started on treatment he was resistant to the antiretroviral medication. There was no other option for him but at least I had other options.

Food security was a real problem. More than 30 people living with HIV died because of lack of access to proper nutrition and medications for opportunistic infections, TB, malaria and others. My boy also died. It is a pain I live with every day.

Eventually when we heard that there was a bit of calm and order the Sisters from Maridi repatriated those who wanted to come back with them and I opted to come back.

I am now living back in Maridi. I have insisted on getting treatment for six months which I am not refused because I am working at the hospital. Many people living with HIV do not have that privilege. The current situation is not stable at all; in the last three months there were three attacks. People living with HIV continue to miss their HIV treatment.

Many people are now becoming resistant to the HIV treatment and children too are resistant. We cannot leave town by road and no one can afford a flight to access to HIV treatment. I am worried that if the situation does not improve more people living with HIV will die.”

2 IDP—internally displaced persons