Under a scorching mid-day sun in March, Wulak Boi limps in company of his caretaker to the antiretroviral therapy (ART) ward before he drowsily plants himself at one of the seats near the entrance.
The 29-year-old soldier is visibly pale and underweight with red-dry lips. Boi, who can hardly speak, keeps sipping a red herbal liquid that his relative recommended to help him “gain blood”.
The scene is Juba Teaching Hospital, ART Center in South Sudan.
“He came yesterday and has taken a whole month without taking medication because being on the frontline, he could not get food [which is necessary] to take medicine,” his caretaker says, adding that the soldier had been flown from Abyei State – 630km from the capital of Juba – after his condition worsened.
Over four million people in the world’s youngest country have been left severely food insecure since December 2013 when a civil war broke out between president Salva Kiir and his vice president Riek Machar.
The food insecurity has mainly come as a result of high mortality rate of potential and established farmers and displacement of people who are always on the run. Like Boi, other displaced civilians in the country go through the same predicament as they struggle to take the daily drugs on an empty stomach, leading to poor adherence and faster death of HIV/Aids patients compared to those who have regular, nutritious meals.
Having lived with HIV since 2004, Ceaser Gideon Yugu’s experience of surviving on medication amid hunger is heartrending. He struggles to secure food to be able to take his prescribed medication of four tablets on a daily basis.
The 50-year-old says his struggle is even worsened by the fact that he has to take the drugs at different time intervals: two tablets in the morning and evening yet it is hard for him to have two meals.
“At times I am forced to take water [when] there is no food because I stopped working,” says the former security guard, who has since been laid off because of his poor health.
The patients say despite the constant supply of drugs, they find it had to travel several kilometres away from their homes on an empty stomach to collect the medicine supplied quarterly, which makes them to skip appointments with their doctors.
Yugu says he has on several occasions missed out on collecting his drugs from the health facility, which is over 6km away because he cannot raise transport fare.
Dr Benjamin Lems Lokio, the officer-in-charge of the ART facility, says with over 9,000 patients under their care, majority of whom are adults and about 500 children ever since they started supplying ARVs in 2006, poor adherence to medication by patients has been a great challenge.
“With the clashes, we are losing a big number to follow-ups who are displaced internally, while others are killed. Others are refugees now. Others come but with difficulty,” Dr Lokio notes, explaining that this has led to high preventable mortalities as many return for medication when it is too late.
Dr Loko says poor adherence has given way to more new infections since it keeps the patients’ viral load high, meaning they can easily infect their partners, especially in a country where some cultures don’t believe in using condoms.
Currently, the health facility tests between 100 and 200 patients monthly. Of these, about 80-120 test positive compared to the average number of only 10 people who would test positive when the facility had just opened.
“Of course, people are dying. At the hospital alone, we have lost about 300 since we started the programme,” Dr Lokio narrates.
“And with our clashes, any lack of food can be bad to death. We would not have lost those patients if there was enough food supply,” he adds.
The effect of having the drugs on an empty stomach is that it reduces their effectiveness and worsens the side effects like vomiting, headaches , shivering heart problems that one can even collapse, which makes adherence even more difficult, explains the doctor.
The South Sudan government is also yet to start injecting money in HIV/Aids treatment as the facility’s budget for ARVs entirely depends on finances from Global Fund, an international financing organisation that aims to attract and disburse additional resources to prevent and treat HIV/Aids, tuberculosis and malaria.
Other factors leading to the high prevalence of HIV/ Aids in South Sudan, according to locals interviewed include; the country’s history. In 2005 ,when relative peace was restored in South Sudan, the country opened its doors to business with neighbouring countries. Many business people flocked the country, including sex workers.
Residents say the vice was later worsened by the civil unrests that started in 2013, which separated partners as men resorted to sex workers for sexual satisfaction, while rape cases increased in camps where people sought refuge.
However, despite the numerous challenges facing them, the patients have formed an association called the South Sudan Network of People Living with HIV/Aids (SSNeP+) as a coping mechanism. The network operates within seven states with a membership of 25,000. According to Lole Laila Lole, the programme coordinator of SSNeP+, no HIV prevalence survey has been conducted since independence and the figures are based on maternal statistics.
“When the war came in 2013, people living with HIV were most affected, with more than 3,000 people moving to neighbouring countries. People could not access food in their camps and bushes where they went to hide,” Lole says.
According to lole, others could not afford to move long distances and even some of those who made it to the health centres are not able to interact with health workers due to congestion.
Language barrier, he says, is also another challenge which makes it hard for the patients to reveal the regimens they were taking before (the displacement). Some of them end up being switched to other regimens, which they have already resisted.
The SSNeP+ leaders also accuse their government of giving more priority to security at the moment and neglecting the refugee camps and their demands like drugs.
As an intervention, the network has since established a tracking team to go to the different camps (for internally displaced people) and check on for people living with HIV and encourage them to re-organise into groups so that one person goes to pick the medicine and also encourage each other.
This story was done in partnership with the International Women Media Foundation (IWMF) a Washington, D.C-based organisation working internationally to elevate the status of women in the media.
Access. According to the 2016 UNAIDs statistics, there were 200,000 people living with HIV in 2016 among whom 10 per cent are accessing antiretroviral therapy, with about 16,000 new infections and 13,000 Aids related deaths.
Feeding. However, the patients say they need nutritional support at the moment when the whole country is in a hunger crisis.
Interventions. South Sudan Network of People Living with HIV/Aids (SSNeP+), which also create awareness and counselling, as well as advocacy role have limited funding. Some funders use partners, which creates a lot of bureaucracy yet the funding has since been cut.
“Partners are there but also have their mandate. Opportunistic infections are [common] but are not catered for by funders and government hospitals. One has to go to private pharmacies,” Lole Laila Lole, the programme coordinator of SSNeP+, says.
Stigma. Stigma also remains another challenge and the policy on protecting people living with HIV has been pending for the last 10 years since it requires citizen participation which is currently difficult due to instability.
Population. South Sudan has an estimated population of 12.6 million people and 2.6 per cent of whom have since fled the country.
First Published by The Monotor